I would like to get some advice as I continue to be very concerned.
My sediment rate was low (4) , SSA SSB, ANA all were negative but had a high RA factor. My eye test was a 10 in one eye and 5 on the other. The eye doctor thought my eyes looked good.
My GP is still looking for a Reamy at Yale. (any other suggestions by New Haven or Hartford)
Any success stories for nerve pain and small fiber pain (self diagnose) The nerve pain is my biggest concern. Would love to hear what people have taken to help with nerve pain.
How do you know its nerve pain? Its a pretty straight forward diagnoses. In any event the most effective medications for small fiber nerve pain happen to be a combination of anticonvulsants and are you ready for this? Antidepressants........
I don't know if its nerve pain but it certainly feels like it. Relief would be great
I'm on amitriptyline low dose for nerve pain (caused by the problems I have with my neck, I presume unrelated to Sjo), which as Tj1 said is an antidepressant. It worked really well for the first couple of months, working less well now. I think you were asking about antidepressants in an earlier post?
But amitriptyline can cause dry mouth.... just adds to the joyful 'circus' (as someone else called it!)
I’ve had variable amounts of nerve pain for about five years. Only recently when I had a flare in both feet that left my feet burning non-stop did I consider it. At this point, I am choosing to not treat. I have been tentatively diagnosed with small fiber neuropathy due to the Sjogren’s, and will schedule a biopsy to confirm if/when it worsens.
I have peripheral nerve damage and it is grossly unpleasant. My rheumy sent me to a neuro to get to the bottom of what was happening. The neuro did extensive testing to rule out everything so as to be absolutely sure we didn't skip something or gloss over with a quick judgement. The short version is that I am now on one of the meds that is given to diabetics with nerve damage, sometimes used for shingles nerve pain and according to the insert can be used to a point for seizure disorders. It helps a great deal so Yay for that. BUT it is a very good thing that he was so thorough as he found something else that is important to note for my other health issues. Getting to the bottom of your actual diagnosis will help them help with your other issues.
I take gabapentin at bedtime for my nerve pain- it's helpful. I also have a topical compound with a bunch of goodies in it- lidocaine, gabapentin, an antidepressant, another topical anesthetic, etc. It's awesome for the small fiber pain (and for the bursitis and other icky inflammatory stuff in my feet).
If you can't get a fancy compounded cream (mine's unbelievably expensive because my insurance denied coverage), try tiger balm or another topical thing- if you can stand them. They're distracting, which is great, but they tend to smell pretty intensely of menthol or camphor.