My Pain Is Just as Real as My Myasthenia Gravis

Reta, I found this discussion about pain and MG to be extremely helpful. While a clinical is technically correct if they say "MG doesn't cause pain", they're not thinking about the body as a whole system. For example, if your next is weak your head will tilt forward putting strain on other muscles, which can result in shoulder and back pain. While I recommend the entire webinar, the discussion about MG & pain starts 9:45 into the presentation and this link should take you right to that point.

https://youtu.be/yMQ84zgb-M0?list=PLvO-XTLa3NPl0fK5TLcKm274g1RF8HO3a&t=585

Retha, I think I spelled your name wrong in my first comment, sorry about that - I saw it right as the screen refreshed

I am so glad you wrote your story, I was diagnosed with MG in Nov. 2020 and was starting to think I was going crazy! I too suffer from alot of pain through out my whole body to the point I can't think straight, concentrate on anything and just want to give up some days.
Thank you for reassuring me I am not alone.

Thanks for your articles. I am always trying to find out what other MG patients are having problemwise ... as well as how long it took to be diagnosed. It took me 8 months before a kind and intelligent floor nurse recognized my symptoms and got me diagnosed and IVIG treated ... after 8 months of doctors and three neurologists failed.

My pain is less now .. but I still have the lingering muscle pain in my biceps and the back of my shoulders .... but no longer in my legs, fingers, and neck ... that could not support holding my head up. It has been a year into remission. Has your pain affected you getting asleep at night? Does it take forever to fall asleep and your left side or right side get sore waiting FOREVER to fall asleep .. and having to flip to other side after a while? As I google and read ... some say muscle pain causes insomnia and other say PREDNISONE and CELLCEPT (2000 mg daily) cause sleep failures. How are you doing with your pain problems? Sleep problems too?

Thank you for writing this article. I have had pain in my body ever since I've had MG. It has been 15 years now. Many of the doctors I've been to told me there is no pain with MG. My MG affects my legs and arms mostly. If I'm really tired my words will slur and my eyes will droop. But it is not bad. I take Pyridostigmine and have had a thymectomy.

I have delayed pain. It comes in my legs after I have walked. It comes if I used my arms for cooking, dusting, etc. I have neck pain from using a computer, paint or any position I hold for a time. It is baffling.

Like you, I sometimes give myself a pity party for a day. But I would rather be a part of the world then wallowing all the time. I would really like to know why there is pain and what one can do about it besides taking pain meds.

I am relieved to hear that others report pain. I am sitting at my computer working and the pain is creeping down my arms. I too have been told that there is no pain with MG, but there is. It is the pain of an overused muscle that comes too quickly and too frequently. I am also glad to hear that others have the brain fog! It is not just old age creeping on!

I have had MG for almost 4 years now. Recently I’ve developed pain my my neck, shoulders and upper legs. I don’t feel as strong as before. But of course It is dismissed as MG related pain. Orthopedic doctor says no reason for the pain he can see on x rays so one can deduce it’s MG muscle weakness pain. I don’t have severe case and can pass those neurological exams. So I guess that’s what confuses me. Anyone else pass those tests but still feel weak and pain?

Thanks for bringing the issue of pain associated with MG into the light. I was diagnosed with MG a little over 5 years ago and have since entered a world of pain that I didn’t have previous to my MG showing up. I have severe pain and tingling with loss of touch sensation in the soles of my feet as well as cramping that curls my toes, also terrible cramping with associated pain in my calves and the muscles that run up beside my shin bones. The cramping isn’t so bad in my thighs but it lets me know that it’s there. Does anyone else have these symptoms???? And you are right, about constant pain generating deep depression and serious memory problems and confusion. Anyone else???? Help!!!

My husband also deals with a lot of pain. He has been told over and over that MG does not cause pain. It’s so difficult to watch him suffer. Just to know he is not crazy and that others feel the same is good to hear. But now— what to do?!

Hi everyone, a year ago the hospital thought that I had mg and even treated me me for it in the hospital for a week and at the end of it I was feeling better but then was told that the test came back that what is wrong with me isn’t mg. I have all the signs but now think it’s now FND which idk and they don’t ether!! All I know is that I’m in pain all the time ,foggy brain, weakness, my brain feels like it’s on fire most of the time, some trouble eating at times, having trouble with taking, forget fullness is getting worse, I just don’t know what to do!!

