Hello Holly, your stories have been inspiring to me as I 'm sure many others.  I feel your pain because I live with it.  For the past 2 years I have suffered more than my share.  Feet pain, ankle pain, constant inflammation, shoulder pain, wrist pain, & hand pain.  I have already had bilateral carpal tunnel release surgery 2 years ago.  I am a painter & interior decorator.  I have finally gotten the guts to start my own business and paint around my flares, but I have been in a flare since August of 2007, immadiately as I began painting walls & decorating again.  On and off of steroids and NSADS.  So far everything is coming up negative for RA, although I did have 1 positive RF.  My pattern without a doubt is there.  Finally 2 doctors do believe I have RA, but my rheumatologist feels it is fibromyalgia, which I definately know for certain I do not have.

The depression is almost overwhelming at times and the chronic pain is unbearable.  I am finally feeling better somewhat but I know it will not last long.  I do not by any means want RA, but it is the only pattern that fits.  I am fearful that mine will also go undiognosed officially.  I miss my life, exercise, painting, walking, skiing, etc...  I do not want to end up in a wheel chair or miserable for the rest of my life.  I know there is hope as I read it all the time but I guess I am not at that acceptance phase yet.  I guess what I'm asking, how long did you go undiagnosed for and how did you deal with the unknown?

Any help would be greatly appreciated.

Thanks PamelaO.

Hollybgroovin

3/ 3/08 5:13pm

I went a little more than 2 years after the pain started before I got my diagnosis.  I just recently found out the my rheumatologist thinks I have had RA for about 13 years.  Please, please listen to your body.  No one knows your body better than you.  It was so hard for me to get the doctors to listen to me, but if I had given up I might be in a wheelchair now.  I knew without a doubt that something was wrong, that I was sick, regardless of what all the doctors were saying.  Do not give up!  If your rheumatologist is saying "Fibromyalgia" and you believe it is RA, the see another rheumatologist.  RA is an agressive disease, and the longer you go without a diagnosis, the more damage occurs.  I literally went from doctor to doctor to doctor, and when I got my diagnosis of RA I was confident that it was correct, but I had to go through a dignosis or probable MS, chemical imbalance, or psychological disorder.  Don't give up, if RA fits your pattern, then find a doctor who is willing to listen.  Best wishes, and good luck!  Please keep me updated!    Holly

the artist

3/ 3/08 5:50pm

Thanks Holly for your speeds reply.  If you don't mind me asking, what were some of the symptoms you encountered in the beginning?  The more I read, the more I am convinced, but sometimes I woner if I just have an incredicbly low tolerance for pain.  Then agin, I know I can not enduce inflammation or neuropathies. The minute I start feeling better, after a course of steroids & NSAIDS the pain is right back.  It doesn't take much activity to stir the coals.  Driving is sometimes a bother when my shoulders are inflammed & I can not lift as much a a gallon of milk.  I have been a good girl this time but I feel pretty good and am dyinh to do something fun.  But yet I know exactly what will happen next. AAAAHHHH!

Thanks Again, PamelaO

Hollybgroovin

3/ 4/08 10:37pm

Sorry it took me so long to get back to you, but we have been having electricity outages here in oklahoma due to snow and bad weather.  My symptoms started out with pain.  I had pain in fingers, wrists, feet and shoulders first.  I had no inflammation at first though, which made it hard to diagnose and left no trace of rheumatoid arthritis.  It wasn't until I was swollen head to toe (2 years after)  that they even suspected rheumatoid arthritis.  I had an rf factor of 100.  Yes, you may just have a low tolerance to pain, but the pain from RA is sometimes severe (or all the time in my case) and if you know in your heart somethings wrong, then it is.  Keep up the journey for a diagnosis you feel is correct.  I wish you the best of luck.  May I ask what all your symptoms are?  Please keep me updated.  Best wishes!

the artist

3/ 5/08 10:44am

My symptoms began in my hands, severe pain & inflammation.  I was diagnosed w/ acute severe bilateral carpal tunnel, which I had surgery.  My doctor was concerned at the acute, bilateral aspect.  Next in my feet, the pain was so bad I could hardly walk.  The bottom of my feet hurt so bad, the podiatrist said he believed it was plantar fasciitis but his concern was the bilateral aspect.  After that, my amkles, both would become extreemely painful and swollen for no apparent reason other than walking.  Next was my knuckles & wrists.  The joints in between my fingers were painfull & tender.  The joint, which appears like a small pea can sometimes become inflammed & tender.  Then back to my ankles again, & the most recent which effected my shoulders.  If first began with my right upper arm.  Kinda felt like a reaction to a shot.  A few weeks went by and it was in both arms, the pain was so bad I could hardly raise my arms, or carry anything.  My sleep was horrible from the pain.  Just laying beck or putting any pressure on them hurt.  As with the times before, I recieved a steroid shot followed up by medrol dose pack which helped until I stopped.  The pain was back yet again.  When I would raise my arms, it felt like water was running down my arm.  They felt like icy-hot was on them.  Strange, but seems it was from the inflammation putting pressure on my nerves.  Since then, I started back on Mobic 7.5mg & 15mg alternating doses which has finally cleared up this flare.  There is no doubt that was the longest episode yet, around 3 months.  I am taking an easy for now, but I will have to test my limits again and some point.  I can't be a couch potato for the rest of my life.  What do you think so far?, Talk to ya soon, Pam

Sounds like this can really impact life in a young person. I don't really know much about the disease. But it might be useful to have advice that help you make lifestyle choices that relieve the symptoms. You might want to have a look at http://www.rvita.com/conditions/arthritis.html. There is information about natural remedies with comparison of effectiveness.

See if this helps at all at least with understanding better what is available to cope with the condition.