How can I get some real relief from this RLS torture?

[feetgrind]

I am pleased , but also envious, to see that many people have benefited from medicinal marijuana. I finally managed to obtain some THC/CBD oil here in Sydney in the hope it would help me get off Pregabalin which is no longer working for me after many years on 300mg nightly, but I have found that, not only does it seem to aggravate my IBS, it is useless for my RLS which is secondary to long term Peripheral Neuropathy and therefore apparently hopeless. I am being tortured day and night and am usually still sitting up at 4 or 5 am quietly sobbing (heaven forbid that my misery disturbs my family) and am getting seriously depressed. How hard is it to find a member of the medical profession who will really listen and offer some useful options? Apart of course from Dopamine Agonists which I won't touch. Apologies for the length of my rant but, as you can probably tell, I am truly desperate (and miserable). 😭

[SueJohnson]

You could still increase your dose of pregabalin up to 450 mg if 300 mg is no longer working.

[Happyfriday123]

I think the non-medication options are somehow limited for a person because we all react differently to alternative methods. THC doesn’t help me either. I still have some stuff at home but don’t use it, it just makes me dizzy. I am now starting again with yoga and relaxation techniques. There are studies that show that regular yoga practice can help a lot to reduce RLS symptoms. There is also an interesting study that shows that selenium could help reduce symptoms significantly… I’m starting to feel like an idiot because I literally try everything…. But never try never know… Even though I’m using dopamine agonists I’m super desperate as well.

[Joolsg]

If pregabalin has stopped working you could increase it slightly, as Sue has suggested. If that doesn't work, you could try low dose opioids. Targinact or low dose Buprenorphine.Also ensure your serum iron and ferritin levels are above recommended levels for RLS and you're not taking meds that worsen RLS like anti depressants, sedating anti histamines, statins, beta blockers or PPI Inhibitors.

[Butterflysun1]

I really feel for you and in quite a lot of ways we are similar. I wouldn’t take a DA either. I found Pregabalin worked for several years then the effect wore off. Are you still taking it? I found the side effects precluded me from increasing the dose. I also have a suspicion it caused augmentation. ( others dispute this).I came off it very very gradually.

I too have long term peripheral neuropathy & feel we have a double whammy as it also runs in the family.

What is the cause of your neuropathy.

I think Drs don’t have a clue as it isn’t taught & is a specialist field. This site is brilliant for up to date info & support.

I do have a GP who listens but there is only so much possible.

So, like some others have said, make sure you are on no tabs which will make it worse - a list’s on this site but the common ones are antihistamines, antidepressants and heartburn meds like omeprazole which is a pain as needing these are common.

I don’t know if iron is relevant if your only cause is peripheral neuropathy but you could be like me & have 2 reasons for it.

I do think some foods are triggers but I have yet to work out what mine are - common triggers are sugar & I think bananas & icecream affect me.

I don’t know what your personal circumstances are but I often sleep during the am when it is such bliss to be able to stay still. It is almost just worth it for the pleasure of being able to stay still! It means at least some sleep is possible though it is hard not to feel stupid & explaining to others who don’t ‘get’ it is hard.

My neuropathy starts being painful in the evening at the same time as the restlessness begins to kick in. I find 30mg Codeine helps for a bit.

I strongly suspect that low dose stronger opiates will help like for non neuropathy RLS. It is now in the Mayo clinic guidelines - there’s a link on this site & worth showing

your GP. I worry about long term consequences but the word is these are less likely to occur with RLS.

Just now I am trying Dipyridamole off licence as there was a recent research paper showing a positive effect which I sent to my GP. Jury’s out for me so far but been on less than a week.

I also try to hold onto hope for the future & new research though I share your desperation too.

[Jumpey]

I feel for you .I think most of us have felt desperate with this condition. I would try an opiate. I have taken them for many years successfully. Firstly codeine then tramadol and now morphine. I have always kept the doses low.The body does eventually become tolerant.Hence the change of meds. The main side effects are constipation and nausea. I only get the latter with morphine but it is usually gone by the morning and isn't severe.Huge good luck.Hang on in there. You will find something to help.x

[SueJohnson]

What other medicines are you taking?

