Pain and Myasthenia Gravis

[Kathy]

I absolutely experience pain. I have generalized MG.  If I overuse a muscle in my legs, core, or arms I get weakness first and then pain.  It doesn’t take much effort or use before the weakness starts.  My threshold is very low.   I have had a ton of rheumatologic tests which have all been negative and was told it was the MG.  Am I imagining the correlation?

[Cynthia]

Its worse at nught. Twitching and cramps in my legs and arms. Im taking possession and magnesium. So far not much change.

[Amy]

Hi Cynthia,  Are you taking the potassium and magnesium for muscle cramps?  I wondered about Magnesium since I thought it was on the use with caution list for MG.  I use both a topical oil and a vitamin B complex that have Magnesium.  It has been the only thing to stop the awful cramps I get.  Walking it off never seems to help.  The worse ones are in my upper thigh muscles and forearms.  The pain is unbearable.  It feels like someone is twisting the muscle like they are wringing out a towel. The next day my muscles are so tight I can barely walk. I was never quite sure if muscle cramps were a symptom of MG or not.

[Cynthia]

I take low doses of both. I dont really see any changes and it worsr at night when i I lay down, or anytime i lay down. Ive been told by my chripacator to get an MRI but kaiser wont order one.

[Philip Callas]

I take low doses of quinine for the cramps, typically tonic water with quinine has helped me control cramps drinking tonic water in place of water has helped me

[Liane Martin]

I definitely experience pain. Mostly in my hips when I walk a lot or move around a lot. And yes, I have cramping as well. I take an electrolyte pill every day, and try to stay hydrated, but still have cramping.

[Lilli]

I get it all day it does seem to worsen during mid day. It can be quit painful but mostly annoying. I think i have the wrong doctor. I need someone who will address my concern.
Thank you very much.

[LISA MICHELE HALL]

I experience pain all day! My doctor does not address this issue. It is directly associated with my leg and arm weakness. It is very frustrating to be ignored by the physician that I am in PAIN! Does anyone else have pain?

Lisa

[Barbara E.]

Don’t take being ignored!

If it was me, I’d meet with my doctor and talk about the pain and how its impacting my life. Pain isn’t visible or measurable, which makes it harder for others to understand unlike something solid (like a blood test). But, how the stress from it affects our lives is real. If you decide to do this, try to keep to ONLY this topic to hopefully keep your doctor from being distracted by other issues. Keep fighting for your best quality of life!

[MikeS]

Last year I started Mestinon and also concurrently started getting leg cramps. I didn’t realize that they might be related until I read your message.  I get them at night in bed usually before falling asleep.  I can also initiate them by extending or flexing my foot, and surprisingly my toes, too.  I’ve been trying Magnesium pills for a couple of months (they are supposed to relieve muscle cramps, I’ve been informed) but no relief so far.  I’m interested to see other responses to your question.  Thanks!

Mike

[TheresaG]

I definitely have a lot of pain.

I previously had back surgery which caused permanent nerve damage/pain, subsequently put on pain management/meds.

the overuse of muscles cause pain everywhere else. I cannot imagine how bad it would be as my pain meds for the back do not cover the other pain.

I try to describe to my husband the pain, it feels like it comes out from the bone through the muscle along with the weakness.

Anyone else feel the pain like that?

lower legs, back, neck, shoulders. UGH! That time of day now!

[Alan Bridle]

Mike – I have the same issue with cramping that comes if I “point my toes” in bed.   I am on 4 x 60mg Mestinon daily.  My neurologist says magnesium supplements are not a good idea for MG patients and instead just to try to avoid movements that initiate the cramping.   I am now on some sleep aids (trazodone and seroquil) that help me rest better and move around less during the night and that has helped enormously – less time tossing and turning at night was the answer for me.

[Troy]

I wish our doctors read these columns and posts.
I have been diagnosed to over 8 years and for the past 4 my muscle aches and pains have been ridiculous. I have noticed that a lot of the responses are from people on mestonin. I am only taking prednisone and have never taken anything else.
the pains are mainly in my shoulders, biceps, neck , and sometimes upper thighs. It hurts when I SLEEP!  And it really hurts when I wake up. The pain I endure is more problematic then any of my MG issues since I have been taking medication.

Yes….. I have spent $$$ doing arthritis tests and X-rays to no avail.

interesting thing is when I hurt myself skiing the other month and was on Motrin 800 for the pain, I had almost no pain in my shoulders or elsewhere. It was a nice break.
I wish us all the very best and hope that someday our physicians, whom we pay $1200+ an hour to, will listen to us and help us.

Troy

[Barbara E.]

My pyridostigmine (Mestinon) dosage has greatly increased during the lat 3 months. I hadn’t made a connection before, but have experienced an increase of very painful cramping in my feet during the night when my feet are in a pointing position under the bedcovers. The only way I can stop the cramping is to either stand up or flex my feet (opposite of pointing my toes). I was going to mention this to my podiatrist next time, but may need to reconsider what may be the cause first.

