no diagnosis yet

iVillage Member
Registered: 09-10-2013
no diagnosis yet
Tue, 09-10-2013 - 4:09pm

Hi, I am a 55 year old female who worked as a hazardous waste worker in the 1990's.  Shortly after I left that job I got the "flu" and was in bed for 22 hours a day for 3 weeks.  I finally got over that then I started waking up feeling like I had been run over by a truck. finally diagnosed with fibromyalgia 15 years ago.  

No real diagnosis of Sjogren's but I have dry eyes (lower punctal plugs), dry ears, dry mouth and raynauds.  My son has psoriasis and so did my mom and dad.  My sister has vitilago and I am starting to get white patches instead of freckling.  When I go out in the sun my skin turns red really fast and I get a rash, even under my clothes.

My sed rate was normal, my rf was within normal limits and my ccp came back at 16, still normal, but elevated.

My doctor still has not sent me to see a rheumatologist yet.  My right hip grinds when I walk and my right knee has been going out of joint at least once a week and I have pain behind the kneecap all the time.  My left hip is also painful and my left knee only has 20% meniscus after 2 knee surgeries.

The bones in my spine ache.  I didn't think that bones hurt, but mine does.  My hands are so sore and weak that I have trouble holding my coffee cup.  Sometimes I just want to cry.  

I am so happy to have found a place that I can vent.  My sons just don't understand.  

I'm not even sure what is wrong with me, but it is definitely more than just fibromyalgia.  Any hints or tips?

Community Leader
Registered: 10-22-2001
Fri, 09-13-2013 - 8:32pm


I am fifty-five and have RA and OA...Finally seeing a Rheumy in November.

I have Psoriasis and Ezcema...

Found a Support Group both here and also where I live.

Also have seen a physiotherapist and have an individual exercise plan...

Just hang in there and hold on...

Keep insisting for a referal to see a Rheumatologist.

I have been waiting a long time myself, far too long.

iVillage Member
Registered: 08-13-2012
Wed, 09-11-2013 - 9:41am

Hi. I'm so sorry to hear you are in so much pain. I deal with it myself (Fibromyalgia) so I understand where you are coming from. Does your doc give you any reason why he hasn't suggest rheumatologist yet?

Just curious-have you tried chiropractic care yet? I have had a few appointments and I feel like if nothing else I understand more why I have some pain (back, hips, legs). I have been given a lot of stretches and exercises to do and I am beginning to feel some relief so I think it is working.