[Eryl]

Have you tried changing your diet? A number of people including me find that reducing carbohydrate intake beneficial, especially refined high GI foods. I have completely eliminateed my RLS by this method alone. I avoid any food containing refined sugar and most foods containing refined starch esp white wheat flour.

[Aetje]

I know what you going through last night was not worth living after to many tablets magnesium gel hot and cold showers till ten past four am release for an couple of hours. I use dopamine Targin and pregabalin but after three years it does not work all the time. Also the heat here in Perth does not help.Hope you will find the will to keep on going.

[ChickenTwisty]

I see suggestions for opiods. In Australia the ONLY opioid indicated for RLS is Targin (so will get PBS price). Once on that and if not working (or is not working sufficiently, as was my case) and you are unable to stop taking the Targin (because you are addicted/unable to cope with increased pain) then you can be prescribed buprenorphine at PBS price to help you get off the Targin.

Now whether you can ever stop both the Targin and Buprenorphine and replace it with something else is the area I am now exploring (I was always on a Dopamine Antagonist when they trialed other medications, I was advised to keep taking pramipexole until the new medication cover your symptoms ... which for me never happened and from reading on here seems I was advised incorrectly and should have ceased the DA or at least reduced it before trying a new med).

Buprenorphine has been great for me, however at 10mg patch (which can't be compared in strenght on a one to one basis to a tablet) it isn't quiet enough to deal with my evening symptoms, but enough to get 4 to 5 hours night a sleep without any other medication (THC for me takes 10 minutes to work and gives me less than an hour sleep).

[JWBe]

Most of the time, I calm my legs using binding agents, which are typically used when chelating toxic metals. My "cocktail" contains charcoal, Microsilica, chitosan, Pectasol C, bentonite, enterosgel and zeolite, mixed in hot water to dissolve. When I feel the RLS come on in the evening, I drink one. Usually, this is enough but sometimes I need another. It usually works very quickly.

[Teapot1966]

Hi feetgrind - I’m sorry to hear sbt the struggle with restless legs. I’m very fortunate only to get the odd attack here n there maybe 5 times per year ….

May I ask do you get every single blood checked (all vit / min levels) could something else be amiss ?

Also any other possible medical reasons ? Get yr dr to think about a full check up or get referred to a specialist if you can

I’m lucky enough to be able to settle with extra iron meds when mine starts and a thought - have you tried a weighted blanket to relax your legs a bit plus iron etc - I’m sure you havd and are probably pulling hair out jn frustration at my message for which I apologise .

Sometimes changing meds to non medical ideas might help but you’ll need to do that under yr dr guidance or total change of meds to something that treats multiple issues ?

All the best and I do hope you find some relief from the misery of it all , x

[feetgrind in reply to Teapot1966]

When I first saw my current neurologist he ordered every conceivable blood test but lost interest after that and, when I refused his push for DA's, took the line that I should stay on Pregabalin. Useless! I am still waiting to get back to the Pain Clinic, hoping they will consider a low dose opioid and that I will not break down completely before then. To those who push the dietary option - I am already greatly restricted by IBS, the irritation of my family at the dietary restrictions this imposes and by lack of mobility preventing me from going shopping, ie not exactly flexible. There might be one night a week I get more than 2 - 3 hours sleep and this has been the case for years. Apologies again for the rant but, if it stops me throwing myself down the stairs, I hope you will understand. Knowing my luck with all the weight have put on with Pregabalin I would just roll and be unhurt😒! On the plus side some yoga stretches do seem to help a bit.

PS: I have reservations about the blanket as I am claustrophobic and hate being restricted or confined, and also find that my feet are worse in the heat. Thanks everyone for your suggestions and I hope you have more luck than I have as I seem to have run out.

[TeddiJ in reply to feetgrind]

Feetgrind: I have been in your desperate shoes, as most of us have. I ordered Kratom powder online after finding out about it here on the forum. It works like an opioid, and very quickly after taking it your rls is gone-at least for a while. You can also get it in various shops.

It's not a perfect solution, although many think it actually IS one, but you will definitely get some relief while waiting for your appt! I was cut off from an opioid abruptly and the kratom took its place while I waited for new appts. and solutions. I still use it sometimes.

I've never heard of kratom NOT working for rls.

Hang in there-I know-it's super brutal!