Hi everyone...I just joined. I haven't been diagnosed yet, and wonder if it was as frustrating for you when you first had symptoms. I know my body, and there have been way too many things that I've never ever felt before that have happened over the last few months...especially the last month or so.
It started with the last joint in my right pinkie finger...then the same joint on the other hand. This was back in probably May. I thought it was totallly bizzare, and went to the dr. He said I had OA. Well, those joints have stayed a consistent swollen and red with a big lump where it looks deformed at side view...pretty much all the time 23/7. I'm a massage therapist and thought maybe I was just working too much...but realized that it would be ridiculous that joints that I used more often (like thumbs) were okay.
I ended up having to modify my work to not doing deep tissue at the establishment I work at..only with clients in my private practice. I had to bring in a dr.'s note to be excused with this work modification. I did this early July.
Anyway, by Sept...suddenly both my feet were achy. It was soooo weird. I couldn't figure it out. They would ache when I was lying in bed. They would ache when I woke up and hadn't been moving all night long. I tried to think of it being because of a long hike (I'm fairly active outdoors), but that didn't make sense at all. And...here I was planning to hike half dome in another week!! I ended up canceling the trip because of my stupid feet. And...you know...I was more fatigued than usual, not sleeping as well, and just generally having less energy and motivation.
I don't remember why, but I suddenly had the thought that maybe what I was feeling in my feet might be related to my pinkies/hands (which I began noticing some other joints a little tender, but only a little...nothing like those pinkie joints). I began doing research online, and started to freak a little. Now I was really not feeling as well and fatigued but didn't know how much that had to do with getting behind on sleep and being so research focused. (and I'm not going to even mention how confused I am with what might be some hormonal imbalance junk that could be going on right now too...geesh.)
Then suddenly out of the blue as my feet were feeling better, about a month-ish ago, I woke in bed with a sore right hip ...and within days a sore left jaw!!!! Yep, back to the dr. I've had blood work. RF was neg, the one that measures inflammation was in okay limits...and the ANA was positive, but a low positive. That result really freaked me. ...more research!! The hip and jaw fluctuated...kinda coming and going, or simply varying in intensity...but always more noticable or bothersome at rest. Dr. thought we ought to check to be sure one of my supplements (I take alot of nat. supps cuz I try to be healthy) wasn't causing the joint stuff. So, I went off of it over 3 wks ago. I was hopeful that's what the deal was. The jaw went away, and the hip was just kinda here and there, not bad....but still there. Then this last Monday...well during the night I woke with my hip being really bad...I mean pretty darn bad. I had a hard time walking all day. It got better as the day went on, but there were even a couple times during the day that I almost thought my hip might 'give out'. I have never felt anything close to this in my entire life. Coincidentally I had a massage that day (a fellow mt and I traded) and she told me that she felt heat from that right hip area!!! It's been four days, and it's been better every day...but I'm tell'n ya, it was a pretty significant thing that just happened. It was a good thing that first day was not a work day at the resort cuz I don't think I could have even walked from the parking lot in and out, let alone move quick enough between appts. It was difficult to do any stairs for days.
It's much better now, but there. Jaw's ok. Feet are okay. Pinkies haven't changed in what seems forever. I think they're permanently as is. I'm way fatigued again, yet not sleeping well at all....wake up at least once if not twice each night lately. This last Monday/flare up really hit me emotionally. I live alone and have been single forever. What will I do if this comes back and I can't walk or who knows what. Who's gonna be there for me. Sorry to be sounding sorry for myself...thats truly not it...it's just this new realization that I may not be able to always take care of myself.
Well, the main reason for posting this, is to ask if this sounds as much like RA to you guys as it does to me....and was diagnosing a totally tricky thing for you too. I am trying to get an appt. with a rheumy...just got the huge info packet in the mail I have to complete first.
Oh, yeah I had xrays done (before the big hip thing), but just of my hands and wrists. Dr. says they came out okay. Don't you think we ought to xray the hip too? With it being better now, would it still show something...or do I wait until another flare up?
btw, we're testing my hormone levels and thyroid...but I doubt VERY much that any of that caused my hip to barely work!
Thanks so much for reading my way long post.
I'm grateful for you all.
HI HSC, welcome to AI although I am sorry you need to be here! I think it is possible you have RA, even with negative blood tests etc you can still have what we call sero-negative RA, sero-positive RA usually means a more severe outcome etc. You also need to know that there are many conditions that can mimic this kind of disease, the main thing is to see a rheumatologist to get assessed etc. The hands and feet are usually the joints that will show erosions first so that is why they have x-rayed them, an x-ray of your hip may show something or it may not, the symptoms and signs will have to meet a certain criteria for you to be diagnosed and you can find that here on the board under the post "Rheumatoid Arthritis defined" by Buckeye on 20th Oct, hope this helps a little, keep a journal, these are invaluable. I have read your other post, most RD's and patients I think from what I have read and asked my own RD's over the years seem to believe there is no food connection, but each to his own, if you do have RA, try everything to work out what is effective for you. Best of luck, you will get lots of advice here, also remember everyone is different, I don't think there would be two people on here who have exactly the same problems, also the disease can burn out also so keep your fingers crossed. Regards Janie.