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50 Shades of MS Pain

The 50 Shades of MS Pain

My mom and I both live with MS, but we have had extremely different experiences with diagnosis, treatment, and symptoms. I sometimes find it hard to believe what a difference the decade that elapsed between our diagnosis has made. Back when my mom first had symptoms it was not uncommon for an MS diagnosis to take years to make, and people were often treated as though their symptoms were all in their head. Some people became extremely wary of the medical community after they looked them in the eyes and insisted that pain is not a symptom of MS, despite the very real pain that they were in. Now as a healthcare provider, an MS nurse, and as someone living with MS myself I can’t believe what my mom and others went through. I have experienced first hand the many shades of MS pain, and I’m here to tell you with absolute certainty that pain is a symptom of MS.

MS pain cannot be categorized

As a healthcare provider we always ask the same questions when someone reports that they are in pain. On a scale of 1-10, how would you rate your pain? Is it sharp, dull, aching, or burning? Does it come and go, or is it constant? Does anything make it better or worse? Where does it hurt? My brain had been trained to categorize symptoms into neat boxes, until MS came along. MS pain refuses to be put into a box!

Sharp pains and numbness

Initially my main issue was numbness and sharp pains in both legs. It was very strange to be both numb and have pain. It seemed like it should be impossible to feel less and have pain at the same time. It was almost like the sensation you have when your limbs are waking up after falling asleep, but constant. I often describe it as feeling like “static”. Whenever I walk or exercise I know that I will have to deal with the static-like pins and needles from the waist down until I rest and cool off for a while.

Electric waves of pain

With my second relapse I experienced a completely different type of pain. I woke up one morning and it felt as though my left leg had been plunged into an ice bath. My whole leg was enveloped in an ice-cold burning pain. I couldn’t stand putting any weight on it at all because of the electric waves of pain that occurred as a result. It took a round of IV steroids to take away the freezing cold burning sensation and get me back on my feet after that.

I also experience hypersensitivity occasionally, especially after being overheated. When this happens I get sharp, shooting pains with even the slightest touch. Life becomes a constant game of “keep away” as I try to avoid people patting me on the arm, or even giving me a hug.

Jolts and sharp nerve pains

The most common pains that I deal with are the random jolts of sharp nerve pains that I get in my limbs, and the knifelike pain that shoots down my spine whenever I move my head. I also often struggle with the tight cramping pain of muscle spasticity. It’s like I just did an intense work out, only without the health benefits! Massage, rest, and heat are my go to management techniques for spasticity, and Neurontin luckily does a nice job of taking the edge off of the sharp nerve pain.

And don’t forget!

Not to be forgotten are the headaches, migraines, and the pain associated with using mobility devices that many of us live with. Many people with MS experience trigeminal neuralgia which is a severe nerve pain in the face that runs along the trigeminal nerve. And lets not forget the psychological toll that living with all these varies aches and pains can have!

There are 50 shades of MS pain. It is very real, and very different to everyone who experiences it. I hope those of us living with MS always find the courage to advocate for ourselves, and I hope that we as providers take the time to listen to what our patients are telling us.

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

  • Chucksue
    3 weeks ago

    I understand. MS just takes you on its own ride you just have to hold on and make the best of it I guess. I have all the pain you have and horrible joint pain my pain believe it or not is on all day every day. I can’t really get out of bed without wanting to collapse from weakness and pain. But I do have that greatis cat (Chuck) He never leaves my side. Thank the havens!

  • wolfmom21fl
    1 year ago

    OMG! yes.. when i was diagnosed i asked about pain relief. the doc all but patted me on the head and said “MS does not cause pain” REALLY?!?!? ugh.. now having changed Neuro’s i was given the go ahead to find a provider for medical cannibus. this doc absolutely believes MS causes pain. and yes.. there are definitely at least 50 shades of that pain.. on top of the MS i have several herniated discs in my neck and back and the electric, shooting pain from the neck into my shoulder is sometimes unbearable. i just do not understand how a neurologist could tell me that MS does NOT cause pain.. its ridiculous!

  • Pam
    3 years ago

    I know what you are saying! my dr. says there is no pain, although I hurt all the time. i’m now going on 1 1/2 months of a Charlie horse cramping on my whole left side. hands are freezing cold all the time. and I cant get an appointment with him till Mar. 15! so frustrated. how long does it take for these feelings to lessen?

