RLS : Hi I have had rls for many years... - Restless Legs Syn...

Restless Legs Syndrome

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RLS

bodiekim profile image
12 Replies

Hi I have had rls for many years, my doctor has been treating me for over 10 yrs I have exhausted the medication that the doctor can give as after awhile they didn’t work, the last medication I was on was the nurpo patches I started at 1 mg then two mg and 3 mg I they were the best for a few months then I had a really bad reaction to it my skin blistered even when I went out and it wasn’t sunny the doctor gave me some steroid cream, that helped for a bit. I was then referred to the hospital they have now given me 30 to 60 mg of codeine but didn’t work even the maximum back to my doctor, he gave me some sedatives to take with it 30 to 60 mg which I am now on maximum, started well for a couple of nights, now up most nights from about 1-30-2-30 NO FUN.

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bodiekim profile image
bodiekim
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12 Replies

How long is it since you took the Neupro patch? It can take many months for the body to return to normal after augmenting on dopamine drugs.

Hey again!

Ok, now I see. You're not on neupro anymore. Are you on a med. for RLS or just codeine and a sedative?

Madlegs1 profile image
Madlegs1

Sorry for your situation - you have been really messed up by the med teams.

What sedatives have you been given?-many of them are extremely bad for rls-Amitryptoline in particular- often mistakenly prescribed for rls relief.

Check out "Augmentation" on this site and in Google for explanations and suggestions for where you find yourself.

Good luck.

bodiekim profile image
bodiekim in reply to Madlegs1

Hi they gave me phenergan (uk) it’s an antihistamine and it’s non addictive.

Pippins2 profile image
Pippins2 in reply to bodiekim

It will make RLS much worsefor the vast majority of sufferers. This shows that the doctor is not well informed about RLS. Go to the RLS -UK websiteand read up on which meds to avoid. Maybe ask for Tramadol to help. Have you tried Tramadol ,Pregablin or Gabapentin? X

Joolsg profile image
Joolsg in reply to bodiekim

AS Pippins has stated, phenergen and most anti histamines will make RLS worse.

Your GP should now consider opioids like tramadol or oxycontin or pregabalin or small doses of both.

Go back, armed with this info and ask for different meds.

Good luck

in reply to bodiekim

As the others have said the Phenergan will drive your legs up the left - I used to get the OTC sleep aids to try and fight the RLS but they always made it worse as they use sedative antihistamines and they are terrible at increasing RLS as are antidepressants and a whole host of other drugs.

Keep an eye on diet as caffeine and sugar are often culprits in the severity of RLS. You could maybe consider gentle iron taken in the evening as many of us get good relief from that, (search using the search function in top left of page for plenty of info on it).

Take care.

Lolly53 profile image
Lolly53

Your experiences of exhausting medications is my experience also. It's a scary place to be. I currently take Temazapam to get to sleep, Lyrica for general relief of arthritis and RLS (it has been wonderful for me) and I have recently discovered CBD oil which is taken orally. When my body awakens me in the middle of the night (like right now it is 2 am), I take 15-30 mg of CBD Oil and I will be able to go back to sleep symptom free in a few minutes. I recommend researching CBD and trying it out. It works for some of us. Blessings!

Eryl profile image
Eryl

Some people have found rls to be food related. If yours is, you may not need meds. I've found my rls to be triggered by an artificial food preservative (E202) and recently by high intake of sugar. Finding which food ingredient is a long process, with many wrong moves, especially if you have multiple triggers, but is worth it in the end.

Graham3196 profile image
Graham3196 in reply to Eryl

Hi I have found that RLS is very definately food related in ME and apparently in some other people.

There is a scientific approach to determining what food groups affect you. Its still a slow process but well worth the result. The foods I cant eat all sound wonderfully healthy and you are very unlikely to pick them first try. Beautiful rosy apples, pears, onion, tomato too many ripe bananas - slightly green are OK but not too many etc.

If you like I will PM a list of things to try before you try drugs. I dont want to post it here because it's long and I expect many of the regular members have seen it enough. Its a dynamic list and we should add to it regularly. There are many things on the list and you can try most of them at the same time so it only takes a few months to exhaust all these suggestions. I think each suggestion on the list has found one group of people who believe it helped them. Many are simple things and if it means the difference between sleeping and not then why wouldnt you try them?

Let me know if you want the current list and I will try to send a private message

Cheers

Graham Revill

Spookydave profile image
Spookydave

Sorry to hear your struggles at least the doctor is trying for you

On my posts you will see me pontificating about magnisium ..

I had no confidence in it as I thought only "proper" medical drugs could touch it but well it's fixed me 🤔

Currently on boots magnisium tablets , they say take only 2 but I take 3 before bed and no rls symptoms touch wood 🙄 it was an instant fix .

If you do try it will you let me know how you get on ?

Yorgi1950 profile image
Yorgi1950

Bodikim, I had RLS for about 20 years but found something that completely stopped it. Don't know if it will work for anyone else, but it's worth a try. I bought a magnetic mattress pad that stopped my RLS the first night I tried it, and RLS has not returned in 25 years. Go to promagnet.com and check it out. They have a 45 day return policy if it doesn't work for you, so all you would lose would be the shipping cost. Anything is worth a try to be rid of this horrible condition. Let me know if you decide to try it, and if it works for you.

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