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Is MS Pain Real?

Is MS Pain Real?

I think that there is a lot of contradiction on this specific topic/symptom when it comes to MS. For a long time, it was believed that those with MS did not have any pain caused by the disease…

I know that now researchers have confirmed that there is pain associated with multiple sclerosis patients. Not ALL patients, like many other symptoms of MS, will or do experience it.

So why am I writing about it you ask? Well because, I think there needs to be more awareness brought about it. So I’ve come up with some… explanations for MS Pain.

MS Pain cannot be explained at all times. What I mean by this is that sometimes we have pain from spasticity, which can be relatable to some people. Other times… we have pain from say, an MS Hug… we all know that there is no one who can relate on that kind of symptom, unless you have MS yourself and have experienced it.

Another kind of pain that I have experienced, is dysesthesias. That burning sensation we get…As well as pins & needles at other times. I can explain the pins & needles part to others, basically saying like how your foot feels when it falls asleep at times. But the thing is, that goes away for them. But how do you explain being on fire? It’s not like, “Hey have you ever been on fire before? Because that’s what it feels like…”

Needless to say that I’ve been a “walking accident” my whole life… meaning that I was a klutz and broke a lot of bones… and not just a simple break, we’re talking had to have surgery and pins to put me back together again. So with that being said, I’ve dealt with a certain amount of pain growing up from always breaking something.

What I really DISLIKE and what a lot of people don’t get (healthcare people, mainly at hospitals) is that… if I am coming to you… saying I’m in A LOT of pain. You ask me on a scale of 1-10 (10 being the worst) what number am I at… If I tell you I’m at a 6 or 7… that’s like a normal persons 10 (10+). I have a high pain tolerance and I just deal with it until I see my doctor, or can call them, etc. But if I go to the hospital… HELLO! I’m not just someone looking for pills, trust me, I take enough of them already… I don’t want to add to it.

Sometimes the burning feeling gets to be really bad, even though I’m on medication to help deal with that specific symptom. But there are times that it just burns and if I’m touched… I want to scream. I don’t think people realize how hard it is to deal with… especially being a mother. What am I supposed to say to my kids? “Don’t touch mommy, it makes mommy hurt a lot”… uh… no thanks. Needless to say my kids are 5 & 8, so it’s not very easy to explain things to them in detail with my MS.

Those close to me have come to learn that I don’t always voice what’s wrong at that certain moment… so they watch my facial expressions, or how I move around. Interesting enough… they can tell when something is wrong without me even saying anything. (Kudos to you, mom.)

Anyways… back to the subject at hand. I thought that I knew the definition of pain … way before I got diagnosed with MS. But after dealing w/ the symptoms that I have and certain things I have to deal with while living with MS… it honestly gives pain a whole NEW definition.

I think that there are too many different ways to experience MS pain, to even list completely. But that might just be me…

xoxo

Ashley Ringstaff

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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

  • Duderock67
    2 years ago

    I stay at varying degrees of pain all day every day. With the current opioid epidemic being blasted on the news I’m just another pill popper in my neuro’s mind. He stated emphatically that pain meds are not available for me. Sincerely considering moving to another state where medical cannabis is legal because the one time I was fortunate enough to try it I was pain free for 6 hours.

  • Ashley Ringstaff moderator author
    2 years ago

    Duderock67 – I hate it when people look at me like I’m just wanting to take pain meds non-stop… it’s like, no I don’t … I just don’t want to be in any pain! Is that so much to ask for?

  • Kera
    2 years ago

    For me I get extreme pressure in my legs from the knees down and in the arms from elbows down. It’s muscle pain so intense that all I can do is walk. After 48° I will give in due to the exhaustion from no sleep and the pain. I end up in the ER getting morphine injections to make it stop.

  • Ashley Ringstaff moderator author
    2 years ago

    Kera,
    Sorry to hear that you have to deal w/ the pain also. I’ve had times where I’ve been in so much pain that nothing helps but IV meds. 🙁
    xoxo
    Ashley

  • Julie
    2 years ago

    When asked by my doctor about the pain I have, I tell him it feels like someone has hammered a nail into my big toe and set it on fire.
    That burning then travels up my leg where it sits all day and night. He’s never questioned the pain I have. He tries to give me meds, a mix of them sometimes but there is no combination of drugs that helps. Dealing with this for almost 17 years now it is worse some days than others but I promise, there is REAL pain with MS.