  • Meagan Heidelberg moderator
    3 years ago

    Hi Pam! So glad to hear that you have an appointment soon! Here is an article to help you manage your cramping in your muscles until you see your doctor; https://multiplesclerosis.net/living-with-ms/tips-for-managing-muscle-spasms-cramping/. Feeling like that can vary from person to person, but hoping you can alleviate the pain! Thank you for commenting and being a part of our community.

    Meagan, MultipleSclerosis.net Team Member

  • fedupandconfused
    4 years ago

    Thank you for your wonderful post Stephanie and for everyone else who has shared their experiences. It’s wonderful to see what I have experienced is *normal* as the hardest thing for me has been to describe the various pain symptoms to my Dr and Neuro especially as it’s varied, intermittent and never as straight forward to explain in fact at times I’ve even questioned myself as my pain and symptom story has changed so much each time. I now know this is normal. The hardest thing by far has been to be told by my Dr and Neuro that MS does not cause pain, not only do I have to contend with something I hardly understand myself, I also have the two people I trust the most health wise telling me it’s not possible to feel this way as “MS doesn’t cause pain”. My Dr even told me last time I visited her that “you seem more concerned about obtaining disability benefit than you seem concerned about the medical issues”. In between tears I explained to her that for over two years and MANY tests and still no conclusive results I have not been able to claim ANY benefits and yet I am not fit for work. I have no self esteem, my legs only take me very short distances, my back constantly aches and my back and leg seizes up – and yet the medication only provides small windows of relief and I am never pain free, EVER. So whilst I may “seem” to not focus on my issues that is because I have explained things so many times that I thought if there was a cure, I’d have been given it. So what’s the point of banging on or whinging about how I’m no further forward? Of course I keep asking when I can claim benefits as we are struggling financially as my husband only earns a small wage as I was the main wage earner. We don’t have enough money to pay the bills, we’re constantly worried about losing the roof over our head and we can’t remember the last holiday or few days away and we NEVER enough to even have a day out anywhere so basically we are housebound. This creates STRESS and I’m worried my husband is going to have a heart attack with it all as people forget carers also do it tough. So I walked out of my Dr’s office crying and feeling even more stressed and exhausted and two months later I still can’t summon up the willpower to go back and see her again. I’m truly, finally done. I’m exhausted. It’s all too hard. At least with this article and the comments from other readers I can see I am not losing my mind and my varied symptoms ARE real even if they are random and hard to explain and make no sense. I have realised that even if my Dr and Neuro don’t want to believe me “I” know it’s real and it’s not in my imagination. So thank you Stephanie and thank you to everyone else for sharing – I really do appreciate it.

  • Dianaburke
    2 years ago

    Your story is mine to the hilt! My cognitive decline is so bad I can’t tell my story in print. Thanks for telling it for me!!

  • Dianna lyn
    4 years ago

    Yes, there are 50 shades of PAIN and then some. I have had MS for a long time, even before my diagnosis. I see it now, but was in denial because I could take care of myself and the people that I love. I deal with extreme pain on a daily basis, last year 2014, I was doing better than this year. No one knows our own bodies, except us. We know how much pain we can take, without exploding. I am now going through alot of exploding pain, it’s in my back constantly and my right leg and hip area. The headaches are worse now than ever! My pain is controlled with meds, yes, but I also use heating pads to go to sleep at night. Pain is not your friend and there are times that my poor husband has to wait for hours for his dinner in the table, because of the pain issues that I go through, but he never complains, and says he likes my food cooked slower, it’s better . Thank you for your post because doctors need to show compassion for MS patients, instead of being unprofessional and raising their voices.

