RLS my living nightmare!

I too have RLS and PILM but not as severe as some people. I started taking high doses of Vitamin D3 which worked great for the RLS and once I found that worked, I slowly reduced the dosage to 2000 MG at night.

The PILM is triggered by Benydryl, Ambien and like medications. For that I am prescribed 100 MGs Gabapentin but I try to avoid the triggers as I feel the Gabapentin makes me unsteady on my feet.

My mother had severe RLS and had to stand or walk around to get relief. I think maybe the Vitamin D3 is keeping the RLS under control. It's pretty benign so I hope you give it a try and see if it at least eases your symptoms. I started with 40,000 mgs and reduced to 20,000.

@degarden_girl Actually, Vit.D-3 is not benign. Too much can actually cause problems. Vit D3 works with calcium throughout the body and too much calcium can cause major problems.
From Google:
Upper Limit: The tolerable upper limit for daily supplementation without medical supervision is typically 4,000 IU for most adults.Primary SourcesSunlight: The most natural way to get D3 is through safe, unprotected UVB exposure, though factors like geographic location, skin tone, and sunscreen use can limit production.Food: Naturally occurring sources are limited but include fatty fish (like salmon and mackerel), fish liver oils, and egg yolks.Supplements: Because food and sunlight are often insufficient, D3 supplements (often derived from lanolin or lichen) are widely used.Health Benefits & RisksBone & Muscle Health: Prevents brittle bones and rickets/osteomalacia by promoting the gut's absorption of calcium and phosphorus.Immunity: Vitamin D receptors are found in virtually all tissues, and the vitamin plays a vital role in modulating immune function and reducing inflammation._Risk of too much: Taking excessively high doses (routinely >10,000 IU daily) can lead to vitamin D toxicity, causing a buildup of calcium in your blood (hypercalcemia), which may lead to nausea, weakness, and kidney issues.
Your doctor may have OK’d your high doses of D-3, but I don’t want everyone to think it’s OK without a doctor’s knowledge and agreement

I have had RLS for 25 years or so and am on 4 mg Ropinirole and 600 mg Gabapentin at night. If that doesn't work I take more Gabapentin and if that doesn't work I take another Ropinirole and if that doesn't work I take a pain pill, Hydrocodone 10 mg usually knocks it out. I've even been known to hit my legs with something so make them hurt instead of the horrible RLS feeling. That seems to break the spell as well. Sounds extreme but you do what you need to do to make it stop.

I just heard that RLS is connected to Vit. D defency. Please get yourself tested.

@suetex
I have always had a Ferritin level drawn as it's Iron level that needs to be a little higher than a normal dose. Vit. D helps in many ways but I hadn't heard it with RLS. I've always been on a good dose of Vit D for RA and for my bones. Still had RLS. Wondering where you heard this? Maybe new research?

Sadly, I can't recall where I read this but I know it was a reliable source or I wouldn't have mentioned it. My husband has RLS and I am seeing that he takes 5000 units a day. (Researchers followed people for 7 yrs and saw no harm done.) I will report on his progress as he has just started.

@becsbuddy Thank you for clarifying this information. I did consult my doctor and never exceeded 4000 IUs of Vit D3 and I only took that for a couple of nights as once I found it worked, I reduced the dosage to 3000 per night and then to 2000 per night. In my original post I incorrectly listed the dosages I was taking.

I should have been more accurate and more specific in my message.

Donna

@murphy2370
Hi Jim,
I see you were prescribed Nidra by the VA. I am in the process of applying to get Nidra. Does the VA pay for it, or do you have other insurance? I am excite hoping to hear that it works well for you, and am hoping to get one. Thanks for posting about it.
@gail4

This sounds too simple to be true, but this remedy has really helped myself and several family members and friends! Drink a glass of Tonic water every day. You can use the diet version. Any brand works. If you hate the flavor, add some fruit juice since tonic water can taste bittér. Add crushed ice if desired too. The reason this works is because tonic water has quinine in it! There used to be quinine pills but it is my understanding that those are no longer available. Please try this for a week! Then remember to report back to let this group know if it worked for you! I hope it does. Best wishes!

FYI: my husband suffered from RLS for many years. Neurologist tried various meds that would work for a while but then legs discomfort returned. We thought we may have discovered relief with drinking tonic water believing in it so much that I suggested that his neurologist should recommend trying it to his patients. (I can only imagine what the doc was thinking after hearing my suggestion). Yes, tonic water did help initially but after long time use it stopped working. Recently my husband received one time only infusion of iron. It seems to have helped; but he finds drinking 1-2 glasses of beer on his routine Monday outings to the local firehouse brings on the uncomfortable feeling while trying to relax that evening. Of course, suggesting giving up his Monday outings is not an option at his age (soon to be 88). Hope this info helps someone.