Itching Scalp/Restless Legs - Sjogrens related?
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I was diagnosed with Sjogrens in 2015 after severe dry eyes & Lasik surgery. I recently began experiencing restless leg syndrome and a Neurologist put me a gabapentin. I don't do well on medication so I tried changing my diet first - no caffeine, no processed food. My RLS is better but recently my scalp began itching with no obvious cause - no rash, no flaking. I went to the GP and he said my scalp was healthy. He wants to try treating it with steroid cream but I already tried OTC creams with no improvement. The itching has moved to other parts of my body. This started 2 weeks ago. When I wash my hair, a large amount of hair comes out - more than normal. Has this happened to anyone else - itchy scalp/hair loss? What did you do about it?
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fern04981 karol8225
Posted
I developed RLS around the time of my SS diagnosis, about 30 years ago. It may or may not be related. About 15 years ago i developed small fibre peripheral neuropathy, which is definitely SS in my case. I was put on gabapentin in '95 for chronic issues from neuro/muscular pain after a bad accident. Took a hefty amount for many years but am now taking half of that dose. For reasons indiscernible to me & my neurologist, sometimes the RLS and/or neuropathy overpower the gabapentin and i have to take more just to get to sleep. Acupuncture helps me a lot with both of these issues. I've also been known to rub topical lidocaine pain meds on my shins to calm down the RLS enough to go to sleep.
As to itchiness: I know a number if SS folks IRL who suffer sporadic bouts of whole body itchiness. Last summer it was so bad and lasted so long that i went to the dermatologist and got a vast tub of goop to rub everywhere except on genitals, face & scalp. Twice a darn day. Had to do it because the alternatives were scratching holes in myself or taking benadryl 24/7, and that is not compatible with anything but sleep.
It was 6 months before i could function without my goop, in temperatures of 46.6°C in my yard, tho much cooler indoors. I've had the occasional whole body itching intermittently for about 20 years, just never non-stop like this year. Coincidentally we discovered that i have zero collagen in/under my skin now. This info came from wound care specialists and physical therapists. My lung doctor says that the amount of inhaled steroids needed to keep my lungs going have destroyed the collagen and, i guess, the ability to generate more. This issue might be aggravating the itchiness. No one seems to know. My last GP supposedly had done a fellowship in geriatric medicine, but she just shrugged her shoulders on the collagen issue, and then said that due to the COVID "experience," she was leaving medicine and I'd be assigned a new doctor.
FYI: i gave up on rheumatologists because since my body quit screaming "Sjogren's" on the only test used where i live, they say i don't have it. Bull corn! (to use a ridiculous '50s saying) The only thing that ever goes into remission on me is the neuropathy. The Sjogren's Foundation states that the disease can continue on even after we quit testing positive, and that's good enough medical info for me.