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    • #16840
      Jodi Enders
      Keymaster

      In columnist Retha De Wet’s recent columns, she discusses how pain is a significant aspect of her daily life. She mentions being in pain for the past decade, and medically she has only been diagnosed with myasthenia gravis.

      Retha states her pain levels directly correlate to her level of MG weakness, and the parts of her body that hurt worst are associated with where she experiences weakness, mostly her neck, back, and shoulders.

      My pain is the same as Retha’s and occurs in the same regions, precisely much worse than others.

      Does your doctor currently recognize pain as due to your MG?

    • #16845
      Craig
      Participant

      My neurologist only recognizes voluntary muscles weakness as due to MG, and has even said “that’s not MG-related” a couple times (to which my response was “well I never had that problem before you started treating me”, and that allowed us to have a little reset in the issues they would address, especially if those things were caused by the treatments).

      I have been recommending this video all over the place, the US Myasthenia Gravis Foundation sponsored a webcast called “Managing Teriary and Secondary Symptoms of MG”.  I have found this to be to the most affirming thing I have seen in a long time.   This link will start the YouTube recording of the webinar at the part where he talks about pain and MG\, I encourage you to check it out.

      • #17047
        Carrie McDade
        Participant

        Thanks for the link. I had forgotten I had viewed it before, but remembered I had the eye pain and occipital headache and glad the doc mentioned it because I thought it was so unusual. Feels good to be validated.

      • #17869
        Geoff Verschoor
        Participant

        My neurologists have treated my chronic headaches as a separate issue to MG and have been sceptical about a link between the two.  I also found Dr Pitts’ video to be affirming and inspiring.  I too would love to be treated by him.

      • #18766
        LISA MICHELE HALL
        Participant

        I have extreme pain in both of my upper legs and upper arms.  The doctor does not address the pain.  The pain started when I was diagnosed with myasthenia gravis. My main problem is weakness in both legs and upper arms along with constant pain.  Does anyone else have this type of pain?

        Lisa

    • #16872
      Amy Cessina
      Participant

      I watched the video in the link. Thank you for sharing the link,   it is excellent information.

      • #18916
        Jaimie
        Participant

        Lisa,

        Yes I do have that kind of pain.  Most day when people ask “How  bad is the pain?”. I say, “only thing that doesn’t hurt is my hair.”

    • #16898
      Geoff Verschoor
      Participant

      Craig, the video that you referenced was excellent.  It was hugely encouraging to hear a neurologist who is enthusiastic, as well as knowledgeable, about his work with MG patients.

    • #17018
      Patricia DeMore
      Participant

      Thank you for the video link. It was so informative. I wish Dr. Pitts were my neurologist. His presentation gave me reassurance that many pains in my body are certainly secondary to my MG.

    • #17043
      Carrie McDade
      Participant

      I was just diagnosed within the past year with MG, and have new, unusual pain as well, mostly in my right eye, back of my head, neck and shoulders later in the day. The shoulder pain makes it difficult to fall asleep.

      • #18370
        RINA NEL
        Participant

        This has nothing to do with your eye. I had the same problem and sometimes the headaches were so bad that I wanted to just die. I thought I had sinusitis and went to see my GP. Nothing helped and then I saw the video and I realised it is ‘heavy head sindrome’. Eventually I ordered a neck massager and let me tell you I suffer no more. I put this thing on every day for 15 min and headache gone. It is such a relieve. Just something that might help. Oh yes, no more pain in the eye

    • #17044
      Carrie McDade
      Participant

      I was just diagnosed within the past year with MG, and have new, unusual pain as well, mostly in my right eye, back of my head, neck and shoulders later in the day. The shoulder pain makes it difficult to fall asleep.

    • #17071
      Sheila Troiano
      Participant

      Yes, I understand. I think some of the pain results from muscle fiber exhaustion. Like when normal people exercise hard and get pain after; it only takes a little exertion sometimes for that to happen to someone with MG. Some pain is due to muscle cramps, side effects from mestinon. Im an RN and diagnosed myself when doctors couldn’t figure it out. I took the symptoms and the neurologist and testing confirmed. I believe I’d had it for years. I’ve had 2 serious injuries this year which I feel in some way, MG contributed to. I tore a muscle in my calf, I think from muscles being tense after meds and weakness which has developed over time. A bursitis of the shoulder acted up when I was non weight bearing and had to use a walker. Last year had a back injury and spent months in PT. I had a couple treatments with Prednisone to get me out of severe pain. And the main answer is ” yes” some pain is related to MG. And doctors can be so naive to this. Tending to be invalidating. I find my orthopedic doctors are more sensitive to this. Having MG , you have to advocate for yourself. Otherwise we don’t get the care that we so desperately need. Even if that need may be just validation that ” yes, it’s not in your head, your pain is real and there is pain associated with MG” I want to say, ” walk a mile in my shoes”

       

      • #17868
        Norm
        Participant

        Do any of you have difficulty getting prescriptions for opioid pain medicines? I recently developed shingles (to go with my MG). When I ask for strong medicine, the medical profession in general treats me like an addict-wanna-be.