Thanks for everyone's comments on these pages. They are much appreciated. Being new to MG .. after 8 months of searching for a diagnosis ... and not getting one from any doctor who saw me (a floor nurse recognize my ocular MG symptoms and got me tested and IVIG-ed), I am still trying to figure out what MG is and what is what. Also are my problems MG related (such as muscle and bicep pain) ... or are they side effects of all the medications that we must take daily to survive? My non-MYASTHENIA GRAVIS doctors still do not understand that MG patients should not be taking certain drugs .. that could affect our health. Also they keep thinking ... oh we have an "old person's disease" ie Diabetes, High Blood Pressure, irregular pulse, high Cholesterol, bad leg circulation, I am TALKING ABOUT MYASTHENIA GRAVIS ... and all they think about is PSA scores. They keep wanting to do non related invasive tests ... and I have to keep reminding them ... that I am taking blood thinners and immune system suppressant medications. I CAN NOT AFFORD TO GET LEAKING BLOOD OR ANOTHER INFECTION>Gout, blood in our piss or poop ... and testing us accordingly as a "OLD PERSON" .... instead of ACTUALLY LISTENING to our symptoms ... and testing for our actual problems.

SO EDUCATE YOUR DOCTORS. Also find A REAL, IN THE FLESH, MYASTHENIA GRAVIS-NEUROLOGY DOCTOR .... who KNOWS about MG and you can schedule an appointment with, see you in person, and answer your concerns. The hospital neurologist ... who prescribed my initial MESTINON AND CELLCEPT medications is still in his "ZOOM MEETING MOOD". I needed a LIVE DOCTOR who I could see and visit in person .. so I found a second Neurologist nearby .... who I could see IN PERSON and who could advise me which SHOTS are dead virus shots ... and will not affect my "toasted" IMMUNE SYSTEM ... that has to take 2000 mgs of pills to keep my immune system from attacking me.

So THANKS TO ALL ... for anything you can tell us NEWBIES about your experiences so far.

WOw! I am so glad to hear there are others who are experiencing lots of pain coinciding with an MG diagnosis. I am still waiting on a FIRM diagnosis of MG. Been thru 2 local neurologists and working to see a 3rd...one initially diagnosed me with MG, then recanted; the 2nd says "there is no way you have MG". Neither of them were actually concerned about my brain fog, complete exhaustion, weakness, and pain symptoms...they were only looking for the common MG symptoms (eyes drooping and chewing problems).

The 1st neurologist prescribed 60mg of Mestinon twice a day and Bacolofin at bedtime...when I saw him a month later he basically told me that the Mestinon should have given me immediate relief (like a hit of speed) and since I was still experiencing exhaustion, brain fog ,and pain, I didn't have MG and must have a virus of some kind. (I started having relief with the Mestinon after about 2 months of treatments).

The 2nd neurologist did more than the 1st, but he, also, did not listen to my symptoms...he was only concerned about what he was seeing with one blood test and one EMT test. He told me my pain was arthritis pain or stenosis in my back. He also told me the Mestinon COULD NOT be giving me any relief because I don't have MG (even though I gave him several specific instances of where the Mestinon gave me relief within 30-45 minutes of taking the pill).

My Prime Care Dr told me to keep taking the Pyridostigmine until I get a firm diagnosis one way or another and referred me to MUSC to get further help.

I have been experiencing pain in my arms, shoulders, upper back/shoulders, and calf muscles for about 18 months now along with brain fog, weakness in my arms and legs, and complete exhaustion. The pain feeling is as if I have taken myself to complete muscle failure after an intense workout. The Mestinon helps, but I am still in pain more days than not. The least little exhertion causes me to be "down" for 3 or more days. On the days I am in severe pain, I self medicate and take 3 doses of Mestinon...it helps, but I am still "down" for several days.

I hope the next Neurologist I see at MUSC will listen to my symptoms and not blow me off like the other two have. This process of getting a diagnosis is so depressing. I completely understand what Jonathon is saying!!!!

