Posted 1/13/2019 4:42 AM (GMT -6)
Hi Breanna, sorry you are having such a rough time. I think it is beyond frustrating to experience things with our bodies that are not easily recognized as something specific by our Drs. I have a mixed bag of things including psoriatic arthritis, Raynaud's, Sjogrens, and UCTD which has some features of lupus but not enough for a true Lupus dx. I get what you are talking about...My legs get stiff and fatigued to where walking becomes soldier-like. Seems to happen more when I try and rush. Frustrating and so uncomfortable! If I ride an exercise bike for a little while I then have trouble going down the stairs due to the stiffness. I guess the stiffness wears out the muscles and the fatigue sets in. I have it in my arms and holding them up to type becomes a chore.
I wonder if this stuff has to do with the Sjogren's. I think that is not well understood and even my Rheums seem to think of it as dry eyes/nose/mouth but when I research it there is so much more to it with symptoms similar to what you describe. I don't know, of course, but I suspect that may have a role when the Drs don't really know what you are describing with symptoms.
I am a big fan of Gabapentin! I love it, lol. But I have a lot of nerve issues and I think it is a nerve medicine. My husband takes a low dose at night for restless leg syndrome and he loves it too. My neurosurgeon put me on it when I was considering surgery for my arthritic neck and I still had the surgery but I continue the gabapentin for the relief it gives me in other ways. My mother took it and found no benefit and side effects, so everyone is different.
I hope you find some relief, soon. So frustrating, I know.