  • Ashley Ringstaff moderator author
    2 years ago

    Julie,
    I’m glad to hear that your neurologist actually listens and believes what you’re saying, first off.
    Still hate the fact that we have to deal with all of this. I don’t think people understand the symptoms that come along w/ the diagnosis. We’re not just fighting back against relapses, but we’re fighting back against the day to day symptoms.
    xoxo
    Ashley

  • ilisagirl
    3 years ago

    Oh yes, the pain is VERY real. There is no words to express my disgust with PA when he tells me MS does not cause pain…I just want to scratch his eyes out and set him on fire! So very frustrating!

  • Ashley Ringstaff moderator author
    2 years ago

    ilisagirl,
    Sorry to hear that your PA doesn’t believe in you. I wish their was a way for people to some how SEE the pain we’re actually in.

    xoxo
    Ashley

  • cw
    3 years ago

    I was a little surprised by the title of the article – I didn’t know anyone questioned MS pain being real. Glad you wrote the article then.

    I have dysesthesias (never knew before what the technical term for burning was until now – thanks), trigeminal neuralgia and way too many other types of pain from MS and other conditions. For me pain was always my normal – always at a 5-9 on their scale. I also don’t really have much feeling on my skin – I never know when I cut myself or get an injury. Nerve pain is one of the worst pains imaginable in my opinion. Tried all the meds (neurotin, lyrica, tegratol) and I’ve reacted negatively to all of them. Pain meds don’t work or I react to them. I hope no one else ever experiences nerve pain ever again!

  • Ashley Ringstaff moderator author
    2 years ago

    cw,
    Unfortunately people DO question about MS & Pain… which is insane. Symptoms aren’t listed because they aren’t ‘painful’. There is nothing ‘pleasant’ about any of this.

    Sorry to hear that you have to deal with all of the pain also.

    xoxo
    Ashley

  • Shewchuk68
    3 years ago

    Good morning everyone!
    I need help or to feel I’m not alone.

    This morning I was woke up to the dreaded what I call the dreaded scorching sword from hell down the side of my left leg.
    It starts from my hip all the way to my knee.
    I can still feel the residual effects of it.
    It feels like my leg has literally been burned, but from the inside.

    I scared my husband straight out of sleep. It’s not the first time it’s happened, but this was the worst.
    He just held me while I sobbed.
    I’ve been through a difficult almost fatal childbirth, I had a cyst on my ovary and tube that ruptured.
    Two of the most painful events in my life.
    I have to say this was up there with it.
    Afterwards I got violently sick from the pain.
    What is happening to me?
    My leg feels like it’s on fire right now or maybe smoldering after a fire.
    It’s so hard to put this pain in words.

    I will be calling my doctor today, but I would rather hear from people such as myself.
    Is this going to get worse? Or a constant thing?
    I’m so scared. Some nights I dread going to bed because I can feel that leg trying to do it again.
    It almost builds up to it.
    I’ve tried to lay in every position to stop it and nothing works.
    Sorry I’m rambling, again I’m scared.

    Thank you for listening.

  • DonnaFA moderator
    3 years ago

    Hi Shewchuk68, I’m so sorry to hear that you had a rough morning. You are most definitely not alone, and I’m glad you reached out here.

    Pain describes the different kinds of pain associated with MS. While there is no conversation that comes with this, it’s a great resource to affirm what you are experiencing. The 50 Shades of MS Pain does have some conversation accompanying it. Please feel free to join, or to reach out to community members whose comments resonates with you.

    The final article I’d like to share is Prescription and nonprescription medications for MS discusses some medication and the symptoms they treat. This may help you formulate some questions to bring to your doctor.

    I hope these articles help you to know that you’re not alone. We’re glad that you’re here. We’ll be here for you whenever you need to chat, need information, or just need someone to listen. -All Best, Donna(MultipleSclerosis.net team)

  • Julie
    3 years ago

    I once asked a neurologist how something numb (my legs and feet) can hurt so bad. She told me, “Julie, your nerves are sick, not dead”).
    This is the best explanation I have ever got. The numbness of my left thigh that has been numb since a huge attack in 2001, I have never gotten feeling back. Yet I still get stabbing, icepick like pain in the numb area. Yes, there is pain with MS. Most other MS’ers I know can attest to this.

  • Azjackie
    3 years ago

    Words can not explain my thanks for this article Ashley! I am one who is learning the impossible task before researchers to find a cure. There are billions of neurons in the brain and anywhere along those neurons there can be damage. Wow!

