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The Torture That Is MS-Related Chronic Pain

The Torture That Is MS-Related Chronic Pain

I’ve been writing about my journey with multiple sclerosis for a while now. I’ve discussed a wide range of issues that I’ve dealt with over my many years with the disease. I have, however, held off on devoting an entire article to one of my worst symptoms until now. While I’ve made mention of it before, chronic MS-related pain is a symptom that I encounter every single day. It’s one that is hard to find relief from and it’s one that I know has a profound impact on who I am. For good and for bad, chronic pain can change you.

I had no idea pain was an MS symptom

When I was diagnosed some 17 years ago, I had no idea that pain could even be an issue with MS. Despite having a grandfather with MS, I found I was naive about a lot of the issues that can come with MS. As far as pain was concerned, I figured that most pain would come from the number of falls I’d take. I also didn’t start out with pain as a symptom, not until about 14 years diagnosed did I really start to suffer from it. And suffer I have; I never expected the kind of intense pain that seemed to suddenly appear out of nowhere. It’s as if someone has a voodoo doll of me somewhere and is really working it over with an assortment of torture devices.

Pain can encompass a number of things

I keep saying “pain” without really explaining it; I feel many of my colleagues have done a great job talking about pain in the past, so I don’t want to simply rehash what’s been said. I’ve also talked before about my issues sleeping with pain (what I like to call Painsomnia). With MS, pain can really encompass a number of things: Trigeminal Neuralgia (a stabbing pain in the face), the MS Hug (a tight, constricting pain in stomach and sometimes chest area), Lhermitte’s sign (an electric shock type sensation up your spine when you tilt your head down), Spasticity, Paresthesia (numbness and tingling), and Dysesthesia (burning, stabbing, or tearing pain). Now that we’ve gotten some official and crazy looking words out of the way, I’ll tell you that my personal experience deals mostly with the last three of those. I’ve already done a full post on spasticity, so I’ll try not to go into too much more about that. In addition to that spasticity, I am plagued by numbness/tingling sensations and brutal burning and stabbing pain.

Numbness

I routinely have the entire right side of my body feel numb (sometimes just a leg or arm or hand or even face). It could last an hour or it could last an entire day. Often, it feels the same way your arm feels if you’ve slept on it wrong. Imagine having that feeling for an entire day and having it be an entire side of your body. It’s not pleasant. Being comfortable at all can be difficult. It also has a big effect on pretty much any activity I do. I’m more likely to fall because my leg won’t be moving right (or I can’t feel that it’s moving right). I’ll often drop things because my hand will be numb. I can’t even begin to tell you how many things I’ve broken because I’ve tried picking something up with my numb hand or worse, had the numbness suddenly come on while holding something breakable. Between the falling and my hands giving out, every time I carry a glass or a dish of food or anything spillable/breakable, my wife looks toward me with concern and usually offers to help. Most of the time it’s needed, but I’m also an extremely stubborn person so I inevitably still end up spilling or breaking something.

Burning and stabbing sensations

Perhaps the most agonizing symptom I have is the burning and stabbing sensations. I am thankful not everyone with MS gets these, because it really does feel like a punishment being handed down for some terrible thing I’ve done in my past. Primarily affecting my legs (though occasionally my arms will be hit as well) most of the time, it feels like I am burning from the inside out. Some days it’s a mild burn or even just achiness, but many other times it’s an intense searing pain. I feel like I’m being burned at the stake at times. It can last from minutes to even a full day. It’s just awful, there’s no word that truly can explain how awful it is. I’ve had my share of pains in my life. I’ve suffered numerous broken bones (including breaking my hand/fingers at least eight times), several bad cuts (at least one right to the bone), torn a hamstring, absorbed some vicious hits in football and hockey, a couple of concussions, torn my meniscus, chipped a bone in my knee, a bad bout of meningitis, a severe burn that resulted in hospital time, and have had some pretty bad falls from MS (one recent one through a glass window). I like to think I have a good pain tolerance, but nothing has really compared to this burning sensation I get now. It’s a level of pain I never imagined existed and I now deal with it on a daily basis.

Electrical shocks

In addition to all that, I will also occasionally get a quick, sharp, electrical shock-like pain that comes and goes out of nowhere. We’ll be on the couch watching TV and I’ll yell out because it comes on so unexpectedly. Even if it’s just my wife with me, I still feel a tad embarrassed for letting out a yelp like that, but I can’t help it because it’s so sudden. I will also occasionally experience some sensitivity to my skin, where if you touch me, it hurts.

The impact of living with chronic pain

Having these pains and sensations day in and day out can have a profound effect on a person. I know it’s changed me, even if I’m not entirely sure how. Obviously, it can cause some moodiness and even some anger. I often feel like I’m being punished. I never felt that way about MS until I started having really bad pain, so I find myself wondering what I did, even though I know that’s not logical. Consistent pain can really mess with your head. At times, it’s hard to think clearly (add to that MS Cog Fog and as a former engineer, I feel pretty useless). There are many moments when I just sort of “check out” on whatever is going on around me. I’ll be in a daze because my mind is consumed with trying to understand and deal with the sensations my body is experiencing. All of it is made even worse because it’s invisible to everyone else. You end up living with this fear of skepticism, this concern that your friends, family, and even doctors may not believe you. If they can’t see it and they haven’t experienced it, they will never truly understand. That’s a tough thing to deal with and probably why I have such a connection to others I meet who also have MS.

Finding relief

Can there be a good thing that comes with having to deal with pain so much? I’m not sure. I do appreciate things more. My wife will rub my legs (which helps a bit with my spasticity) and I swear every time she does it, it feels like the best thing I’ve ever felt. So any sort of good sensation or kind of relief at all feels even better to me. I’m much better at acting, too, since I think I do a pretty good job of not showing how much pain I really am in most of the time. I suppose I like to think it’s all made me a stronger person too (though at times, I feel weak when I bring up my pain).

I’ve already written a lot here so I’ll tackle my experiences with trying to treat pain in a future article. Thank you all for reading. If you don’t have MS, please consider all this for those that do and always remember that just because you can’t see someone’s demons, doesn’t mean they are battling hard against them. If you do have MS, I’d love to see some comments about your pain experiences.

– Devin

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Tess
    5 months ago

    I absolutely love this. My family has the issue of rolling their eyes when my legs begin to shake and me saying I’m burning from the inside. I can see them thinking I’m just trying to get out of something or wanting attention. They don’t understand this disease is crazy and mysterious, it’ll happen at the worst of times. Thank you for sharing!

  • Devin Garlit moderator author
    5 months ago

    Thanks so much @Tess, I hope you can share this with them and help them understand!

  • beedoo
    6 months ago

    Thank you for sharing. Was diagnosed 2 years ago and never thought “pain” would be one of my symptoms… but dang was I wrong. I do feel like the pain is punishment for something (although I know it’s not) I have that tight band feeling around one side of my torso but comes with a sharp shooting excruciating pain that comes back around every time I finally almost fall asleep. So thank you again for sharing so as I lie her wide awake now I know I’m not entirely crazy…

  • Devin Garlit moderator author
    6 months ago

    Thanks @beedoo, you are definitely not crazy! I also never thought pain would be a symptom of MS, I too was wrong.

  • Meemaw
    7 months ago

    Yep all of the above I describe it as how it feels when you hit your funny bone except mines a funny body and it doesn’t stop

  • Devin Garlit moderator author
    7 months ago

    Thanks @meemaw, that’s a pretty good description for some of these sensations!

  • Ninjamomma77
    8 months ago

    Hey Devin,

    I always enjoy reading your posts as you have a way of hitting the nail on the head. My MS was diagnosed by fluke and I didn’t have my first exacerbation until years later.

    Fast forward 13 years later and I am experiencing daily pain and not always the same kind or location. I tell people I am allergic to pain because I don’t like to hurt.

    However, my body doesn’t give me much choice but to face what is in front of me.

    Therefore, I live my life day by day and do the very best I can!

  • Devin Garlit moderator author
    8 months ago

    Thanks so much for sharing @Ninjamomma77. Sadly, for most of us, we have nothing to do but face and deal with our pain as best we can. Those with MS are some of the strongest people I know!

  • Diane79
    9 months ago

    Hi I was recently diagnosed in April. They think I have had MS a lot longer. I have been having a lot of severe pain like you. The electric shock feeling just started recently.
    God Bless you for sharing. Makes me feel less alone

  • Devin Garlit moderator author
    9 months ago

    Thank you Diane79! Many people likely have it much longer than when they were diagnosed. I know when I look back, I start to wonder if this and that were symptoms. You definitely aren’t alone!

  • Shelby Comito moderator
    9 months ago

    Thinking of you, @diane79. Thank you so much for reaching out and sharing. You are certainly not alone. We’re here for you! Best, Shelby, MultipleSclerosis.net Team member

  • LBkaiser
    10 months ago

    Hi Devin, I know how leg rubs feel so good. Have you checked out the msgym on Facebook? Trever Wickens is a pt from Colorado. He uses releases to help with pain, rib hugs, neck releases. He uses isolations to help body mind connection. You don’t have to join , it is free on Facebook. I joined @$30.00 a month for a more personal access. I think you can also see him on YouTube. Does medical marijuana help you at all?

  • Devin Garlit moderator author
    10 months ago

    Thanks for the tip LBkaiser, I will check it out! I have had some great success with both marijuana and CBD Oil:

    https://multiplesclerosis.net/living-with-ms/marijuana-the-story-of-a-skeptic-turned-believer/

    https://multiplesclerosis.net/living-with-ms/cbd-hemp-how-helped/

  • DeniseR
    1 year ago

    O M G ! I also have had MS 17years! You sound just lime me.(to a tee) I felt as if I was the ONLEY one!! Now I know I am not crazy or faking it!! As ny Drs and family think! Thank you so much for writing this! I feel so up lifted and FINALY have hope again. I was ready to give it Up, BUT NOT KNOW!! I will fight knowing I’m not crazy!!

    THANKS SO MUCH
    Denise

  • Devin Garlit moderator author
    12 months ago

    Thanks you DeniseR! You are most certainly not alone, it also sounds like you could benefit from seeking a new doctor, perhaps one that specializes in MS.

  • GoddessTerra323
    1 year ago

    I’m only 18 years old and about to start college for mechanical engineering. I haven’t been diagnosed with MS yet because they just found the lesion on my MRI and haven’t done any other tests yet. But about 3 weeks ago I got optic neuritis in my left eye and my vision went completely black for almost a week and that was when the doctors started to think I had MS so they did the MRI right after and told me theres over a 75% chance that I have it but they need to do more tests which probably won’t happen for 2 more months because the neurologist is booked. For the past 3 weeks I’ve been having constant burning, tingling pain in my legs and on-off in my arms and my whole hand and feet go numb sometimes. I was driving home earlier and I had a really bad burning pain in my entire left hand and I just stopped using it for 5-10 minutes until it stopped hurting. I have to put all my weight on the hand rail when walking up the stairs and it takes me about twice as long as my family to get up a flight. When I’m walking with my mom I have to tell her to slow down sometimes because I can’t keep up with her. People around me have to help me pronounce easy words sometimes because they just come out wrong and I can’t say them right even if I try 5 times in a row. Last night I started having shooting pain in my teeth and jaw so bad I was crying and had to take a painkiller to fall asleep. But it just made it into a dull pain that stayed for an hour or more and still didn’t go away by the time I fell asleep. I’m not that scared by it as I probably should be because I know stuff like this happens sometimes and I’ve had so many medical problems and 2 MRIs and a surgery in the past before these problems so I’m used to it. I just don’t know how to console my mom having to watch her daughter go through this everyday and not being able to do anything and being scared I might not be able to have a normal life or concentrate at college. The hardest part for me is how other people view me now that I can’t do things that I could before.

    But thank you for posting your story with MS. It does get hard for me having this pain that no one can see while I’m this young. My parents want to get a handicap permit for me so I don’t have to walk a long way from the general parking lot to my college classes and everytime I get out I’m gonna feel so embarrased because on the outside I look like a healthy young girl and no one around me knows that walking alot causes me a lot a pain and fatigue because they can’t see it. But it does make me feel a little better knowing that I’m not the only one.

  • Devin Garlit moderator author
    1 year ago

    Thank you GoddessTerra323! It sounds like you’ve got a fantastic attitude that will serve you well if it does turn out to be MS. (Also, I started college as a mech-e major too! Though eventually got my degree in physics and worked in software development instead) Not that there is ever a good time to get diagnosed with MS, but if there were one, it’d be now. There a lot of options with regard to disease modifying medications, with new breakthroughs coming out all the time. Catching it you and getting started on a treatment sooner rather than later can be very helpful.

