frustrated with RLS On behalf of my husband

[Sweet76]

My husband has been battling RSL since 2013 on and off after a bad motorcycle accident in 2013 severe head injury and knees for the last 3 years RSL is very severe keeps him up for hours at nighttime and not a lot of help from our doctor, it’s so upsetting seeing my husband in pain and suffering his knees click every time he thrushes them around trying to relieve pressure, the Codine gives him a crooked guts each morning and when he was on Gabapentin and ropinerole he was like a zombie both at night and disoriented during the day has anyone had similar experience and any suggestions what to try my husband is struggling and can’t see hope for relief from RLS

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Was he on ropinirole and gabapentin at the same time or separately?

Is he off both now?

If the answer is yes to both he could try pregabalin.

If that doesn't work he will need a low dose opioid. I would recommend buprenorphine or methadone. I wouldn't take the others as they wear off in 4 to 6 hours and you get mini withdrawals unless you take them that often

[Sweet76 in reply to SueJohnson]

Hi Sue,

He is currently on 45mg codeine.

He was on pregabalin with ropinirole Plus codeine horrible side effects, with buprenorphine does it effect you during the day like drowsyness and disorientation, thank you ☺️ for your help it’s 12.34 am In New Zealand and most nights I’m up trying to help my husband get to sleep he has finally fallen asleep but out on couch, I’ll make a doctors appointment today and let you know how we get on, our doctor is ok but gets frustrated with us because of Dr google lol but now we have Dr health unlocked. Com rsl im sure I’ll get a ear full but we will be not leaving doctors without a prescription its about quality of life and its taking a toll on my husbands mental health too

Thank you again I feel hopeful 🙏

[SueJohnson in reply to Sweet76]

Pregabalin won't help while on ropinirole. Buprenorphine does have side effects but many disappear as the body gets used to them and others can be managed.

[SueJohnson]

Has he had his ferritin checked? If so, what was it? Improving ones ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. This is the first thing a doctor should do. If not when he sees his doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have his test in the morning before 9 am if possible. When he gets the results, ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his transferrin saturation to be over 20% but less than 45% and his ferritin to be at least 100. If they are not, post them here and we can give you some advice.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

If he needs a new doctor there is Dr James Moodey, at Manukau, Auckland at manurewa medical centre - "He is young and inexperienced in RLS but saw what a bad state I was in . fairly nervous to allow me to try methadone He was prepared to look at the research I took with me" recommended by Mongolia2020

[DicCarlson]

I had an un-diagnosed concussion from a fall skiing. Fast forward 6 months and I started to have sleep issues - another 6 months - full on severe RLS. The head injury COULD have been the trigger - and/or a gut connection from SIBO (Small Intestinal Bacterial Overgrowth). Anyway - after weeks of searching I discovered the iron connection (Ferritin level was under 50) - Ferrous Bisglycinate Chelate. Almost overnight the severe RLS abated. I still have sleep issues, but not the severe RLS.

" Inflammation can be responsible for iron deficiency and hypothetically could cause central nervous system iron deficiency-induced RLS. Alternatively, an immune reaction to gastrointestinal bacteria or other antigens may hypothetically cause RLS by a direct immunological attack on the central or peripheral nervous system."

pubmed.ncbi.nlm.nih.gov/222...

[Joolsg]

Is it definitely RLS? Does he have the overwhelming urge to move? Does movement relieve the sensations?Here's the diagnostic criteria.

rls-uk.org/symptoms-diagnosis

[StanSliwa]

Has he tried the TOMAC device?? My RLS specialist at UPittMedCenter recommended it

Stan Sliwa

[SueJohnson in reply to StanSliwa]

It's only available in the US and in some states.

[Edengirl58]

Yes, get hold of Unlearn Your Pain by Howard Schubiner. Check out his website of the same name. I am curing my RLS of 25 years standing by using it. Revolutionary new science. Good luck, RLS is truly awful

[Wordsworth99 in reply to Edengirl58]

Hi! How is that going i.e. how much success have you had with using Mind Body Medicine? Just been reading your posts from a year ago, and 6 months ago. I’m very curious as I too believe there is a mind component. This becomes apparent when being mentally stressed it aggravates the RLS, and conversely it’s better when on holiday (preferably a tropical Island 😁). Thank you for sharing your experiences!

[Edengirl58 in reply to Wordsworth99]

I have been using mind body techniques for the last 18 months and managed to cure debilitating long covid and chronic back pain so far, and am now working on the rls. There is now scientific evidence to validate this approach - used for conditions where there is no definitive structural physical problem.

If you check out Dr Schubiner, you will see all his criteria to work out if any particular condition is mind body. I have contacted him, and other Drs using these techniques and have been reassured by all that rls is indeed a mind body syndrome, and they have successfully treated many people.

The beauty of it is: non invasive, no meds or devices needed and very cheap (just the cost of books, resources etc- obviously more if you have in person help). The idea is very simple once you’ve grasped it, though it does take some work and time, it’s well worth it to get rid of these horrible symptoms.

Good luck, and I’d love to know how you get on.