        To avoid prescribing opioids, one doctor had me taking gabapentin, which, according to some reports, is dangerous for MGers.

        Over decades, researchers have developed effective pain drugs. Now there is an hysteria about using them!

    • #17072
      Rick Federmann
      Participant

      I experience MG-related muscle pain, but it is not a direct symptom of MG.  Rather, it is a consequence of it.

      When MG causes muscle weakness, I don’t feel pain.  I feel muscle fatigue, drop things, stumble or am surprised when I try to speak and it doesn’t work.  Often, my first indication that MG has flared up is when I get neck pain, arm pain, etc.

      It seems that MG doesn’t affect all of the muscles in my arms, legs and neck, so the result is that only some of the muscles are doing all of the work.  It isn’t long before the working muscles begin complaining about being overworked.  Thus, my pain comes from the muscles that aren’t being affected by MG.

       

    • #18756
      Alan Bridle
      Participant

      I was diagnosed with MG last November but now realize I had muscular symptoms for several years before that.  Over the same period I had also experienced occasional severe hand cramps, especially  late in the day.  I had an acute myasthenia crisis soon after I was diagnosed and I was then in a neurological ICU for several weeks.  I responded well to a combination of plasmaphoresis (plex), Mestinon, prednisone and IVIG infusions and my overall progress with symptom relief has been good since I left the ICU.  However, the hand cramps recently became much more frequent and more severe.  My fingers  can “lock up” in distorted bent shapes with a lot of pain and can stay that way for several minutes.  Heat helps to release the cramps but is not always quickly available.

      Does anyone else experience severe cramping with MG?  If so have you found anything  that works well to relieve it?

      • #18768
        Norm
        Participant

        Taking pyridostigmine late in the day led to severe cramps and fasciculations in my calf muscles. Stopping the late dosage stopped the problems.

        My tolerance of and need for pyridostigmine seems to vary every day.

    • #18779
      Troy
      Participant

      Hey folks, it’s nice to know I’m not crazy. I have been complaining to my neurologist and general physician about pains for some time now and after being repeatedly told it isn’t from my MG, I have spent money on several X-rays to check for arthritis or other issues and now they want me to do an MRI because everything looks good.

      I take prednisone and have been diagnosed for about 10 years now. My pains started in my shoulders and fingers. There are times my finger will feel like it’s broken or severely sprained, I even had to tape it up for 3 months this summer and then it’s all of a sudden better. My shoulders really hurt in the mornings and later in the day, even when I’m sitting watching tv. It can get to the point that it brings me to tears(and I deal with a lot of pain from migraines)
      I am lucky in the fact that I don’t have to much weakness from my MG, only climbing stairs and working above my shoulders, and am still able to ski 20 days a year and walk 23-30k steps @ work w/o any real difficulty… but the other pains that I feel cause me issues on a daily basis.
      I can deal with the limited weakness that I get, but sometimes the shoulder & bicep pain I feel can be a bit overwhelming!
      I to have often wondered if it doesn’t have something to do with the fact that certain muscles aren’t working properly and others are overworked, or that sometimes certain muscle’s don’t get the signal to retract causing them to “lock up” as the others around them are moving.
      I don’t know, but it HURTS and it wasn’t like this before MG.

      • #18786
        Norm
        Participant

        Troy,

        I found this: “Myasthenia gravis itself does not cause pain, but the weakness may lead to non-specific aches and pains. For instance, neck pain may occur because of weakness in the neck muscles.”

        which is part of this MG article

        I’m having sharp pains in my left should when my arm is in certain positions. My guess as to its cause is that my muscles are weakened by MG and are no longer holding my bones, muscles, etc. in their proper positions away from the nerve.

    • #18781
      Sheila Troiano
      Participant

      I replied to this post in the past, but have an addition. I started having pains in my feet recently. I think cramping from the mestinon. I just purchased a homedics foot massager, got it on sale. Best purchase. It got rid of those awful cramps in my feet. If anyone else has foot cramps, it helps, although it says u can’t use if you have diabetes or circulatory problems.