    I suffer from extreme thoracic spine pain. The pain consists of tearing, twisting, burning (I’ve taken my temperature during this psuedo-relapse exacerbation 104 degrees), and breaking feeling. I’ve had a compound fracture of my fibula and talus, frankly it felt better and the pain didn’t last as long. Almost like a repeated kickboxing cage fight. I am dropped to my knees. My new Neurologist understood prescribing Tramadol as needed. Prior doctors wanted me to see a psychiatrist. Are you kidding me?

    I am glad there are people who understand. It helps. Thank you all for your compassion!

  • afj356
    3 years ago

    A bazillion thanks for writing this article!! I felt alone in my struggles with doctors and hospitals not understanding the severity and constant-unrelentingness type of pain I suffer from on a daily basis. I only wish that more people would take the time to try and understand that these struggles we deal with on a day to day basis are real and we need doctor’s to pay attention and work with us to try to find ways to make us more comfortable.

  • DonnaFA moderator
    3 years ago

    Hi afj356! We’re so glad this article helped you feel less alone.

    Trying to communicate with doctors can be both intimidating and frustrating. Sometimes, especially when we’re feeling compromised, it’s hard to remember that they really work for you! We have a great article with Four Tips To Help You Get Better Care From Your Doctor And Pharmacist .

    If you are not happy with your care team, we have a couple of articles that can support your decision to change doctors, and provide information on finding the best doctor for you: Choosing the Right MS Doctor, and How Do I Find a Doctor? Help Is Here!.

    We’re glad that you’re here, afj356, and we appreciate you reaching out and sharing what’s on your mind! We’re always here to listen! -All Best, Donna (MultipleSclerosis.net team)

  • Tasia Russell
    3 years ago

    What I really want the doctors to tell me is what do they mean by a 1, a 2, a 3, a 4, a 5, etc. I want their definition of what each of those 1 to 10 numbers mean. How can I relate to the doctors what my pain is in a number when their scale my be linear, while mine is exponential?

    I live with being in pain all the time. Most of the time I mentally iron out a bedspread with the word Pain on it and fold it up and tuck it away. How elaborate the word PAIN is embroidered and embellished will reflect how extensive it is then. I have acknowledged it exists and now plan on living my life. I try to put as little attention on my pain as I can. If I paid attention to my pain, I would be curled up in a corner and not moving at all.

  • eva
    3 years ago

    From my book Black Patent Shoes Dancing With MS, I am now 72, fully mobile and symptom free.
    … recovery from episode in 1972 …
    All I have to read is my dear old physiology text. On one index card I had noted: `Pain — during nerve regeneration p. 267′. There is a subsection titled ‘Imperfections of Regeneration’ which discusses reasons why physiological recovery is always to some extent, imperfect.
    After three readings, it starts to make sense. Although this information is written about nerve regeneration in the peripheral nervous system, it seems reasonable to me that the symptoms could also apply to re-establishment of function in the central nervous system.
    Samson Wright, the author, writes that during repair, strange connections are established to the cerebral cortex where a stimulus is interpreted. As new connections are established, they can be identified incorrectly. If this can be overcome, it will only be with prolonged practise. Accurate sensation returns very slowly, or at best not quite completely. As the author writes:
    “Damage to any part of the nervous system disturbs smoothness of working and until compensation has been established, the functional failure is more severe than can be accounted for by the anatomical lesion.”
    It’s been less than three months since the onset of disease activity, so I may well have been too impatient. There hasn’t been enough time for functions to sort themselves out, so I have to keep working on everything.
    In a better frame of mind I continue reading about the connections between pain and itch, discussed under the heading, ‘neural paths for pain’. Itch originates from the stimulation of superficial free nerve endings in the skin. Pain arises from deeper nerve endings and many other structures. Itch may be sub-threshold pain. The accuracy of localization of pain is based on how precisely touch is localized. I struggle to organize these snippets into a picture that I can use to relieve the pain. What if burning pain is also subthreshold pain arising from imperfect connections? Could burning pain also be a misinterpreted sensation? What if, when I move, my skin sends messages that are interpreted in healing nerve cells as pain, instead of correctly, as movement?
    In great excitement, I refine my theory. Let us suppose burning pain is subthreshold pain due to localization of the stimulus of movement. If I use heat rub to create a real sensation of heat, will that overcome the false messages? Although I fear that the ointment might cause even more discomfort, I apply heat rub to a small area along my right shinbone where there is most pain. In a few minutes the burning pain subsides and the area is actually cool. In about 20 minutes the burning pain starts again but less intense than before, so I apply more heat rub to a larger area and wait.
    By the end of the evening I have determined that the applications of heat rub can give me relief for almost 30 minutes after the initial flush of heat. That window in the pain gives me enough time to fall asleep. In the morning my legs are cool and as the day progresses the pain returns, but now that I know what to do about it, I’m not anxious.

