buckem

[Buckem]

I was wondering if anyone has tried medical marijuana to get some relief from RLS and if there was any success? I have tried everything else and am running out of options!

[ChrisColumbus]

An often asked question:

healthunlocked.com/rlsuk/se...

[ChrisColumbus]

BTW, if you've tried pregabalin and/or gabapentin without success have you tried low dose opioids? I know that some doctors/neurologists are reluctant to prescribe, but in that case the following may be useful:

healthunlocked.com/rlsuk/po...

[Buckem in reply to ChrisColumbus]

I am on both gabapentin and opioids and am starting to build a tolerance to them. Just trying to find some sort of alternate something! Luckily, I have a doctor who isn't afraid to prescribe opioids if I need them so I'm sure he will increase the dose if needed. Thanks for responding!!

[SueJohnson in reply to Buckem]

How much gabapentin are you on? According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin." And are you taking it this way: Take it 1 to 2 hours before bedtime. If you take more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason . There is nothing wrong with developing a tolerance to gabapentin. You just need to increase more.

I remember you were on oxycodone. How much are you on? And since it only lasts 4 to 6 hours many people develop withdrawal symptoms after that time. If so then one has to take it that often. If so a better opioid is buprenorphine which lasts 24 hours. According to the Mayo Clinic Updated Algorithm on RLS: the average oxycodone dose is 10 to 30 mg,

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed Https://mayoclinicproceedings.org/a...

Meanwhile 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 including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.

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. Keep a food diary to see if any food make your RLS worse.

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.

[Buckem in reply to SueJohnson]

Wow, that's a lot to digest! Some of which I am aware of, some I am not. I will have to check all the medicine and supplements I take when I get home to see if there is any merit to some of your suggestions.

Nothing at all has changed in my life. I have figured out my triggers and avoid them as much as possible and for at least 4 years it has been a non-issue with me, until the last 6 months or so and now nothing seems to work at all!!

Thank you for your response, this site has helped me and many others so much, I am so glad I found it! So many nice people eager to help, its heartwarming!!

[Keith1231 in reply to SueJohnson]

Hi Sue, Can I jump in here. My RLS has gone. I checked my meds to for impact on RLS five of which were so I got replacements from my GP. I am not sleeping well even though no RLS. I also take vitamins: Zinc, B12, B1, Ginkgo Biloba and 1000mg Vitamin C every morning. Would any of these interfere with my sleep? My sleep hygene is not that good either. I have my main meal about 5pm but then graze on snacks, no sweets or biscuits but fruits, nuts etc. Thank you.

[SueJohnson in reply to Keith1231]

None of those should interfere with your sleep.

[Keith1231 in reply to SueJohnson]

Thank you.

[Joolsg]

I used it when going through Ropinirole withdrawal and it did help me sleep for 30 mins. It didn't stop the RLS, but knocked me into a deep sleep.What meds are you currently taking for your RLS? What is your serum ferritin level?

[Jerry57]

Buckem,

Marijuana did not help my RLS. A few years ago, I bought 2 different kinds of gummies (sativa and indica), and both made my RLS worse. I found that “uppers” or stimulants help my RLS, and “downers” or depressants, seem to make it worse. For example, kratom and caffeine help me. I assume cocaine and meth would help, too, but never tried. Don't know if tramadol is an upper or downer, but it is the only prescription drug I rely on, and it has worked for me for over 20 years. It doesn't seem to stimulate or depress, just blocks the RLS. Oh, iron (ferrous bisglycinate chelate) has also been a tremendous help for me. Have you tried iron?

[Angulimala28]

my neurologist recommended cbd oil to help me sleep because the opioids don’t help much with the insomnia just the leg sensations, and it does help with the anxiety and sleep. He recommended Curaleaf Clinic for the prescription.

[Nikos64]

if you inhale or vape marijuana it will definitely provide relief. Edibles not so much.

I would not recommend it for a long term treatment because…

1. You build up tolerance to it quickly and you need more and more

2. Vaping or smoking probably causes lung damage and perhaps it’s a cancer risk.

3. The relief is short lived 1-3 hrs max.

4. Probably adversely affects intellect. Not a good thing if you’re working or have responsibilities.

5. The quality of sleep you get while under the influence of MJ is not good. Sleep and RLS intensity are inversely correlated

Stick with proven and safer therapies a sleep specialist / pulmonologist will prescribe.

My 2cents.

Best wishes for success against this vile disease

[JustVisiting23 in reply to Nikos64]

Excellent advice. I do use MJ to help with sleep and it consistently works. Trying to balance harm that may arise from nightly use vs well-established harm from chronic sleep deprivation.

[Nikos64 in reply to JustVisiting23]

Also, please keep in mind that if you ever need surgery you must mention it to your anesthesiologist. Marijuana increases sensitivity to pain and lowers the effectiveness of the pain meds used for anesthesia. Anesthesiologists have a dim view on marijuana. Not saying you should stop using it … just be careful.

[Buckem in reply to Nikos64]

After reading all the comments on here, I'm not sure weed is the best avenue for me!

I will take what I have learned on this site to my neurologist and discuss other treatments with him. I have a really good doctor who understands how horrible this disease is! He has been willing in the past to try other treatments if he thinks it could work, so he will definitely listen to me!!

[TheDoDahMan]

If you're not averse to opioids, you should request methadone or buprenorphine because they have a longer half-life and thus you will be taking lower daily amounts, which does not usually lead to tolerance problems. I tried cannabis which helped sleep, but not enough to stop RLS symptoms. When I got a 10 mg/day methadone prescription, 5 years ago, all RLS symptoms have stopped ever since. Good luck.

[Jumpey]

I tried it .It provided a little relief,not enough to continue with it. If you are experiencing opioid tolerance can you get a change of opioid? Becsuse if tolerance,I have switched from codeine to tramadol and am now on morphine. Good luck.

[Claire_lc]

I'm afraid I'm with the others who've tried medical cannabis (in both flower and oil formulations - multiple strains), and unfortunately it made the RLS worse. But I've heard other people (maybe it was the medical cannabis people!) say that it helps. 'Releaf' are really excellent in terms of customer service and professionalism of their doctors, and I've tried a few clinics. Good luck!

[Goldy700]

I get full body RLS and get temporary relief during the night with yoga stretching, showers/baths, exercise bike etc. In that window of time I vape cannabis flower which my doctor prescribes and this definitely helps me to fall asleep and sleep longer. The benefits of cannabis is it works on the serotonin pathway unlike the dopamine and opioid drugs which work on the dopamine pathway. It has very low addiction score ie 6% as opposed to almost 100% with opioids. I avoid any tolerance by having a few days off now and then. Oil works quite well in strong doses and lasts a lot longer - but I prefer the instant help of the vaping. Most people find the purple Indica varieties work the best as they are body calming. Worth a try

[DogBella]

I tried several varieties but each made me nauseous.