[dumplie]

Hi everyone,

It has been a while since I posted on here but I am in real need of advice.

Yesterday I saw a new rheumatologist for the first time ever and thought the appointment was going well. Lots of questions asked and a lot of tests carried out.

At the end of the appointment he told me he had good news and bad news. The good news was that he could confirm my diagnosis of SLE (wonderful) but the bad news was that he could now also diagnose Sjogrens syndrome and Fibromyalgia.

I was handed information booklets and asked to return in 7 weeks so he could examine my blood results and lip biopsy. To be perfectly honest, I have hit rock bottom emotionally. I am scared of the new conditions but in particular the Fibromyalgia. What can I expect? How can I deal with it?

PLEASE can I ask that if anyone one here has this condition as well as SLE could they please offer me some advice as I really don't know where to turn.

Thank you all

Janine

 

[raggedyann1]

Janine,

Did the Rheumatologist prescribe any medications for you to start on? Fibromyalgia can be difficult to control with medication for some people and others not. There is also some correlation to it quieting down when the Lupus/Sjogrens is brought under control. Not total by any means but it does get easier to manage.

I have Lupus overlap Scleroderma, RA, Fibromyalgia and Dysautonomia plus some things that go with the listed conditions. For my Fibromyalgia I take Neurontin/Gabapentin, Pamelor/Nortryptaline and Soma/Carisoprodol. That combination plus regular stretching exercises helps keep the pain manageable. I also have strong opiate medications for the Lupus/Scleroderma/RA pain that help some with my Fibro pain.

I am sorry to hear you have such a long wait for your follow-up appointment.

Take care,
Karen

 

[buffster]

Hi Dumplie

I know just how you feel as I have possible LSE Lupus, definate Sjogrens and Fibromyalgia and probable Autoimmune Hepititis. Emothionally I feel terrible as everyday is painful and I don't know what to do about getting a job as some days are so bad I can hardly move my left leg. I have a new dr as we recently moved in with my mum as we couldn't afford to stay in our house with me not working, and he isn't interested at all :-( I am going to try and see a different dr next wek and the cab for advice.

As regards the FM swimming is meant to be good (I have niether the money nor energy for that right now) and hot baths and physiotherapy. There are prescription pain killers too. Your rhuematologist should be able to help you too. Have you got a specialist nurse as I found mine, before we moved, invaluable.

Good luck