MEDICAL CANNABIS AND RLS: Hello I have... - Restless Legs Syn...

Restless Legs Syndrome

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MEDICAL CANNABIS AND RLS

palomino profile image
16 Replies

Hello I have had RLS for 56 years and then FIBROMYALGIA for 24 years. I am about to go over the top with the RLS as it has all become too much. I have tried all the various prescription drugs that I have been offered by the GP and hospitals, been to a sleep laboratory, tried various alternative therapies, but the only help that I really need is medical cannabis, but it is very difficult to get a GP to prescribe it, and I have now found out that there are various clinics but they are expensive. I am almost sick at the thought that I could get some sleep and be rid of this dreadful affliction if only I could access this drug. I have also written to my MP and previously have emailed the Home Secretary. Still no result. If I was a wealthy person I would be in a much more comfortable position. Unfortunately the RLS is getting worse with age and I have also been experiencing DOPAMINE AGONIST WITHDRAWAL SYNDROME as I have come off MIREPEXIN because of augmentation and weight gain, yet I am still on ROTIGOTINE patches which is again a DOPAMINE AGONIST which I find confusing that I am getting withdrawal symptoms.. I have only recently had support from a GP as it was not recognised many years ago and one GP labelled me an "enigma" because of the symptoms I was relaying. Luckily at that time I did discover RLS-UK. I have researched food and supplements for dopamine and have included some supplements plus iron into my diet, but to no avail. I also cannot wear trousers, tights or any clothing which touches my legs because the cooler I keep the lower part of them the better. This is a nightmare in winter and I often have to resort to wearing shorts in the house if I wear trousers briefly when going outside. I have also tried various exerecises that some Chiropractors recommend. Some American Chiropractors feel that RLS is because of problems in the back but after a visit to a local Chiropractor he had no experience with RLS, and again this would be a private fee paying service. I have also been told that I have the painful variant of RLS because of the intense pain in my knees. I think this is such a cruel condition and have walked around my house and garden any weather through the night just to get some movement and cold on my legs. I am now in a very desperate situation as I am sure a lot of people will emphathise with. I have also read that it could be a rogue gene that causes it but I am not sure how one would prove this, and could that help with some sort of relief therapy or drugs?

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palomino
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16 Replies
Netball-50 profile image
Netball-50

I can sympathise with this situation you just try anything and see anyo e to get some relief are you in the UK? I've had a similiar experience nothing helping at all I wonder if one day there will be some relief for us all its horrible and totally affects your life 😢

Hi, I'm really sorry to hear about your terrible situation. I really don't know if I can help, but I will write some thoughts I have which.might.

Assuming you live in the UK then if you are eligible you can join a trial called Project Twenty21. This would enable you get a prescription for medical Cannabis. I'm afraid you have to pay for it. I believe the current cost is £70 per month.

If you don't live in the UK then this may not be an option.

( "GP" suggests UK, "Mirapexin" suggests US. In the UK we're prescribed pramipexole).

There's a couple of members of this forum, I know of, who are in the scheme. Hopefully they will respond to you.

I note you say you have tried everything your GP offered. Does that include gabapentinoids or opioids? These two, along with dopamine agonists (DAs), are currently the most effective.

Whenever you reduce the dose of a DA.you may experience withdrawal effects. So if you came off mirapexin, even though you're still using rotigotine you may expetience withdrawal effects. Not nice, but normal.

If you stopped the DA suddenly or weaned off it too quickly withdrawal effects will be more severe and may last longer.

People who develop an Impulse Control Disorder (ICD) due to a DA are likely to develop DAWS. It depends then whether your weight gain was due to a side effect or due to an ICD i.e. compulsive overeating.

DAWS is very severe condition and usually causes mental health problems and can last a long time, so I hope you have "normal" withdrawals, not DAWS.

Have you had any iron therapy? This is the only current actual treatment for RLS. The meds only give symptomatic relief. RLS is caused by iron deficiency and iron therapy deals with this cause.

Have you identified anything that might be making your RLS worse. This could be any one if a long list of medications from antidepressants to cough medicine!

