All I want is to know what's wrong, I know something is wrong and I've known it for over a year now. Last year in late April I had a terrible 7 day time period where I was in unbelievable pain. I've had neck pain and migraines since I was very young (10-13 years old) but this was another level pain. I don't know if it was related to what's going on now, I just feel like it is. Deep down. It was pain in a different area and probably not usually affected by Lupus--my neck and my back mostly.
Last year I went to my primary doctor, who was to say the least unconcerned. It was so bad, I went to the ER. They did tests, including a lumbar puncture. No answers. Their response: Migraine. No. Not a migraine. After 29 years I know a migraine. I tried to go to a chiropractor but got turned away because my medical wouldn't cover xrays. So I went to a walk in clinic to get Xrays then went home because I couldn't think straight. I went back to my primary doctor. Still unconcerned. After 7 days of hardly any sleep at all, the pain was gone as quickly as it came. The day after that, I fell asleep while driving.
That day I saw a neurologist who diagnosed me with fibromyalgia in approximately 5 minutes. No lie. He did a pressure point test (which I read has been mostly ruled out as diagnostic now for fibromyalgia) and that was that.
In February my right lower leg started aching. I went to see my primary doctor. Unconcerned. Told me to lose weight. (Oh-- I've gained 40 pounds in 2.5 years, after staying maintaining the same weight +/- 5 pounds for years.)
And last week, sudden pain in my knees whenever I go to stand up from a spot that is lower that the length of my knees. Which is not good since I have no bed frame and my couch sits low. I have an issue with going to the bathroom literally 4-6 times per night, and by the 3rd time I get up to go it hurts so much to stand that I can't get back to sleep. I've had 3-5 hours of sleep every night since this started.
Again, went to my neurologist. He said I should get a referral to rheumatologist from my primary doctor. The unconcerned primary doctor is now gone so I have the interim doctor. She is almost as unconcerned, especially when I say the word "fibromyalgia", but she decides to run some blood tests to determine whether I'd be referred.
Today the bloodwork is normal for the "Rheumatoid Factor" but positive for ANA. CRP is 5.5 and Sedimentation Rate is 22. Just above normal. And so they're going to do the dsDNA and ENA test at Mayo and I'll know what those results are in 1 week.
I don't want to have anything but in my heart I know I do. Could it be lupus? I guess so. I'm not getting worked up about the other possibilities because I don't have symptoms of what appear to be the most devastating causes of a positive ANA test. And I hope I don't but I have something and I really hope that this doctor will take it seriously. I don't know what to do to convey to these doctors how much pain I'm in.
My main concern is reading the doctor's notes in the blood test results file. She says Vitamin D3 is low and to pick up an over the counter supplement (I've been on 10,000 IUI since a 9 result, and the result today was 21 which is better-- should be 30-100). She says "CRP and sedimentation are just teeny bit elevated... her ANA was psoitive. This can mean many different things or nothing at all, but it does trigger the lab to automatically run some additional tests".
Nothing at all? Does anyone listen??? Or is that because of the "fibromyalgia" label? I am so tired of all of this, of being tired, of feeling like nobody takes me seriously. I can suffer in silence or be a drama queen but in the end I'm still in pain, I'm still tired, and none of these people care to find out what's really going on or give me just a little benefit of the doubt. I know this isn't normal. I know there's something wrong. Like I said at the beginning of this.
I don't want it to be Lupus but I need to know, and from what I've read the tests that were triggered sometimes don't provide any more answers. That it's up to the doctor to take the positive test and the person's symptoms to give a diagnosis. So reading what she put, that it could mean "nothing at all", really makes me worry. I hope someone understands what I'm saying. I wish I knew the right way to advocate for myself. I try so hard but I'm so tired.
Sorry for the length.