  • Shewchuk68
    3 years ago

    I have a hard time describing my pain to people and my doctor.
    When the pain began in my legs. I told them it felt like growing pains from hell.
    But, some people never experienced growing pains.
    I just get that look from my doctor that makes me feel stupid.
    I guess it’s an ache and burning at the same time.
    Now it’s started in my arms which makes it difficult to work. Typing is excruciating.
    Does this make sense to anyone?

  • JanG6036
    3 years ago

    I tell people and my DR. if they remember getting sun burnt? If you scratch a sun burn that sudden burning pain is the pain and burning I feel in my Face, arm, eye,neck, hand, back of heat, roof of my mouth, nose,tongue, and gums. and it lasts from 30 min to 2 hours sometimes longer

  • DonnaFA moderator
    3 years ago

    Hi JanG6036! Thanks for sharing that insight! That’s a great reference to use to communicate what you are feeling in a very understandable way. Thanks for being part of our community! -All Best, Donna (MultipleSclerosis.net team)

  • yuisah
    3 years ago

    What meds help the burning

  • JanG6036
    3 years ago

    I have to take Oxcarbazepine 600 mg per tab 5 tabs a day ( that is what the scrip is saying but sometimes it 6 to 8 tabs a day or I suffer threw it

  • 2bpcf9p
    4 years ago

    I tell my Doctor, I have two pain levels deal with it and come see you.

  • @masbrautigam
    4 years ago

    I am glad you chose this subject as not many people know or are aware people with MS have pain. I have aim everyday and it sucks.medication is supposed to help but it doesn’t.of course you get the’ it you look so good’ why don’t you run with your dog’. Pins and needles drive me insane especially while traveling and being jet legged.Great story 🙂

  • @masbrautigam
    4 years ago

    I am glad you chose this subject as not many people know or are aware people with MS have pain. I have aim everyday and it sucks.medication is supposed to help but it doesn’t.of course you get the’ it you look so good’ why don’t you run with your dog’. Pins and needles drive me insane especially while traveling and being jet legged.Great story 🙂

  • Julie
    5 years ago

    I have been in pain with burning up my legs and what I call the “occasional ice pick” in my thigh. My neurologist has heard it all from me and all hes does is throw more pills my way. Surely there is a better solution.

  • Shewchuk68
    3 years ago

    OMG! I thought it was just me.
    I call it the burning sword. I can feel it coming on in my thigh and I panic.
    It hurts so bad and leaves my thigh sore afterwards.

  • Teri
    5 years ago

    I have always had pain but I don’t talk about it much, except to my neurologist. Options are not the best and other people don’t understand because evidently, I am “superwoman” and look so good. I am glad I can disguise it. Those closest to me always know

  • Annie
    5 years ago

    Wow I’m amazed at how attentive the people in your life are. Very few people can look at me and recognize that I am in agony. And like most of us it gets old telling others about the pain and the hurt so I just keep it to myself. Most people just want you to keep plugging along anyway. I would love to have that level of support.

  • Tsmith70
    3 years ago

    That kind of recognition can be a double edged sword though. Or maybe I just have 2 of the worlds worst adult kids. They recognize when I’m in pain, ask me about it, then complain that I always have to be the victim, that I take too much medication, and everything always has to be about me. (I have 3 kids, my oldest isn’t in anyway like this.)

  • Candy
    5 years ago

    Thank you so much for being a voice. I think we need our own pain scale. Sitting here I’d say mines an 8, yet I’m functional. As you said, I don’t go unless it’s at least a 20 to me.
    Hope you heal quickly from fall.

  • JanG6036
    3 years ago

    they ask me from 1 to 10 I say during the attack ( TN ) its 20+ but at that particular moment its a 15+ and no Our scale is much different then the norm

  • Ashley Ringstaff moderator author
    5 years ago

    Yeah – my pain scale isn’t a ‘normal’ pain scale… lets put it that way. When you live with some sort of pain everyday, your scale changes from the ‘normal’.