    As for you mom, well, I’ll be honest, I’ve had the disease close to 20 years (being diagnosed in early college) and trying to console my mom and make her feel better about it is still a challenge! You can tell her though, that this is a time of great hope for MS (and many chronic illnesses). While we may not be close to a “cure”, we have many options to slow and manage the disease, more than we’ve ever had. Being diagnosed with MS now, will be different than be diagnosed even 5 or 10 years ago, the breakthroughs have been that impressive. You’ll be in good shape, just keep advocating for yourself with your doctors, and never be afraid to see a new one or to seek a different opinion. That’s really the key to getting the care you need!

  • katbow420
    1 year ago

    I also use medical marijuana for multiple MS symptoms. I no longer take any prescribed pain meds! I hope people have an open mind to medical marijuana. There are multiple ways to use marijuana from vape pens to edibles. It’s worth a try!

  • sharenelewis
    12 months ago

    I’m interested in learning more about this

  • Devin Garlit moderator author
    1 year ago

    Thanks katbow420! You highlight one of the key things I wish more people understood, that there are a variety of ways to use it other than smoking!

  • Dorry
    1 year ago

    Hi Devin,
    I am so sorry to read your account of pain and what you are going through. Much of what you say is how I feel and I too experience such burning in my legs I am beginning to feel depressed because I haven’t been diagnosed with MS but arthritis. I have been complaining to my G.P. for over a year now and she offers me pain medication I can’t take because I suffer serious side effects from the meds. I am frustrated and fed up. Discovering this blog yesterday has been of immense support and comfort knowing I am not alone. There is a disease out there with my symptoms only problem is I haven’t been diagnosed yet. I am finding life difficult now because I can’t stand up for long. I have to find a seat. I am housebound and can only go out for 1hour once a week to do my banking. When standing in the bank my legs are so tired I start to feel tired and want to sit down. I then have to rush home and sit down before I do anything. What a way to have to live. My whole body is tired but my spirit is strong which keeps me going. I can’t do gardening now or exercise. I get tired watering the garden. I only do 5 mins and back in for a sit down and have to keep pacing myself with everything I do. I have also had to give up going on holiday because I can’t walk. My legs feel like lead and so heavy I trip going up stairs because I can’t lift my feet high to go over the step. I am now using 2 walking canes to give me the support. But when the tiredness starts that is also when the pain kicks in. I use a TENS machine on full power to take the edge off the pain but this takes so long to work. I also have the pain in my finger joints. In fact full body pain. I have ankylosing spondylitis, but I haven’t known of this condition to cause the burning sensation I get in my legs and ankles. Just like you I also get this sudden stabbing pain in my foot and wonder what is going on. Like as if someone had a voodoo doll and was poking pins in me and hot pokers. My legs are so very painful it is unbearable pain. My G.P. asks me to describe the pain. Often the pain is different. I also get like an electric voltage in the centre of my food radiating up my leg to my knee and it takes a long time to go. Mostly from standing. This pain is the worst. I don’t know if it is sciatica or what it is. But it is very debilitating.
    I remember visiting a pain management clinic but this did not help with the pain I was having. Of course we try to use aids to help us as best as we can, but at the end of the day we are still left with the pain no matter what we do. I put a memory foam pillow between my knees every night. I cannot sleep without this as the pain is severe. I can’t get comfortable. I am wondering if massage would help. It is so expensive, but I may explore this as a 3 times a year treatment to help myself feel better as living with chronic pain wears one down. I am starting to become moody and irritable. Pain definitely disturbs one’s personality and alters this.
    Thanks for sharing Devin and I hope that life starts looking up for you and us all and I hope to hear from you again and keep blogging as this is our only outlet when life is tough

  • Devin Garlit moderator author
    1 year ago

    Thanks so much for sharing Dorry, like you, while I’d never wish it upon anyone, there is something comforting in know that others can at least understands what it is like!

  • AUgrl
    1 year ago

    So well said Devin. I could not describe my pain any better. I was just diagnosed in March and am still in the learning process on pretty much everything. Thanks do much for sharing your journey.

  • Devin Garlit moderator author
    1 year ago

    Thanks so much AUgrl! Appreciate you reading and taking the time to comment!

  • MevsMe
    2 years ago

    I feel like u just described my life but I do t have a spouse. For so long now I’ve just given up on finding some one because of everything that is wrong with me. Along with the MS I also have Fibromyalgia, arthritis and just 3 mo the pot up on my 2nd back surgery. I have all this pain and they are sending me to pain mgmt which isn’t until March. My extremities go numb all the time and my left foot is just completely numb on the bottom now for about 2-3yrs. The pain right now is unbareable but I take the pain pills they’ve given me. I wish that my state would legalize medical marijuana because that helped. When I moved back here its wasn’t that great and didn’t help so I got on pain pills. I just want the pain to go away or somehow be manageable. Thank u for sharing Ur story. I cried. I’m sorry that Ur going thru this as well. I hope u find a way to make Ur pain manageable too.

  • BarbaraBuchanan
    2 years ago

    Thank you, Devin, for sharing your experiences. I enjoy reading other’s stories at they often help me find better ways to describe what I am feeling to others without MS (doctors etc)
    In the couple of years, I am experiencing more and more of the burning and stabbing sensations. The burning is much like have a severe sunburn UNDER the skin. I haven’t found a way to treat it yet, so use the “Grin and Bear It” approach!
    In any event, I wanted to thank you and let you know that there are many of us who do understand. Take care.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much BarbaraBuchanan! I always hope that whatever I write can be used by others to help explain themselves to friends, family, doctors, or whoever. It can be difficult to explain the sensations and experiences we have.

  • SweetSunshine
    2 years ago

    Hi Devin
    I read your story about your MS Related Pain. And trust me “I Get It”
    I was Diagnosed in 2011 and also explained that it was most certain that I had been suffering with MS and it’s Ugly Gifts for several years. Prior to my actual Dx I had been experiencing weak legs, RLS was my PCP Dx no matter what I had brought to her in my appointments. Numbness-Burning-Stabbing Pain-The Hug-Falling-Short Memory issues- being in the Medical Field and seeing a lot of patients each day, the option of forgetting what I was doing or needed to do Next was not an option. As my symptoms progressed I found the walks that my sister and I took almost nightly or at least every other night ( we were trying to stay in shape and I was in need of a bit of weight loss) became much harder to tolerate. I would say to her that we had walked long enough because I knew That I also had to walk back the same distance and I would become very concerned that my legs might not allow me to do so. Not being Diagnosed at that time my Sister would insist that I was a wimp and just being lazy, and continue with the verbal insults the rest of the way back. And tell me that I needed to toughen up. After about a month of her non stop “Tough Love” I found myself lashing out at her and demanding that if she could feel what Im feeling she could understand. To which she replied.
    WHAT EVER LORI. That hurt so much. I decided that it would be best to walk by myself if I needed to walk. About a week later I thought that riding my bike may be a good option. My sister had called my cell phone and asked what I was doing and I told her What I was doing, shortly later she showed up on her bike and suggested we try to ride at least 15 Miles, I To this day still don’t understand why I let her talk me into this. But I did, I guess I didn’t want her to assume I was lazy or a Wimp. About a mile into the ride I turned a corner and fell off of my bike and it took about 5 minutes for me to get back up and on my bike within 5 minutes I fell off of my bike again. And (go figure) she insists i must have been drinking. I was so outraged that the Anger I had running through my body got me right back up on that bike and I rode as fast as I could to just get home. By the time my Driveway was insight I could feel the tears running down my face and my whole body was in such severe pain, that I couldn’t make it into the garage. My sister kept on riding to her house. I laid in my driveway for about 10 minutes until my Husband found me. We made an appointment to see my PCP The next day. And again The Dr. Insisted that it was Menapause and RLS. And felt that no further test were needed.(I was the only Nurse my PCP Had and I worked 50-55 hours a week) about a week later I had received some Bad news and apparently it was enough to take its tole on my Body. I ended up in the ER and one of the ER Dr.s Ordered a MRI upon getting the initial report he came in to discuss the MRI Results with us and explained that he was sure this was A Bad Flair Up. Due to my MS. And he wanted to be sure that I would follow up with my Neurologist within 24 hours and that he was going to treat the pain but insisted on admitting me for an overnight observation. You can Imagine the Look Of Stupid Shock on both of our faces, and the confused look on the ER Dr.s face as he realized that I had no idea what was going on. He contacted my PCP And inquired about recent chart notes. And soon after my initial Visit with my Now Neurologist so many questions were answered. I wasn’t Lazy or A Wimp. And The Severe Pain I had often complained about now had Validation. You can imagine how Bittersweet that was, to finally have validation on my Whimpiness and lasziness but than the shock of the Dx was quite a large pill to swallow. I pushed and pushed myself believing that if I had pushed myself this far that I could continue to do so. And for about a year I felt I did great. But I was wrong Apparently I was doing my body no favors and it was suggested by my Neurologist that It was time to take care of myself. My PCP/Employer was not Happy at all. And became very hard to deal with at work, which fueled Anxiety and led to a couple very close back to back Flair Ups. And that’s when Reality set in and I had to leave what I literally lived for, Helping People. Emotionally I was a mess for Months to come. And the pain was getting worse and worse. Thankful for an amazing Neurologist we were able to get this under control. Every Pain Symptom you described I myself have dealt with on a daily basis. So yes I understand your pain as you described in your Story. Added to my Dx were Fibromyalgia -Diverticulitis-Vertigo-. For years now I deal with much of what your feeling Everyone comments on how Great you Look. You don’t look Sick. And if I cancelled a previous engagement I often heard from someone else that I had offended a person because I lied about feeling sick and couldn’t make our planned lunch or Dinner date and that someone saw me the next day out and about and that I looked fine. So they knew that I just Blew them off. I’m sure many of us have been in that boat. I believe that the majority of us MS Reciepients do our best to not look sick or use our Illness as a topic of conversation when we’re actually out. Yet eyes are always on us and our appearance leads some to question our claim of actually having this Disease. As you stated, You can’t see the pain!!! So if we don’t sit and tell people ALL ABOUT THE SEVERE PAIN AND WHINE ABOUT IT OR LIMP AROUND OR ACT PATHETIC Than I guess people who are uninformed will continue to question the pain we have. I can only answer for myself but I have no Intention of making my Disability the Topic Of Conversation when I am out trying to socialize with friends or family.
    I’ve learned that the less I talk about my Dx with people the easier it is for me to deal with. After all if someone really Loves or cares about you, they will take a moment and read up on available information on MS and Truly Respect The Fact that your just trying to get through each day as best you can while still doing everything in your power to be a Contributating & Functional Member Of Society. And that my Friends is what gets me through each and every day of this ruthless Pain and Limitations. Wishing Strenght and Determination to All Who Deal with this Ugly Dx.

  • NancyJNB
    2 years ago

    First, I am sorry you are having to deal with MS and the pain that it has created.
    When I was first diagnosed with MS, there was an ongoing argument on whether MS actually caused pain. Those of us with MS knew it did. It just took longer to convince the rest of the world.
    Of all the MS pains I have experienced, the worse is Trigeminal Neuralgia pain. There is no way to describe this intense severe pain. There is a reason they call the nerve associated with Trigeminal Neuralgia, the “Suicide Nerve”.

  • Devin Garlit moderator author
    2 years ago

    Thank you NancyJNB! So many with MS have TN, it’s such an awful, awful thing!

