Terrible RLS

[Alyson66]

I suffer terribly with full body RLS that lasts for day's at a time if I don't take strong opioid medication,does anyone else have it this severely and is there another option apart from opioids ? Thanks

[Madlegs1]

If opioids are not fully effective - then something else is setting the rls off.

What are you current medications , doses and for how long.?

Do you drink alcohol. Antihistamines? Antidepressants?

Let us know.

Cheers.

[Alyson66 in reply to Madlegs1]

The opioids do work but as you know the dose gets higher and higher,I take 35 mg of oxycontine a day and have 37 mg fentanyl patch a day,by the way I also have fybro and RLS is also a side effect but also have hereditary RLS.Obviously I am now totally dependant on opioids and really can't carry on living my life like this, worried in case I run out of drugs constantly then paying the massive price x

[lorrinet in reply to Alyson66]

I've been on opiates (Dihydrocodeine) for some 15 years and am only taking 30 mg more now than when i started. I don't understand why your dose is getting higher and higher? Is it the type of opiate? Have you tried any other kind?

[involuntarydancer]

That sounds terrible, Alyson. Mine is nothing like that bad. Would it be worth trying the vegan diet that Raffs found so helpful? His rls sounded really bad and now he is greatly improved.

I have been getting good results using dipyridamole. It’s very experimental as a treatment and not 100% effective but check out my posts about it.

[Joolsg]

Raffs has recently posted that he has found relief from following a vegan diet. Involuntary dancer has been using a blood thinning drug called Dipyradimole & someone else has been using Low Dose Naltrexone.

I presume you’ve tried the dopamine agonists? Or Pregabalin?

[Ruthless]

I was having some really bad nights with RLS until I checked out the fodmap diet and found a number of triggers I'd been eating. Have cut out most high fodmaps and am much better. You can google this as there are even cookbooks out now to assist. Good luck xx

[Cntrybabe1965]

I also have really bad full body RLS and my nights are very painful. I have no insurance and don't know what to do to get some relief so I can sleep.

[Tazmania1]

There is hope.. stay with us and read as many posts as you can .. there is an answer .my RLS was like having seizures every 10 minutes. There is also help at https//:rls.org.Check your meds - some aggravate RLS.Check your diet- iron and magnesium and vegan diet,low sugar.Check your mood- Zanax helps with anxiety and Wellbutrin helps with depression.Also lyrica can treat rls and fybro.Small doses of Zanax also helps opiate addiction,also treatment facility, and therapy.Check breathing snoring?- overweight? May need CPAP. Dopamine drugs in small doses help .My RLS is better...my treatment: Ropinerole small dose,Zanax small dose,vegan diet,exercise, therapy, Wellbutrin, CPAP,iron plus vit c, Relaxis Pad. Agressive treatment.

[Alyson66]

Thanks everyone,how can I come off opioids ? Is there anything else I haven't tried ? Had everything over the years,been through the prami argumentation, had tramadol,pregabalin,etc am so tired of living my life a slave to opioids x

[M_argi in reply to Alyson66]

Totally with you on that one , me too fed up of medications 😢I hope to be med free within the year ! Then I will be more choosy about treatments , i want to go down the natural route .

[Tazmania1]

Thats the opiates talking....Opiate addiction is a common dilemma now.Try a neurologist / physchiatrist...Lyrica can treat fybro and RLS .Your addiction can be treated with methadone .Your depression can be treated with Wellbutrin.Find the right combo of drugs.If not synthetic drugs find supplements.. try an endocrinologist.Also medical cannabis.

[Tazmania1]

I do not know the right things to say to you. I know that you are in pain. I know that you think your life is no longer worth living. No amount of advice I have can fully remove what you are experiencing. So instead, I will tell you a story. A teacher came into school one day and heard terrible , devastating news. She spent the rest of her day in mourning. One of the other teachers had given up hope and taken her own life.. She did not really know her well but she still mourned her loss. Several other teachers had to have counseling because of this loss.I know because that teacher is me.... and I know somewhere there is someone who knows you..and will be devastated. You may not even be aware of who will mourn your loss and have devastating sadness.So please don't give up.

[involuntarydancer]

Alyson, I did read a post on another rls forum by a guy who had a morphine pump installed. I don't know anything about the mechanics of it but it delivered a very small dose of morphine direct to his spinal column and he said the relief was complete. He was very, very enthusiastic. It meant that his dose of opioids was reduced to a fraction of what he had to take orally which obviously reduced all the side effects. I remember thinking it was an option I would consider if all else failed. I wonder, with your very severe symptoms, if it would be worth looking into?

The one other thing that I haven't seen suggested is an iv iron infusion. This is used habitually by rls experts in the US and Dr. Buchfuhrer will email you the prescription and protocol he uses so that you can take it to your own doctor. It might be worth a try.

I really hope you are feeling better.