Diagnosed with Fibromyalgia and Sjogrens Syndrome

[RockinRuth]

Went to the Rhematologist for the first time today and I am DX'd with Fibro and SS.  I don't understand and know much about these disease and need help.  Scared to take meds she gave me.  

[babyde]

Also a medication called provigil helps with the fatigue. and Green tea extract helps build your immune system.

[babyde]

Don't be afaird to try the meds the doctors give you. I tried all those too, they didn't work or I couldn't handle the side effects. But all my doctors first told me to be patient because it would take a while to find the right combination of meds that would work. It has taken 1 year and 3 months for me and now I'm finally getting relief. Even my lab work has all returned back to negative.  Most of us with any autoimmune disease have alot of pain. Take your pain meds when your in pain. I use the scale that any hospital uses; scale 0-10, ten be the worst pain ever, and I'll supplement with hydrcodone when it gets to 7 or 8. But I wear a transdermal pain patch called Fentenyl that I wear and change every 3 days. I started at 25mcg in December last year and now at 100mcg. But they started the 100 at the same time they started the Cellcept last month. wheather it's one or the other or the combination of both, things are finally looking good for me. Less pain, less swelling, less joint stiffness and now my labs are all back to normal. My knee joints got so bad I have been walking with 2 canes on each side, but my doctor gave me the Synvics One injections on both knees and now I barley only use 1 cane to walk. Do you have dry mouth, eyes nose etc. There are products that can be used like Biotine toothpaste and mouth wash. Restasis for your eyes. I use Refreash Gel. I get this over the counter for about $8.00 a bottle. Look for a Sjogrens support group in your area and attend the meetings. I found one near my city through that website I told you about. We really all share alot of information when we meet every 3 months.
I go to a pain management doctor monthly so he manages my pain meds. I'm not allowed to get pain medication from any other doctor. I hope some of this info will help.

[RockinRuth]

Thanks for the website I checked it out and there is alot of information.  I have been given several differant meds but afraid to take any.  Oxycodene, Gabapentin, Amitriptyline, Hydroxycholroroquine.  I do take a multi-vitamin for anemia.

Yes the ANA came back positive Pattern: Nucleolar Titers >1:640 SED 13, SS-A 0.4 and SS-B >8.0H AI.  Lip biopsy came back positive for Sjogrens.

[babyde]

There is a website from the Sjogrens foundation that is very helpful. Go to www.sjogrensworld.org I learned alot from this website. It also contains forums. Did your docs do any lab work such as ANA or SSA or SSB blood test? What meds did she give you? I have SS,Lupus and Fibo, RA and I have gone through the gaunlet of meds and nothing has worked except pain medication. Right now my doc is tring Cellcept. The jury is still out. But I have been on steroids, Plaquenil, Arava, Methotrexate and now Cellcept.