  • Sandy
    2 years ago

    Yes, to everything, in the past year or so. Been to ER twice..Primary Care once..go again next week. Saw neurologist last week. Still no answer..On a muscle relaxer. I’m sleeping sort of…standing up for restroom. Let’s just say relaxers work to well…Many body mishaps. Falling a lot, broken toes, sprains, black,blue,scrapes,,cuts. all over from eyes to back, shoulders,legs. It’s been a n horrible year, My husband passed from CANCER, waiting,watching helpless feelings, shocking how a a man of 6’3″ can and 2 hundred pluses pounds. So,So thankful I was there holding him, after I yelled enough, I can’t,you can’t stay …Go home !! Thank You Lord…you all herd me…15 minutes playing so of our favorite tunes. Felt his hand let go. Shock,disbelief,and 1000 of feelings running me over and over. Tucked him into bed as usual. Walked out…was about half hour before I could call hospice.. It was over an hour before they showed…My time 10:28…we have many special moments that are 28, or have an 8. ..After hours of of paper work. Turned off everything, crawled to bed, passed out. Next day realized he passed 28 days short of our 38 years Anniversary….Had short, simple service. Realizing “28”… I told funeral home cremate, but hold him there…on October 28…38 year Anniversary I put him to rest,alone…that was our “28 added to 38 years. So I got that one last time..day… together,alone. Mine to cherish… “EIGHT…

  • Sue
    2 years ago

    I’ve been diagnosed for 17 years, Progressive for the last 9. My husband drove me, pushed me, swam with me and even cooked for me. I’ve been in a powerchair for the past 4 years.. he was a big guy and willing and able.
    6 months ago he was diagnosed with stage IV pancreatic cancer. He has lost 50 lbs and has no strength or energy.
    Just because he has gotten so sick and weak doesn’t mean m s doesn’t stop progressing. I need help transferring and he weighs about 145 lbs. I can’t get him or me a glass of water. I’ve been getting used to illness for a long time. This was not the plan.
    I am too disabled to go into an assisted living place. A nursing home would be inappropriate and very expensive
    I feel your pain because it is my pain.

  • DonnaFA moderator
    2 years ago

    Hi Sandy, I’m so sorry for your loss. Thirty-eight years is something so special in our world. He is always with you, intrinsically part of you. Please know that we’re here for you, and glad that you are here with us. <3 -Warmly, Donna (MultipleSclerosis.net team)

  • Toledo34287
    2 years ago

    I not only have MS pain; my lumbar spine is ridled with dessications, herniations, bulges, impingement. I had a steroid injections which threw me into a full blown exacerbation. I’m now addicted to Tramadol. My doc and others seem to treat me like an addict (which I am) But I’m NOT a junkie looking for a fix. I am a woman in pain day in and day out and YES drugs hhelp. They allow me to get out of bed. I can try walking. I can still drive, a little. When pain comes it’s a downward spiral: confusion, anxiety, bedridden.

    I know this country is cracking down the the epidemic of pain killers; but what about us? Are we considered abusers? I would love to be pain drug free but what “other” pain will I go through to get there?

    Sorry to whine, but pain is a serious part of MS and needs to be treated as such.

    As usual Devin, your article hit home. And caused pain. But I thank you for putting it in words.

  • lauraogle
    2 years ago

    Hello Devin! First I have to mention that you and my son share a name but his name is spelled with a y, Devyn. 🙂 Anyway, it was nice to read your story because I have been feeling so disheartened lately with my doctors discounting my pain. They keep telling me that my chronic pain and headaches are not symptoms of the MS. I have also recently been diagnosed with Occipital Neuralgia and Trigeminal Neuralgia which are new over the last 10 to 12 months. I also now have hip, thigh and knee issues but only in my left leg which they claim has nothing to do with the MS. I get the numbing in my toes and in my hands. I would be ok with them saying that none of these things are related to the MS if they would in turn give me a reason why they are happening. Instead they just say “I don’t know but it’s not the MS because those are not symptoms of the MS, well the leg pains could be but the other things definitely are not”. Those are the exact words from my last appointment. Ugg! Well again thank you for writing about your story because it helps people like me know that we are not alone.

  • Devin Garlit moderator author
    2 years ago

    Thank you lauraogle! I’m sorry to hear that, there are many doctors that don’t know what they are talking about. You really should leave your current doctor and find an MS specialist. Pain is very much an MS symptom. The National MS Society even has an entire section dedicated to it (https://www.nationalmssociety.org/Symptoms-Diagnosis/MS-Symptoms/Pain) I wish you luck and really hope you can find a new doctor!

  • Dragon Lady
    2 years ago

    Hey Devin – I always enjoy reading your articles. I am so sorry that you experience all of the excrutsiating pain that tears through your body. I have MS pain, but nothing like yours. My heart goes out toyou and all other MS patients that have to deal with that along with the other horrible symptoms that plaque us such asdepression and fatigue. These coupled with the type of pain you describe must be like living in a type “Hell” that well people simply cannot imagine. Devin, I will help you in the only way I can. I will pray for you, for some comfort, for some serenity, and for more courage and strength to deal with what you go through every day of your life. Take care Devin. My thoughts and prayers are with you!

  • Devin Garlit moderator author
    2 years ago

    Thank you Dragon Lady!

  • hello trudi
    2 years ago

    Thank you for the fantastic article Devin. I love your description of pain. I have always described it as “down to the bone” pain. It’s miserable. That, combined with the spasticity, is enough to break a person, but you learn to be tougher. I can hide my pain from most people, except my husband. He knows right away. Like what others have said, I never knew of the pain that was going to accompany it. I love your articles, I enjoy reading them and take a lot from them.

  • Devin Garlit moderator author
    2 years ago

    Thank you so much hello trudi! I appreciate you taking the time to share that 🙂

  • vflwwl
    2 years ago

    Thank you for a wonderful article! Your description is (sadly) perfect and I only wish more folks could understand this difficulty. Our daughter also suffers from pain due to brain surgery and these hidden diseases are easily ignored. I have been fortunate to find some relief in medicinal mushrooms. In fact my spinal stenosis has been positively impacted by it. I hope that you will be able to find some course of treatment that will help you as well. Blessings.

  • Devin Garlit moderator author
    2 years ago

    Thank you vflwwl! Sadly, pain is one of the most misunderstood symptoms, across numerous health problems.

  • Toledo34287
    2 years ago

    Devin, as usual your article is timely and poignant.
    You are able to put into words what so many of us feel. I truly , truly look forward to and appreciate your articles. Thanks for tackling the tough stuff.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Toledo34287, very much appreciate that!

  • TheUnreality
    2 years ago

    Thanks for the article Devin!
    I have yet to be diagnosed formally, but my doctors are pretty convinced, just waiting for MRI confirmation. I have been doing my research on MS and have come to the realization that I have actually had MS for 10+ years, just misdiagnosed, and I believe where I am at now is just a progressive step. I started experiencing old and new symptoms about a year ago and they have yet to stop, just get worse. Hence my current line of thinking, but I don’t hold the MD, so we will see.
    This article brought to light symptoms that I have that I may not have associated with MS. The “lightning strike”, as I call it, from the base of my skull to about mid back is a doozy. Its doubled me up more than once, which isn’t necessarily a bad thing, since it gives me an excuse to hide to tears that spring uninvited to my eyes. Luckily enough, the worst of it doesn’t last too long, just residual soreness.I have a few of the other types, and some back pain from injuries, but overall, I feel pretty lucky that the majority of my symptoms are sensory and not pain, well except for falling. That one caught me off guard real quick and might lead to some pretty serious pain, but we can burn that bridge when we get there.
    I know the future is uncertain, but your article shed some light on what it might hold. And its nice to get a personal account from you and all the commenters, rather than just a dry rundown from the doctors.

  • Devin Garlit moderator author
    2 years ago

    Thank you TheUnreality! It’s a sad reality that many people go misdiagnosed for a long time before they are told it’s MS. In addition to that, there are folks, myself included, who have sensations but never think much about them until finally diagnosed. When I look back now, I’m sure there were MS symptoms that I simply ignored. Now I realize I probably had the disease way longer than I originally thought. I think that is pretty common among us too. I’m very glad you found out site, it’s important to listen to our doctors, but nothing is quite the same as finding others who truly understand and have experienced the same things as you!

  • Lissette
    2 years ago

    Hi Devin,
    Thanks for the article. It explains a lot to people who don’t suffer from MS. I was diagnosed in 2002 and I was told of tremors and other symptoms but not the pain. Once I started feeling all this pain I thought maybe it’s just me not the ms. But when it wouldn’t go away, I started my research online. And I figured out it was the ms. But I know how you feel. I try not to complain all day about the pain that is there all the time. My nerves just take over sometimes and the pain intensifies when it wants to. It makes you look awkward in front of people you don’t know. I just joke around about it and they laugh. I really hope it gets better for you.

  • Devin Garlit moderator author
    2 years ago

    Thank you Lissette! There were so many things they never mentioned, or maybe didn’t even know, back when I was diagnosed in 2000. I never expected things like pain and cognitive issues from MS, but they are very much common issues!

  • pamelajoy
    2 years ago

    great article— so true– I worry and “act” against my tiredness, pain , and anger daily!

  • Stinx
    2 years ago

    Thank you for your article. The Voodoo explanation was perfect! I didn’t know it was a MS symptom. It’s is embarrassing when you’r having a conversation and you yelp. I get the strangest looks. I just tell them my mother-in-law has her voodoo doll out. Makes them laugh and takes their attention away from me as I stand there getting repeatly stabbed.

  • Devin Garlit moderator author
    2 years ago

    Thank you Stinx! I’ve yelped in front of groups of people so many times at this point! Hmmm, now that you mention mother-in-laws, I’m thinking that might be my actual cause 🙂

  • slamm321
    2 years ago

    pain is one of many symptoms I have and I have meen through many of the things you talk about. My biggest pain has been neuropathy which manifest like a feeling of a full body sunburn. When I’m not on a ton of gabapentin, it can feel as bad as a second degree burn when I am deprived my medication for a while and it is the worst pain I have ever felt in my life.

  • Devin Garlit moderator author
    2 years ago

    So sorry to hear that slamm321, I know exactly how you feel!

  • Julie
    2 years ago

    Pain is one of those things that people can’t see and I always try to hide. Unless I quickly suck in my breath when I get the icepick to my numb thigh, there really isn’t any way for anyone to know I’m in pain.

    I have also been diagnosed for 17 years. I first noticed a couple of years later that it felt like the carpet was cold and wet when I stepped on it. My family thought I was crazy so I didn’t mention it anymore. Shortly after that my feet were numb followed shortly by the burning that you mentioned. I once told my doctor once that it feels like someone hammered a nail into my big toe then set it on fire. The burning goes up my leg now. My left side has been numb from the time I was diagnosed and it’s in these places that I get the burning and pain.

    Just remember, our nerves are sick, not dead. -Dr. Sharon Lynch, KU MS med center.

  • Devin Garlit moderator author
    2 years ago

    Thank you Julie for reading and taking the time to comment, it’s very much appreciated! I confess, I try to hide my pain too. Even writing this, I felt a bit embarrassed, like pain isn’t something I should talk about. Like you, my one side (for me it’s the right) is often numb and/or in burning pain. Your cold and wet carpet feeling jumps out at me because I have had many moments where I feel like my legs are soaking wet. I know they aren’t, I can see they aren’t, I can touch them with my hand and know they aren’t, yet that feeling is there!

  • DonnaK
    2 years ago

    Thank you for posting this, now I realize from having read your post and other’s comments to it, that I am not the only one feeling this horrific amount of pain. The burning pain I get between my should blades at night is so bad I can’t sleep. I’m currently taking gabapentin and dantrolene as well a baclofen at night and it doesn’t even touch it. I get muscle spasms between my ribs in my back, feet and legs. Most people without MS have had a muscle spasm once in a while, I often wonder if they could handle them daily. I have grown so tired of people telling me they have pain too that now when I’m asked how I’m doing I just say fine. I’ve been told I’m bitter a lot when I talk about having this disease. It is as if people expect me to be their inspiration and tell them look at all I can do even though I have MS. The sad truth is that I can’t do a lot of the things I used to be able to, like think clearly. The only good thing that comes out of me having MS and dealing with pain daily is that I am more empathetic and understanding of other people.

  • Devin Garlit moderator author
    2 years ago

    Thank you DonnaK. I’m sorry to hear that you feel pain too, but know that you most certainly are not alone. Too often (in my opinion), people over emphasis being positive and what they can do and aren’t real about the issues that many people have. As you have seen with the comments, there are many like you.

  • linda walters
    2 years ago

    I relate to all your pains. My big gripe is my husband who refuses to believe any syptom is m.s. related. No matter what I am experiencing he says “me too”. I can’t even explain how much that angers me after hearing that remark continually. I really don’t complain much but a Little empathy would be a welcome and nice change.

  • Devin Garlit moderator author
    2 years ago

    I’m so sorry to hear that Linda! Perhaps you can ask him to read some posts on our site? Or attend a doctor’s appointment with you? Always remember that you have people here who know how you feel and understand!