  • Ercox
    4 years ago

    Reading about someone else having numbness and pain at the same time is very comforting to me. Alot of people without MS are confused of how you can experience this… Thank you

  • Fallfoliagegirl
    4 years ago

    Hi, After reading your post, I gave it to my husband to read. He said if I hadn’t given it to him and he just happened on to it he would have thought I wrote it about myself. I would try to explain the lightening sharp pains shooting through my legs. I was diagnosed with, what 2 different neurologist from 2 different states called, tic delaroueux (now I guess they call it trigeminal neuralgia?) I was 15 yrs old. I gone through all that you’ve mentioned, plus vertigo. But I have this new system that I’m curious about… it feels like a helmet or hat on my head. A numbing feeling. A few times a day I feel like I should take a hat off. It encircles my whole head. I also feel a numbness in my face. My cheeks and nose area under my eyes. Has anyone else felt these types of symtoms. My symptoms are also pretty much constant. Fatigue is chronic at this point. I push myself constantly to do the smallest of things. Thank you for your voice. FFG

  • Lovee
    4 years ago

    I can’t believe I finally found someone that actually has that “cap” on your head symptom. I told my neuro and got a very strange look. I also feel numbness around my face, lips, between lips and nose. It also feels like my lips are all cut up, although they are not. Just a few of “my favorite things”, but wanted to comment on the “cap” thing. Never saw anyone mention it and it is very weird and irritating. I’ve had MS since 1975 so my symptoms could fill several pages. My neuro states he can no longer write pain med for me (tylenol + codiene) and is sending me to a pain management Dr. I’ve been there about 7 years ago with no success, maybe they have some new techniques? Just passing the buck I think. Thanks for your comment!

  • Fallfoliagegirl
    4 years ago

    Hi, After reading your post, I gave it to my husband to read. He said if I hadn’t given it to him and he just happened on to it he would have thought I wrote it about myself. I would try to explain the lightening sharp pains shooting through my legs. I was diagnosed with, what 2 different neurologist from 2 different states called, tic delaroueux (now I guess they call it trigeminal neuralgia?) I was 15 yrs old. I gone through all that you’ve mentioned, plus vertigo. But I have this new system that I’m curious about… it feels like a helmet or hat on my head. A numbing feeling. A few times a day I feel like I should take a hat off. It encircles my whole head. I also feel a numbness in my face. My cheeks and nose area under my eyes. Has also none felt these types of symtoms. My symptoms also none re pretty much constant. Fatigue is chronic at this point. I push myself constantly to do the smallest of things. Thank you for your voice. FFG

  • silverblue
    4 years ago

    Thank you so much for answering me. My mother was bedridden and totally dependant on me for 2 years. I just lost her last year. During that time I had no desire or time to think about MS. When you can not afford Medical care, it Is easy to be In Denial. I knew I had a severe problem with my back, but as I said the pain never goes away. I would read about remission and think maybe I do not have MS as I am never in remission.
    This website, the wonderful people here, and reading their stories have made me have to accept my MS. The tingling, heat sensitivity, cognitive problems,and horrible fatigue are just too much evidence to deny. Thank you for caring enough to take the time to help me.
    God Bless you.

  • itasara
    4 years ago

    Nice Article. I agree it is much easier today to diagnose MS, but I belong to a few MS groups online and I read a lot of stories and still some people today to to doctors who are are either not knowledgeable or do not go thru the MRI route and order a number of tests for a lot of years before diagnosis, Some doctors treat (or ignore) the many symptoms that some people have until finally an MRI shows something definitive. I had this tightening in my chest now and then for some time which both I am my doctor felt were muscular contractions.. I had no other symptoms so why do an MRI? I only found out what those squeezing sensations were after diagnosis (and a specific symptime) with MRI and I read what they were on the internet after diagnosis. Some may have questionable MRI lesions, but some have typical lesions with symptoms and still go thru other tests; I never had to-the lesions were specific for MS. Some tests may be legitimate but some are not. Maybe some day there will be a definitive blood tes; I read some researchers are working on this. Some I read have MRI’s every 6 mo to every year after diagnosis which sounds pretty unreasonable to me. The activity of the lessions do not necessarily relate to what the patient is going thru symptom-wise and if all is well one may not want to change their medications regardless of what the MRI shows. In my case my situation has been stable and I have not had an MRI since my diagnosis almost 10 years ago. This may be the year, but I agree that if I am doing well why do another pricey MRI? I recently read that some lesions may be in the grey matter and do not show up on an MRI which could account for those who seem to have MS but show no radiological proof. So it is not always an easy phenominum to diagnosis but often it is and it not diagnosed early when it could be.