       

      • #18789
        Norm
        Participant

        Sheila,

        Every day I adjust my Mestinon (pyridostigmine) in the evening so that my calf muscles are just shy of cramping when I go to bed.

        Mestinon only lasts about 4 hours, so my dysphagia may act up before morning. Seems like a Catch 22.

    • #18797
      Joanne Gurion
      Participant

      I was diagnosed last August, 2021. I can’t believe how timely this topic is for me. Saw my neurologist yesterday. Have been recently experiencing headaches with pain behind my left eye. My vision is blurry. I get dizzy. My eyes are more light sensitive than usual. Had MRI and MRA, both normal. My neurologist feels they’re migraines and wants me to take RX to treat migraines. I have no hx of migraines or headaches prior to MG. After listening to the video, which was excellent, I question starting migraine RX. I take Mestinon now and due to an increase in bulbar symptoms will be beginning IVG infusion treatment soon. I’m wondering if I should wait to see if that helps the headaches. I also requested physical therapy and am doing neck/shoulder exercises at PT and at home. It helps with neck and shoulder pain and allows me to feel I’m being more proactive in finding help. Any suggestions?

    • #18804
      Sandra Petty
      Participant

      Hello Jody,

      I wanted to tell you that the pain you have is MG with Fibromyalgia.

      I’ve been diagnosed with MG 1994. I was diagnosed with Fibromyalgia

      in 2000. Re diagnosed  with Fibromyalgia in 2008. The second doc didn’t

      know about the first doctor. When he told me the same thing I was relieved

      to really have the answer. The medicine was different from first doc.

      Glad to be here. Sandy

       

       

    • #18807
      Sheila Troiano
      Participant

      Beware to those who attempt to take opioids for your pain DONT! With MG we have a higher chance of respiratory and neurologic complications. Could easily result in respiratory failure or crisis.   Also, for those who have been told they have migraines. Probably not. Especially if you have ho history. A lot of headaches with MG are related to weakened muscles of the neck. Trying to hold that heavy ball we call a head on an already weakened neck does cause head pain. Be careful with anything you add to your medication regime. Many medicines interact with your meds.

    • #18800
      Sandra Davis
      Participant

      I’ve had those shoulder and neck pains since my diagnosis 4 years ago. My MG Dr. also said it was unrelated.Then I saw a spinal surgeon, who sent me for neck injections, which gave me relief.The next neuro. visit the did their routine muscle tests, and pushed my head around
      (to check strength), and the pain returned, and has been with me since.

      I cannot take any NSAIDS for the pain, because I now also have a bleeding disorder, from Azothiaprine. As a result of the drug I now also have nonalcoholic liver disease and an enlarged spleen,( which causes muscle spasms!) and GI bleeds. I was on a dose of 4 gm per Kg for 1 1/2 years. I have been off the drug for 2 years, and still have the side effects.

      I’m a 77 year old woman. I was a hiker and a dancer before diagnosis. Now I hobble around inside my home with a cane. This forum has been such a relief to read, because I was made to feel like I was imagining it all.

    • #18826
      Robert Powers
      Participant

      My MG symptoms seem mild compared to many people…but I was aggressively being treated by excellent Drs.   The weakness in my upper legs, arms, stumbling are now my major complaints.  Pain in my upper arms and shoulders are now late in the day and treated with Tylenol and a soak in the hot tub.  When pain is bad and I need to sleep I can used “tramadol”…but getting prescription is not easy.

      The results of the weakness in legs & arms makes it difficult to get in and out of canoe or kayak.   I live on the water and try to live to enjoy it.  My balance is off and I do use a cane.  I was doing IVIG for several years…which seemed to help reduce the weakness issue…when I was getting IVIG 8x a month!

      Now I am on Solaris every 2 weeks….(much better for time management) But now leg and arm weakness and some fatigue has returned to muscle groups.  Now sure if related to change in infusion changes…only been a couple of months.

      I have not yet had followup with neurologists for that.

      However, the good news is that my vision has improved significantly, so no complaint there!   No double vision!  Mouth chewing, swallowing and talking has improved.

    • #18876
      Alan Bridle
      Participant

      I followed the tips here to not take a mestinon dose late in the day.  I have not experienced severe cramping since and it is great not to have my hands “lock up” in cramps by the time the evening meal is over.

      My neurologist was open to the idea that cramps and MG could be related but I reckon this is another area where different people experience different levels of symptoms so it ‘s hard o generalize.  It’s better when docs don’t dismiss our problems just because they don’t have a textbook explanation for them or see them in everyone, but that’s just one more way in which our mileage may vary.  What I read here seems to have helped me alleviate my cramping … so … thank you!

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