  • Teelynn86
    2 years ago

    Devin,
    Thank you so much for writing this! It’s Perfectly put! Dxed @19yrs old in 2005, pain didn’t start until 5 years into having ms. It’s so hard to explain what the different types feel like. The burning is a.g.o.n.i.z.i.n.g. I’ve gone through Probably every “pain medicine” the FDA has approved and Botox was pretty much the only thing that touched it. I received Botox injections (sounds crazy, I know

  • Devin Garlit moderator author
    2 years ago

    Thank you Teelynn86! I actually know another person who has MS pain that has some success with Botox too. I’m glad to hear that it’s at least a little bit helpful for you!

  • tramcram
    2 years ago

    Devin, I too suffer from the burning and stabbing pain, especially in my legs. I’ve tried to explain it to family and friends. The only comparison I can come up with is it is like someone is holding a blowtorch to my skin. The deep bone pain is also very hard to explain. It’s like a toothache way down in my bones. It can be very debilitating. I do continue to work as a nurse, but am finding it more difficult everyday. My left hand is numb except for the palm. I too have dropped things many times. Fortunately, I am right-handed. You are not alone. I feel your pain. Thanks for sharing.

  • Devin Garlit moderator author
    2 years ago

    Thank you tramcram, I’m sorry to hear that you too deal with awful pain. I also have numbness in my hands. I am constantly dropping things! I like the way you describe the bone pain as a toothache down in your bones, that’s very accurate! Thanks so much for reading and sharing your story here, it’s always very appreciated!

  • mckennamagoo
    2 years ago

    I have a lot of cognitive issues and it takes me forever it seems just to do something as simple as post this comment, I used to be so silver tongued and now its mostly been replaced with frustration. Reading your post felt as if the words could have been coming from my mouth- so thank you so much, I can’t express the feeling of relief I get ( hehehe, a double entendre*yes I did have to google that because I couldn’t remember what the hell it was called) when I don’t have to explain or come up with my own words, I would love to force feed your story onto my family, believe me. I can only handle so much of, “You are holding yourself back” or “You have to want things to change” “My memory is just as bad” or “You aren’t the only one who hurts” – I can go on forever. I don’t even discuss it for the most part because no matter what I say, I am never actually heard- which causes me to feel some resentment. It is hard living with an invisible disease, people seem to think i’m just fine because they can’t see my symptoms and so I feel like i am always being judged- as if I want to constantly be in pain or always having to set a million alarms and post it notes or be in the middle of a conversation and forget what the hell I am talking about or forget taking my son to Disneyland- I still wouldn’t believe it if I didn’t have the pics as proof. Sigh… Welp, I need a break, been at this reply for longer than I care to admit, lol.. Thank you again for sharing 🙂

  • Devin Garlit moderator author
    2 years ago

    Thank you mckennamagoo! I very much sympathize with your cognitive issues and with people just not getting it. So often, the invisible nature of our symptoms seems to be the worst aspect for me (i kinda talk about that here: https://multiplesclerosis.net/living-with-ms/invisible-illness-pain-not-looking-sick/). I actually have an upcoming post talking about my cognitive issues that I hope will help open some people’s eyes! Thanks so much for commenting, I really appreciate it and understand it’s not always easy!

  • xc7si5
    2 years ago

    You described the experiences I have very well. I’ve learned to deal with some of the relentless pain by using as much distraction as possible. For example, when I teach, I typically don’t notice the sensations that I have (Parasthesias and
    Dysesthesias). When the pain came on about 12 years ago, I was also taken off guard. I didn’t think of pain as such an impactful or possible symptoms of this disease.

  • Devin Garlit moderator author
    2 years ago

    Thank you xc7si5. I find trying to distract myself very necessary as well, not always easy, but very helpful!

  • jfreiwald
    2 years ago

    Pain.. Boy, if I didn’t have it, I’d think I was miraculously cured! But seriously, I was first diagnosed in Nov. of 08. Pain is a very serious issue. I experience it on a daily basis, and I am still working full-time. (I pick up deceased people from place of death, and bring them to the medical examiners office) The pain I experience is very diverse. (of course it increases when I have a very large person!) But, everything from the spasticity, to the numbness. I am in pain-management, and that helps, but I don’t want to be popping pills all the time. I am very disciplined with my in-take, I take no more than 2 daily, but I still would rather it be zero…

  • Devin Garlit moderator author
    2 years ago

    Thank you jfreiwald. I feel the same as you when it comes to pills, particularly with pain meds, I seem to adapt very quickly and they cease to be effective, which means more pills. It’s a lot of grit and bearing it.

  • Shine
    2 years ago

    Devin, God bless you for this post! I have always read about the “burning and tingling” or the stabbing pain from bending your neck, which I experience, and I think, “People, you have no idea what pain is!” You have lightened my heart just knowing that I am not crazy, someone else feels what I do! I began to wonder if this was from something other than MS because no one seemed in as much pain as I was! I have PPMS and was diagnosed in early 2011. My first two symptoms were numb right foot and incredible deep, “boiling oil” poured into my bones on the outside of my left hip. I forgot to tell them about the numbness because the pain was all I could deal with, They treated me with everything including wearing a boot for 3 months in case of Plantar fasciitis. When I finally brought up the numbness it was off to testing for MS. As some of you know, when you have PPMS, your symptom is forever, it does not go away. Better days, worse days but always progressing. I also have the fast lighting burning hit and run pain but the never ending pain of being burned alive from the inside never goes away and has spread across my hips and down my left side to my foot. Unfortunately, I belong to an insurance group that has no MS specialist while I live 2 miles away from the San Juan Mercy MS Clinic! Until this year, there was no possibility of medication for PPMS so I endured. Now, with the new medication being looked at for approval for PPMS, I will have to figure out what insurance on Medicare has good coverage for MS and change.

  • Devin Garlit moderator author
    2 years ago

    Thank you Shine! While I never want to hear that someone else experience these types of pain, as you said, there is something about knowing that you aren’t alone that is just incredibly comforting. Just knowing someone else actually understands means the world to me. It is most certainly a time of great hope for those with PPMS. There are high hopes with Ocrevus (ocrelizumab) which will hopefully be approved very soon! Thanks so much for sharing some of your experience, it’s always appreciated!

  • Rachelpcarter
    3 years ago

    That is such a great article! I cried while reading it, not because I felt sorry for you, but because you described so much of what I have been through so well. I remember yelping out and everyone looking at me when I got those shocks; I remember holding my arms because the pins and needles were so bad and someone asking if I was cold; I remembered being frustrated when I refused my husbands help with a dish and dropping it into shards on the counter; I remembered having to completely zone out and trying to stop thinking and feeling the burning pain that felt like someone had poured a vat of boiling oil on my back that just won’t stop. This is by far the worst MS symptom I have had to deal with on a regular basis. I don’t get it daily any more since having HSCT, but I do still get it sometimes. The damage to the brain will always be there. It’s horrible, and indescribable, but you did it so well I really felt like for once someone understands me by experience, not just sympathy. Thank you for that!

    The only thing that ever completely took away the burning sensation for me was a hot bath. It would take the pain away for at least 1 or 2 hours after I got out also. I think the reason it works so well is that when your skin feels that sensation all over, it wakes up and says, “hey, this burning isn’t real- i feel soothing hot water not boiling water!”
    I was so fatigued it was not possible to get out of the bath to only have to draw another one and get it, not to mention taking clothes on and off, so we bought a hot tub. This way I could get in and out as I pleased, or just stay in and the kids could hang out with me at least. The insurance wouldn’t cover it, but we wrote it off on taxes.

  • Devin Garlit moderator author
    3 years ago

    Thank you Rachelpcarter! It means so much to me that others understand (though I’d never wish it on anyone). Thanks for mentioning how a hot bath has helped you. I have trouble in warm temps, so that might not work for me, but someone else may read that and have amazing success with it! So thanks so much for not only reading, but taking the time to share your experience!

  • Kate77
    3 years ago

    Excellent article! Timing is perfect because I have today the worst
    MS flare and pains in my life. I got panicky at being left alone unexpectedly and threw a hissy fit. Not cute at 76. Anyway I will show this to the witnesses. You have a typo at the end. Should be “doesn’t mean they are NOT battling hard against them.” I have been an Editor, writer, and copy editor and have made my share. Thanks again for your sorting things out and writing so clearly

  • joannmaxwell
    3 years ago

    As with the other MS’ers who have responded to you, I too have everything that you have described. Mine is mostly in both legs between the knees and the toes. I also have quite a bit of pain from spasms which are mostly in the bottoms of my feet. And this is 24/7. I take Baclofen for the spasms and amitriptyline for the neuropathy. But it can only help so far. The pain and the spasms continue to be a problem in spite of the medication.

  • Devin Garlit moderator author
    3 years ago

    Thank you jmaxwell for reading and sharing your experience, always appreciate when people take the time to do that. Like you, my legs are my worst area. Hope you get some relief soon!

  • RitaMac
    3 years ago

    I have the same type of pain you have. Burning, searing, tearing with the creepy crawly feeling. I would like to know if anybody is being treated with anything that works. I am about out of my mind and my coping mechanism for dealing with this uncontrolled pain is shot. Please let me know your thoughts. Thank you.

  • Devin Garlit moderator author
    3 years ago

    Thank you RitaMac, I’m sorry to hear that you have the same pain issues as I have. While it doesn’t make it go away, I have had success with a combination of Cymbalta and Medical Marijuana . I know others who do well with Gabapentin or Lyrica. I definitely recommend talking to a pain specialist in addition to your MS specialist, they have a number of treatments you can try.

  • Leonie79
    3 years ago

    Hi Devon, thankyou so much for wrighting . I was only diagnosed in August 2017 I’m up to my 5th relapse. My third one was me feeling like someone poured petrol on me and set me alight!! I was in hospital for 2 weeks from it, it really doesn’t matter how they play around with my meds it really doesn’t help. So now my whole body is just constantly on fire, wearing clothes hurts, sitting hurts, sleeping hurts. Well mentally you never really prepare yourself for that sort of pain, so your brains a mine waiting to go off. Don’t ask me how but we manage!! If it were anyone else they couldn’t take 5 minutes. I really don’t know the long term impact it will have mentally but we will see. Good luck

  • Devin Garlit moderator author
    3 years ago

    Thank you Leonie79! I am sorry to hear of your struggles. I’m not sure how you are being treated, but be sure to see an MS specialist. If you keep having issues, don’t be afraid to switch to a different doctor. Not all doctors are the same and not all are as good as others. Be sure to advocate for yourself and seek out the treatment you need!

  • Cynthia
    3 years ago

    Devin, your article was written perfectly for me. I have all your symptoms and have lived with the chronic pains way to long. I was diagnosed 31 years ago and as I have gotten older the symptoms have gotten worse. When I was reading your article I said to my friend, read this, it is me. I am like you as far as never complaining, I try my best to deal with it. I tell myself I am use to the pain and sometimes I think I am. I was a Respiratory
    Therapist and worked until I was 55 then went on disability as I just couldnt do it any more. I am sorry you are a former engineer, This darn disease can bring anyone to their knees, but never feel useless. You were able to articulate my life something I couldnt do. At times it is okay to feel sorry for yourself. It is your disease and only you really know what it has taken from you. Just dont stay there to long. Hang in there my friend you have more to offer to people than you really know. I look forward to reading more of your articles. God bless

  • Devin Garlit moderator author
    3 years ago

    Thank you Cynthia! I appreciate your kind words!

  • BGRN
    3 years ago

    Wonderful article. You’re right, it’s difficult to explain to people just what that searing pain is like. Your description of being burned at the stake is truly fitting. I had MS for almost 35 years before I started experiencing pain, so I guess I’ve been lucky. I will tell you that what works for me is to apply ice just above the area of pain. I can’t say it will work for everyone, but it’s worth a try. Buy those gel packs and protect your skin with a soft cloth, never put ice packs directly on your skin. Also do not leave them on longer than 20 minutes and check after 10 to make sure that your skin looks healthy. I didn’t read all the 67 comments, so forgive me if someone has already suggested that. I have also found that staying cooler rather than warmer helps. Unfortunately, the drugs prescribed for the pain cause increased weakness for me, so sometimes I have a hard time deciding which is worse–the pain or having to stay in bed the next day after taking the drug.

  • Devin Garlit moderator author
    3 years ago

    Thank you BGRN! I don’t think anyone has suggested that, but I’m sure many of us will try it now! That’s why I try to encourage folks to always comment, you never know when something you say might be new and helpful to someone! Even if you don’t have any new tips, just talking about your experience can make others feel better about theirs, so thank you!

