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ITS MY BODY!

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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.

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Hey folks, it’s nice to know I’m not crazy. I have been complaining to my neurologist and general physician about pains for some time now and after being repeatedly told it isn’t from my MG, I have spent money on several X-rays to check for arthritis or other issues and now they want me to do an MRI because everything looks good.

I take prednisone and have been diagnosed for about 10 years now. My pains started in my shoulders and fingers. There are times my finger will feel like it’s broken or severely sprained, I even had to tape it up for 3 months this summer and then it’s all of a sudden better. My shoulders really hurt in the mornings and later in the day, even when I’m sitting watching tv. It can get to the point that it brings me to tears(and I deal with a lot of pain from migraines)
I am lucky in the fact that I don’t have to much weakness from my MG, only climbing stairs and working above my shoulders, and am still able to ski 20 days a year and walk 23-30k steps @ work w/o any real difficulty… but the other pains that I feel cause me issues on a daily basis.
I can deal with the limited weakness that I get, but sometimes the shoulder & bicep pain I feel can be a bit overwhelming!
I to have often wondered if it doesn’t have something to do with the fact that certain muscles aren’t working properly and others are overworked, or that sometimes certain muscle’s don’t get the signal to retract causing them to “lock up” as the others around them are moving.
I don’t know, but it HURTS and it wasn’t like this before MG.

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Jonathan,

I have a question about the statement you made about “Your bicep MG muscle pain”. Can you elaborate on this for me PLEASE??!

I have been diagnosed for 8 years and went 2-3 before diagnosis. I am on prednisone and it is the only medication I have taken for MG. I take 10 mg a day.

I have been suffering from aches and pains in my shoulders, biceps, legs, fingers, and I’m probably forgetting some. I thought it was rheumatoid arthritis, because most of our neurologists say MG Does Not Cause Pain!  It makes it hard to sleep, stay asleep, and miserable to wake up to.
So when you said bicep MG pain I am curious as to what you mean and if you have been able to prove it’s from MG. A lot of us mention the aches and pains , but our doctors don’t seem to be able to figure it out. I will not do a sleep study, as I know it couldn’t be accurate in a setting other than my home & my schedule.
I have loved to sleep my whole life,as much as 10-12 hrs/day when I was younger, but now it’s often something I just dream about(along with waking up w/o aches and pains & weakness).
There are times when I wake up and it feels like I went through a workout session while I was sleeping or ran a marathon or something.
I hope & pray the New Year will keep us all Safe, Healthy, Happy, & maybe give us some Answers!

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Jodi,

I have been a medical marijuana patient for over 7 years. I understand your struggles. I too take it to help with anxiety, pain, headaches, and probably a few other things I am unaware of. It does play a big part in my travel decisions. I rarely travel to a state that doesn’t allow recreational use. When I do, and I am unable to obtain any, then I can suffer some anxiety, sleeplessness, and restlessness. The only things I have found to help are food, sweets, and alcohol. I don’t notice any MG change without it, but I keep those trips to a minimum. Hopefully soon it will be legal on the Federal level & our issue will be solved.

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I am a lucky one. After a year of symptoms and finally being on a full liquid diet for 2 months I finally went to the doctor. My eye lid was drooping badly, my swallowing & speech were impaired. It took me 2 doctors and a year of being miss diagnosed to finally be properly diagnosed with MG. My first diagnosis was Herpes Simplex of the eye. Then my doctor swallowed his pride and asked me to see a specialist. Interesting thing is while waiting to see a neurologist, I went on WEBMD, typed in my symptoms and in 3 minutes I was 95% sure I had MG. I wish the Doctors would utilize All the tools available and maybe even confer with each other to better their knowledge of our disease. Yes, doctors do prescribe what has worked for them in the past and seem real reluctant to try anything different. Mainly because the disease is so unknown, they just do what had kept others alive. I have heard that on average it takes an MG patient 3 doctors and 5 years to be diagnosed. I was lucky and my neurologist specializes in MG and new what he was looking for. Their aren’t many out there that do, mainly because it is rare. Good luck folks, Be Safe & Stay Healthy

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Hi folks. I have been on prednisone now for 7 years. I am down to 10 mg daily from a start at 30. I did not stay above 20 for more than a year. That first year I experienced weight gain, rounded face, and unfortunately osteoporosis within the first 3 months.  The weight gain seemed to subside when I got down to 15 mg. Now I can’t gain weight for anything.  The other side effects such as mood swings, chemistry changes, and that feeling that it’s just not right to be on this drug for this long is hard to deal with. I am 50 years old and have a ways to go. The other options I have been given are drugs for people with transplants and would lower my immune system even more. I work at an elementary school and that’s not an option. The positive is that there are companies trying to come up with new options and several are in the final stages of approval. Hopefully soon we will have a medication that is designed to treat OUR disease. Be Safe, Stay Healthy

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LOL… Absolutely love it!  It’s is like whack-a-mole. It keeps popping up and you best it down and it pops up again!  Beautifully described