  • Linae
    5 years ago

    I was diagnosed in 2002. My first symptom before losing the feeling on the entire right side of my body was pain. For several years it was on again off again but for the last 6 – 7 years I have been in daily pain some days to the point I cannot get comfortable sitting or even lying down it is so painful to the touch. I filed for disability in 2012 and when being examined by the disability doctor I tried to discuss with him my pain. He said, “MS does not cause pain”. I tried to discuss this with him calmly but he would not allow it stating he had been a doctor for over 30 years and he had never heard of MS causing pain and that he knows what he is talking about.

  • Shewchuk68
    3 years ago

    I’ve considered apply for disability of course for MS and I have arthritis in my hips and spine. Now it’s in my knees.
    I’m so scared because I’ve heard horror stories.
    I have never heard of being examined by a disability doctor.
    I go to the Shepherd Center in Atlanta and they told me they would take care of everything.

    It makes me so upset for you that he said there’s no pain with MS.
    That’s so wrong.

  • imedicus
    5 years ago

    well, maybe your Md might want to spend a few weeks in a MS treatment center and perform an overall consensus with the thousands of patients that daily complain about MS related pain. IT IS REAL! As I write to you rigth now, I can barely move , it seems like every muscle, tendon, joints has ruptured! I have been on a transdermal pain med for 3 years, and it still hurts!
    Tell your MD, there are plenty of things that are not taugth in med school nor do they appear in med books, but you learn first hand from years experience from what really teaches, your patients!
    How do I know? I am a doctor , a very tough woman, a mother of a 24 and 16 yr old daugthers. And this pain can get to be unbearable!!!!

  • Ashley Ringstaff moderator author
    5 years ago

    WOW… some people… I just don’t understand how they can say that when there have been clinical studies and research done to show that there is pain associated with MS.

  • Nobu
    5 years ago

    My first and ongoing symptom. I was also first told that this was not MS but ideas have changed. I now take Cymbalta for neuropathic pain in legs and what a difference it makes. The pain does not go away but it is certainly much better and easier to tolerate. Pain in my legs and knees – old friend since this all started back in 2000.

  • Shewchuk68
    3 years ago

    I too was given Cymbalta for my leg pain, yes it did help some, but the side effects were not worth it.
    Just a few things of many that it did was, I would sweat so much that my entire head would be wet and that would be me just standing there talking to someone. It was so embarrassing.
    Then my hair started falling out.
    There is now an FDA warning against that stuff.
    I had to wean myself off because the the withdrawal symptoms were horrible.
    I had to pay out of my own pocket to have a compound pharmacist remove beads every week.
    The leg pain came back in full force, but i was no longer on that evil drug.

  • Ashley Ringstaff moderator author
    5 years ago

    I don’t think people realize how much our bodies start accepting ‘pain’ as normal. Just depending on the ‘level’ of the pain…

  • Dianna lyn
    5 years ago

    Ashley,
    I also want to say, my children are older now, and are very understanding of my ms condition and I am very blessed, your children will be also..But yes, the pain, there are times, when I wonder if I am going to live through it, especially at night.

  • Candy
    5 years ago

    Dianna, please hold strong. I also hate the nights. My pain and spasticity are so much worse. Can you take lavender baths before bed? I try to find ways to calm myself before I go to bed. I also put a massage pad on the bed to fall asleep.

  • Ashley Ringstaff moderator author
    5 years ago

    Ugh! I know that they will understand later on but I can’t help the guilty feeling I get when it happens.

  • Dianna lyn
    5 years ago

    Ashley,
    I am so sorry..i was just thinking about all the past years, I had with my children, oh Gosh I see it now, why I couldn’t take the normal bear hugs like the rest of my family..my sisters could with my mom, but I couldn’t handle it either, the pain was too immense too sharp, I would back off..okay now crying…thanks for enlightening me..

  • Ashley Ringstaff moderator author
    5 years ago

    Aw girl! I don’t want anyone to cry over what I write – I just want everyone to know that they aren’t alone… and that we all experience MS similarly at times, but not exactly the same.

    Hang in there. xoxo

  • Nathan J. Olson
    5 years ago

    The pain is one of my worst symptoms. Burning pain that gets so bad on the top of my feet that I cannot wear shoes or socks sometimes. Pain from spasticity. Pain from degenerative joint disease. I definitely relate to this article. Thank you.

  • Susan
    3 years ago

    I get pain on the top of my feet too and have for years. Sometimes it’s burning but other times its an intense stabbing pain that makes it almost impossible to walk. The stabbing pain came on suddenly when I was on vacation and had walked a lot sightseeing. Then I had to use my cane and hobbled around for the rest of the time there. Went to my GP went I got home and she thought it was a vascular problem and told me to get light support socks. They actually help prevent the stabbing pain but the tops and souls of my feet still get burning pain like they are doing right now. Always thought the tops of my feet was a weird place to have pain but isn’t that the nature of MS?