  • Annie1
    3 years ago

    Thank you Devin for again clearly explaining what many of us live with daily. Pain. Ugh. I’ve been living with it almost daily since I was diagnosed 16 years ago when my third child was one. My oldest was 8 and my second was 5. It’s been a rough journey but my oldest resentful said: think of all the compassion and independence we’ve gained (he and his sisters). And they still say I’m the best mom and most brave person they know so don’t be afraid of having kids, Devin.

    I recently started with a wonderful, thorough and humble neurologist at the Stanford MS Center. With all his 26 years of experience at Stanford and earlier education in the U.K., he said that chronic pain is a real issue with MS but referred me to their Integrative Pain Dept. where they have three doctors, 2 of which are psychiatrists so I don’t have an appointment until 3/13…of course that’s an improvement over Kaiser who we recently left, (thank God as they cannot handle a case like mine with ONE MS specialist in San Francisco, where I waited to see a pain doctor from July, when I was hospitalized in 10 pain to November…and then she was out sick on that day! Two doctors there-sharing ONE position. Pain needs to be researched and worked on better for MS patients. We may be a small minority but we are SUFFERING. Thank you to you all for contributing. I was a hair away from tears all morning…I still am…but don’t feel so alone. Namaste

  • Shine
    2 years ago

    Annie,
    I am a PPMS patient with Kaiser in the Sacramento area. I too will have to leave even though I do love all of my other doctors. I was able to get into the doctor in SF around t2-3 years ago when she first started and she basically told me, “I can’t see you, I have enough patients here in the SF area!” I can not believe they do not have a specialist in each geographic area. I am scared to switch because it is impossible to know what insurance will have a good coverage in relation to MS.

  • Devin Garlit moderator author
    3 years ago

    Thank you Annie1! Your oldest makes a very good point. There are some real benefits when raising a kid if you have MS. A lot of negatives that people focus on, but, he raises some good points. I’d say raising kids to be more independent and compassionate is a massive benefit, especially in this world!

    Sadly, your experience with specialists is pretty widespread, not only in the pain area, but also with regards to MS. There really isn’t enough focus or specialists to go around these days!

  • Annie1
    3 years ago

    I guess there’s no way to edit comments here but I meant * my oldest (just turned 25 today) recently said…

  • Toddlius
    3 years ago

    Well, Devin, thank you for your article. The last couple of months I’ve been dealing with what I believe to be Trigeminal Neuralgia. It’s mostly in my jaw, but the last couple of days I have triggered the pain when just licking my lips. Makes getting to sleep/sleeping a tricky thing. I too have caught myself wonder WTF I did in a past life to deserve this.

  • Devin Garlit moderator author
    3 years ago

    Thank you Toddlius. I think a lot of us wonder what we did to deserve all this, I know that thought crosses my mind a lot. I know that it was nothing, but it sure is a common thought. Make sure you mention your pain to your neuro. There are definitely options out there that can help and I actually know of a couple people that have even had a surgical procedure to help with TN. Thanks for sharing and I hope you find some relief soon!

  • JAWilson
    3 years ago

    “With MS, pain can really encompass a number of things: Trigeminal Neuralgia (a stabbing pain in the face), the MS Hug (a tight, constricting pain in stomach and sometimes chest area), Lhermitte’s sign (an electric shock type sensation up your spine when you tilt your head down), Spasticity, Paresthesia (numbness and tingling), and Dysesthesia (burning, stabbing, or tearing pain)”

    12 years, post diagnosis and I have or have had in the past every one of those types of pain. I can’t decide if the burning in my legs or MS hug is the worst. I read in the comments that someone else described the pain as ‘crushing’ which is how the so-called hug feels, but is sometimes how my legs feel as well.

    You did a great job describing so many different issues for all of us with this article. Thanks Devin!

  • Devin Garlit moderator author
    3 years ago

    Thanks SO much JAWilson! I hate hearing you know what I’m talking about, but I’m very happy you thought that I did a good job describing it. I’m always on a quest to try to explain what it’s like for to others who can’t understand. Thanks again!

  • Pleahy2155
    3 years ago

    I’ve been living with MS for 24 years now. My worst exacerbation in 1997 left my left arm, from shoulder to finger tips,numb and needles and pins. I have also have the same symptoms of many of you. I worked all these year with MS and dealt with it.I recently retired thinking my husband and I would get a chance to do some of the things we always planned to do. One of my worst pains was my lower back. While this is not related to my MS, it still was my painful nightmare.

    In August I had a spinal fusion on my L4L5 area. It went great I was home recouping as instructed. About 6 days after surgery I told my husband something was very wrong. I couldn’t feel my feet on the floor and my legs we pins and needles. We went back to the hospital were the admitted me again. By the next say I lost all mobility. I was a body of pins and needles, electrical pain in my legs and feet, and stabbing pain in my entire body. Of course the doctor want to make sure nothing was nicked in my spine. Was one the hospital two and a half weeks, 6 MRIs and numerous bold draws, the o.nly deduction they come up with is a MS exacerbation. There were no new lesions on my MRIs and no damage to my spine. It’s scary when 6 doctors, surgeons and neurologist’s are standing looking at you day in and day out and have no answers. My surgeon said to me ‘there is no medical reason for you to be in that bed, get up and walk” I don’t have to say how this made me feel. Finally they hospital sent me to rehab where I spent three and half months. I am finally home but still doing therapy. I have full use of my upper body but the pins and needles are still in my lower legs and feet. Somedays it feels like my toes are going to explode.

    I will continue to do what I have to get better. But I have to say I thank you to my devoted husband and all the staff at the hospital and rehab center, because without their encouragement I would have gave up.

    Pam

  • Devin Garlit moderator author
    3 years ago

    Thank you for sharing Pam! That surgeon sounds absolutely awful! There are far to many doctors like that in the world. Glad to hear you have use of your upper body, I hope you continue to improve! Keep fighting!

  • Rucyrious
    3 years ago

    Devin,
    OMG you explained me to a T. I unfortunately didn’t have the option of finally being diagnosed until January 2016 when this one doctor finally took a chance on me and started me on copaxone, and later ampyra. 15 yrs I watched my health deteriorate to nothing. I was a single mom raising 2 beautiful kids alone. And after a gallbladder surgery that’s when my symptoms started.
    Oh forgot to add, I was going to the gym daily, building muscles, loved loved loved the gym, on the PTA! Very active in my kids sports. Worked full time and went to school full time. How I did this and kept my house up with lawn, house improvements U name it I was doing it all.
    I just started a temp job 2 was after my surgery and within a month I started falling down the stairs. Started out with a stomach flu that wouldn’t go away. Went down my back, left leg plus left side. Started noticing outside in the winter months it was, both legs with shake uncontrollably,

    Lose bowel movements without any notice. Not to mention how embarrassing that I had it everywhere. 1st stop a back doctor spastic reflexes. MRI with brain lesions U no-specified. Then every specialist you could imagine. All said MS accept the Neurologist. After 11 Neurologist and so many MRI’s and deteriorating my leg muscles walking, legs feeling like cement. Almost getting killed by moving traffic at 65mph stuck in the middle of the road because my legs wouldn’t move that was it. I started massive leg tremors, freezing legs, God awful pain. Wearing a hearting blanket covering my legs daily because of the pain. I demanded pain meds. I couldn’t function at all. Got fired from my job bc of this illness going on 2 yrs after the initial start of all of this bc of loose bowel movements, falling asleep and just out of mind with this pain, that was my last job ever.

    I needed help. Out of state Neurologist, in state with hours away. New brain lesions but still un-specified. My newly husband I married would see and feel my leg muscles contract in my legs. We would watch them move like a baby does in a mother’s stomach. Crying of pain and the loss of my muscles, and more spasticity in legs caused me to stop dead in my tracks. The more activities I did the more pain. Physical therapy in a warm pool and coming out in the cold caused more tremors so we stopped that. A neuropsychological testing showed brain impairments showing all impairments with cognitive, reasoning skills, comprehension you name it. Ruled out everything accept MS still on table.
    Been called crazy, pain seeker, I’m faking everything you could imagine. After 10 yrs of now no muscle tone, all gone bedridden with us reversal damage done I was given a diagnosis of Transverse Mylitus. WTF seriously but kept having electric shocks go down my spine just like you do when I was and sorry for MY bluntness toilet and when I looked down, that shock zapped so hard it made my legs straighten out as if I was getting electricity going through my body. Then vision problems but no optic neuritis. Falling all the time. Knocking myself out. Laying in the cold snow because I fell. Couldn’t move. Having my daughter carry me out of mall after standing in line for 20 minutes praying to God my legs would stop shaking. Collapsed on the floor. She who weighs the same as me had to carry me a far distance. Then when we got home I could not walk period. Pain was so bad I couldn’t move. Sciatic nerve they said. BS!

    Dropping mugs of coffee. Hands going numb. Legs burning as if on fire. Back on a MRI table was burning to the point where I couldn’t lay my back on it and lifting it up during test. After the test it told the guy my back is severely burnt. He looked and felt it and said it was cold to the touch. Again crazy. Found a bigger lesions this time. Still in-specified. Ok this is it. I was given up. Pain so bad that I decided I was going to end my life because I can’t take it anymore. Why wasn’t anyone helping me?! My husband kept me going. Finally after my primary left and I had to find another, this one got me to another Neurologist and he did and said same thing. Transverse Mylitus but why do I keep having all these weird things happening to me? Hurt to talk, face went completely Knumb on one side. Thought it was a heart attack so went through all those testing. Again nothing. I would take a shower once a week because I was so tired. After shower extreme pain and tiredness. Forget the hot and extreme cold weather I could not handle them. Falling increased, legs given out. Tremors so bad that people JUST stared. Walking like I’m drunk. To tired to even have a phone convo so I avoided all communications. That hugging sensation you stated, WOW my chest has been feeling like that on an off this past month. I literally have to take off all my cloths to get rid of this feeling but then chills. So cloths back on. Not sure if this is the same thing or not. Extreme crying and laughing episodes. Extreme memory loss. But mostly the walking and now stabbing pains and zaps to my legs every 5 seconds.
    Started copaxone and noticed right away I could take a shower without falling asleep for 5 hrs. Now I don’t shut up. WOW no more extreme fatigue. 4 months later Ampyra again WOW I noticed I can get up and at least make myself some food. Walk shorter distance. DRIVE MYSELF to my own docs and use my cane. Rather than being down for 3 days with extreme pain from just taking a shower I am down 1 day. He finally diagnosed me with MS. After 15 yrs. I can let my dogs out but still have these odd things happening to me. But I’m up. Still in bed but I get up every half n hour. This is HUGE for me. There is much more to my issues but this is just a short version. I would love to talk to you more about your pain. Right now I’m trying to find funding for the copaxone and ampyra which is like pulling teeth. Every place that offers funding is gone. So I may be off all of these meds and will suffer for several months until I can get help. I’m expecting more damage which BTW I am fuming about. Losing 15 years of my life now wheelchair bound. I can’t even go here. To upsetting. You are the 1st one I have reached out to.
    I’m suppose to educate myself but not ready. This has taken a toll on me and now that I finally got a diagnosis I should be happy but now I’m afraid.
    I also in the mix of getting diagnosed got another one. Melanoma Cancer.
    Wham and a double whammy. I need support and help. I don’t have any idea how to write my story so I was hoping you could help me.
    Debi

  • tfs
    3 years ago

    Debi: I just need to say you did a very good job writing your story. It moved me greatly, and I feel great compassion for you. You are suffering a lot and many people do care. Keep reaching out.

  • Devin Garlit moderator author
    3 years ago

    Thank you so much for sharing Debi! Your story really does illustrate the importance of a good neurologist and how hard it can be to find one! As far as funding is concerned, it can be hard. However, with it being the beginning of a new year, you may have some luck. For copaxone, I’d recommend contacting Teva, the company that makes it. They have a program for helping people afford it. You can find more information here: https://www.copaxone.com/shared-solutions?s_mcid=url-sharedsolutions Thank you for reaching out!

  • dkaruth
    3 years ago

    Thank you, Devin, ow4oo9, and others for sharing your stories.

