Is this RLS (restless leg syndrome)?

Wow, you have had an awful time with RLS. I started off taking 4000 IUs of Vit D3 and then reduced to 3000 and now am at 2000. My doc didn't see any problem with me taking 4000 so maybe your doc would find that is OK for you to try. And then maybe try taking it around 5 PM to see if it calms the RLS. I do wonder if your sleep medication might be triggering the RLS. I too have found the whole issue is exacerbated by aging (I'm 78). My mom had it and had to stand up to watch TV. We didn't know about Vit D3 then.

I wish you good luck. RLS is an awful disease with such a silly name.

Donna

@covidstinks2023. Do you still take Flexeril for RLS? I’m having such a hard time finding something that works. Gabapentin and requip just weren’t working and I’m up half the night pacing! Sick and tired of it!
P.S. I just saw your note about not needing Flexeril anymore! You lucky person! Is the RLS gone?

@susanh84. Hi, Susan, so you’re not having any RLS symptoms? How long did it take before you got relief? And how much gabapentin do you take? With all my other health problems, RLS is just too much! I want a good nites sleep!

Yes it is gone! After months of taking the Flexeril 5 mg at night I no longer have it. Have you tried rubbing your legs down with Volateren Gel before you go to bed? I couldn't tolerate the Gabapentin for RLS. I''m so sorry you have this. It's miserable! Praying for relief for you.

I used to take 300 mg four times a day. I have since weaned myself off them Thankfully, the RLS has not returned.

I can't take Benadryl or any antihistamines which some people say can make it worse.

Thank you Mary. You’re quite right. I had an iron infusion done last year and I had months of relief. But you’re right too, that we need more iron than the average. Sometimes the brain doesn’t absorb iron even though the rest of the body does. RLS is horrible to live with. Never a good nights sleep!

One of your symptoms (hand curling into a claw) describes carpal spasm which is classic for calcium deficiency. Calcium and magnesium are neuromuscular relaxants. I would ask your doctor to check your calcium and Mg levels in serum. Hormone imbalances (parathyroid) can affect calcium levels. That can aggravate RLS. RLS is relieved temporarily by walking. The other important blood test for RLS is a ferritin level, as iron deficiency worsens RLS. A neurologist is the specialist who treats RLS and PCP can treat Ca, Mg, iron deficiency if present. Trousseu’s sign, carpal spasm brought on by a BP cuff pumped over the top BP number and held for 1-2 minutes, is a reliable home test for low Ca.

After 2 year of decreasing RLS relief from Rotigerone and Gabapentin
I switched this year to Neupro Rotigitine patches that relieve to RKS for 24 hrs.Size of thumbnail easy to use. Switched to Neuro doctor who treats involuntary movements including RLS.
Order from Canadan pharmacy at about $600 less/month in US.
Sleep improved immensely also by getting IVG Iron treatment to elevate ferritin above "normal" level.
Shazam

I have been diagnosed with Willis Ekbom Syndrome (RLS) by my rheumatologist but ...I don't have restless legs. I told him this but he ignored it in his printed diagnosis.
I'm wondering, Does anyone know if it's possible to have RLS without the RLS part? Seems ridiculous, right?
I do have neuropathy and chronic pain in joints, muscles and skin, also extreme fatigue and very painful hands. This has been going on for several years. I can't take NSAIDS so take prescribed hydrocodone three times a day for the pain plus Ambien to sleep. Feeling quite desperate.