Fibromyalgia Action UK
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so confused

hi. i have been treated for a connective tissue disorder for past 10 years and prescribed plequnil and steroids. i was then told i had 2 ndry fibro. after a rough 6 months with multiple infrctions i saw the rheumy yesterday.,, he now feels my main diagnosis is fibro and not lupus. he told me to stop the pleqnil but remain on steroids and restart preganalin. i am confused as i did not think steroids help fibro. furthermore he told me to take no more antibiotics despite getting repaeted infections of the sinuses and throat -my voice become s all croacky. are these typical symptoms of fibro ?. i also get raynard symptoms

4 Replies

bless you ,it sounds like you have been passed from pillar to post how awful for you but at least you have now seen rheumy and been diagnosed so now i tis a case of getting all your meds sorted out you take care nd just take one day at a time love to you diddle xxxx


i still dont understand why i am on steroids-is anyone else ? can i also sk what type of illness fibro is-i was told by the pain clininc that fibro is psychological !!!!! and as far as i am aware it is not a connective tissue disease


Fibro is not a CTD - and it is not psychological - but it is common for people with Lupus to have Fibro as well, and sometimes it can be hard to tell what is causing more problems. I think this must have been what your doctor meant - that you still have Lupus, but actually your Fibro is causing your current symptoms, so extra treatments for Lupus (like Plaquenil) will not help.

Presumably he is keeping you on steroids to keep the SLE under control. It might be worth discussing with your doctors whether there is an alternative if you are getting so many infections.

With Fibro, some people do get a slightly suppressed immune system from being run down and not getting restorative sleep. But steroids will certainly suppress your immune system.

If you have been on lots of antibiotics, it is probably worth considering taking probiotics (check with your doc and/or a pharmacist if you're at all concerned). A lack of probiotics in your body can actually leave you more prone to infections than before.


this may explain why my tongue is so sore, and cracked. does fibro affected the central nervous system


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