    I have extremely severe pain related to MS and Post Herpatic Neuralgia, the pain that lingers after having shingles in 25% of individuals. (Get the shingles shot NOW if you are age 50 or over, even if you have to pay for it. You DO NOT want to get shingles.) I got shingles when I was 47 years old and have been in severe pain ever since. I also have the searing, burning pain that others have described from my nose to my toes, burning all the way to my bones. It feels like I have been immersed in scalding water 24/7 and it is severe enough to make me continuously writhe in pain because I cannot tolerate pressure on any part of my body. At times, even lying a single sheet of paper on my lap (even when I am fully dressed) is unbearable. I also have to wear loose, soft clothes. The post-herpatic neuralgia makes it impossible to wear clothes with a waistband unless I can roll the waistband over my hips and wear a tunic top to hide the rolled-down waistband. (I do this when it is really cold and I need to wear long underwear.) I also cannot tolerate wearing a bra. But I am not writing to complain. I am writing to share a solution that has worked for me and may help you.

    In 2010, after many years of trying many different oral meds and a continuous subcutaneous infusion of lidocaine delivered via an IV pump that I carried everywhere I went, I had a Medtronic (the brand name) intrathecal pump implanted just beneath the skin in my abdomen. It’s the size of a hockey puck, so it stands out a bit and makes it hard to wear tight-fitting dresses or skirts without the outline of the pump showing. I don’t mind this.

    The pump attaches to a catheter that was implanted in the intrathecal spinal space in my mid-thoracic spine. The pump delivers a continuous dose of bupivacaine, a concentrated form of lidocaine, another anesthetic, directly into the intrathecal spinal space of my spine. Bupivacaine is an anesthetic and it “turns down” the volume of neuropathic (nerve) pain much more effectively than narcotics, which don’t work on neuropathic (nerve) pain. I have a battery-powered transmitter the size of an old-fashioned walkie talkie or taxi microphone that I can lay over the pump and give myself a bolus (an extra injection) every two hours (or whatever interval and dose the doctor programs into it). The pump has to be refilled every five to six months. I prefer five months since it seems that the strength and effectiveness of the bupivacaine begins to deteriorate over time. The refill process is easy. The technician or doctor puts a paper template on the skin over the pump. The template has a circle in the center that indicates the location of a membrane that can be penetrated with a needle to empty and refill the pump, a procedure that takes about five minutes.

    This treatment has been a life-saver for me. It decreases my pain by 60% – 80%. I feel like I have my life back. The doctor who implanted my pump and who oversees my care is Dr. Edgar Ross. He is at the Pain Management Center (PMC) of the Brigham and Women’s Hospital in Boston, Massachusetts. The PMC is in Chestnut Hill and is only about five miles outside of Boston. Here is his contact information:

    Dr. Edgar Ross
    Pain Management Center
    850 Boylston Street
    Chestnut Hill MA 02467

    The main office number for the PMC is
    (617) 732-9060

    I also find it helps to have an alternating pressure pad on top of my hospital bed mattress because it continually shifts what parts of my body are bearing weight. It also prevents pressure sores. I also have padded armrests and leg rests on my manual and motorized wheelchairs. I use an extra foam cushion on my wheelchairs. If you are still ambulatory, I urge you never to sit in a chair without a foam or gel pad beneath you. It’s worth buying one and carrying it around so you can have it available when you need it. I have sometimes used Heelbos which are padded covers designed to insulate your elbows and heels from pressure. They wear out after a while and need to be replaced and my insurance doesn’t cover them, so I don’t always use them.

    Crocs makes extremely light-weight shoes in all styles, even dress shoes. I like them because they slip on and don’t fall off, they have good non-slip treads, and you can wash them whenever you want. I have a pair of navy blue dress crocs that I have lived in for the past two years. Check around online to get the best price. Diabetic socks are also good because they are loose-fitting and, usually, soft.

    Well, I hope I haven’t overwhelmed you and that you find this information helpful. Love and best wishes to you on your MS and pain journeys.

    Denise

  • Devin Garlit moderator author
    3 years ago

    Thank you so much dkaruth! I hate to hear of your suffering but I am so happy you shared it with us! I’m sure it will be useful to man! I very, very much appreciate you taking the time to explain your experience to us!

  • dkaruth
    3 years ago

    PS I also experience trigeminal neuralgia. Sometimes it is so severe that I cannot lay my head on a pillow (because the trigeminal nerves run from the base of your skull and up the back of your head and then run across your face). I cannot close my mouth all the way because it hurts when my teeth touch. I also cannot have my tongue touch anything in my mouth, or, consequently, speak. This sometimes lasts for up to two weeks. I once was invited to lecture at a conference in India and I had to cancel my trip because I was in too much pain to go. (MY GP was greatly relieved that I did not go because she feared that I would be infected with a dangerous virus or infection.)

    To use the vernacular, severe trigeminal neuralgia really sucks! Tegretol (carbamazepine) has long been the treatment of choice, and there are surgical interventions for people who have it very severely. I found a program that runs on my Amazon Kindle that I have used as a speech synthesizer: Write and Talk Lite, SpeakIt, and ITalk – Text to Voice. They all work by typing in text and having a synthesizer voice read it back. I can’t remember which one I liked best, but I’ll try them again and repost.

    Best wishes to you all,

    Denise

  • ow4oo9
    3 years ago

    Reading this brought tears to my eyes. I can so relate.
    Because I’ve gotten so good at ‘acting’ I’m convinced that my family & friends think I’m faking. The only one who truly knows is my husband, and even he ‘forgets’ sometimes! I have to remind him that I’m having a bad pain day.
    I suppose it’s hard on him, too, as I know men especially feel the need to fix everything and it’s quite frustrating for him to see me suffer, knowing he can’t fix it.
    I’m 50 yrs old and diagnosed for only 3 1/2 years, but it’s been constant pain since the day I woke up with that burning and tingling in my feet, three days after my wedding (I was a 47 yr old first-time bride). Within weeks, it spread to my whole body and for the first month, I literally could not ‘feel’ my husband. Within weeks, the numbness turned to burning pain and I haven’t had one minute of relief since.
    My skin over my entire body burns all the time. It’s like a constant sunburn. Even my clothes touching my skin hurts. The burning and tingling is much more pronounced in my feet.
    I also get very deep aches in my legs. Remember when you were a kid and you would wrap a rubber band around your finger until it turned blue and started to hurt? Well, I feel like I have tight rubber bands wrapped around my legs at the hip. I feel pain and pressure deep inside at the bones. This also affects my arms at times, but my legs ache every minute of every day.
    A few months ago, my fingers went numb. It feels like there are tight gloves on my hands and I, too, am dropping things all the time. It’s in my hands that I have gotten those sharp, electricity pains you mentioned.
    I sometimes struggle with the thought of having to live like this for another 30 years. I’m amazed at my 96 year old Gramma and I try to be inspired by her, but honestly, I just don’t see that life like this is worth it some days. I once read a blogger who wrote that MS doesn’t even have the decency to kill you. It tortures you and takes away little bits of your quality of life over years and years. In a way, I hope I do die young.
    I’ve tried every possible pain medication and it’s only hydrocodone that takes the edge off enough to get through the day. Without them, I am in bed in tears. I’ve even taken sleeping pills to avoid the pain – of course, I wake up a few hours later to deal with the pain anyway.
    I HATE being dependent on these damn pills. And I’m terrified to think what they are doing to my liver. I hate the looks I get from the pharmacy! Like I’m a criminal or something! Again adding to the notion that people think I’m faking. And I know they will stop working someday. I don’t know what I will do at that point.
    Fortunately, my MS specialist doesn’t question a thing. He has seen others in my situation and never even shows a hint suspicion. I simply cannot function without them.
    I met someone this weekend with MS. She was much younger than me – maybe 30 years old – diagnosed about 6 years, and in a wheelchair. She said she can walk – sort of – but she finds its just less trouble to use the chair than to risk a fall.
    I look at those who show physical signs and again, I feel guilty for being such a baby. I mean, I don’t have it as bad as some, right? At least I can walk (kind of mechanical because of the pain, but still walking), however painful every minute of my day is.
    I feel guilty for parking in a hdcp spot (of course I only do that when I can’t find another spot close). I constantly feel judged and questioned. I mean….I look just fine! And with my acting skills…well, I must be faking, right?
    Of course, I know most of these feelings of being judged are in my own head, but are they?
    Anyway, I want you to know that your story touched me deeply. To know that someone else feels the constant pain that I do makes me feel validated (BTW – I didn’t now that the tightening of my stomach muscles was from MS!! I’ve never even mentioned it to my Dr!).
    Thank you for sharing your story,
    Kelly Nickl

  • Devin Garlit moderator author
    3 years ago

    Thank you for sharing your experience Kelly Nickl, I very much appreciate it! I’m certain that others will see it and find it useful as well, you’ve really hit the nail on the head with so many points. We are most certainly not alone in all this, and as you mentioned, something about that is very comforting!

  • RobertRafferty
    3 years ago

    Ahhh!…
    That pain that feels like peeling the skin of a mango from the fruit…

    As if everything attached to the bones is being stripped slowly up the legs.

    Nope, never felt it… Like a peeling banana…

    Thank you!!! The souls of our shoes match so well.

    I will be sharing your post as it hits home hard this past holiday!

    The elligance in your descriptive word is remarkable.

    Now, can you put into words what is happening in my head? LOL

  • Devin Garlit moderator author
    3 years ago

    Thank so much RobertRafferty!

  • hQpyf7
    3 years ago

    Dev,

    thanks fro writing your experiences. it helps us all.

    >>All of it is made even worse because it’s invisible to everyone else. You end up living with this fear of skepticism, this concern that your friends, family, and even doctors may not believe you. If they can’t see it and they haven’t experienced it, they will never truly understand. That’s a tough thing to deal with and probably why I have such a connection to others I meet who also have MS.

    i sure can relate to many of your pain items and descriptions. i’ve given up on attempting to explane to others about it, even doctors. probably just me and “my” ms but often i cannot distinguish discreetly what is MS pain or pain from spinal injuries. both have primary & secondary issues and overlap. few people have the patience to hang around long enough while i try to verbably get my thoughts out on this matter. LOL. we learn to just not say much about it.

    and the “fear of skepticism” as you aptly worded it is very strong within me. obviously from other MS’rs too or you wouldn’t have mentioned it. this “fear of skepticism” can and does manifest itself in varying degrees from situation to situation for me. i’ve grown and adjusted my attitude and reactions regarding it but the fear is still strong.

    then in today’s world, the “pain” word is almost not allowed to be used. who knows what gets written in your med records when you mention “pain” now days. now, if one is a cancer patient, no big deal, right? see, told you i was skeptical. i’m willing to guess many of us have been burned by this issue once or twice.

    oh wow, the MS hug, finally someone mentioned it being in the gut/stomach say versus only the chest area. it is like tip of knife scraping your stomach/intestines for me. breathing gets effected or so it seems. bad mood goes off the chart. can last a few days, then the after effects of the first onset takes a few more days to go away. most known gastro tests show little of anything. i have no “visible” lesions in thoracic area, mostly brain but once in awhile a lesion will light up in cervical then fade away. i do think i get the ms hug periodically and it is no friendly hug at all.

    >>Can there be a good thing that comes with having to deal with pain so much? I’m not sure.

    i don’t know. we’ve all lost so-called-friend relationships, family relationships, doctor relationships, work relationship, significant partner relationships, etc., due to our long term pain journey. it has changed my personality a bit over the years. that is just a side effect of the secondary issues with MS and pain. natural progression i suspect.

    i will say this on a light note, animals/service-dogs’ relationship rarely get lost with this! they seem to bond even more! yeah thankfully!! 😉 that is one of the good things of this pain issue you write about, also the individual spiritual growth that comes from it.

    >> (though at times, I feel weak when I bring up my pain).

    i hear ya on this. meds have helped me to the degree that i don’t need to talk about pain much. no one wants to hear of it anyways, and that includes a lot of doctors. though the pain demon is always there for me. and it can be a myriad of different pain types as you so correctly mentioned.

    i really want to try to MM, legal here now. but only on state level. still against federal law and for veterans that may/may-not be problematic…depends on what mood the va is in that day. 😉 many appear to get relief from it than, say those that don’t which is good to know.

    thanks to all who wrote for all of us to read and grasp more insight. another New Year knowing we’re not alone.

  • Devin Garlit moderator author
    3 years ago

    Thanks so much for the response hQpyf7! I love when others comment and explain their thoughts and experiences. It helps everyone, including me!

  • Azjackie
    3 years ago

    Wow, MS has really kicked my rump! Reading I am not the only one has really helped.

    My pain is a severe tearing, burning, stabbing in my mid back (thoracic spine).

