Restless Legs - Any suggestions as seen many doctors and medications

Hi I've also had RLS for 45 plus years and have had a reaction to the medication use to treat RLS so that's out for me. Mine will start early evening and throughout the night. I've worn holes in sheets several times over the years. I do take magnesium glycinate but have not really noticed a difference. My Iron is good, but one doctor had me take extra for a while to see if that helped but stopped when it was ineffective. I did have one neurologist tell me that while my iron levels are good, my brain might not be receiving the signal that my iron is good. Not much can be done with that, and I moved out of the area before I could discuss that with him in more detail. I have another appointment in Dec with a different neurologist so will see what they say. My problem is I try to find doctors that are good with RLS and only after seeing them do I find out they really know nothing and just want to prescribe meds, which I cannot take. I take tramadol which doesn't stop it but helps makes it more tolerable. What works the best for me is heat on my back, tramadol, and pot gummies. I do the CBD with little THC as I don't want to get high. At first, it worked wonders for a few months, but now it's back to bothering more often. I really don't want to take more and more gummies so thinking I might stop for a month then start back. I really hope this new doctor in Dec can help me....triggers for me have been too much walking and too little walking, being tired always seems like it will make it worse. Mine is to the point my arms will sometimes bother me so that just makes it extra special...lol what helps today will not tomorrow as it's hit and miss what will work that day but I use tramadol, heat, support sock, walking (not too much), gummies, laying on couch over chair etc. the supplements I take never seemed to make a difference, but I still take them as afraid it might be worse without but over the years doctors have said...Vitamin D, E, Magnesium, I have always taken potassium as I also get leg cramps all the time as did my mother. FYI some medications will give me sever leg cramps to the point I cannot take...I actually have a long list of things I cannot take as I have a reaction to it...hives, leg cramps, cough and asthma symptoms (Aleve and other medications) or taste perversion (omega 3). I say this as many people here have suggested different medications or vitamin's and I've tried many, but have reactions and end up not being able to take them so back to what works the best most of the time is heat, tramadol, gummies and support socks. good luck to you...

@dhafford Nidra straps

@dhafford
Hi There,
Have you had a sleep study?
You have gone through the ramifications of medications, and what many of us sufferers have. experienced, augmentation, or nothing.
What neurologist have you seen?
After almost 35-40 years suffering from a form of RLS, called PLMD:
Periodic Limb Movement Disorder, the neurologist from Mayo who is a Sleep specialist, prescribed buprenorphine subloxene, dissolved under the tongue.
What a Difference! It is only prescribed at 2mg, but I take 1/3 of a tablet.
It has kept the leg spasms at bay.
My best to you.

@jebk I looked into those Fall of '24. Insurance wouldn't cover them at the time and I was still on the pramipexole (augmentation still a factor). I bought a TENS unit, hoping I could figure something out, but was not successful.

@johnbishop Hoo boy, my list was less complete than I thought.
I have tried hot baths (w/ & w/o Epsom salts), heat, ice: all ineffective. Exercise actually makes it worse (at least until I started giving the hammies a double stretch. Percussion gun to the hammies helps occasionally.

@dhafford Check out the Nidra bands--similar (sort of) to a TENS, but one is high frequency and the other is low frequency and the Nidra was created specifically for RLS---there is a bunch of research supporting its efficacy (and it works so well for me). It's only available via Rx. I also tried using a TENS (years ago) and it was too irritating to allow sleep. With the Nidra you fall back asleep because it cancels the RLS. I still need medication, but the Nidra is great as additional therapy. (Google Nidra a TOMAC device and the Noctrix Company that makes it. There are YouTube describing, I believe, or look on PubMed for medical research articles).

Nidra has only been FDA approved for 3 years and the company "put them out" state by state initially--so they weren't available in every state at the same time. It was a process. Maybe, your state was "later" having them available, but will now.

I have been on Pramipexole 1mg tab for over 12 years. I have read about the side affects and I can understand why some people nervous about taking it, but I have not had any of them. I am so thankful for this drug and not have RLS anymore. Hope this helps.

@jebk mine stopped after 25 years of being severe, when i was given iron infusikns to treat cancer related anemia.
Like magic, fone almost.overnight after the third infusion.
Nothing else ever touched the RLS ar all.

The current RLS guidelines no longer recommend dopamine agonists drugs like pramipexole for new onset RLS because of augmentation. Augmentation can happen years--even decades--after it is initially prescribed.

(I think I remember friend zombiewolf as one whose augmentation started after 20 years)

My RLS expert doctor believes everyone who takes drugs like pramipexole will eventually have augmentation. One of the evils of this drug is that is does work well (until it doesn't), so doctors and patients can be lulled into thinking it's good for RLS. It isn't.

Unfortunately, for many on our forum, there is no guideline for "getting off" already prescribed dopamine agonist drugs. And, there are people, like our friend ranpattiwagner, who find these drugs helpful and have not yet experienced augmentation and post about this.

Anyone with RLS needs to be acquainted with what augmentation is and avoid dopamine agonist drugs if not already prescribed one of these. For those, like ranpattiwagner, watch for signs of augmentation and confer with an expert RLS doctor (if possible) on how to handle it.

The Restless Leg Foundation has descriptions on their website about augmentation and there have been a number of postings on our forum describing symptoms and how difficult (horrible) they are.

I have great sympathy for anyone currently on a dopamine agonist drug. But, it is important not to extoll these drugs as virtuous to others suffering from RLS. That does not tell the story in full.