Is anyone else experiencing pins and needles or neuropathy? Lying on my back is impossible because my hands start tingling the moment my arms are by my sides. Currently, my feet feel like they’re burning or prickling, which makes being on my feet or walking really frustrating.
It’s been over two years since my diagnosis, and I’m still confused about my symptoms and unsure what a flare actually feels like.
How do you all manage this? I haven’t discovered a fix yet, particularly for sudden episodes.
Should I bother seeing a neurologist? My GP referred me a year ago, but the office was too far away so I skipped it. Following my rheumatologist’s advice, I had an EMG/nerve study where they use needles to test signals; it was unpleasant and the results were normal.
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I’ve dealt with the same thing. My nerve conduction test was clear. I actually had surgery for the symptoms before my RA diagnosis. Gabapentin provided some relief, but I couldn’t handle the side effects. Now, I mostly just try to push through it.
I experienced this frequently during the first year of my RA. It would either turn into intense hand pain like carpal tunnel or just stay as a constant, miserable tingling.
The only thing that truly helped was finding the correct medication. Rinvoq worked for me, though everyone reacts differently. Are you currently trying any RA treatments?
Before I found the right meds, I used these strategies to try and sleep:
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Don’t use a laptop or phone without proper wrist support, as that was a major trigger for me, especially at night.
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Wearing drugstore wrist splints overnight to keep my hands and wrists aligned.
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Propping my arms up on pillows so they stayed level with my chest.
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Using compression wraps from my shoulders to my forearms; sometimes the pressure helped.
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Placing ice packs inside the splints or wraps.
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Applying Voltaren gel; it’s better for pain than tingling, but it occasionally helped my fingers.
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Moving around and swinging my arms helps a lot, but you can’t sleep if you have to do that every 20 minutes.
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Sneaking into the bathroom to cry so I wouldn’t wake my partner (joking, but I did it often and it didn’t fix anything).
None of these were perfect fixes—they only provided minor, inconsistent relief. I used to be terrified of those nights when the tingling started before I went to bed.
I hope you find a way to feel better and have a supportive doctor.
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A few years after my RA diagnosis, I developed carpal and cubital tunnel in both arms and required surgery. I also dealt with agonizing foot neuropathy and used gabapentin for it. Recently, I had a spinal cord stimulator put in, which has reduced my pain by about 90%. I’m finally starting to reduce my gabapentin dose.
I’ve struggled with neuropathy for ages, even before I was officially diagnosed. B12 shots helped for a while, but the symptoms returned as soon as the treatment ended.
The sensation in my hands is irritating, though keeping my arms straight offers temporary relief. For my feet, I usually just have to sit down and wait for it to pass if I’m out walking.
There’s a YouTuber named Paul in Perth who dealt with severe neuropathy; he mentioned a specific medication that worked for him, but the name escapes me.