    Funny I remember the first time I told my first Neurologist, she looked at me very funny as if I was intoxicated, brushed it off without a second thought.

    I found the best in AZ and started acupuncture. This was incredible. I had to stop due to financial reasons. Now I enjoy prescription Tramadol and rest, much more affordable. Who knows was it is doing to my internal organs but with the pain I have a tendency to pray, beg really, for the worst. That’s terrible to say but 9 years of it wears on me. I am not as tough as others who have suffered longer.

  • Devin Garlit moderator author
    3 years ago

    Thank you Azjackie! Knowing we aren’t alone is always super helpful, at least to me. That’s usually the focus of what I write, I don’t have a lot of answers or things that help, but I always feel that if I can put it out there and have at least one person feel like they aren’t alone, that someone else “gets it” then I’ve done some good!

  • john
    3 years ago

    Hello Devin, I will make this very short,M/S must have a personal symptom for each person ,after reading about you I can’t even begin to describe my pain ,I can not find words that would describe it ,so i won’t .I am on pain Meds and don’t know what i would do with out them

  • Devin Garlit moderator author
    3 years ago

    Thank you john! I hope that you find some relief soon. Thank you for taking the time to share your experience, I appreciate it!

  • Gregory
    3 years ago

    Hi Devin,
    I want to thank you for your post. I relate to your story. I too was diagnosed with MS 17 years ago and I also live with pain every minute of every day. The MS, the falls, the injuries and aging all add up to deliver a variety of pain. As I read your story I felt your pain, it sounded like my pain.
    I laughed, I cried, I shared your story with my wife. I’ve never been able to really describe my pain to my wife. And I never tell family, friends and co-workers about my pain. A lot of people believe that MS is not painful. At first it was the MS hug and the full body tingling numbness. Then the ataxia and losing my sense of touch and dexterity. Since those days I have had many falls and injuries. About 7 years ago when I started using a cane people started to ask me about pain. I think the cane and the foot drop make it look like I’m injured. Most folks see injury = pain, otherwise it’s invisible to them.
    When they’d ask me what happened, they’d expect a story of how I injured myself. I used to say it’s complicated and laugh, now I just tell them I have MS and laugh. Then I say it’s not as painful as it looks. My wife has told me it’s painful to watch me walk. In one case she even broken down in tears begging me to get a wheel chair. I have used a wheelchair a few times. I’m not ready for that full-time yet, but I do have a walker, walking poles and forearm crutches.
    For me the mental pain is the toughest to deal with. I have many ways to help with the physical pain.
    I have trouble dealing with the mental pain.
    I miss life without the MS hug and full body tingling numbness. I remember the first couple years driving me crazy especially when I laid down to sleep. I wanted to chop off my hands/arms/legs/feet just to get rid of that feeling.
    I miss my sense of touch … no hot/cold … no rough/smooth … no soft/hard. I miss playing my guitar, I miss juggling, I miss writing with a pen/cil, I miss being able to put my hands in my pockets and feeling what is there, I miss walking, skiing, climbing. I miss a lot of stuff. I don’t want to be a whiner, but that stuff hurts. I know that everyone has their own challenges and I should be thankful for what I have.

    I have tried many things to deal with the physical pain.

    Lots of different meds;
    – opiates(didn’t work)
    – lyrica (worked for a while)
    – cannabis (is helping me, especially with ‘Painsomnia’)
    – anti-inflammatory (helps)
    – baclofen (helps)

    Alternate therapies;
    – light therapy, red/blue led (helps)
    – aggressive chiropractic; mechanical vibrations, electric acupuncture, high voltage electric muscle stimulation
    – 7 years ago I even became a laughter yoga leader (it was fun for a couple years but I gave it up)

    Exercise;
    – weights (3 per week)
    – rowing machine (3 per week)
    – stationary cycle (3 per week)
    – stretching (daily)

    One of the biggest challenges that I’ve overcome in the last year is to accept help and not be afraid to ask for help. Most people want to help when they see someone in need and it was selfish of me not to accept help.

    Devin I look forward to hearing how you deal with your MS pain.

    Thanks again.

    cheers,
    Greg

  • Devin Garlit moderator author
    3 years ago

    Thank you Gregory for sharing your story. The mental anguish is often the worst. Not having others be able to see, or understand our pain can be incredibly alienating. Not being able to be the old me is often the most hurtful. Not being able to do the things I once did, think the way I once used to think, all of it. I sometimes will see an amputee with a prosthetic moving around, even running, and I’ll have moments where I wish I could do that, shed my most painful body parts for something artificial.

    Accepting help is hard for me as well. I think some of that has to deal with being a man. Even though I know better, I still have some hang ups sometimes about “being manly”.

    As far as treatments, I’ve tried a lot of things. Gabapentin (which does work for some people but not me), baclofen (made me even more fatigued than I already was), a TENS machine, even a ketamine cream that I’d rub into my legs, and an assortment of other meds all that seemingly did nothing. My current pain treatment is a high dose of Cymbalta twice a day and medical marijuana. Neither makes me pain free, but they do make it a little bit more bearable. More bearable than life is without them anyway. I’m still looking for something to take it all away. WE’re all so different though, so it’s important to try new things.

    Very much appreciate you reading and commenting (sorry for my delayed response, had a stretch of rough days there)!

  • Brenda777
    3 years ago

    Devin, I have read a few of your posts now and they have been tremendously helpful on many levels. I did not know a person could remain high-functioning for many years with MS. Like you I am athletic. In 2009 I was competing in triathlons when my first symptoms hit. I went to several doctors about what I called “floating pain” One or two suggested the “f” word (fibromyalgia)but no diagnosis was forthcoming and frankly it really didn’t fit. Today was the first time I really understood spasticity (after watching your video)I never thought of that as abnormal before and was a regular occurrence during my first flare in 2009. I was 49 at the time so I rationalized I was too old for the onset of MS. I now know that is not the case. I have chosen a perhaps controversial path. To remain undiagnosed. Everyone knows a stigma exists. I have always been very independent and I have a career that is both physical and involves a lot of responsibility. If my symptoms prevent me from doing my job safely or properly I will reconsider. When I am close to retiring I will reconsider. But for now I will put up with constant tingling in my hands and muddle through the brain fog and changes in visual acuity. I have started a symptom log for when that time comes. Thank you for humanizing this disease and bravely doing battle with the stigma.

  • Devin Garlit moderator author
    3 years ago

    Thank you Brenda777! MS is such a snowflake disease. We all have such different symptoms. I have no doubt that there are many people that have MS and never even know it or even consider it. They live normal lives with minor issues here and there that can be passed off. I’m sure many of us that have been diagnosed can even look back at a number of things that weren’t even real problems but were probably symptoms. I certainly understand the stigma, so I fully understand your decision to not get diagnosed. Having a symptom log is a great idea though in case you change your mind one day. Thanks again for reading and taking the time to comment, much appreciated!

  • Lacey
    3 years ago

    I sent this to my husband because you’ve basically described my day-to-day. I’ve read a lot about MS and ways to deal with pain but this is the first time I’ve read an article where I didn’t go, “well, I don’t have that,” and I didn’t realize how much that would mean to me. I dunno. I hate that you’re hurting too but I now know for a fact that if I told you, “I feel bad today,” you would have a really good idea exactly what I was talking about and I always feel the opposite of that.

  • Devin Garlit moderator author
    3 years ago

    Thank you Lacey! I know it’s hard for some to understand, but there is just something about reading or hearing about someone else that is going through what you are going through that is comforting. MS can be a lonely disease because it feels like know one really understands. Though I’d never wish it on anyone, I’ve always felt some comfort to hear that someone else “gets it”. That is usually what I strive for with my writings, so that someone will see something and think, “i’m not alone, this guys understands”. Thanks for reading and taking the time to comment, always appreciated!

  • Joelle Buck
    3 years ago

    I have been feeling similar exhausting ailments for a little over a year. I say “I feel like a Nuclear Bomb has exploded inside of my body. I am to the point of not being able to allow a conscience effort to evaluate my pain. It becomes too overwhelming!!! It causes more stress and than it has led to 3 relapses. I am allergic to steroids and I need a reset button to be pushed. I am pretty much at my very last straw. I don’t go to the ER because I am a hard stick. And it takes at least 10 attempts to get iV access… I don’t have much fight left …

  • Devin Garlit moderator author
    3 years ago

    I’m so sorry to hear that Joelle Buck! Don’t give up the fight! This disease puts us through a lot. You are right, it’s overwhelming. But remember that makes us tougher than the average folks, we’re MS Warriors, not MS patients. So I know there is fight in you! Always remember that you are never alone, many of us are having these same exact thoughts as you!

  • tfs
    3 years ago

    Hello, Devin. This latest topic was a real eye opener for me. I have said to myself and others that I don’t experience pain. What is with that? I have simply been denying it. Yes. I get jolts of searing pain in my arms and my legs occasionally. My right side is truly numb and I cannot tell you how many crystal glasses, Christmas ornaments I have broken. Yet I failed to define it as pain. I have extreme sensation of torturing itchiness that is related to MS. I am really astounded at myself. Yes. Pain. It is real.

  • Devin Garlit moderator author
    3 years ago

    Thank you tfs. I think many people get a number of sensations that with MS that they wouldn’t consider as “pain”. After some time, I tend to loop many under the pain category because for me, they all essentially cause pain. You are right, pain is very, very real!

  • manicmommy
    3 years ago

    Wow! Honestly, I’m in tears, it’s the mirror of my world. My chronic pain didn’t start till 03 when a fall left permanent damage to my back. Fibromyalgia came 2 years later and it’s been my battle since with MS joining the party 2014. The pain nightmare is unreal and most don’t get it when you say it feels like someone’s crushing your legs and it feels like it’s on fire.

  • Devin Garlit moderator author
    3 years ago

    Thank you manicmommy! Sorry to hear you deal with this too. I do always find a little bit of comfort in knowing I’m not alone thought. That there are people, like you, who understand what I’m saying. I appreciate you commenting and sharing your experience!

  • Diana
    3 years ago

    Thank you for this article. When I was first diagnosed March 2014 my doctor asked me if I had pain. I told hm no, thank goodness, and I thought I was lucky not to have that symptom. However about a year ago I started experiencing a cold burning pain in my left arm, right at bedtime. It keeps me up most nights for awhile. I’ve tried painkillers, heating pads, nothing seems to work. Eventually I fall asleep. I hesitate to bring it up to my neurologist as the last time I had a bad symptom – my first and so far only experience with a MS hug, he didn’t believe me and told me to go to the emergency room, that I might be having a heart attack. He totally discounted the possibility of the “hug”.
    I guess I am pretty lucky not to be on the really hardcore pain meds, and I shouldn’t complain, many have it worse than me. It’s good just to be able to tell someone that understands.

  • Gregory
    3 years ago

    I think the MS Hug needs a better name. A hug sounds too nice. I’ve heard the MS Hug described as a ‘Death-grip’, think WWF and a wrestler squeezing an opponent until they pass out and collapse. Not a nice warm and welcoming hug.
    Maybe it should be renamed to the MS Bodylock or the MS Clinch.

  • Devin Garlit moderator author
    3 years ago

    Thank you Diana. ConnieMWT is right, it’s time for a new neurologist, particularly one that specializes in MS. If you have any hesitation of mentioning something to him, it’s time to leave. Not believing the MS hug, it’s definitely time to leave!

    Nighttime pain is a big issue for me and it wreaks havoc on my sleep. I call it Painsomnia: https://multiplesclerosis.net/living-with-ms/painsomnia-an-exhausting-problem/

  • Kaye
    3 years ago

    ! I know people say it’s different for everyone, but I know what you mean about the various kinds of chronic pain. My family and my neurologist don’t seem to understand how I feel that I am really suffering! Even my poor cat didn’t understand why I didn’t let her touch my legs. But at least she didn’t tell me that it’s not so bad if “it’s only like having your leg going to sleep”. Wish I had a better way with words!

  • Devin Garlit moderator author
    3 years ago

    I’m so sorry to hear that Kaye! If you don’t feel your neuro believes you, it’s probably a good time to switch! Explaining our pain and other invisible symptoms can be extremely challenging. I know I’ve shared more than a few items from this website as ways to explain to family and friends what I mean, perhaps you could do the same? Thank you for sharing your experience, I hope you find some relief soon.

