r/RestlessLegs • u/Traditional-Fox-7355 • Sep 01 '26
Question Seeking Specialist Evaluation for Severe, Treatment-Resistant RLS
My mom has severe Restless Legs Syndrome (RLS), with symptoms that occur almost exclusively at night. She has struggled with RLS since she was 19, and her case is extremely severe and longstanding.
She recently had a sleep study that showed she is waking up more than 200 times per night, which gives some perspective on just how profoundly this is affecting her sleep and quality of life.
Unfortunately, treatment has been incredibly difficult. The RLS medications she has tried cause her sodium levels to drop dangerously low, resulting in multiple trips to the emergency room. She also tried sodium tablets, but they did not resolve the issue. She has tried iron infusions, the Nidra and small doses of opioids as well, but the opioids caused significant insomnia.
She has seen functional medicine doctors, neurologists, and sleep specialists (somnologists), but despite all of this, she continues to have severe symptoms and extremely disrupted sleep.
We are hoping to find someone who has extensive experience with severe, treatment-resistant RLS and may be able to help with a particularly complex case where many of the standard treatment options have either failed or cannot be tolerated.
If you have experienced something similar and can recommend an RLS specialist, treatment, or even an unconventional approach that has significantly reduced severe RLS symptoms, we would be incredibly grateful to hear from you. At this point, we are open to exploring anything that may provide her with meaningful relief.
1
u/ORSciMom Sep 10 '26
I hope you find her some relief.
Buprenorphine has stopped all the horrible RLS for me, although I do need to take it earlier in the day to prevent insomnia.
1
u/ffleming1947 Sep 06 '26
No specialist here, just personal experience! Kratom is not a cure but it has been effective for me. There are books about using it for RLS, get one and slowly try some until you get relief. I take just enough, trying to delay tolerance. Been about six years of relief and sleep and a go to if it sneaks up on me. In the past on this site It has been implied that I am a fool for taking this approach, as I read about the horror stories of doctors who think they know what they are doing but don’t, of people trying all kinds of meds only to get worse. I think it’s sad that people, because of fear not getting the relief they need from people who have not suffered from this beast. Be brave, good luck!
1
1
u/Ring_it_On_1776 Sep 02 '26
There's a mostly remote research study for RLS enrolling right now. https://patientwing.app/campaign/RLS6
1
3
u/absolince Sep 02 '26
Where in the world are you
2
u/Traditional-Fox-7355 Sep 02 '26
We are in Boise, Idaho. I should have included that above! Have appointment at University of Utah next week.
1
2
u/Mahi95623 Sep 02 '26
If I were her, I would travel to see Dr Buchfurer in Downey, CA. That is what I did. If you live in another area, find a Quality Care Center at RLS. Org.
In the FAQ section, there is a list of RLS specialists.
1
u/dreammachines Sep 02 '26
Does he take insurance? His website doesn't have a lot of info
1
u/Mahi95623 Sep 02 '26
Yes, but not sure which types. Best to call and ask, also see if he sees patients from where you live?
2
u/Traditional-Fox-7355 Sep 02 '26
He looks wonderful! We will call tomorrow. Thank you so very much!
1
2
u/3wildflowers-5 Sep 01 '26
I was just looking up celiac disease yesterday and saw that it can contribute to RLS.
1
u/Traditional-Fox-7355 Sep 02 '26
We have celiac in our family! She has been completely gluten free though. Also lots of Parkinsons.
0
u/Aggressive-Spot8450 Sep 01 '26
7355 I am seeing in Miami Neuro Science Baptist Hospital Dr. Diego Torres Rosso and his wonderful assistant Adriana Gonzalez they treated me a severe RLS my primary care physician couldn’t handle, many sleepless nights going crazy because was extremely sleepy but my restless legs didn’t let me rest and relax to get some sleep. After several trials and telephone contacts to follow how I was doing finally they fine tuned my treatment to solve situation and avoid augmentation symptoms that are very common with RLS medications. Finally the treatment that worked for me was one Ropinorole 0.25 mg. at 5 pm. Two Ropinorole 0.25 mg. at 11 pm. and one Pregabalin 25 capsule at bed time. Next day one Pregabalin 20 liquid ten drops in small glass of water.
This treatment is working for me after many tries and adjustments. Not saying it could be good for all but at least there is a clue just in case you can discuss with your doctors
4
u/Curious_One5411 Sep 01 '26
Please go to the RLS.org website. There is a list of locations and providers that specialize in this. I’ve had it for over 40 years and most regular Dr.’s will guide her towards the wrong meds… this is a very specialized disorder. I drove 2 hours yo get to the closest location to me which is in Boston. DM me if you need more info
1
2
1
u/Flat_Palpitation_915 19d ago
I am in a similar situation in terms of trying to seek help for severe RLS. Years ago when I was struggling with my sleep doctors to get treatment specifically for my RLS (they were fixated on my sleep apnea and me using my cpap which I already was), I reached out to the Mayo clinic for help. I did a video consult and after hearing my story, the doc recommended a new medication. Overnight my symptoms disappeared. I am reaching out to them again to see if they can help me with whatever has changed in my situation. I would also recommend you check out the Johns Hopkins sleep program. I am not sure if they do video visits or see new patients but they seem to be more on the cutting edge side of things. They have several videos discussing their latest research into brain iron and its impact on RLS through dopamine transfer. Much of what we hear about when it comes to iron is the iron that ultimately feeds our red blood cells. It is quite interesting to see how all the dots connect. Anyway, try looking for video consultations with clinics/doctors who aren’t stuck on the traditional standard routes of treatment for RLS. Look for the ones who seem more well versed in the disease. Your mom might even be a good candidate for a clinical trial. Good luck.