I am overwhelmed and exhausted and have nowhere else to turn... I don't even know if any of these thingss are related, it just seems a never-ending battle.... but Myasthenia Gravis has now been mentioned to me three times, so I thought I'd ask here. I'm including all the details because maybe someone has some insight or can put the peices together or help point me in the right direction. I've been fighting major upper body pain & exhaustion for the past two years.

I had two kids, born 11 months apart. They are 6 & 7 now. Relatively healthy second pregnancy, but the first I did have some major issues with pre-eclampsia. Both babes are very healthy. I was pregnant for almost 18 months straight, which was not kind to my body.

In 2009 I got Mono very badly, ended up hospitalized and then got shingles. Painful, but nothing as bad as what was to come. About two weeks after the shingles broke and started to go away, I had a very odd symptom of just one part of the right side of my face becoming paralyzed. Three different docs tried steroids, various meds and tons of tests. They thought maybe bells palsey but it wasn't definitive. It mainly affected the muscle that pulled my right eye out, so for about 6 weeks I had crossed-vision. Eventually, it just went away and my horrible primary doc only had "well, let's just hope it doesn't come back" to say. Nothing showed up on multiple MRIs or in blood tests. They did think maybe Myasthenia Gravis, but I don't produce that antibody (though you don't have to, to have MG from what I read).

I was relatively healthy for the following 8-9 months, except that it seemed I had major immune issues. I caught anything the kids caught, if anyone in the office was even remotely ill I would catch it within a day. I even caught things that my friends kid's had, without being exposed to the kids, just their non-sick parents.

I started having the upper body pain about 2-3 years ago, I've lost count. After lots of PT, nothing showed up on X-rays so we did an MRI. One doc said he saw nothing, but a spine doc said he saw a "potentially" damaged disc at C5-C6, in that it lost some of it's mass, but maybe only 20%. 2 doctors say yes they see it, 2 say no. They all see bone spurs and arthritis in my shoulders and neck, but all of them say it shouldn't take dilaudid to get rid of my pain. And frankly, that's one of the few things that works.

The pain is downright unbearable sometimes. I've done multiple injections of steroids and pain releiving drugs straight at the nerve roots. They would help a little, but never completely. In Oct 2011, I saw another doc who decided it was carpal tunnel and medial nerve entrapment. Surgery, of course, and while that took away a lot of the sensitivity and all of the "tingly/pin-prick" feelings in my hands, it didn't take away all the pain.

They've basically put me on a rotation at the pain management clinic. Every 30 days, I go back and get more narcotics. I hate them. Tramadol has been helpful, because I don't get the "high" feeling and I can work... but it's starting to not work now. I've gone all the way up to dilaudid, and back down to tramadol with nucynta when it gets really bad. It never takes things away completely, but I've pretty much compeltely resolved that it's never going to go away 100%. I was on topamax for about 2 weeks and it was wonderful. All my pain and exhaustion went away... but I turned into a box of rocks who ate & drank nothing for those two weeks. MAJOR brain fog, which scares me because I have two little kids to take care of. So, off topamax, back to tramadol and nucynta. My primary care doc thinks maybe fybromyalgia, because topamax worked so well. Pain management/spine doc disagrees.

I'm at my wits end. I'm in so much pain. Some days, I could sleep 12 hours and still be exhausted. Some days are fine. It seems like a constant rollercoaster of flare ups and calm downs. A lot of the time the pain stems from my right shoulder blade (around the cusp of it, closest to my spine) and that seems to be the epicenter of pain. Goes majorly into my shoulders and down my right arm. Elbows and wrists are major pain points, and right hand aches so bad too. I have good days and bad days. Today is a bad day. Pain is basically all over my upper body from my bossom up. Headaches are regular. Tramadol not touching it.

Please help. Any thoughts or pointers or a place to start reading? I've googled my brains out and I just want a definitive answer. I've considered seeing a rheumatologist, that's the only specialist I haven't seen so far. What doctors specialize in MG?

Sorry this is so long. I'm just hurting so bad and am so tired of just having pills thrown at me.
Thanks in advance for any advice
-Kaura
31 y.o. mom to DS7 & DD8