Help!! I'm so confused!!!
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| Thu, 07-28-2005 - 10:02pm |
My rhuematologist says he thinks I have RA. I had A positive ANA 1/320 but a negative RF. Also sed rate was high. He said he is running a bunch of tests to rule out lupus - I have had problems for years - latest being swollen wrists. I have had problems from bad feet to being hospitalized 3 years ago with SEVERE leg cramps - was on prednisone a year gained a lot of weight - slowly losing. I had my left knee replaced last Oct. and my right is bad - then this!!!! I'm sick of trying to figure out whats wrong-feeling like crud - and having no one to talk to who understands!!! I know many of you will I need new friends to talk to. Help!! Got any advise? I cant work and I have a husband and 2 sons ( 10 and 19 ) and am sick of not being able to do things and them not understanding..and feeling like a burden.
Please send advise. Anyone know about methtrexate??? He may start me on that.
Thanks for any advise.
Julie

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Hiya Julie!!
Molly
Well -- I guess I better not tell the Dr. about my pocket hoppers (Molly, Holly, and Vicki) and all the cyber booze and junk food especially the donkey cart!!!! LOL - I do believe he may just lock me in the loony bin!!!!! Sometimes I belong there there anyhow!
Thanks pocket hoppers - you all made me laugh - its good to have the support! I'll find BIG pockets!
Julie
Hi Julie,
You are welcome! There is a section on the board called Pocket Hoppers and you can post your appointment there. You will need lots of pockets! Molly brings her donkey cart full of goodies and margaritas ;o). Seriously, just knowing that you have someone who is there with you in spirit really does help you get through some of these things.
You mentioned chronic tendonitis and I can't help but think Fibromyaglia (FM or FMS). FM is a syndrome and does not do any damage, but it involves soft tissue and muscle pain. It is usually diagnosed (dx) by the rheumatologist (rheumy) touching you in the 18 trigger points. If it hurts in 11 of them, you have it. There is no medication to make it go away, but there are meds to help with the symptoms. You need a doctor that believes in it. Most do, but there are some that do not. When we moved and I had to find a new doctor, my first question was, "DO you believe in FM?" When he said, "OF course I do" I knew he was a keeper. Fibromyaglia is in the list of autoimmune diseases and frequently accompanies RA, Lupus, etc. My daughter has FM and does not have RA, well at least, not yet. :o( My mother had FM too, but it was never dx. She felt exactly like I do now. I am running off at the mouth here, sorry. Please mention FM to your doctor on Tuesday and make a list of your symptoms to take with you.
Fibromyaglia symptoms are: difficulty remembering things, sleep problems (keep waking up all night), lethargic, tendonitis, bursitis, a rash on your face or arms (bumpy one), headache at the base of your skull, jaw hurts (TMJ sometimes), neck, wrists, shoulder blades, tail bone, hips, knees, ankles and bottom of the feet may hurt. It can feel like you have the flu. It comes and goes and stress can cause it to flare worse.
Not having Lupus is a good thing, but something is causing you this pain. FM does not cause a knee replacement. Osteoarthritis (OA) can and also Rheumatoid Arthritis (RA). If you have RA you need to be on RA meds to stop or slow down the progression of the disease. I have had RA for 6 years. My rheumy treated me aggressively and has kept joint damage away. You and your rheumy need to work together to get a dx and you will feel better once you get on some meds.
I am here, if you need some support. I can honestly say I have been blessed with RA. Honest! I have a few friendships that I could not live without! I have learned how to take care of myself and to listen when my body yells "NO". The board is a godsend, BUT I hate this disease and some days just cry, because I want to have my old life back.
Let me know how your appointment goes on Tuesday.
Hugs,
Vicki
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