Myasthenia Gravis Support Group

Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...

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Muscles & Bones
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throbbing leg pain

marycanelas
marycanelas
I suffer from deep, throbbing leg pain, which gets worse every day the more I stand on my feet, and/or walk, going to the store, cooking in the kitchen, ect. My MG doctor says he doesnt think the pain is caused by the MG, and I also have Lupus and Sjogrens but my Rheumotologist believes the pain to be from the MG,

UGHHHH
Is there anyone else who suffers from the leg and feet pain I describe above? I wish I knew what caused it and how to help it. I practice alot of yoga which definately helps, but I still have it every day and by the time I get into bed in the evening, it is so bad sometimes all I can do is cry. Also, then I get up through the night or in the am to go to the bathroom, I can barely put my feet on the floor, its so painful I hobble to the bathroom, this gets more tolerable as I stretch out and move about in the morning, but then the deeper, more neuropathic pain starts all over and worsens again the the day goes on. My knees are terrible as well, I have a very hard time with stairs,
Any advice, anyone feel like I do? I feel all alone, I am always checking to see if anyone has written in on the topic, hoping to see that I am not crazy!

Fatigue and this pain are definately the 2 worse things that affect my quality of life. Chronic double vision is the other, I have had it for over 3 years and have to wear an eye patch.
I hope everyone had a pain free wonderful Holiday,
Peace to you All!
Mary
Jules3391
Jules3391
I am sorry to hear of your suffering. I don't suffer from leg pain like you do. I suffer from foot pain which drives me absolutely nuts. Sometimes when I walk it is okay for the first say ten steps then the next ten steps are in severe foot pain which makes me limp like you would not believe. Then the next forty steps are okay and then the next twenty are painful and on and on it goes. When I get up in the night I like you can hardly walk, I stumble limping around with feet that I can hardly bend.

I understand the way you are feeling because I am there with you. I too also have chronic double vision 24/7 for three years and nothing can be done to rectify it. It is caused by one eyes muscles changing and nothing will change it back. For someone who was a constant reader it is life changing and not for the better.