[TheresaG]

Barbara,

this happens to me exactly uf I’ve taken a dose in the evening, other times as well but definitely under the covers.
I’ll jump out of bed in pain and weight strain the toes to make it stop.

i am able to reduce side effects by halving the pill. I think it probably due to too much or not enough fluids or magnesium or potassium in body MY theory is it just reacts differently different says.

If I cut back from 4/60mg to 3 for a day it quickly straightens out. Then I resume the next day to 4. Or I take 1/2 pill instead of a whole pill at 1 dose.

we all process meds at a different rate, so following their exact written dose affects us each different. There is a lot of flexibility in this Med as it is pretty harmless and a very short half life. Diarrhea and cramps being the main side effects. Both short lived.

i just find my playing back and forth.with dosage I can keep it mostly in check.

Podiatrist likely will be clueless and look up the wrong tree.

I would speak to Neuro first if you cant manage it with playing with dosing.

According to my docs, it is not needed to be used exactly as prescribed. It’s more what works for you.

good luck!

 

[Barbara E.]

Good thought, Teresa!
I’m taking pyridostigmine ER 180mg (4 times daily) and the instructions say not to split or crush the pills. So perhaps I can try taking the last dosage earlier to see if it helps avoid cramping. It it gets too late, perhaps skipping that dose would be best. It’s worth trying.
Thanks!
Barbara

[TheresaG]

Barbara, good luck. I literally find myself dancing with the dosing daily.

i think metabolism, diet, sleep, disease all influences it on a daily basis.

so go with what works, right?

 

[Barbara E.]

Exactly, Theresa!

[RINA NEL]

A while back someone mentioned that he does not take Mestinon after 4 in the afternoon. I suffered from severe cramps at night. I used to drink my 3rd Mestinon for the day at about 7 at night.
After I realised that Mestinon only sustained the simptome for 4 hours I decided to space my Mestinon intake to 8 in the morning, 12 noon and 4 in the afternoon.
I must thank the gentleman who suggested this. I am sleeping better and the cramping are not so severe. I don’t have to jump up during the night to flex my leg or foot to relieve the cramps. I am in a good space where cramps are concerned. I can live with it the way it is now.
Thanks to the forums I could pick-up on very good advise.

[Kevin J Funaro]

My neurologists questions my symptoms since it is mostly in leg weakness and tingling. Pain always when I get up because legs are so weak.

[Alan Bridle]

I have also seen a clear connection between my Mestinon dose and cramping.   Before I was diagnosed with gMG I sometimes got severe hand cramps in the evening after using hand tools in the afternoon, so I had a pre-existing issue with cramping.  Since I have been on Mestinon (60 mg four times daily) this has been much worse and I can get severe hand cramps just from cutting food and gripping utensils while eating.   I used to take one Mestinon dose before dinner to help with swallowing and vision issues during the meal but now (5 months into my diagnosis and treatment) I find I do not need that relief any more to help me eat.  Last week I tried taking Mestinon differently, with what had been my dinner time dose taken in mid-afternoon instead.  My hand cramping (after my evening meal) has completely gone away.  The effect was immediate and my neurologist acknowledges the possible connection even though he says he is unsure what the exact mechanism for it may be.

[Norman Ross]

I have had gMG since 2017.  The first year or so I was taking 60mg pyridostigmine 4 times per day.  The frequent night time leg and foot cramps were horrible, and I had to stand up to relieve the tension in my muscles.  Then, I read a post on this forum that was written by a fellow who converted to cellcept.  Now, I take 2 pyridostigmine before noon, and 2 cellcept (500mg) in the afternoon.  This combination works wonders for me.  A daily rest/nap period helps too.  Since each patient is unique, some experimentation regarding medication and performance of daily activities is probably necessary to determine “what is best for you”.  Yes, as Charlie Harper would say, “I understand”.

[Paul Dube]

I have had generalized myasthenia gravis for just over three years.  The medication I take is mestinon, three times a day.  With medication, I no longer have double vision from my left eye, facial drooping  or  swallowing issues but I do have muscle weakness in the buttocks and upper leg muscles which increases as the day goes on.  My very first symptom was double vision which I believe was seriously aggravated  by taking magnesium as a supplement.  So I would caution others taking this supplement.   I also avoid cereals that contain magnesium.
I am in physical therapy for lower back pain and the treatment plan is to strengthen my core muscles.  Why?  If the core muscles are stronger than those muscles tighten the muscles surrounding the spine and consequently less pain emanating from the spine.  They hold the spine in place.  If the buttocks muscles and upper leg muscles are weakened by MG then the spine can cause pain if the spine already has arthritis, stenosis etc.  That is what happened in my case.  With a weakened core I do experience lower back pain when I get up in the morning but it soon dissipates after I walk for a minute but again a stronger core helps.  Sleep helps restore muscles so taking mestinon before going to bed does not make sense to me and if I feel stronger I will delay my first dose until mid-morning or later.  It is only as the day progresses and the muscles weaken that I do experience wobbliness when walking.  Best, Paul D

[Alan Bridle]

Without night time mestinon I was waking up short of breath and with low oxygen saturation so there was a reason to take it overnight.  I tend to get muscle cramps at the end of the day that seem to be affected by my mestinon dose timing, worse in the first hours soon after I take the 60 mg pill.  But I take a sleep aid when I go to bed so I can get the benefit of the better breathing while not being woken up by cramps.  I do get the toe cramps that someone else described here but they are easier to tolerate than waking up short of breath during the night.   I reckon MG is a little different for each of us so we each have to find a coping regime that works for us.

