Is this RLS (restless leg syndrome)?

I have RLS secondary to Primary Biliary Cholangitis. It’s VERY common with PBC patients. And night is the worse. For me, Magnesium helps but she also gave me zolpediem as needed and checks iron and folic acid. My PBC is in check on Urso. Best to check with your medical team and cross check other medications.

That's a really good point about iron, @harliegirl. I'm fairly new here, but I've dealt with RLS for years and I've heard this come up so often.

Many RLS specialists actually like to see ferritin levels higher than what's typically considered "normal" for people without RLS. It's definitely worth having your doctor check your ferritin specifically, not just general iron levels. If they are low, it's always best to talk with your doctor about how to safely increase them, as taking too much iron can have its own risks.

I am not certain about the arm symptoms. The leg symptoms do sound like rls. It is an indescribable feeling in the legs to need to move. I often have to change positions until I finally need to get up and walk around a bit. I take Ropinirol as well as Gabapentin and they seem to keep me sitting quietly

I empathize. I first developed RLS about 12 years ago after shoulder surgery (don't know if there's a connection or not). It is a maddening symptom. Most of the time, it's in my legs, but sometimes I get involuntary movement in my arms too. Evidently, that's not uncommon per websites like Mayo Clinic, Cleveland Clinic, Harvard Health.

The most help I've received regarding my RLS was in a telehealth appointment with Dr. Morganthaler, a sleep specialist at Mayo in MN. At that point, I had been taking ropinirole for the RLS. Over 7 years, with my PCP's guidance, I had been increasing my dose from 1 mg at night to 5 mg across the course of a day because the RLS was getting worse, and Ireached "augmentation." I had to reduce my dosage to make the drug effective again. At about that time, I started on low-dose naltrexone for pain at my PCP's suggestion. Turns out it helped me wean myself slowly down to 3 mg ropinirole/day. I'm shooting for 2 mg/day by the end of the year. I'd love to get off it entirely, but it's working at this point, so I'm hesitant to switch. Plus gabapentin is one of the alternatives, and I can't take it.

Bottom line: Yes, some people have RLS affect their arms too. If you're looking for medication for the RLS, consider alternatives to ropinirole. I hope that helps. Good luck!

I know I've strayed from your question about arm movements, but I just wanted to suggest that you look into ropinirole before starting it, if you're not on it already. There are other drugs available now that are less problematic.

Until I talked to Dr. Morgenthaler and read up on ropinirole, I had no idea of the cautions against the drug

@microgirl I was just like you with RLS—going crazy! My PCP then gave me a referral to a neurologist who was a ‘movement’ specialist. She treated many RLS patients and I’ve no had a problem. I do admit to the start of RLS but it quickly goes away! Your doctor can probably locate one. Let me know what you learn.

Hello Darlia, and all,

I’m 64, and have suffered this leg malady for decades. As I favor Functional Medicine, my remedy is taking Magnesium Glycinate before bedtime and about 15 minutes of multi-position STRETCHING with slow deep breathing, SQUATS, LEG LIFTS, & light YOGA.
I also need to take 90mg NP Thyroid. I’m mindfully disciplined in my diet and I don’t take drugs nor alcohol.

I find that when I sit with my lower back poorly supported, especially when propped up in bed to read for too long, the weight on my lower back causes poor blood-flow and requires a bit more stretching.

This always works, and I sleep deeply throughout the night.

I consider the malady a blessing; because, stretching, deep breathing, balance, etc. is very good for me; and, I’m unable to rest until I do my simple wind-down routine. No willpower is needed.

Whenever I don’t take the magnesium glycinate, it’s always worse. I take pure encapsulations, or Metagenics brand.

Happy legs y’all, & sweet dreams,
Mary Catherine

@becsbuddy so, are your symptoms gone? I am treated through a sleep clinic. Ropinirol and then gabapentin has been added.
Do you not take anything for rls?

@microgirl No, I’m not cured, unfortunately . I take gabapentin 300 mgs. I hav often wondered what would happen if I stopped gabapentin, but then, I talk myself out of it!
Becky

I had restless legs for years and then read that incompetent veins in the legs can sometimes cause it. I saw a vein specialist and an ultrasound exam revealed that the GSV (great saphenous vein and SSV (small saphenous vein) were not functioning. I had an outpatient procedure done under local anesthesia to seal those veins. I had to have a second round of treatment but, in the end, it did mostly cure the restless legs.

@becsbuddy you only take gabapentin? No Ropinirol?
I take 300 mg of Gabapentin and 2-3 tablets of 10 mg Ropinirol. The gaba helps me sleep. I have “forgotten “ to take Ropinirol and it’s an awful night of moving!
Chris