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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pain, throbbing relentless pain

marycanelas
marycanelas
I have had such aching, throbbing, continuous pain in my hands, forearms, arms and shoulders. Also some of my joints, its constant, and when I use my hands it seems to aggravate it and the pain becomes much worse, ex, typing this , Is this normal for MG? I cant seem to find any relief and it really impacts the quality of my life. I am feeling very hopeless and frustrated. my arms are cramping, aching ect as i type this. Any advice? I have small children, and I have to find a way to relieve this , I also have chronic double vision, never goes away, I either wear a patch or prisms, both each day switching off and on, but the headaches I get are terrible every single day by afternoon from the eye strain. I started on mestinon but have not noticed a difference except in my drooping eyelid. Please help!
Sarah100
Sarah100
From an "outsider's" perspective (it's my daughter w/MG), it sounds like you may be dealing with something else in addition to the MG (unless this is a side effect of the steroids). From what I've read, you're vulnerable to other immunological issues. This almost sounds arthritic in nature. I would ask an MD what's going on. Very sorry to hear this. Sarah100
deleted_user
deleted_user
I would blame steroids if I had to choose something, I have joint pain often though it is not localized to any area. Muscle cramps too... I know personally sometimes with weakness you use your arms or hands in an abnormal way (after all we aren't always in charge of our limbs) with that either walking, lifting or just moving funny can cause muscle strain. I would check with your DR of course and maybe have you potassium checked that can cause muscle cramps and steroids can cause you to be low, it also can cause additional weakness.
Jules3391
Jules3391
Hi and I'm sorry to hear you are suffering so much with the pain. I only have pain in my ankles and feet of all things but some here have said they have continuous pain in arms and fingers.

I too have permanent double vision. After three years of struggling to read I went to a different eye specialist and he told me it was because my eyes are no longer level. I know it sounds bizzare but one eye is the tiniest fraction higher than the other due to MG. Prisms and patchs won''t help me except to cause headaches like you. I was told to go to the chemist and by the cheap magnifying glasses that they sell. The specialist told me what magnification to wear and yes I can read easily and without any sign of a headache. Don't know if this will help you as I'm not sure what the exact cause is of your double vision but for a small amount of money for the glasses, it might be worth trying. Mestinon did nothing for my vision. In fact it did nothing for me at all except make me go to the loo more often.
marycanelas
marycanelas
thank you everyone for replyin, I do have Lupus and Sjorens, so I know the pain can be a mystery as to which is causin what.
To Jules3391, my double vision is because each eye sees independantly, they no lonGer work as a team, which is why if I cover one, I do not have double vision, when I wear prisms, they help by fusinG the 2 imaGes toGether as 1, but my eyes are still workinG too, which is why I Get the headaches. I have yet to find anyone else that has had the double vision chronically like I have over the past 3 years.
My pain does feel arthritic, but I know I do not have RA, I do have Lupus, Sjorens, MG and also MS. My neuroloist and rheumy both say I have full blown autoimmune affectinG central nervous system, connective tissue, lubricant, Glands, respitory,coGnitive, bladder, GI, the list is on and on, between all the diseases, there isnt much that is not affected. When one thinG improves, somethinG else always seems to pop up, very hard, especially not fully knowin what causes what, I know the treatment for all I have is the same, so I am on the correct meds, pred, plaquenil, imuran, IVIG,mestinon. Thank you all and GOd Bless!