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Symptoms

Pain

  • By Cathy Chester Moderator

    Indigo Girl,

    I’m so sorry you are experiencing such stabbing pain in your legs.  Unfortunately many people with MS do experience pain.  I thought perhaps you’d find some answers in this article by MultipleSclerosis.net about pain.  I highly recommend you speak with your MS specialist about the pain you are experiencing.  Together you can explore what medications are most appropriate for you and your specific MS issues.  Please keep us posted on how you are doing.

    Best always,

    Cathy

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  • By Andrea

    I have a pain from the bottom of my feet that goes up the back of my legs. It feels like my skin if raw and bruised. Clothes hurt it, water hurts, pretty much everything hurts it. It used to happen a couple of times a year but now it’s once a month. I’m trying to determine if its linked with heat or stress. I only every lasts less than a week but sometimes it hurts so bad it seems unbearable. Has anyone else experienced this?

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  • By synapticmisfire

    IndigoGirl – I also have leg pain. It is sometimes a stabbing pain, sometimes my legs feel like they are extremely cold or on fire, electrical sensations, etc. my neuro prescribed a combination of anti-seizure drugs that help. Talk to your neurologist. Good luck!

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  • By Mare

    Hi all, new here. I have had MS for 15 years and I have been on pain killers for 5+. I take 40 mg’s of Hydro each day. That helps with about 50-75% of the pain in conjunction with anti-seizure drugs and muscle relaxers.

    My doctor told me that she would not be able to give me another increase to anything stronger — needless to say I haven’t asked for any in 3+ years. I would have to go to pain management which is non-existent in my part of the state that I live in. I would have to drive 6 hours each way to Buffalo just for an initial consult!

    I wish they would legalize pot in all states — whether you believe it or not, it does help! Unfortunately, I only can toke up 2-3 times PER YEAR when good friends realize what horrific pain I am in and come by to give me something!

    I wish the doctors would realize in the US that MS is real, does cause pain and pain killers and pot do actually work. How do they know, they don’t have MS themselves, nerve pain themselves do they?

    Thanks for letting me rant/rave. I’m, unfortunately having one of those “pity party” days at work (yes, still work full-time) as I am still 100% mobile.

    I just found this forum and am grateful!!!!!!!!!!!!

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    • By Reddiva

      We passed the law legalizing Marijuanna here in MA over two years ago and we are still waiting for the dispensaries to open and for there to be docs to write the scripts for the stuff! It is so ridiculous waiting. I have a secondary autoimmune illness called ChurgStrauss Syndrome- a dangerous, often deadly, and very painful vasculitis, for which I was prescribed two years course of Cytoxan and Rituxan to treat both the MS and CSS together. The nausea has been horrible and I cannot take Zofran because it gives me migraines, so I take prochlorperazine, an inferior drug, so I spend many hours praying to the porcelain god. Not to mention the pain in my body. I cannot take any of those anti-seizure drugs or anti-depressant drugs. First, they dont work no matter how much they give me and second i have no quality of life on them because I turn into a fruit loop. The state government keeps tying up licenses for the dispensaries! The people have spoken! I just want a chance to try this option to see if it offers me relief! I am so fed up! I think it is the big pharma lobbying that is holding it up. Why let the people have a natural, cheaper, herbal option when we can pay ten bucks a pill for Zofran. their artificial poison!

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  • By Kim Dolce Moderator

    Hi Carol,

    Have you reported it to your neurologist? Describing our pain and having a physical exam can help our doctors pinpoint the cause and recommend treatment. If you have leg spasticity, that can cause the muscles to painfully tighten up. Muscle relaxers can help, but sometimes we need to add massage or a heating pad for the bad days. If your doc determines that it is neuropathic pain, anti-seizure meds such as Lyrica and gabapentin can help. Anti-depressants are often used to treat pain in MS patients as well. If you haven’t already, see your doctor for an exam and treatment plan. Hope this helps. –Kim

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  • By Lizzy

    Hello! I find it very hard to describe the pain. I can tell you what’s it’s not! It’s not fun and not ever gone! A dull, ache, pulling, heaviness, unpredictable, too much for anyone I know to hear kinda pain. The kind of pain that has no way to be delivered than with a frown or a dreary tone and so often interpreted as an emotion or an expression taken totally out of context. Mostly located across my lower abdomen and today it’s from my shoulder to my toe on my left side. I am having sharp flickers resembling electrical zaps on my head, face and a few thrown in on my shoulder and elbow for fun! It is fair to say an episode very much under way and my only option appears to be an IV steroid for three days, one hour a day and then weeks of being so wired out I resort to ironing and intense organizational insanity. All the therapies I have tried I’ve had horrible reactions, extreme allergic reactions and so intimidated by pain meds. I feel a sense of ‘am I missing something?’ Is this as far as neurology goes? Doc checks my reflexes, has me walk 20 feet as fast as I can, prescribes steroids, and ‘hey presto!’ ….just wait and see what happens during the next episode of ‘Is that me in there!” I’m sorry if I sound negative but I’m just hoping and praying I’m missing something.