It could also include dietary factors and any inflammation.

There are several other conditions that can exacerbate RLS e.g. hypothyroid, anaemia, diabetes, peripheral neuropathyand kidney disease.

I hope this does give you some ideas. Sorry if it's no help.

If you want any more detail on what I've written please ask.

Joolsg profile image
Joolsg

If you were on Mirapex and are now on Rotigotine, you will be experiencing Augmentation. I'm not surprised your GP has called you an 'enigma'. What they really mean is they have no idea what RLS is, how to treat it properly, or how to help patients suffering augmentation.The fact you have DAWS means you should not be on any dopamine agonists.

You have to slowly withdraw from the patch. If you're on 1mg patch, cut it in quarters and reduce by 0.25mg every 2 weeks.

You may need an opioid like Tramadol or Oxycontin to deal with the Withdrawal symptoms.

Medical cannabis is easy to get in the UK now but as you say, it's not cheap. I pay around £2 a day. Hopefully, as the results of the project are made available, more people will apply and the price will go down.

I'm working on a campaign at the moment which will ask for RLS to be taught at medical school and during the 2 year's GP training. Keep a look out on this site as I'll be posting about it soon.

in reply to Joolsg

Where in the uk can you get medical cannabis as i am having severe symtoms with opiods and trying to wean off them but withdraw symtons horrific also nights with no sleep and rls back awfull will try anything whatever the cost

Joolsg profile image
Joolsg in reply to

Twenty21 project. They'll treat it as a neurological issue but ask for a pain doctor. I speak to Dr Sunny Nayee at Hammersmith pain Clinic and hes prescribed cannabis oil ( 20% THC) for several RLS patients. I don't know if it will help opioid withdrawal. Klonidine may be better from GP.Here's link.

drugscience.org.uk/project-...

Hope it helps.

Lilcatfeet profile image
Lilcatfeet

If it’s any comfort to you, cannabis is legal here in Canada and I got it thru a clinic. It is for neuropathic pain but has no impact on my rls. I now find both caffeine and sugar are triggers and cutting back has helped. I sympathize with your dilemma and hope you get some relief soon.

Medical cannabis (or any type of cannabis) does not work for everyone’s rls.

A more reliable non-pharmaceutical treatment is Kratom but unfortunately it’s not legal everywhere. If you are minded to try it and live in Europe you can order it from suppliers based in the Netherlands. They ship it to most countries.

Magpie2016 profile image
Magpie2016

Hi

I have been getting RLS for the past few months due to bring on depixol inj for my mental health.

I'm not sure if this would you ...

But its has helped me a great deal but I'm not sure the mechanics behind this

But if I massage my lower legs with mustard oil then I get a good night's sleep

I usually pour some on my hand and rub both hands together and rub up and down on my one leg first. I then with my finger tip dig into my cf muscles going up and down my leg. I also do my ankles and my feet all over.

Once the oil is rubbed in all over I then with the palm of one hand push all toes together upwards as far as they go and then immediately down wards. I do this with my toes about three to four times on each foot.

I have to say I am getting so much relief from RLS and now I'm getting a full night's sleep.

I do this every night before bed.

It doesn't have to be a long process I only spend about 2 or 3 mins on each leg.

Hope this helps hun xx

Beechie2014 profile image
Beechie2014

I'm so sorry you are going through this, I myself have had rls for only 10 years and I can hardly cope!! Things that I have used without a prescription;*Vics vapour rub on your leg, works remarkably well when nothing else will.

*cold compress on your legs also adds relief when no medication does.

* cannabis-not medical as I didn't know this was available now in the uk.

Now not all work everytime but all worth a try. Hope you get some relief

Ranjits profile image
Ranjits

Hi dear I got Rls 30 years but now it’s getting worse I s now 71 year old I was on premipoxle six months ago I get rid of premipoxle because Augmentation after that I tried gabapenton for about 6 weeks was not helping me cocodamoL does help me but that got side affect like constipation tried pregablin now I am on Rotingine patchs legs are better but my skin is so itchy still on patchs waiting for hospital appointment see what they offering.praying for any new drug in market.

