Can anyone relate to this. I have sero negative hughes and was started on Plaquenil (every other day) at my last appt at St T's in October. I noticed it was helping the joint pain a bit by January, however now I am getting pains in my arms and legs as well my joints. The pain in my legs feels like I've done too much exercise but I haven't done any, my legs are also causing me problems at night. I'm also getting pains in my arms it is hard to describe but the pain feel like it is in my veins in my wrist and then travels up my arm.
Could this be Hughes related or is it something else. My GP doesn't understand Sero negative so other than my annual appt at St T's feel very alone. I think people think I am making it up and am struggling as I have 3 young children 2 of them with Autism.
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Hi there, glad to hear that despite your seronegative Hughes status, that you have some sensible medical advise applied to your condition. I think most of us get pains like this form time to time, but please be aware that other conditions such as Sjogrens and also thyroid issues, can hide and often appear with Hughs Syndrome, it is worth thoroughly checking your thyroid out, and sometimes the tests for this are not foolproof. Hope this improves for you. Mary F x
Hello. I can only echo what Mary has said. I too am currently testing seronegative and have struggled to get consistent support so I totally "get" your feeling of perceived making it up. The fact that you're still under St T's should give you some comfort as they would not keep you on their books if they didn't feel there was a reason. Good luck!
I take Gabapentin for this it blocks the pain not totally but it helps. I have tried it to come off it and I am in terrible pain. So I am back to taking 600mg three times a day. A neurorologist gave it to me when I went about my migrianes.
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