  • Ashley Ringstaff moderator author
    5 years ago

    AH! You can’t wear things over your feet either?! I live in flip-flops all year round. Granted I’m in Texas, so it doesn’t get very cold here (Central Texas)… but still… people don’t understand why I never wear actual shoes, just flip-flops.. UGH

  • Sue
    5 years ago

    Great article. I was diagnosed with MS back in 1983/84 and spent many years trying to avoid acknowledging the disease and the ways it impacted my life. Now, pain and fatigue are my two main, constant symptoms. One doctor said that my pain isn’t truly MS pain – that because my body is compensating for the weakness, it’s putting stress on places and that’s what’s causing the pain. I mean, I do have the pins and needles and the burning, and the occasional hug, but I can deal with those. It’s harder to describe the other pain… It’s just there. Everywhere and yet no where in particular.

    I was on various dosages of Vicodin and they worked pretty well. In fact, I’d ask the doctor to prescribe the extra strength ones and then break them in half and limit myself to half a pill a day (half a reg. strength didn’t have enough kick, but a whole reg. strength was more than I needed). Then my doctor decided that getting me off that was her newest goal – taking Tylenol/acetaminophen long term isn’t all that great for you, after all. I’ve been going to a pain clinic for almost 2 years now. They’ve prescribed gabapentin, orphenadrine and morphine. My problem is that none of that works even close to as well as the vicodin did. In fact, I can’t tell the difference, pain wise, between days when I take the pills and days that I forget (yes, I have MS memory issues). Every month when I go back to the pain clinic, the doctor assures me that he knows what he’s doing and that I should just keep taking the morphine and orphenadrine (the rx for gabapentin ran out about a year ago and he never renewed it). I’m not sure how much longer I can keep going like this.

  • Tsmith70
    3 years ago

    There is Vicodin that is combined with ibuprofen instead of Tylenol, and now there is Vicodin without any other “pain reliever” in it. You can also get oxycodone/Percocet with ibuprofen and without anything. Why in the world would they move you all the way up to morphine when your pain can be controlled with a lower pain medication? Seriously, afraid of too much Tylenol? I’ve been on Vicodin, and now Percocet for 17 years, no issue with acetaminophen has ever been raised. (I also have very bad degenerative arthritis in my spine, hips, arms and hands along with MS.) I agree with Ashley, get another opinion.

  • Mikestarrms
    5 years ago

    Yeah I have to take the hydrocodone also to get relief from the pain. My neuro keeps trying to use things for nerve pain like lyrica, gabapentin, etc that never seem to work

  • Ashley Ringstaff moderator author
    5 years ago

    OMG! I’m so sorry to hear about all of that… Can you get a second opinion? It’s easy for healthcare personnel to say ‘you don’t need this’, etc. but THEY aren’t the ones DEALING with it all.

    Having knowledge with the research and having knowledge with the actual issue at hand are two COMPLETELY different things.

    I hope you get some relief soon!

    xoxo

  • DaveOski
    5 years ago

    Thank You for the posting. I needed to hear what you and others had to say. I found out I had MS in May 1977 (6 months before getting married. My wife is a RN that has helped me a lot.). I only had 2 exaserbation 1977 and in 1983 I was blind for 6 weeks but ot my site back 29/20(that I had to go the doctor for until 2002) In 1992 I moved from near Chicago to the Pineywoods of east Texas. Went from the freezer to the oven. Then in 2003 It woke up and found that MS really changed my life. Had to start using the cane and by 2007 the electric chair. It was around 2005 that I started to use pain meds. and as of today am taking 1 HYDROCODON-ACETAMINOPH 7.5-325 every 6 hours. When they ask me (hospital/dr office etc.) the 1-10 pain level I have to tell them that I run at a 3 all the time. and right now I’m at a 6 or what ever it is. Then they ask my favorite question… Where dos it hurt? I usealy can’t say arm, leg etc. I JUST HURT, I HAVE PAIN. I know now it’s just screwed wiring in the nerves. Something else that has happened I feel no pain when stuck by needle or being cut or burned.. This is so dangerous, I have That also sucks I feel pain but not from what I should.to keep watching for blood, smell of something burning etc. Oh well I do have so much to be tankful for, a wife and children, My needs are being taken care of and I ALWAYS KNOW OF SOMEONE WHO HAS IT WORSE.