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  • By Jodi

    Hello, I am also new to this site and I wonder if anyone else has this pain? It starts in my lower back and goes across, it is a constent pain I am currently on quite a few meds including gabapentin, and baclofen but I have been on pain meds ( curenntly oxycodone)for the past 8 yrs and my body has gotten so used to them they don’t work as good anymore. I have used the heating pad so much on my back that it burned my skin and it looks horrible. I do not know if this could be somehthing else or a symptom of my MS? I had to get a hip replacement a year ago and I was 36 yrs old the doctor told me that the hip replacement will help my back but it has not helped it actually made it worse. I do get the electrode shocky feeling down my legs and 3/4 of of my feet including my toes are completly numb. I have told my nourologist about this and they have no response, any suggestions will help

    Thank you and God bless

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  • By Kim Dolce Moderator

    Hi Jodi,

    I have pain similar to yours, and an MRI revealed arthritis in the lumbar spine facet joints as well as degenerative disc disease. I don’t medicate for it, and I too have used a heating pad. I was told that being active is the best thing for it. I asked my neuro for a physical therapy order; a PT will design a program for me that I can continue at home. I liked aqua therapy quite a bit, it is easier to move in the water.

    It is confusing when I have pain that might be muscular or neuropathic or arthritic and I can’t tell which it is.

    If you have made it clear to your neuro that the pain is interfering with your quality of life and s/he isn’t addressing the problem, you might consider seeing someone else. Your doc should be investigating the cause of and treatments for your pain issues. I hope you’ll find relief soon.

    Kim

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  • By Yani

    Hi all,
    I don’t have day that I don’t have pain. It’s very frustrating. I get stabbing pain in my head, legs, and thighs. I get scared! Electrical impulses all around my body. I have children I am raising and a full time job. I manage with stretching, medications, and resting. I just want to be pain free

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  • By cooner

    The week started as a typical Monday opened up the shop and my fingers started to tingle more than they normally do by the late afternoon my hand,forearm and elbow were so swollen I could not move my arm because of the burning and the pain. As of right now still the same. Went to ER and they didn’t know what to do…….. Has anyone had this happen to you?

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  • By quinn1219

    Hello, I am new to this site but have had RRMS for 20+ years now. For the most part I am stable and thank goodness for Gileyna which has been a wonderful help for slowing disease progression. However, for the past few months I’ve begun being plagued with severe muscle spasms in the lower legs. Much like a “charley horse,” but different. I’m getting them in the muscle beside my shin, in my ankles and even my feet and toes. The attacks are so bad that my feet and toes get pulled into positions that I could never put them in. I’m already on Neurontin, Baclofen, Zanaflex and Clonopin. They seem to happen most often in the evening or in bed. The only thing I’ve found to relieve the spasms is to either put my feet in HOT water or get into a HOT bath, depending on how far up my legs the spasm is happening …

    Has anyone else experienced this?

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  • By Kim Dolce Moderator

    Hi wren,

    I can relate to your experience. I’m on baclofen, but muscle spasticity is still a problem. I use dry heat in the form of a heating pad, along with self-massage. It helps. I’m glad you found self-treatment that is effective.

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  • By quinn1219

    Hi Kim,

    Thanks for responding … Yes, I’ve used a heating pad as well. I’ve used it to try to abort a spasm, but when it attacks quickly and severely the only thing I’ve found is the HOT as I can stand it water. I mentioned it to my MS specialist at my last visit and she was somewhat mystified and thought taking an extra Zanaflex might help. However, that does nothing when the attack happens. I’m very frustrated! I’m going to contact her or the nurse practitioner and see what they say as they are happening more often …

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    • By Lisa Emrich Moderator

      Hi wren,

      I’ve done the hot bath thing as well when my legs are particularly stiff and spastic. I take baclofen daily, but when the spasms get really bad, and painful, I have diazepam on hand. It helps to let the muscles relax a bit more than baclofen seems to. Also, self massage and gentle, slow stretching (holding a stretch for a minute, let it go, stretch the opposite side, relax, and repeat the process at least five times for each side) really does seem to help. Definitely talk to your doctor.

      Hope you can find a bit of relief soon.

      Best,
      Lisa

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  • By Star

    I’m wondering how to tell if I have new MS symptoms or not. I get very stiff quad muscles, but it seems much different than normal tight muscles from exercising, etc. It’s not burning or tingling, it just feels so unbearably tight and sore and I can’t stretch it out. Could this be a symptom? Also, my shoulder muscle and eye muscles are twitching….are these symptoms too? I was dx’d with RRMS in 2013, but these seem to be new symptoms I’ve never had before. (unless they aren’t really MS symptoms and I’m just getting older!! I’m really not sure how to tell!)

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  • By Erin Rush Moderator

    Hi Star! Since these are new symptoms for you, I would highly recommend bringing them to the attention of your physician. You might want to check out this page on our site — https://multiplesclerosis.net/symptoms/. It breaks down potential MS symptoms and if you click on the particular symptom listed, it will take you to a more comprehensive explanation of that particular issue. Since we are unable to give medical advice online for your safety, checking out the link will be a good place for you to start. Your issues *could* be new symptoms of MS, but only your physician will be able to definitively answer your question. Thanks so much for being here and I am sorry you are having these muscle issues! Have a good night, Erin, MultipleSclerosis.net Team Member.

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