Palindromic rheumatism

fairydust81

Hi everyone,

I haven't been around for a while. There has been a lot of confusion with my diagnosis but finally the rheumy has diagnosed palindromic rheumatism. I am seronegative however have a low positive CCP, all other bloods came back normal.

I get the typical flares of joint swelling and pain but the other thing I have is what the rheumy calls an erythmatous (sp!) rash which covers my arms, face and has started on my abdomen and legs too, that, the joint pain and the endometriosis are driving me crazy.

So between the rheumy, my gynae and my GP I have a new treatment plan:

I can't have steroids anymore because I had a hysterectomy last year (at 27yrs old) and everyone feels this may cause more damage than it's worth, I can't have NSAIDs as I've taken so many over the years that I get terrible indigestion.

So I'm now taking slow release tramadol which eases the pain a little.
After an eye-test tomorrow I'll be starting on a DMARD - hydroxyquinine and I'm hoping and praying this helps me.

I need my hands and wrists for my job and at the moment I'm really struggling. I am trying my best to keep things quiet and carry on as normal but it's getting mre and more difficult to hide how I'm feeling.

I am now 29 yrs old and almost was in tears with my rheumy the other day when I told him I feel old, I feel like a young lady trapped in an older body and I'm totally fed up and depressed right now.

Considering getting counselling but I doubt it will help, if I could get rid of both the PR and the endometriosis I'd be so much happier.

skezier

Hi Fairydust,

Nice to see you again!

It rough flower and wrong when your young. I have pa no and its after my arms big time but i am older and well.... I have had oa since my teens so I do know what you mean!

Look you will have drugs that hopefully control it and I really hope they will do the job for you.

With your work ids there anything they can do to make it easier for you? I know how hard it can be to struggle quietly but posting here was such a good idea cus though none of us can really help practically this lot really do understand.

Sending you a ((( ))) and a bucket of hopes. hang in there flower. Cris x

dreamdaisy

You poor thing. I have no idea what to say or any suggestions whatosever. There is someone else on the forums who sounds very similar to you, I hope she spots your post as she will have a better idea of the impact of all of this on you. I hope the hydroxy does something, I understand that it works well for some, I don't think that much can be done for endometriosis (I have a friend who has that, I have witnessed the agony at first hand), you are certainly under a very heavy load. All I can offer is support: I am thinking of you, please keep in touch and let us know if the hydroxy does anything. I wish you well. DD

clairc

Hi Fairydust!

I'm in a similar position as you at the moment. I've been ill for 20 years but have only just been diagnosed with Palindromic rheumatism. I also have gynae problems. I have a bicornuate uterus with a closed off horn which causes excrutating pain when I'm on my period. I had what they though was Pelvic Inflammatory disease earlier this year so they did a laparoscopy and found I had lots of adhesions and small patches of edometriosis. I'm booked to have a hysterectomy on 13th December.

I don't have a rash with my arthritis but I do get severe joint pain without swelling. For years they said I had ME and blamed every symptom on that but a couple of months ago I finally found a rheumy who diagnosed me with PR. Unfortunately the rheumy is 3 hours away from where I live so now I've got to try and find a local rheumy who will agree with the diagnosis and put me on a trial of hydroxychloroquine.

I know how tough it is, I'm 35 and have 3 children under 10 but thankfully I get help from social services in the way of direct payments so I employ a team of people to help me do all the every day stuff that I struggle with.

I hope things start to improve for you soon. It can get you down being in pain all the time you just have to try twice as hard to find the positives and find the things that you can do.

c4thyg

Fairydust,

Again, you are not alone. I can relate to some of what you have said. I have PsA, endo, psoriasis, and ITP (blood doesn't clot). So like you I have medications restricted such as no anti inflammatories as they thin the blood. Also I'm 33 and got PsA at 29. I've had endo since I was 14 but didn't know what it was then. It is very hard to feel old before your time and I didn't cope well with it in the beginning. I have had 2 rounds of counselling though and it was a god send. Please don't rule it out as it can be a very powerful way to deal with these things. Granted it doesn't cure anything but it can help you to help yourself easier. I've learnt to focus on the good days and what I do have. I had the most difficult year of my life last year and if anyone told me then how happy I'd be now I would never have believed them. A lot of that support came from this forum so keep posting, especially when you need help on the harder days.

I just wanted to mention as well that I have managed to get the endo under control this year for the first time by having the mirina coil fitted. I went in to my gyny begging for a hysterectomy in Feb but they won't operate on me because I could bleed to death on the table. I agreed to try the coil and it has made such a difference that I can't believe I wasn't offered it before. You are probably aware of it but I thought I should say as I hadn't been told about it and suffered for more than half my life with endo.

I hope you can get the help that you need and keep posting. There is so much help available here from other members and of course the helpteam/helpline if you need more specialist advice. xx

salamander

hi fairydust, yes, it is a lot to deal with. I have sero negative IA and that is bad enough on its own. I have just started hydroxy, too early to tell if it will help. I hope it does for you.
Just remember, you are not alone.
xx

frogmorton

Hi Fairydust

Good to see you again.

Sorry you are feeling so shift at the moment

I am on hydroxy with very few problems at all. I hope that it helps you too. Don't forget to have your eyes tested before you start on it.

I hope you don't feel alone with us all here to talk to.

Please take care

Love
Toni xx