[Barbara E.]

Hi Alan.
I was wondering… Since you need Mestinon at night, is there any reason that your doctor hasn’t switched you to the extended release formula? Mestinon 60mg lasts for approximately 4-6 hours (I’m at the lower end of that range), while Mestonin ER 180mg lasts about 2.5 times longer. I’m just curious if you were given a reason.
Thanks!
Barbara

[Alan Bridle]

Hi Barbara

My neurologist and I were trying to time the benefits of the mestinon, which was helping me to breathe better at night when lying down and also to swallow my food better and more safely during the day, as well as relieving my ptosis and the vision problems that came with that. We went with taking 4 doses of the 60 mg regular pills because that let me try adjusting the dose timing myself according to changing needs.

That worked out well for me.

I am now less dependent on the exact timing of my mestinon doses relative to meals, as my chewing and swallowing are much improved.  I still try to manage evening cramps by having a longer interval between my afternoon dose and my bed time dose than the others, so the ability to adjust the dose intervals  still helps.

We all have to find which regimen works best for us and that may depend on how we individually respond to the drugs and what side effects bother us most.   I do well with the way I take the 60mg doses at the moment so I am still happy with that approach but that does not mean it would be the better choice for someone else.

As TheresaG said, “go with what works” … for you!

Alan

 

 

[Barbara E.]

Hi Alan,
Your plan makes sense. I’m just trying to figure out why some doctors prescribe one medication vs another. Of course, the fact that we all vary in our symptoms and meditation response, makes seeing any pattern more complex. I’ll most likely never get a complete answer.
Still, thanks for clarifying your situation.
Barbara

[Paul Dube]

Mestinon was the drug of choice when I was diagnosed with Generalized Myasthenia Gravis.  It took more than two years for the side effects of Mestinon to subside.  The side effects included bowel/pelvic pain, diarrhea that was uncontrollable and pelvic floor dysfunction.  The alternative to mestinon was a steroid which was not recommended by my neurologist because of those side effects causing even more medical issues. I am glad that I stayed with mestinon because now I take it with very minimal side effects, if any at all.  Like my fellow colleagues, I am waiting for a cure that does not include steroids or infusions.

[Shelley Prior]

I am supposed to take 3 x 60mg mestonin per day, but about 5 weeks back I woke up in the middle of the night feeling like my right leg was being twisted off from my groin to my ankle. Had X-rays, nothing wrong.

This went on nightly for 2 weeks.

Read here that a woman used heat to relax her cramps, which did work a little for me.

In desperation, I stopped my 3rd dose of mestinon but it was a bit of a  concern because I take my last dose by 3 pm at latest. Seems to have worked because I do sleep through the night now, but it is now 15 hours between doses.

I am seeing family doctor next week. Don’t have a neurologist as I was only seeing an neuro ophthalmologist who has done all she can for me. Hope my dr will refer me to  neurologist soon.

Pain seemed to last all day at first. I was almost like I had worked out and my leg muscles were sore. Leg cramps giving me an auto workout.

 

 

[Lilli]

I’ve asked this question in a different place on this site so as a newbie please forgive my redundancy if u all have seen this question before. When taking mestinon i noticed right knee pain and left sided chest pain. I went to the ER thinking i was having a heart attack they assured me i was not. When i stop the medication the chest pain goes away. Unfortunately when i stop my MG symptoms come back. Anyone ever experience anything like this my neurologist said if it is the mestinon then he doesnt know what to do….yikes!!!

[Lilli]

Hi Jodi
Im on verapamil for arrhythmias, Coumadin for Factor v Leiden a genetically inherited clotting disorder and Pulmicort for asthma also Prevacid for GERD.
I keep hearing about Mestinon causing muscle cramps i thought about the chest muscle but the pain is very specific. Can it cause the heart to spasm? Or could it have been esophageal spasms? When you have a doctor who says if its the medicine then i don’t know its not only scary but you feel abandoned.
Its hard to have a life off the meds.
Thank you for your interest.

[MikeS]

I think it’s obvious from all the comments that mestinon enhances muscle cramps.  I never used to get them until I started mestinon around 2 years ago.  I get them primarily in my feet and usually at night.

[Lilli]

Yes i read all the folks who suffer with the pain MG/medication can cause my heart goes out to them. For me the Chest pain was quite concerning. I guess i just want to make sure its not my heart and if this medication is affecting my heart…. what then?