I hope that you get answers and relief from your pain. Take care.
deleted_user
deleted_user
About a year ago I started having pain in my foot and ankle. I thought I might have turned it or something when I was walking. Then the pain continued to get worse, my ankle would swell and it feels like I have an knot in the arch of my foot. I tried getting new shoes, nothting seemed to help. I told my regular physician about it and she sent me for x-rays just to make sure it wasn't a stress fracture. Thankfully it wasn't. She called it plantars fasciitis. It hurts from the moment I stand on it whether it be the first thing in the morning or the middle of the night. Sometimes it starts to feel better during the day. If I try to walk the pain gets worse and it will slowly move up my leg through my knee as I wailk. She suggested I go to a podiatrist, but with all the other treatments and stuff going on I haven't been able to, but I have been given some advice on what to do. One of the things that helps is rolling frozen water bottle under my foot. This does help, especially with the swelling. I don't know if this is what's happening to you, but maybe seeing a podiatrist might help. They may be able to diagnose what's causing the pain. Just a thought. Good Luck!
deleted_user
deleted_user
I am so sorry for you having so much pain. I,
too, have tons of pain in my legs. I cannot
stand for any length of time in one position.
I have to move around, but it still hurts.
I was told I also have Fibromyalgia, which
causes lots of pain.
I am sick of my doctors not being able to agree on anything either. I have had three
tell me I have MG and four tell me they
aren't sure. I am redoing my EMG and
Nerve conductor tests in Jan. Not looking
forward to that!
From what I've read most MG patients also
have Fibromyalgia. Read the symptoms and
see if you think you might, too.
Best wishes for a brighter new year.
deleted_user
deleted_user
Mary,
I have had leg pain for going on three and one half years now. Sorrry ,this is happening to you too Mostly in my left leg which also gives out sometimes.It started with severe muscle cramps which have lightened up but now I will have stabbing pain in my leg-usually comes if I have been on my feet too long but not always. I practice yoga too and have tried to match up symptom to the activity but sometimes it comes out of no where. My massage therapist says that when my leg feels like cramps-it feels to her like a wet crinkled noodle. Hope this helps Sophia
deleted_user
deleted_user
Mary,
I meant to tell you that I have fatigue some days horrible and other days it is better. Sophia
deleted_user
deleted_user
Do you take Mestinon? I get muscle cramps from that that are very painful.
I ocasionally get double vision that Predinose
will get rid of.
deleted_user
deleted_user
I am not sure if you take Mestinon but on my information sheets on it it says muscle cramps and foot pain are part of the side effects. I have been on this drug for almost 20 years and have had these problems from almost the beginning. I too do gentle stretching. I also have massages which help. Know you are not alone.
Kelly66
deleted_user
deleted_user
I'm sorry about your pain in your legs. My legs ached constantly but it's more like a constant growing pain which is more annoying. I hope your legs get better :)
deleted_user
deleted_user
Mary thank you so much for sharing about your pain. I have been searching for anyone who can understand my pain and help my doctors find out what is wrong with me. I was diagnosed with Fibromyalgia in 2006 for my leg pain and pretty well controlled with Lyrica. I came off of the meds in early 2009. For about the past year I have been in serious pain as you have described. (And you did a Perfect job describing it, way better than I could ever put together).. I just want my doctor to diagnose me. I am so tired of assuming it is fibro and the constant replay of "Lets try this medicine)..
I have hope in reading about you that I can go to my doctor and open her eyes to more possibilities of diagnosis. Thanks
bweeds
bweeds
I have MG, and I do have cramps when the mestinon wears off, but keeping the dose lower and more frequent seems to help. Timespan was a bad actor in that respect. Mestinon is not the only drug that can cause muscle problems and a good review of your medications might be helpful. Some can cause electrolyte imbalamce, some actually cause pain and some can cause muscle breakdown associated with pain. Unfortunately, there are other autoimmune related illnesses with muscle pain including cramp fasciculation syndrome. I would suggest in general that before you and your doctor try other medications to control these problems, be sure the medications you are alreadt on are not causing them. Good luck and best wishes. b.
deleted_user
deleted_user
I can certainly empathize with your pain as I have both hip and leg pain. I a always amazed at what I learn from this support group that our docs seem totally clueless about. What I was so impressed with is that you do yoga! How do you do that. I can not even walk around for more than 10 minutes without having a hard time breathing; not to mention the pain. I really want to know how to be able to get to the point of doing some sort of exercise. I know everyone is different with symptoms but there has to be some secret I am not yet aware of. Anybody have any ideas? ANYBODY?
deleted_user
deleted_user
i have noticed lately for the last couple of days my lil one keeps complaining about pain in her leg she at least has come to me once a day saying "mommy it hurt" im keeping and eye on it she walks fine and all so im not sure if its growing pains or what it could be i usually just massage it and then maybe a few hrs later she says the same thing so im kinda clueless does this have to do with MG
VickiB
VickiB
I haven’t been diagnosed with MG yet but it seems to fit my symptoms. I have had CFS for 20 years. Last May I started getting painful muscle spasms in my legs early in the morning.
If I was active during the day, they happened when I went to bed. If I’m not active, they happen in the morning.
Now I have weakness in both legs that gets worse as the day goes on. By bedtime, I can barely walk. It’s like I’m drunk and have no control over my body.
Has anyone had similar symptoms? Does this sound like MG?
Thanks for your help.
Amyjo
Amyjo
I have severe leg cramps/pain with any activity. As others have stated, the mestinon seems to help with those.... but when I am not able to take one I use a combo of essential oils as a massage oil (kind of smelly...). I have also recently added cbd lotion to my arsenal and love it for the leg cramps, lesser strong smell as well. Both the essential oils and cbd work within a minute, hold their own for about 3-4 hrs.