  • Stephanie Buxhoeveden, RN, MSCN author
    4 years ago

    jjfromga77 asked a great question about how to tell if you are having a relapse or if you are in remission. If you have been diagnosed with RRMS it is common to have residual symptoms, such as numbness, even when you aren’t going through a relapse. If you have progressive MS new or worsening symptoms occur without any periods of remission, and you may or may not still have relapses. You might find these two articles I wrote helpful:

    https://multiplesclerosis.net/living-with-ms/multiple-sclerosis-101-relapses/

    http://justkeepsmyelin.com/post/84929660089/am-i-in-remission-or-am-i-relapsing

    I hope that helps a little bit, let me know if there is anything else I can do to help clarify!

    Stephanie

  • silverblue
    4 years ago

    Again, thank you. I have no Insurance and can only afford to see my nureologist once every 3months. The only meds I can afford are pain Meds. My back pain totally dictates my life. The pain meds only relieve 40-60 percent of the pain and that is on a good day. I can’t afford tests and have never had an MRI. My focus has been on the back pain and numbness and weakness in my legs. In the back of my mind I was thinking my doctor was wrong. It isn’t MS just a very severe back problem. I don’t want it to be MS, who does?!
    But the fatigue, UTI’s, bladder issues, cognitive issues, dropping things, ect. are too much to ignore now.
    My daughter took me to the Ga. Aquarium recently for my birthday. I did not make it to even the halfway mark before my back and leg gave out. I tried with everything in me to push through the pain for her sake. I couldn’t. My daughter had to push me in a wheelchair the rest of the day. I waited until she went to the ladies room and I cried . Not for me. It was BC she had to see her mom in a wheelchair and it had to have upset her.
    I feel guilty when I fall victim to self pity. There are so many people with heartbreaking, fatal diseases. But it gets hard when you can’t even clean your house or God forbid have to go grocery shopping and carry the food Into the house to put It away. I do not want to be a burden to my daughter. I am afraid. Thanks for letting me vent.

  • 2ndp
    4 years ago

    Thank you! I have tried many times to put in words what I’ve been through over the past 30 years, you nailed it! After my first MRI the Dr told me I was hysterical. I’ve experienced what I call he sunburst pain, the shattered crystal knee, the MS hug, extreme weakness, round feet when I was still walking and most recently Trigeminal Neuralgia (I know why it’s called the suicide pain). I have also done the pills the shots, infusions and chemo. I think it’s interesting that we’re led to believe everbodys experience is different when your story and those posted here sound so alike. I’m now diagnosed secondary progressive with no treatment available. People I have been very fortunate my husband has been my care provider through it all.

  • KerouacKat
    4 years ago

    Same story here, but I had a neurosurgeon operate on my lower spine before my DX of MS, and when I went back to him with many of the same symptoms and a few new ones, he told me it was all in my head (late 1980’s)! I left in tears totally defeated. About 6 yrs. later my GP decided to do an MRI of my head (after some eye issues!) and he called me sounding like I was about to get a death sentence and told me I had MS at that point I was relived!! I went to another Neuro who clinically Dx me MS, he was 1 hr away. and I went tried Interferon, and all the ABC’s could not tolerate them and refused Tysarbi (sp) as 12 people died upon it’s first release. I did well even with the pain, the spasms, the gastro hell, the cold spreading nightmare down my leg, my legs in constant movement at night, or my running in my sleep as my husband calls it, the horrible MS hugs, or the unrelenting clumsiness. I tried to get above it which gets weary and even though the Neuro told me I would probably be in a wheelchair in 10 yrs I struggled to continue my job which was extremely physical until the fatigue was no longer just another symptom but a BRICK WALL and there was no over, no under and no around it. Provigil just made my head race not my body! Where I live there are no MS groups, only traumatic brain injury, and MS is pretty traumatic but I couldn’t really connect there. My adult children never seem to get it, they don’t even take the time to look up the symptoms though I provided both of with good college degrees!! My best friends and primary family live 1500 miles away. I have begun SPMS and have been experiencing even wasting..I am not sure which pain can be worse the physical pain of MS or the emotional pain of knowing that those you love the most can be just ignorant about such a debilitating and even possibly genetic severe devastating Immune and Neurological progressive illness and not even be curious or empathetic?? Then there’s the depression and the chicken or the egg business, I was not depressed I was always some one who picked themselves up, dusted themselves off and started all over again, when I had my relatively pain free physical body….

