I usually avoid forums because I have found that strangers are mean on the internet, but I am so frustrated and at the end up my rope I just don’t know where else to turn.
I’ll try to make this as short as possible.
– 29 years old. Married. No children, no pregnancies ever.
– Joint pain started about a year and a half ago. Started in my hips and fingers, then kind of hopped about. Tingling hands, wrists, fingers, feet. Painful shoulders and elbows. Also developed Reynaud’s. Everything seems to get worse with stress.
I thought it was because of my 1.5 hour (each way) commute to work, but it didn’t go away after I stopped commuting so I went to my GP.
– GP did some blood tests, assures me no lupus, no leukemia, etc. Found positive ANA, sent me to rheumatologist, at which point I immediately found a new GP as well because he messed up my test results and clearly did not care about what was going on with me.
– First rheum diagnosed fibro on first visit, sent me to a physical therapist who did a very awkward session and then told me that fibro is not real and he could not help me because it’s all in my head. Meanwhile $400 bill from the rheum confirmed that they had lied about being in my network, so can’t go back there.
– New GP is awesome. Does more blood work, finds positive ANA. Tests for Celiac are negative and no allergies except to cow’s milk. Refers to another rheum.
– First visit, doctor takes history which includes cousin with juvenile RA and NO LUPUS ANYWHERE. Orders blood tests and x-rays. Tells me that I “definitely do not have fibro and may develop RA due to family history.”
– Next appointment, same clinic, different doctor. Bloodwork returns, still positive ANA, but no markers for anything else except some borderline anemia. X-rays are normal. everything else seems normal. Doctor tells me that I may be “developing lupus.” He actually says “someone your age with these symptoms I would not diagnose RA.” Prescribes prednisone.
Here is the thing:
– I have NO SYMPTOMS OF LUPUS besides joint pain. No rashes at all, ever. I have never had a rash in my life. No sensitivity to sun. No hair loss.
– My joint pain is mostly symmetrical with the exception of my left knee that lately seems to be much worse than my right, but both have some pain. I have Reynaud’s.
– Talking to my mom while upset after latest appointment, she tells me that both my dad (who is deceased from cancer last April) and his sister (my aunt) had/have RA. I had NO IDEA. I haven’t been keeping her apprised of my health issues over the past year because my dad was very sick with cancer and I didn’t want her to worry about me, too. Apparently that was a huge mistake. I knew my dad had diabetes, but this whole time I thought his arthritis was just osteo like my mom has. I just saw my aunt two weeks ago and she can barely walk, but I had no idea that she has RA, too.
Mom is trying to get me documentation on my dad’s RA diagnoses because I kind of gave the doctor a hard time about lupus (everyone has been telling me for the past year that I definitely do not have lupus and now he goes and picks on lupus because of my AGE?) and I am afraid that he will say that I am just trying to get out of a lupus dx. He hasn’t dx’ed anything yet, prescribed low-dose prednisone and wants me to call him in two weeks to see if it helps.
I know that auto-immune stuff is notoriously tricky and that heredity for RA and other conditions is controversial, but I can’t help feeling that this has to be relevant. I am just so at the end of my rope here and I know I really shouldn’t complain because some people take YEARS to get anyone to take them seriously and have much worse symptoms, but I just want to know what is wrong and I feel like the close family history has got to be relevant.
I don’t really know what I am looking for here. Just support and kind words, I guess. Or suggestions? I don’t know. Does anyone have experience with family histories or a doctor telling them that they are “developing” an autoimmune condition but don’t actually have it yet? I am so confused and I am really exhausted with the merry-g-round of doctors but I really disliked the guy I saw today and don’t particularly want to go back to him. I just feel overwhelmed and I don’t know what to do.