Originally Posted by TxSimon

Erin,
I feel for you and the pain. I am praying that the pain eases and you are better! You deserve a break! Keep venting all you want, as we completely understand. Keep us informed as to what is happening and we will continue to pray.
Huge Massive Hugs to you,
Simon

Originally Posted by Joanmarie63

ERIN

OK, you all are going to think I am crazy here, but.. I think it is our medication that is causing the pain Erin. My Dr said it was nerve problems, then said it was fibro, but I think it is side effects of the medication.

If you look it up as I did some of the side effects can be pain. I did notice that since starting back on mestinon my pain has increased. Sometimes my left leg won't even work right.

I have noticed that the only thing that helps my pain a bit is "Aleve" Dr really doesn't want me taking it but has no problem giving me percocet, I prefer the Aleve. I also have the lidicane patches but hey I can't cover my entire body with them, besides they didn't work for me either.

Ask your Dr about the side effects, I know it doesn't make sense to many of you but me being so sensitive to medications it makes sense to me

I am seriously thinking of asking for medical pot, {to cook with} just to see if it would work

Originally Posted by jana

Erin, I have an off-the-wall suggestion. I had "discomfort" (I hate to call mine "pain" because it was NOT as bad as what you described) in my neck, shoulders, hip girdle muscles, lower back, and above my knees. Other MGers told me that they had similar pain/discomfort from time to time. During exacerbations, I would take pain pills -- at other times, Tylenol would suffice. About a year ago, I started taking Topamax for my migraines. Withing a couple of days, my muscle "discomfort" (and my headaches) DISAPPEARED!!! I have a few muscle "twinges" from time to time if I over-do -- but, NOTHING like I had before.

I did some research -- Topamax is being used (experimentally, I think) for the relief of Fibromyalgia and other types of nerve pain. As far as I know, I do NOT have Fibro. Maybe????????? It might be worth asking. Topamax recently went generic. I started out at 25 mg.

Originally Posted by bluesky

Erin, it's just breaking my heart thinking of what you're going through.

I can imagine that chronic pain would grind a person down very fast. And then add to that the fear of not knowing. Have you tried going to a physiatrist? They're doctors who specialize in diagnosing the causes of pain and treating it (among other things). I know that 'cause I'm addicted to watching Mystery Diagnosis

This probably won't help you at all, but sometimes when I'm really sick I'll just get all over pain and stiffness suddenly. I can't even move, it hurts so bad. And then it goes away after a couple of days. Probably due to what Alice was saying, I'm just overworking weak muscles.

I know it's got to be hard to get through each day. Somebody's got to help you! The squeaky wheel gets the grease, so squeak your loudest squeaks!! Keep pushing until you get some relief.

I'm thinking of you!!!! Hang in there.


And ya, MG SUX!!!!
Ally

Originally Posted by Nicknerd

Hey Erin,

I'm sorry you're going through such pain! It sounds bad, and I remember a time when I was in pain like that...I used to get horrid joint pain in my wrists, knees, and jaw...The only thing that ever seemed to help was sleeping, for some reason...and sleeping a lot! I used to mainly get it at night...My hands would be 'stuck' in claw positions because the pain was so excruciating...I couldn't turn a door knob...I would have to use my forearms..I felt like a tyranisaurus rex sorta...lol

The prednisone, and more sleep (not working right now) seem to help...I would get muscle pain too...The extra sleep would help with that a bit too...

I hate to add another variable to the mix because it makes everything so complicated...but I've always had my thyroid monitored because I have antibodies attacking it...My TSH has always been 'normal' apparently...Well, I went to see an endocrinologist yesterday because of the prednisone diabetes and to schedule a bone scan...He said that my thyroid is failing...It's not quite there yet, but will be soon (borderline)...He said that bad thyroid function can cause muscle and joint pain and even muscle weakness plus all of the other things it can do (hair loss, dry skin, weight gain, fatigue, menstrual problems, etc.).

I started looking into it a bit more...In the past, my rheumatologist thought that I might have fibromyalgia (before MG diagnosis), but I didn't have all the trigger points...Anyway, I read that it's very common for people with Fibro. to have poor thyroid function, so in essence, they're sorta misdiagnosed...Also, what's 'normal' in terms of TSH varies from lab to lab, and even from person to person...SO a person can have normal values, but still not feel well because of their unique needs...There's also something called 'central' hypothyroidism which a lot of people with fibromyalgia are found to have...Anyway, I'm sure the doc. keeps an eye on your thyroid, but what are your levels at? If your thyroid's not working right, it can cause a lot of pain in the muscles and joints...


Anyway, I hope the docs. get to the bottom of it all! I also noticed that you weren't posting much and was feeling worried! Get well soon!