I can totally relate to your story, as I am going through a very similar situation. I am a retired RN and just now trying to put all of the pieces together. I have a positive ANA and my rheumatologist was treating me as though I had an autoimmune disorder. I was negative for Lupus, Sjogren’s, RA. I am hypermobile and my neck, spine, and shoulders were starting to get worse. I was diagnosed with osteoporosis at a young age and now I’m starting to have heart issues.
I started doing my own research. My cardiologist and I agree I have hEhler’s-Danlos Syndrome (a genetic disorder). My PCP and rheumatologist finally are starting to realize that this is my problem and I’m scheduled for an appointment with a geneticist in January to test for the subtypes (my 3 children all have issues, as well).
I was an RN for 39 years and now I can’t even cook a meal without feeling exhausted.
Ehlers-Danlos Syndrome is a “rare”, “not-so-rare” condition. Many healthcare professionals are uneducated on this disorder and we are often dismissed as patients. I have had red-flags since birth and I’m only now learning more about this condition.
I feel your pain and frustration. You really need to educate yourself and advocate for yourself. After all of these years, mine are finally listening to me! Don’t give up! Good luck and I pray you find out what is going on with you.