So over the past few years Ive been really sick and the drs cant figure it out. I have had problems with my joints for awhile because i was a competitive swimmer but then I got pericarditis, a year later I got an acute case of glomerulonepritis. The past year I have been having a really hard time with my joints, last year it was both hips and i had to get steroid injections and now its my feet. Whenever I try running they hurt so bad and swell up. I go through like flare ups, I got stung by a bee in my foot and both my knees swelled up and I couldnt walk it was so painful. Then a couple weeks ago I got sick, really sick and my feet starting hurting so bad in the morning I couldnt walk on them and I developed little nodules on my fingers. My eyesight has also gotten way worse and starting to make me worry it seems to be deteriorating quickly. I am only 23 but my body feels like its at least 60 and I am always tired. Ive had tests to see if I have RA or another autoimmune but my blood work came back relatively normal. Any one have any ideas on wha could be going on, would appreciate any feedback!
Hi and welcome. I'm only a patient, of course, so please read this in that light. Have you tried the lupus board, starting with the "sticky posts"? Your mentioning pericarditis and nephritis bring that to my (totally untrained) mind, but also the concept of "flares". Also your bee sting reaction (wild reactions to insect stings are mentioned in the lupus "alternative criteria" sticky). Also swelling post-exercise. I'm not saying I think you have lupus; that's ONLY for a specialist to know. But because lupus has so many faces and symptoms, an active board, library books, and multiple "look-alike close cousins", it's a good place (meaning a broad subject) to revisit.
I know you said you had bloodwork done. I had LOTS done over years. What I didn't know then was... well, a whole lot! For example, decent results mean nothing if the "right" tests weren't done, or the tests weren't well-timed (riming can matter in conditions that flare/recede.) The lab can matter, too: some are far better with autoimmune tests, which are difficult to perform.
Of course the doctor counts hugely. I saw suburban specialists (rheumatologists, urologists, gastroenterologists), then finally took myself to a rheumatologist affiliated with a teaching hospital, and he ran circles around the others. Given your kidney hit, in your shoes, I'd aim high, I'd want a second opinion. Minimally, I'd want checkups, to be followed ongoing.
But above all, I think symptoms should count the most, and you sure srtike me as totally clear and logical. So I hope you persist in reading, questioning, and following up. Please touch base again when you can, OK? With my best wishes, sincerely, Vee
P.S. Should you have more tests run (and I hope you do), you might ask about those steroid shots, etc. i.e., you probably don't want to take or have anything done that could affect lab results. With more good wishes, Vee
I'm so sorry you've been so ill! I'm only a fellow patient and not a DR but if I were you, I would go to a good internist for a second opinion and lots more blood tests. Perhaps a nephrologist as well.
At 23, you certainly should not be feeling like this. Write it ALL down and take it with you when you see a doctor next. Question them about blood tests being the right ones etc.
Other than finding the right doctor or hospital to get better answers, I feel you should rest as much as possible and drink plenty of water or Gatorade.
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Joint pain, fatigue, nephritis, pericarditis and flares in symptoms are very consistent with possible lupus. You say your labs were "relatively" normal. That sounds like a phrase someone would use to mean not quite right but I can't explain them or interpret them. I would highly recommend you get a copy of all lab and tests results you have had since this illness started, and go to a reputable rheumatologist. I would review your results and research any result marked hi or low as to what it might mean. You will have to be your own advocate to get a diagnosis. Be the proverbial squeaky wheel, and do not give up until you have an answer. Don't let any Dr dismiss abnormal lab results or your symptoms, as they are meaningful, and you deserve answers and treatment.
Thanks guys, yeah I am super frustrated right now because i started walking (i used to run but my body cant take it anymore) and even just walking my ankles have swelled up and are really painful and now my knees are starting to hurt too. And its like i want to keep up the exercise so i keep walking but then the pain just gets worse. Ive been to the drs so many times i think he thinks im making the pain up. But im not which is the most frustrating thing, its real and its hard to deal with