I am soo relieved & sad to hear that we go through this pain. I have my fingers feel like they are broken multiple times a day, my shoulder feels like it’s out of place, and in the mornings I go through living hell! Only to be told that MG doesn’t cause pain….. I told my neurologist “ I beg to differ, live a week in my body and try telling me that”. He had me thinking it was arthritis or old age or some kind of laxidosis build up in the muscles overnight. The auxiliary pain from my MG is way more hard to handle than the occasion muscle weakness. I have forwarded this article to my Neurologist in hopes of Enlightening him. Thank you all. Chins up, because together we can be heard! Please All Be Safe, Stay Healthy

Pain is a very real part of my experience with MG. The pain is mostly concentrated in my legs and feels like "electrical mini-muscle cramps" and I also have pain from extremely tight muscles all down the back of my legs that don't respond to stretching. It wakes me up at night and never goes away. It will vary in degree and in how much it affects my quality of life/ability to function from day to day and even hour to hour.

Folks,

Mystery Solved? After reading an article about MG. I found that some of us will also suffer from a 2nd autoimmune disease. One of these 2nd diseases associated with MG is Rheumatoid Arthritis. This would explain a lot of our issue in the morning or while relaxing. Pain in the joints, primarily the hands, shoulders, and neck lasting for about an hour in the morning. Also pain in joints when I am not active. I have had other issues that could be explained by Rheumatoid Arthritis such as weight loss, bouts of tiredness, and issues with Thyroid. I am going to get checked for Rheumatoid Arthritis net month and will update if I find anything out. Good luck folks. Keep your heads high when possible, together we can and will be heard, we can and will figure this out.

i have always been told MG has nothing to do with pain. My Dr, did put me on Fentanyl patches for pain, but attribute
the pain to back problems. 4 years i believe. Had covid 19 vaccinations and they reacted against MG meds. Doctors took me off Fentanyl in hospital. vaccine was torpedo affecting body muscles but mostly thoracic cavity muscles. serious in ER. So pain med was gone totally, which has good aspects, but left me in body racking pain, in neck, back, shoulders, etc. Some in medical are realizing pain and MG are hand in hand. MG and vaccination for Covid almost got me.

I flip all night long from side to side because of the pain. You're the first person who has said this. It's nice to hear I'm not alone or crazy.

I used to be able to do “wall push ups” for my shoulder arthritis easily, but now I can barely do 10 of them due to weakness and upper arm/shoulder muscle pain. Diagnosed with MG Class IIa in Nov. 2020. Was on prednisone and Mestinon for a year, now weaned off both of them. Supposedly in remission, but I do have constant shoulder/upper arm muscle aches pain. Takes me 2 hours to fall asleep at night while the pain settles down.

I was diagnosed at 24 that was 30 years ago. I underwent a thymus removal back then that although gave me immediate improvement of my vision, speech, smile and general weakness it left me with an 9 inch scar on my chest. That is a small price to pay. Although my symptoms have improved greatly I still get them and these do improve with rest. About 7 months ago I sprained my upper arm at the time it was a minor thing but instead of improving the pain has only increased and spread to other muscles including shoulder neck upper back and the whole left arm. I can't hardly move my arm it hurts even at rest it wakes me up at night. I hate going to doctors as any medication given to me in the pass have not been helpful but I will see a doctor soon because this is now affecting my general quality of life.

Hi Retha, I am also in South Africa. Can you recommend a specialist? I am in Durban but will travel to see someone who can help or at least advise my physician. I have been struggling to get a diagnoses for my disparate problems. They keep testing for other autoimmune diseases. I came across some research on MG and almost all my symptoms correspond with MG. Your article on pain is spot on, thank you.

Thank you for this discussion. I'm 80 years old and have had MG 5 years. I'm finding that I've become much weaker this past year and my joints ache: hips and knees especially. So walking is stiff and a challenge, especially after sitting awhile. My shoulders also get achy. Tylenol helps some. I cannot take NSAIDS. I've also experienced cramping of my rib muscles which is very painful. I have to stretch my arm over my head to the other side to relieve it. I understand muscle and joint aches can be caused by mycophenolate, which I take.