Hello and help

Hi all.

I've had rls since I was probably about 12, with it getting far worse in my late twenties. I'm now 32 and it's an evil condition plain and simple.

Some of the things it's caused me to do have been ridiculous, like the time I went away on a course and forgot my tablets. I tried to get blind drunk to pass out, didn't work, so self presented at A&E to try and get some meds. They weren't interested.

I'm on 60mg of dihydracodiene and 350micrograms of pramniprexole. This combination works most nights, but it's not an ideal combination of drugs to be taking for over two years now.

I've seen doctors and neurologists etc, had bloods and iron tested, with no effect. Also had scans and tests on my legs with nothing coming back.

I'm reasonably fit, don't smoke, rarely drink, go to the gym regularly and eat healthy.

Without the drugs I cannot sleep, not even a minute. I have spent many a night pacing the house, tearing my hair out.

I'm interested to know who else is out there in the same position as me and their experiences.

6 Replies

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  • Hi Dantheman2910, I think you'll find many of us on here in similar circumstances. I've had it from before I can remember and it effects my whole body now :( I am currently reasonably well maintained on Targinact, Neupro patch and Gentle Iron, (taken in evening and on empty stomach).

    Nice one landing at A&E loaded looking RLS meds :) I'm sorry but I am sure the nurses thought they had gotten a real loon, (not making light of your suffering though I know only too well how horrendous it is just the situation). Man when it is bad it is bad!

    If you check some of my posts you'll find out about Kratom which is worth keeping as an emergency stand-by.

    You're very welcome to the site btw.

  • Sorry to hear you are living with the nightmare of rls and I wondered if , as you are already prescribed dihydrocodeine, you have considered upping the dose. I take 1 x 60mg of dihydrocodeine continus morning and evening and this keeps rls at bay most of the time. Hope this makes sense as it has been a long night without sleep but thankfully with calm legs.

  • I agree it's a terrible and very underestimated thing to have I went to Tenerife one year and forgot my pramapexole! I had to wait 2 days b4 chemist could get them for me I had 1 hour sleep the first night I was wandering around the hotel dipping my legs in the pool the second night the same I was crying most of the night! I even fell asleep standing up next to the wardrobe!!! Unless you have it no one realises the seriousness of it!

  • Welcome Dantheman,

    You'll find most of the people on here know what you are going through. None of us wants to be on the drugs but we know it's the only way to get any sleep. It's a horrible disease, made worse by the lack of knowledge most doctors have and the lack of help/research.

    Maybe if Bill Gates had it we'd see some properly funded research and a solution.

    Hope you get some sleep over Christmas.

    Jools

  • Hi Dantheman, I think everyone here on this page has experienced what you're going through, it's sad that we've been dealt this bad card from the deck, it's a retchett desease but unfortunately we have to learn how to live with it. Personally i feel very lucky to be on this page because the people are more knowledgeable here than most doctors. Have you ever tried TRAMADOL? That's what I use, again, I always say, what works for one doesn't always for the other, I've been on it for the past SIX yrs., I got RLS from a high dose of Benadryl injected due to a drug reaction while getting an MRI, I didn't know what was happening but the first touch of RLS was FULL BODY and I thought I was going to go mad. I went to a neurologist and was put on Gabapentin, no luck and gained 25 lbs in a month and a 1/2. I was prescribed TRAMADOL for something and that's when I found that it was like a miracle pill for the RLS. If you're not familiar with TRAMADOL, it's the one med that causes the least augmentation and is pretty safe to take for your other organs. I'm on a 50 mg pill which I take at 5:30 pm, then I take another 50mg pill at 11:30 pm before bedtime. I found the trick to RLS is to be a step ahead, never let it get to start because even when you take your meds, it takes longer for them to kick in if you give the RLS a chance to begin. I found that through making mistakes and taking my meds once the RLS had started, then I would suffer for about two hrs. before getting any release. I also keep a bottle of magnesium oil, it doesn't take away the ugly feeling completely but if you rub it on the legs or arms you get a feel of relaxation. Good luck, I'm sure you will get some great advice from others here.

  • Forgot to mention that TRAMADOL does cause some lack of sleep which I really don't mind, I much prefer being awake as a punishment but without RLS and I just lay in bed totally relaxed and hopping to get some zzzzzz, 's. Usually after about two to three nights if broken sleep I'll get a good full night, the other good thing about TRAMADOL is that you don't have a heavy head the next day, if I get sleepy during the day I just take a little nap and I'm good to go, BUT, I'm free of RLS. I feel that nit sleeping well for a couple of days is a cheap price to pay for not having that maddening feeling.

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