Knittingyahoo profile image
Knittingyahoo

I take ropinerole and gabapentin for RLS.

I make a cannabis balm of two indica based strains and one sativa. 10:5 ratio of thc to cbd. The strains I use have high levels of a terpene called myrcene. I add essential oils including arnica. (I am in Canada and have a prescription for medical use ... my doctors approve).

I also use a magnesium cream and take extra magnesium in a soluble tablet when it is bad because it absorbs more quickly when I drink it.

And I try to throw a solution at it as soon as it starts. Lying there and thinking it won’t get worse as you move and stretch and writhe in bed is deadly. Act fast. At the first twitch I try to hit it head on.

The other damnable thing is that what works for me might not work for you. It is hateful and I am sorry you suffer. I know this all to well.

BocaMom profile image
BocaMom

Soooooo sorry you’re going through this.

Just wanted to chime and say that I went to the time and trouble of getting a medical marijuana card here in the states and it did nothing for me.

If anything it caused weird acceleration of my heart beat and extreme anxiety. Have a feeling I’m in that minority who do not tolerate THC.

You are supposed to figure out which works best for you (Sativa, Indica, or a hybrid).

My next step is to see if I can balance it with CBD.

Anyway, just wanted you to know it wasn’t a panacea for me. At least not yet. And I’m skeptical it will be but will chime in again if I stumble across a “recipe” that helps.

Zurp111 profile image
Zurp111

Hello,I've part of your symptoms, as very warm legs all the time. I also wear less clothes to try to get my legs cold...

I've seen recently a phlebologist. He said that I have a venous condition, a lot of my legs veins aren't functioning well. Therefore he is going to cauterize them with some product.

Of course it won't stop RLS but it will be less strong because my legs are going to be less warm and swollen.

Keep hoping!

ESRDRLS profile image
ESRDRLS

Where do you go to find out more about the medical cannabis and how expensive is expensive. I scared to death cause I will be losing my regular insurance due to the fact I was on ESRD Medicare and then received a transplant and because I am not old enough to be on medicare til I am 65 (I am 60 now and only get 36 months of medicare coverage after transplant and due to a pacmaker put in and the pain Dr. I am g0ing to but may not be on any plan I can get on which means I will loose my opiod medication that is the only thing that keeps me alive wth my pain and "abdominal RLS which has gotten severely worse since my transplant and my anti rejection meds I must take for life which are very expensive also. I have also just found out that the government just passed a bill in december 2020 to provide the drugs for the kidneys because the medicaton would be cheaper to provide transplant patients then them having to pay to put patients that have a kidney shut down to pay for dialysis again with is way way more expensive. Medicare would actually make more more and there would be more kidneys available for people that can not get a transplant cause the kidneys are not available. Sorry about the ra nt. But for people that may need to know about the medicine by the way it is HR5534 and goes into effect January 2023.

ESRDRLS profile image
ESRDRLS

Can someone tell me if my post went thru or if I accidentally deleted it. I have a weird keyboard and I did not see my last post go thru that included kidney transplant and medication on the HR5534 effective Jan. 2023. Please let me know. Many thanks Many people with ESRD have severe rls. As I mentioned I have abdominal RLS.

ESRDRLS profile image
ESRDRLS

I am trying my best to figure out how to get around in here. I finally found where my long winded reply went. I guess the replys are put in order under your post by when they were written. Hope I did not put too much infor. I when to the medical Mar for rls. I have to find that two. Alot of good info even types of for which kind works best for rls and stress called Apricot Kush smoke and tincture. You can google it. I am gonna be doing some l chearning although I have to idea where to get it myself I have a friend that has access and very knowledgeable and can get things at times lets say. I don't understand why you can drink in a bar and get in your car and mow a bunch of kids down and then you cant do alittle kush and stay home and get the munchies and sit in your fav chair and stair at the wall or tv and get some relief!!!! Any other thoughts on thoughts???

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