My Pain Is Just as Real as My Myasthenia Gravis

Retha De Wet avatar

by Retha De Wet |

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Pain is a big part of my life. I have been in daily pain for the last 10 years. The only medical reason I have for it is myasthenia gravis (MG).

I highly value science. When I was diagnosed in 2013, there was still little evidence online that pain was part of MG. Many doctors also dismissed this reality. But my pain still demanded to be felt, even if it wasn’t being acknowledged.

My pain levels directly correlate to my level of MG weakness. The worse my MG, the higher my pain levels. The parts of my body that hurt most are my weakest areas, or the ones connected to them. For example, my neck is one of my weakest spots, but my pain isn’t limited to my neck. My whole back and shoulders are also often affected.

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Chronic pain is an underrated impairer. It does not only limit movement but can also result in cognitive deficits commonly referred to as brain fog. This means I have difficulty with things like word-finding, memory, attention, and task organization. If only I made money every time I lost my train of thought mid-sentence.

Pain also has an immense effect on my mood. I would say that I have a high pain threshold, but I mentally break when there is no break from the pain. Unfortunately, the ones closest to me usually suffer because of this.

Lastly, it results in isolation. I have canceled many plans because I was unwilling to sit through a fancy dinner. Some days, I can’t just smile through the pain. Some days, I just have to lie in bed and cry.

Sometimes, I feel like pain is my worst symptom of MG. Until recently, there was limited research about the presence of pain in the disease. In other words, many of those with MG had their pain dismissed.

MG limits my movement, affects my cognitive function, impacts my emotions, and results in isolation. Yet pain is often seen as a symptom or side effect while MG is a disease on its own. This is just another reminder that categories do not determine magnitude.

I sometimes still believe my pain is psychogenic because I was dismissed so many times by different people. However, I am actively working on unlearning this.

I am trying to believe myself above what others perceive as my reality. After all, I am the only person experiencing life in my body. No one else knows what you’re going through but you. Remember that.

Life is beautiful. Never stop fighting.

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Comments

Craig avatar

Craig

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

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Craig avatar

Craig

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

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Shirlee Fox avatar

Shirlee Fox

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.

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Jonathan D AUTORE avatar

Jonathan D AUTORE

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?

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Wendy Osborne avatar

Wendy Osborne

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.

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Gillian Harris avatar

Gillian Harris

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!

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Amy Scolese Weiss avatar

Amy Scolese Weiss

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?

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Ari Maayan avatar

Ari Maayan

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!!!

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Brenda Lipar avatar

Brenda Lipar

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?!

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sally creech avatar

sally creech

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!!

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Jonathan D AUTORE avatar

Jonathan D AUTORE

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.

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Bob Browning avatar

Bob Browning

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!!!!

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Troy avatar

Troy

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

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Robert avatar

Robert

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.

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Troy blancher avatar

Troy blancher

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.

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