Symmetrical persistent joint pain

[kaiaua48]

My wife came down with ME/CFS just over two years ago. Her Rheumatologist has just told her that will be her diagnosis, he is getting a second opinion to be sure. She certainly has the symptoms, and has very few signs of anything wrong in her blood tests. The thing is he has been treating her as UCTD for the last two years, thinking she has early stage lupus. Her illness came on with pain in both knees, like glass smashing, which then moved to her elbows, then to her fingers and feet. It never changes, she has joint pain that is persistent , and quite bad from her elbows to her fingers, and from her knees to her toes. She has Raynauds, and quite bad peripheral neuropathy, with wrinkled red/blue fingertips, esp. in cold weather etc. Bound feet, tight scalp, numbness, tingling. She can't control her temperature, and her fatigue is awful. She doesn't have OI though, and she doesn't have any muscle pains. Her pain is in her joints only, is aggravated by doing something, and it is constant. Her knuckles turn red, but nothing swells up, which is why they don't think it is RA, as well as the negative bloods.

My question is whether this happens with ME/CFS? As the Rheumatologist, who is one of the top ones in NZ, has been treating her as having a connective tissue disease for the last two years. Using strong immunosuppresives, anti-malarial drugs, prednisone and alike. So he must have been fairly certain it was in the lupus/scleroderma autoimmune camp, even without the blood work to back it up. After her non-responsiveness to the meds he has finally settled on ME/CFS, but we're still unsure what's really going on.

thanks.

 

[Issie]

I found I hurt much worse with grains, foods in the nightshade family and foods with lectin. Has she tried staying off those things?

 

[kaiaua48]

I found I hurt much worse with grains, foods in the nightshade family and foods with lectin. Has she tried staying off those things?

thanks, she has experimented with diet, but we might try other things soon too.

 

[Issie]

Did she get DX with Ehlers Danlos? There are several different kinds. Some are genetic and one is not. It seems to go along with autonomic nervous system dysfunction and Mast cell Activation syndrome. It can for sure cause pain and is a connective tissue disorder but I feel may be closely connected to mast cell issues.

 

[Issie]

Someone posted a video on a current blog and the guy said they had found that IGG from a FMS person would give rats symptoms. But IGG from a well person didnt. He feels there is an autoimmune factor here. He has done the experiment with FMS, but feels this will be true on ME/CFS too.