  • D-bob
    3 years ago

    I am diagnosed with SPMS now, after RRMS for 15 yrs and have had many of the pain issues you mention. I was prescribes Oxycontin and morphine for 11 years and received a moderate amount of relief, along with some crappy side effects, and being treated like a junkie by the medical profession. I was also prescribed Baclofen for the spasticity.

    Then medical Cannabis became available in my state. Within 2 months, I had stopped all the narcotics, without any “professional” substance abuse treatment and had also weaned myself off of the Baclofen. Cannabis doesn’t work quite as well as an analgesic as the opiates but the trade off in having no side effects is well worth it to me. As far as spasticity, the cannabis actually works faster than the Baclofen and, IMO, works better.
    That was 5 yrs ago and I still use cannabis exclusively for these issues and am using the same amount I started out using. So far, no signs of any kind of “tolerance”

    Not saying this is right for everybody, but don’t let the “Reefer Madness” crowd close your mind to this option.

    Also, I am a retired Psych Nurse and I have experience with medications and knew how to safely withdraw myself from the opiates and the Baclofen. I would highly recommend anybody else get professional advice before trying this, especially with the Baclofen,since one of the side effects of improperly stopping the drug is death.

  • Devin Garlit moderator author
    3 years ago

    Thank you D-bob! Medical marijuana is a life saver. It’s really best thing I’ve tried. I really hope it becomes an option for more people soon. I even wrote a whole piece on my experience: https://multiplesclerosis.net/living-with-ms/marijuana-the-story-of-a-skeptic-turned-believer/

  • linda crawford
    3 years ago

    i can’t tell u how many times i’ve tried to explain this pain to my dr. and the people around me.they can;t see it,feel it or even comprehend what i’mtrying to say.thank u for your message.it helps keep me sane to know other members know how i feel.

  • Devin Garlit moderator author
    3 years ago

    Thank you linda crawford, remember, you are most certainly not alone! Explaining our invisible symptoms can be so difficult, I completely sympathize!

  • sunEz
    3 years ago

    My daughter (25) was diagnosed with MS in 2013. After trying many meds, the doc finally got the ms under control using Rituxin. in April 2015, she started experiencing pain and has had it 24/7 since. A good day registers a pain level of 6. The pain is all over her body and gets worse at night. She still works full-time but I don’t know how she does it. She doesn’t seem to fit any of the pain categories in your article. She has a horrible time trying to explain her pain, except for the burning pain at night. She has tried so many drugs and nothing eases the pain. I am looking forward to the article for treating pain. Hoping that there is something that we haven’t tried that might help her quality of life.

  • Devin Garlit moderator author
    3 years ago

    Thank you sunEz. I’m so sorry to hear of your daughter’s pain. Burning pain, especially at night, is something I deal with daily. I’ve tried a lot of things: Gabapentin (which is a very common medication that is very useful to many with MS pain), a TENS machine, baclofen, a cream laced with Ketamine, and a variety of other things, Lyrica (I know a few folks with MS pain that have been helped by this). I currently use Cymbalta daily (which feels like it might not do anything, until I ween myself off and then I realize that it really does help me a lot) and medical marijuana (which I use when times are really rough and it makes it all more bearable). There are options out there, but with anything MS related, it can take a lot of trial and error to find something (having MS can really make you learn patience). If her current neuro can’t recommend something new, I suggest trying another. I also suggest seeing a pain specialist. I went years thinking my MS specialist should be the only real doctor I see, but I’ve learned that seeing other specialists can be very important. I wish you and your daughter well and I’d love to hear how she’s doing. I was diagnosed when I was 21, so I understand some unique difficulties than can come up with getting the disease so young!

  • Molly R.
    3 years ago

    I just recently, in the last year, started getting the burning pain at night in my legs. Is there anything they can give you for it or anything you do to help it?

  • Devin Garlit moderator author
    3 years ago

    Hi Molly R. there actually are a wide range of things they can try. I would recommend talking to your neurologist and maybe even a pain specialist about it. Gabapentin is a very common medication that some people have been helped by. Others end up relying on medical marijuana, but there is a whole range of treatments that you can try out. Like many things with MS, it can take a lot of trial and error.

  • vjwebb59
    3 years ago

    I have a chronic pain condition called Allodynia. This is a particular type of sensory symptom that is in result to a stimulus, such as a person’s touch or even clothing or bed linens touching their skin. It is stimulus-dependent and only lasts as long as the stimulus is present. It is also known as ‘perceived pain.’ I have had this condition in the palms of both of my hands for over 15 years. And although it is stimulus-dependent it never goes away because I actually “USE” my hands all the time. Any type of rubbing, touching, hot/cold water, basically using my hands for anything. When it first started, a piece of yarn pulled across the palm of my hand felt like barbed wire. I am on 3 different meds to control the pain but it is always there.

    So this is another type of chronic pain condition that exists with MS and I’ve never come across anyone else that has this.

    Again, thanks for your articles on the many aspects of MS.

  • dkaruth
    3 years ago

    Hi vjwebb59,

    As you may have guessed from my post above, I have Allodynia too. Sometimes I can bear heavier pressure better than light pressure, i.e. a quilt is easier to tolerate than a sheet. A single strand of hair falling on my leg can send an electric shock shooting up my spine. The bupivacaine pump I have makes the pain much easier to bear. Sometimes I can even lay a sheet of paper on my lap without it being excruciatingly painful. Good luck to you! Now you know you are not alone!

    Best wishes,

    Denise

  • Devin Garlit moderator author
    3 years ago

    Thank you so much vjwebb59 for mentioning that. I’m very sorry to hear that you have to deal with it but I’m thankful that you mentioned it. Someone else may see your comment and it may help them immensely to see that they aren’t alone!

  • freedom
    3 years ago

    This article was meant for me today. I’ve been diagnosed now for 7 years. I’m doing great for me. I’m on disability and feel as though I’ve learned what works for me.
    I have moved to be closer to family as I need help at times. Had to get new doctors etc. Boy what a challenge. I have all the pain symptoms you listed and it can make me miserable at times. I’m on a very low dose of opiates as needed, muscle relaxers, etc. So here is my frustration…I have been told that all I need to do is deep breath…stretch…and my pain will magically disappear. I’m all in for combining all modalities for my health..but felt insulted as it’s my body..and I do my best everyday and I know what’s works for me. Sorry I’m venting but all I can do today is cry and feel like I’ve made a big mistake moving . Ugg. The invisibility of this disease…

  • Devin Garlit moderator author
    3 years ago

    Thank you Freedom! I think many of us can sadly relate to what you’ve mentioned! You need to exercise more, try this diet, try this supplement or shake. It’s maddening and demeans us and proves that the person saying it just doesn’t get it at all. Never feel sorry for venting, it helps! Remember that you aren’t alone, we’re all in this together, and need to rely on and think of each other when things go bad. Thanks so much for sharing your experiences, I appreciate it.

  • Mare
    3 years ago

    Dear Devin:

    I have MS pain since my diagnosis 19 years ago. I am still working full-time and without Pain Killers I would not be able to get either through the day or night. I take Hydrocodone, Soma (works good for the spasticity) and Gabapentin. I have horrible spasticity and the burning/stabbing (like a 1000 ice picks) in my feet at night. The leg pain is the worst during the day (mostly). Pain Relievers (Tylenol, Advil, etc.) DO ABSOLUTELY NOTHING for the pain. You could take the entire bottle and still be in agony. The so-called experts say that pain killers do nothing for the pain. I disagree wholeheartedly. I do not know if you take anything for either the pain or spasticity, but if you can take something, I would ask your doctor. The sooner you do it the better. It took me five (5) long years of suffering in order to obtain any type of pain prescription from my doctor (at a MS Care Center). Everyone is afraid of the DEA and that is making it much harder for the rest of us that legitimately need them. Peace my friend! Mare

  • Devin Garlit moderator author
    3 years ago

    Thank you Mare! I’ve actually tried a lot of things, including Gabapentin (which sadly seemed to have no effect on me at all). I currently take cymbalta, which I often feel doesnt help, until I try life without it and then it’s very noticeable. When things are very bad, I use medical marijuana, which makes doesn’t rid me of the pain, but makes it much more bearable.

  • Theresa
    3 years ago

    Thank you for sharing this, Devin. I know, for me, it validates what I feel on a daily basis (even if no one else can see the struggle). I have a lot of sensory issues – I have to be careful every day when I shower, because hot often feels cold and scalding oneself is not cause for celebration

  • Devin Garlit moderator author
    3 years ago

    Thank you Theresa! Although I never like to hear that people experience things like this, you are right about that validation it gives. There is something about know you aren’t the only one that really makes you feel a little less alone. For me, it makes it all a tad more bearable.

  • Kera
    3 years ago

    I completely understand your pain. I have such intense pain in my legs and arms that most days all I can do is cry. I get severe plasticity from the knees and elbows down. It is accompanied with sharp tearing pain that sometimes I feel is worst than labor pains. My feet are constantly numb leaving me open to a range of injuries that end up being worst than if I had feeling because I don’t know I am injuring myself till its to late. I now have Reynolds syndrome; where at the slightest bit of cold my fingers turn white and numb. It is extremely painful and can sometimes take an hour or two to return to normal; even after my hands have been removed from the cold. And when I say cold I mean temps around 68. I currently wear a pair of Isotoner gloves and 2 knitted gloves all at the same time and its no real protection. I am going to invest in a pair of battery operated heated gloves but they are kinda pricey.

  • Devin Garlit moderator author
    3 years ago

    Thank you Kera, So sorry to hear of your pain. My brother has reynaulds as well, so I am familiar. Very awful to have on top of MS, my sympathy goes out to you.

  • SteveMS
    3 years ago

    Devin: I, like many know exactly what this torture is. I have had 9 specific procedures *Rhyzotomys* at Johns Hopkins when a certain Neurosurgeon performed these procedures. His name, Benjamin Carson, who never talked about anything of a political nature. The last of the procedures was to hit the nerve with a high radio frequency. This left the right side of my face numb but I have been without the pain for 7 or 8 years. Since I didn’t want the more invasive techniques I chose this one but very few neurosurgeons practice this approach. I can only wish you relief.

  • Devin Garlit moderator author
    3 years ago

    Thank you SteveMS! Thank you so much for sharing that, I appreciate it!

  • Sue
    3 years ago

    Pain is ephemeral. Sometimes I just want to cut the twitching ankle, cramped foot, toe which is frozen. If I can stand on it or pop a baclofen, it will feel better within an hour.
    The real pain is knowing that I sometimes can dress myself and sometimes I need help. I don’t need a glass bowl to see the future, I’ll need to be dressed and fed. My brother’s m s progressed very quickly. He was38 and in a coma with a feeding tube.. my sister has been bedridden and catheterized for ten years. I try everything that’s out there and exercise daily. The daily pains are intense, but short lived. The future will be long and be more debilitating.
    Live as much as you can, today! Don’t put anything off for tomorrow.

  • Devin Garlit moderator author
    3 years ago

    I’m sorry Sue to hear how badly your family has been affected by our disease. Don’t loose hope for the future. There are new advances all the time. Everyone should, however, live as much as they can. None of us can predict the future. I like to think our situations help us appreciate the present even more than most. Thanks so much for reading and sharing your experience, it’s much appreciated!

  • Alice
    3 years ago

    I just wanted to say thank you for your posts, I was diagnosed in 2013 and although not new to the disease is am new to any support group or related sites.after reading your post it moved me to tears to finally see someone who does understand and that I’m not as alone as I thought.I have no support system in my life, actually the opposite. I am made to feel as though I am faking or exaggerating or to have it thrown in my face that I do nothing all day as though I’m lazy,I started having symptoms at 35 and went thru 2 years of Dr’s telling me that it was in my head or that I was only trying to get pain meds.I had to quit my job and am now on disability which leaves me feeling even more alone.so many of the things you talk about hit dead on. Putting yourself out there does make a difference in some people’s lives.wish I would have logged in sooner.thank you

  • Devin Garlit moderator author
    3 years ago

    Thank you Alice! You are most certainly not alone! It can be feel pretty lonely at times (it does for me often: https://multiplesclerosis.net/living-with-ms/invisible-illness-pain-not-looking-sick/) but always remember there are thopse of out there that are going through the same thing. Having people not believe us is incredibly hard, I always urge people to start sharing whatever they can from this site as a way to back up what they are saying. That’s actually how I got started here and started writing. I wanted examples that others can point to and say, see, this is what it’s like for me and I’m not the only one, it’s real. Thank so much for sharing your experience, I very much appreciate it!

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