Using cannabis oil for rls.

[art37]

Have had restless legs badly the last couple of years. I have iga neropathy, kidney disease and after twenty five years of it am now on dialyisis. My rls became bad about eighteen months ago when I got anaemia. I have been on Sifrol. Recently have begun taking cannabis oil, 4ml twice a day. I have found it has curbed my legs during the day quite profoundly but when I get into bed at night off go the feet within ten minutes. I find Sifrol makes me fall asleep at a moments notice, add weird lines not conversations and a bit of sleepwalking thrown in. Had a nasty fall in kitchen in the middle of the night about ten days ago. I have looked at gaberpentin but it looks like a horror story. I get bad rls on the dialysis machine and its awful and goes on for three and a half hours, pure torture three times a week. Has anyone else tried cannabis oil and if so did it help or do you have any tips for me please.

[Rayme]

Im sorry to hear of your difficulty with RL while on dialysis, I can imagine it must be incredibly hard to cope with. CBD didn't help me but when I tried cannabis edibles it helped my RL settle really well, it's to do with the THC. But as tolerance developed I am now on methadone.

[SueJohnson]

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

The cannabis oil can help as can cannabis especially with kidney disease.

How much sifrol are you taking?

Gabapentin is not a horror story (it completely controls my RLS) but with your kidney problems doses need to be kept low and you need to be closely monitored, but it won't help much anyway while you are on sifrol.

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

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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.

[Joolsg]

I'm so sorry to hear this. Kidney dialysis patients do suffer RLS and treatment will be governed by what your team feel is safe.

ncbi.nlm.nih.gov/pmc/articl...

The above article references all the studies on RLS and Dialysis up to 2020.

The drug options are dopamine agonists or gabapentin. Sifrol is a dopamine agonist and like all other DAs, will cause RLS to worsen over time. This is known as Augmentation. It also causes sleep walking and sleep eating.

ncbi.nlm.nih.gov/pmc/articl...

The above article is about sleep walking on Pramipexole (sifrol).

Gabapentin or pregabalin are therefore your next options. Please find a good doctor who is familiar with RLS in Australia (there aren't many) as you will need to be closely monitored to reduce Sifrol very slowly by half a 0.125 pill every 2 weeks.

Methadone or Buprenorphine are low dose, long half life opioids that are very effective at treating RLS, but there have been no studies on kidney dialysis patients.

[Eryl]

Kidney disease is often caused by uric acid which is the result of metabolism of fructose which is half of all sugar both refined and fruit sugar, the other half is glucose. sugar causes inflmmation of the nerves giving rise to RLS. Any medication is only likely to dampen down the sensations of RLS, not remove the cause.

[art37 in reply to Eryl]

Hi Eryl my disease was caused by a flu. Thankyou for your input, food for thought

[Sleeplesniights]

I use CBD oil for my rest less leg and it helps me . I take 5drops warm water before bed

If it starts through the night I have some CBD balm to rub into my legs and it helps a lot

[art37 in reply to Sleeplesniights]

That is interesting, have not heard of CBD balm at all, maybe we dont have it in Australia.

[Sleeplesniights in reply to art37]

Best if you google it

[RonBo2021]

I have RLS really bad at night only. I take Gabapenten and sometimes Pregabalin. The RLS at night got a lot better when I started taking my Long term Insulin shot at 5:30 to 6:00 AM. That moved the howling hour ( 11:00 pm to 2:00 AM ) up to 8:00 pm instead of later.

I am now trying CBD pills but not happy yet. Would like sometime stronger, maybe with THC.