What Next? Terrible Muscle Weakness

[michele0209]

Hello,

I am 30 year old female who has been sick for the past year and a half with very debilitating symptoms and I don't know where to turn next. This originally started when I was 16 (had a few very mild flares of symptoms that would eventually go away when I was younger). I live in Chicago and have seen many doctors here as well as spent a week at Mayo Clinic last December.

My most debilitating symptom is muscle fatigue, specifically in my upper arms, stomach, chest and back muscles. Feels like my upper arm muscles are dangling from my shoulders about to rip off when I stand up. When I sit I feel like my stomach is doing crunches. Standing is very difficult as I don't have my core to stabilize me. It is hard to breathe due to muscle fatigue, yet my lungs and heart have been checked out and are fine. The muscle fatigue eventually causes cramping pain and muscle twitches. I also have stiff leg muscles and some joint pain, but this is tolerable. I am not tired; in fact, I'm energetic...just my muscles are tired. I could do a push up if I wanted to; my muscles just fatigue easily. I have had MRIs of my brain and spinal chord repeatedly, multiple regular EMGs, a single fiber EMG (to test for myasthenia gravis), the autoimmune bloodwork for lupus, myositis, RA, etc with all the antibodies run probably 6 times in the past year, blood testing for thyroid, X rays of my joints, a bone scan, and MRIs of some joints, test for pompe disease, and some preliminary bloodwork for mitochondrial disease. I also have been on high doses of prednisone (60 mg), plaquenil, methotrexate, many anti inflammatory drugs, muscle relaxers and low dose naltrexone with no relief. The doctors have come up with the following:

mild POTS with small fiber neuropathy

tendonitis/bursitis in both shoulders

mild degenerative hip arthritis with a labral tear

possible sacroiliitis

Fibromyalgia (?)

I am repeating the autonomic testing tomorrow because my doctor seems to think this could be responsible for my symptoms. I think my autonomic testing is off because of my muscle fatigue, NOT vice versa. But what can be causing the muscle fatigue? I don't know...does anyone have similar symptoms or ideas of what this could be?

 

Thank you!

 

 

[Katybug]

My only suggestion is an evaluation for Ehlers Danlos Syndrome. Although you don't exactly describe a typical set of symptoms,  it can have some strange presentations because it can affect any and all connective tissue which is 85% of the body. Two of my most debilitating EDS symptoms I have are chronic tendonitis and bursitis. I just saw a new rheumy last week and he said some of his EDS patients have "joint" pain just as severe as his RA patients specifically because of the tendonitis at the tendon attachments and the bursitis in the joints.

Edited July 1, 2016 by Katybug

[corina]

Hi Michele, welcome to DINET! I hope your testing went well!

[Natops]

Did Mayo Clinic (or any other doctor) run the full Paraneoplastic Panel on you?

http://www.mayomedicallaboratories.com/test-catalog/Overview/83380

[michele0209]

Yes they did and it was normal. I was thinking mitochondrial disease but my only system affected is my muscles. Plus, I have "flares" of this. There are years when I am completely normal...that's why something autoimmune crosses my mind. So I don't know? My doc said he wouldn't recommend a muscle biopsy because he's made the mistake of doing some on patients like me and they are always normal. 

[Catlady777]

Wondering if you have found an answer, your situation sounds similar to mine 💜

[Macho319]

@michele0209 did you ever find out what was causing this? I experience fatigue in my arms and legs as well.