  • mswarriormama
    4 years ago

    Thank you for writing this! I’m a huge advocate for pain management with MS and really anyone who’s told they aren’t in pain. I’m working with my amazing neuro and pain management doctor to educate others about MS pain. My question for my first neuro who insisted there wasn’t pain with MS was, “how do you know? If ms can cause all these strange sensations, including tingling and numbness, why can’t it cause pain sensations also?” Instead of being reasonable and answering my question, he told me to stop being a baby and deal with it! Needless to say, I’m also a strong advocate against this doctor! I seriously don’t understand why there are so many in the medical field who refuse to believe we experience pain! I have excruciating spasticity pain in my right leg. I have other pain, but that’s my most painful and life affecting pain. I dare one single person to tell me it’s impossible and I’m a liar. I have statistics I cite, and a rant like no other! 😉 I’ll be sharing your post for sure!

  • silverblue
    4 years ago

    You said so much of what I feel. One thing I would like to draw attention to is how some doctors treat us like we are drug addicts, just wanting pain meds. It is humiliating and demeaning.
    I HATE the fact that I have to take pain meds in order to function!! We already suffer from fatigue BC of the MS and pain Meds only make fatigue worse.
    Like I told one doctor, I would be so happy if you could cure my MS and I never had to take another Narcotic pain reliever again.
    We go through pain and suffering without some heartless jerk treating us like an addict.

  • Connie
    4 years ago

    Stephanie, Enjoyed the article very much. I am an identical twin..both with MS.
    She is doing much better then me. But, the pain factor for both of us is very real.
    Thank- you Connie

  • fedupandconfused
    4 years ago

    Wow thank you so much for sharing this Stephanie. My Neuro and Dr told me quite categorically that MS does not cause pain and my pain symptoms were not MS related. I have constant back ache and a feeling all the time that you get when you ache with flu, that dull flu feeling when your arms and legs weigh too much to lift up. Walking is like wading through mud – you want to move but every step feels like you’re walking on the moon, that slow laboured walking where every step is heavier than the last. No wonder we always feel fatigued, just walking into another room feels like I’ve run a marathon. Also constant on and off pins and needles in the hands alongside random hot spots in the legs and in random places on my foot. As well as this is a tight feeling in my chest, like I have a girdle on, you know that feeling when your breathing is labored due to a chest infection (only this time there’s no infection). And then every now and again when trying to walk my right leg gives way, and it becomes such a normal part of life that I just wince and carry on as if it’s normal – and my legs feel like jelly with no scaffolding to hold them together. So yes, you ARE right we DO feel pain and it’s a different kind of pain depending where it is and yet still some in the medical profession tell us we are imagining it. So thank you Stephanie. Thank you for writing this wonderful information that confirms to me I’m not imagining it. I wonder if the medical profession realise how they make us feel when they come out with these stupid and irresponsible remarks. No wonder MS patients experience depression – telling an MS patient they are imagining it is not only irresponsible it also doesn’t help for their low self esteem which is already at its lowest 🙁 Thank you Stephanie for sharing this I REALLY appreciate it.

  • silverblue
    4 years ago

    Hi. This is my first post. I am very confused by remission. Everyday I suffer constant, severe back pain. My legs are weak and I have numbness and tingling in my foot, although it is not as constant as my back pain.
    My question is is this normal for MS? I have no Idea what remission is as I am in pain 24/7. Unfortunately I have no insurance and can not afford an MR . This constant, severe, and life altering pain makes me question whether I actually have MS or something else. My neurologist feels very strongly that i do indeed have MS and he has been treating me for over 10 years for my back and leg pain. Severe fatigue is another problem that I live with. Is it possible to have MS and never be In remission?

  • CatDancer
    4 months ago

    A brilliant post and one I needed to read yesterday. I came back from a neuro appointment. I told him about the different types of pain I’d been struggling with and he told me, MS does not cause muscle pain… I almost fell out of my chair. His answer was: MS is a disease of the brain and spinal cord… umm, yeah I think I know that. But how can damaged nerve sending rogue signals throughout our bodies not cause pain?

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