01/06/2020

The Rheuma Room

By Rheumamill

Thousands flock to The Rheuma Mill each month so I’ve created this NEW space for you! This is YOUR room!

Journaling my experiences with RA has been THE most therapeutic thing for me. I don’t really have anyone to talk to about his disease and chat rooms are limiting but writing is limitless. This page is open and waiting for you to pour out all your thoughts and feelings. You’ll be surprised at how good it will make you feel in the end! GO!

Chelsea

I too, am a young person recently diagnosed with RA. Starting at about age 15, I had widespread pain in my joints and muscles. My PCP said it was parvovirus(people get it too, not just dogs!) and would go away in a few weeks. It never did and I ended up being referred to rheumatology. I was diagnosed with fibromyalgia because I fit the definition of basically having something but nothing identifiable. I’ve been treated for that ever since. I’ve seen all kinds of doctors over the past 15 years (I’m 30 now). OBGYN, neurologist, neurosurgeon, rheumatology, and switched PCPs. Everyone ran more and more tests and added more medicines. The only thing that ever helped was anti anxiety and pain meds on a regular basis. Then, a few months ago, my rheumatologist retired. The first day I saw the new one, he diagnosed me with seronegative RA. My mom has RA so even though it wasn’t a total surprise, it was quite frustrating to have been with the right type of physician the entire time and being misdiagnosed. My new dr said it was RA the whole time and I should’ve been being treated and the progression could have been avoided. It’s now all in my neck and hands and it wasn’t to start with . I started Plaquenil and have had some fun side effects like vomiting and severe night sweats and hot flashes. I am hoping that with time, I will see some improvements but none yet. Anyone else have similar experiences?

If you prefer to journal your experience in an actual journal, you can purchase one from The Rheuma Mall. All profits are donated to Juvenile Arthritis Research.

Marci

Good to know I am not the only one and that there may be light at the end of the tunnel. I am going on almost a two year diagnosis. It all started with my finger blowing up, then I had a disc herniation at C5/C6 in my cervical spine. Ended up having surgery and they were hoping that was the culprit of many of my symptoms….nope. Took away my excruciating nerve pain and spinal cord compression, but I was left with a host of other issues. The fatigue is crazy, joints ache all of the time, major soft tissue swelling. There are days I can barely walk. No one understand it unless you live it. Just had a MRI and it shows arthritis. Talking to the rheumatologist this week. All signs point to RA, but bloodwork comes back good. Ugh. Just want relief. Glad I found your post and joined your email.