muscle pain flare ups/Raynaud's new diagnosis
 

Hi to Everyone

I feel I have an autoimmune disease. Trying to figure out which one is a challenge. Just recently diagnosed with Raynaud's disease, which is a blood vessel issue. The flare strikes when I am exposed to cold. It is annoying but not disabling. The fear is it's secondary to an autoimmune disease, which is common. I have had severe muscle aches/fatigue as well as eye socket pain every 2 to 3 weeks since August. I have many labs done. ANA was positive but no other symptoms of Lupus. So the Rheumy could not diagnose me with that.
I fear Scleroderma but the only symptom I have of that is the Raynaud's as of now. I need some help! I am in severe pain right now. The flare up started yesterday. I am taking aspirin and warm Epsom salt baths. I see a new Rheumatologist Jan. 28th. I know the diagnosis process may be long. Why can't these doctors look at the pain symptoms and labs and make an accurate diagnosis? Why is autoimmune so difficult to treat? Anyone out there with similar symptoms or any advice would be appreciated. Thank you!!

Kristy

Welcome kkimmons21. :Wave-Hello:

I hope you get a diagnosis soon. Scleroderma is nothing to fool with although there are different kinds of it.

Take a look at:
 

http://neuromuscular.wustl.edu/antib...x.html#vascgen


See if any of the common symptom profiles seem familiar, and check the antibody profiles and testing protocols to see what you have had/not had and what the results typically show.

Hi Kristy

I have 25 years experience of having an auto immune condition with no antibodies. I was diagnosed with Lupus back in 2001 despite testing negative to everything. In 2012, things suddenly worsened and changed in disease pattern with only low C3 C4 to add weight to my case. I was referred to a world famous professor in Lupus where she confirmed that she strongly suspected auto immune disease which is defined as UCTD. The treatment is the same but there is no rule book - it does exactly as it pleases and overlaps many AUto immune conditions. Some people just don't fit into boxes. For me, getting effective treatment is the most important thing.

Take care. Clare

Hi kkimmons21

It might help if you saw a specialist clinical immunologist about this.

My understanding is that Raynaud's phenomenon is a common sign of scleroderma.

A clinical immunologist should be able to check this out with you (for example, testing for blood levels of antitopoisomerase antibodies, and anticentromere antibodies) and, if indicated, discuss treatment options with you.