  • Ashley Ringstaff moderator author
    5 years ago

    Oh wow! I know what you mean on the ‘feeling’ of the pain… some things we don’t feel at all and others it’s like, OMG WHY?!

    You moved to Texas?! I’m a born and raised Texan lol I’m in Central though. It is an oven here… 9-months out of 12-months, usually.

    Hang in there, you’re right… there is someone who has it worse out there… but it’s still not fair that we have to deal with all of this at all.

    xoxo

  • Carol
    5 years ago

    Great posting Ashley. I too suffer from a lot of pain, mostly in my thighs. I have been taking Gabapentin, which doesn’t seem to provide that much relief.

  • Mare
    5 years ago

    Carol: I take Soma (muscle relaxer), Gabapentin (truckload of it) and Hydrocodone. This will get rid of most of your pain. Ask your doctor to try prescribing all 3. My pain is in my legs and I could not go to work everyday without taking all 3.

  • Ashley Ringstaff moderator author
    5 years ago

    I’m sorry 🙁
    Keep your head up… I know it’s hard to do it all times – but know that you aren’t alone in it.

  • Pam Barse
    5 years ago

    I have a high tolerance for pain prior to being diagnosed. Maybe it was given to me to help me with the types of pain MS brings to us.
    I describe the burning to other people “have you ever had a really bad sun burn? That’s what it is like, if I get the slightest bit warm I burn like a bad sunburn.”
    I am on cymbalta and nortyptoline for my burning some days it doesn’t even help.
    Thanks for the post!

  • Ashley Ringstaff moderator author
    5 years ago

    Carol – my insurance carrier wouldn’t allow me to get my cymbalta filled at my local pharmacy any longer, but I had failed gabapentin already… so they signed me up for the mail-order prescription refill to get my Cymbalta. I now get a 3-month supply at a time.

    Pam – I know how you feel on that one. I’ve had REALLY bad days, where the pain was VERY intense – but then I have some days where it’s just like that annoying bug that won’t leave you alone (or husband) which ever example you prefer. lol

  • Carol
    5 years ago

    Hi, my neurologist prescribed nortyptoline for me since the health insurance would no longer pay for cymbalta. Do you think nortyptoline does any thing or helps?

  • Shawnp
    5 years ago

    I was diagnosed three years ago and had to stop working a year after that mobility and pain. At first the doctor said there’s no pain associated with MS. After repeatedly calling bull on that I was finally given hydrocodone now OxyContin which helps. Due to the goofy way I walk and the pain in my joints and chest and I can now deal with it due to the the medicine. After being an athlete my entire life it’s hard not to be able to do something strictly because of pain but thankfully my family can see it

  • Ashley Ringstaff moderator author
    5 years ago

    Oh my gosh!
    I can totally relate to being an athlete… then not being as active as your used to… that’s so me.

    It’s so hard to transition and to deal with, because being an athlete all my life, I know about pain, but this is something completely different…

    Stay Strong!

    xoxo

  • Charlotte
    5 years ago

    Thanks for the article Ashley. I have had pain from the onset of MS. I too have a high tolerance from pain, so I just endured it until I was diagnosed. Now I have a bag full of meds. I have learned a lot of people just don’t understand chronic pain issues. I like to print articles from this website and leave them lying around places.

  • Tsmith70
    3 years ago

    I had pain with my onset of MS as well. I had what I now know to be TN, and, although I have a very bad back, I started having this horrible pain that wrapped around me like a tire just under my rib cage. After around 4 days of it, I went to my doctor (who I had gone to a couple times with the horrible pain in my ear and jaw but said there was nothing wrong), and I seriously thought something was wrong with my kidney or something like that, she asked to describe the pain, and had I ever had this pain before, I described it, said no, and told her my concerns (my stepmom died of kidney cancer, and she just thought she was having back pain so she didn’t go to the doctor until it was too late). She took x-rays, told me my organs were fine, it was my back, and sent me to a pain mgmt. doc. He asked me about my history with BACK pain, which was and is extensive. Then the two of them (pain doc and my doc), and decided I was a liar, a malingerer, and I was looking for drugs. This was in 2005, and I left that doctor, got a new one and never spoke of either pain for 5 years until I had a migraine (yes, I have those too) for 15 days and went in. My new doc asked me why I waited so long, and I said I don’t trust doctors and I don’t talk about my pain, then my partner Keith told him everything that had been happening, (standing up and hitting the ground because I didn’t have a leg that was working, I get up very slow now, my ear and jaw pain, my eyelids drooping to closed and I can’t lift them to open them, actual blindness, tremors that can affect my whole body at once at times, burning pain that is so bad in my hands and lower arms that I have to demand myself to pick up my pen to do my job, sometimes through tears, and my constant back pain. I was so mad at him when he did that, but it turned out to be the best thing he could have done.) My doc treated my migraine and set up an appt. to have an MRI. Then I got the spinal tap, and TA-DA…MS.
    People don’t understand how chronic pain, even if it stays around a 6 or 7 consistently, wears you down and makes that level of pain unbearable at times. I had a doctor tell me that I had to live with some pain for the rest of my life, and I asked her what level of pain on her pain scale that she lived with 24/7 so we could determine what level of pain I should live in, and she said she didn’t have chronic pain, so I told her to shut up then. I don’t take anything from docs anymore. I’m too old, in too much pain, and too tired to care. My best to you Charlotte.

  • Ashley Ringstaff moderator author
    5 years ago

    Oh wow – printing out the articles and leaving them in random places is a good idea! I didn’t think of that!

    Stay well! Know that you’re not alone…
    xoxo
    Ashley

  • Christie Germans
    5 years ago

    Hello, hello. Another great post Ashley. Thanks for writing about MS pain. Nerve pain is something that I’ve lived with since my diagnosis and, most of the time, it’s managed by gabapentin. The pain I experience is mainly in my right hand and I definitely have days when it hurts to touch anything, anything at all. Argh. The pain eventually subsides but it is challenging to say the least. I try to overcome the pain by switching hands to finish a task, resting and reminding myself that it will pass. Hugs and hope this note finds your pain decreased a bit today.

  • Ashley Ringstaff moderator author
    5 years ago

    Hey girl!
    Thanks for the comment 😉

    I used to take gabapentin for the nerve pain… but then I guess my body got “used” to it – so I switched to Cymbalta. Which helps for the most part – but there are just those “days” where all the symptoms increase and the ‘regular medication’ doesn’t fend all of it off.

    xoxo

  • Jessica Petroff
    5 years ago

    I don’t want to say it is nice to know someone else that can describe exactly what I feel, because truthfully I don’t want anyone to have to experience what we do.

    I have dealt with this for many years as well at various degrees. I too have a high tolerance for pain, so I can totally relate to your 6 or 7 meaning 10+ to the “normal” person.

    I’m sorry to read about your kids and not wanting to hug, be touched, etc. due to the pain. I also deal with this, but my two are older now (14 & 16)and I’ve explained to them why and they understand. I’ve always told them, including my husband, that it’s not that I don’t want your affection and attention, it’s just that it truly physically hurts me to be touched, but that doesn’t mean I don’t want them not to still do it. I tell them to be easy because I’m having a bad pain day before the hugs, attention and touches come my way.

    Hang in there and know you’re not alone.

  • Ashley Ringstaff moderator author
    5 years ago

    It’s nice to know that I’m not alone on the whole ‘don’t be touched’ thing… My boys are coming to learn to not be ‘rough’ with me in their hugs and stuff. Sometimes I just deal with the pain because I don’t want to make them feel bad…

  • Cathi
    5 years ago

    With the temps like they have been the last week here in AL, pain has been my horrible constant companion. I’m taking waaaaaaayyyy to much ibuprofen which takes some of the edge off. Have become a hermit in my cool house, doing nothing but watching TV & attending to my dog. Come on October!!!

  • JanG6036
    3 years ago

    don’t feel bad about heat I’m right there with you. I’m in La county California in the desert ant its 100 to 115 out here and my dad won’t run the AC all he wants is the Swamp cooler and he sits front of the fan ( he has MS and Transvers mylinits ) but he gets cold from the fan he turns off the fan and the swamp and even at night its over 81 on the house and 80 plus during the day so I use wet towels to try to keep my core temp down and heat keeps me locked in the house unless I have ( HAVE ) to go out.

  • Ashley Ringstaff moderator author
    5 years ago

    Texas Summer wasn’t as bad as last summer or the few before that… we haven’t had ‘as many’ 100+ days… but I guess Texas wanted to have a few of those, so it’s happening right now. We’ve been under heat warning… with high UV index, Heat index of 104-110… So i’ve been inside A LOT… and I don’t run errands or anything until after 6pm.
    I have been using my handicap placard to park at the grocery store because my body is just not liking the heat, and I’ve gotten some mean looks and some snooty comments but I’m just too tired to even respond to it usually.

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