MY LIFE WITH RESTLESS LEG SYNDROME

[Mrappleton]

Diagnosed about ten years ago but seems longer than that. Doctor put me on ROPINOROLE stating it was still experimental as not much was known about RLS. Told me to check online if I didn't believe him. At the time the only feeds were to America, so glad to see it is now recognised seriously over here.

Symptom 1 ...twitchy jumpy legs...playing football or auditioning for Riverdance ...ANNOYING

Symptom 2 ...itchy bones ...feel like the bones are itching right in the centre where you can't scratch ...IRRITATING

Symptom 3 ...hot feet ...feel like you could fry an egg on them they are that hot ...DEPRESSING

Symptom 4 ...leg and feet cramp ...starts when I try to stretch legs to feel more comfortable ...PAINFUL

Spent many nights walking on cold floors, doing a funny stomping type walk ( much to the amazement of my dog...thinks I'm mad). As I said I am on ROPINOROLE, swapped and changed and finally found 3mg seems to work most nights.

Like a post I read last week, at times you do feel like cutting your legs off, that's how depressing it is, people without this should look into it, then we may get some sympathy instead of being screamed at for jumping about in a bed.

SYMPATHIES TO EVERYONE AND LOOKING FORWARD TO A GOOD NIGHTS SLEEP SOME TIME IN THE NOT TOO DISTANT FUTURE.

[Carcol92]

I've was diagnosed with Rls roughly aroun 10 years ago. I take a drug called imipramine. I can honestly say it's slowed down the attacks of Rls but wen they occur I end up having a horrific night. Usually keeping my husband awake. I'm exhausted at the moment coz I've not slept for 1 night and it's back again tonight. Last night it was in my arms which I hate with a passion. I really wish I could chop them of. One thing that I've discovered is going on my crazy fit vibration plate helps with Rls in the legs. I go on it for 10 mins with the speed set high on 40. 9/10 times it gives total relief. Hope this helps. Good luck with getting some sleep x

[Mrappleton in reply to Carcol92]

Thanks I'll try that...nothing ventured gained

[Carcol92 in reply to Mrappleton]

Good luck I hope it helps for you. X

[Pippins2 in reply to Mrappleton]

Imipramine is not recommended for RLS as it is a tricyclic antidepressant which will make symptoms much worse for the vast majority of us. ..Pipps

[sargrith in reply to Pippins2]

So true. I had been taking imipramine for very many years until 2 months ago when I had a horrendous night of Restless leg and body attack when through my twisting and turning reaction I damaged back muscles. I then stopped taking the medication. After further back injuries and going on Tramadol which was a great pain prevention drug I then came off this medication experiencing most unpleasant withdrawal symptoms. I then started back on Imipramine 3 days ago and am having most unpleasant symptoms ,particularly with Restless leg.There's no doubt imipramine is the cause of this.I'm kept awake until early morning and then sleep into the afternoon .I don't know what to do given the lack of sleep causing extreme tiredness I'm getting desperate What can I take that doesn't interfere with the action of Imiprimine

[Hidden in reply to Carcol92]

What is a fit vibration plate? I need something, so far nothing works.

[3420 in reply to Carcol92]

What is a crazy fit vibration plate?

[Mrappleton in reply to 3420]

It's one of those big things that stand in the corner, all the rage a few years ago for burning off excess fat and toning the body.Wife says it works but have never tried it myself.

[Mopsy1950 in reply to Carcol92]

Hi carcol92. what is a vibration plate could you explain please any things worth a try

[Carcol92 in reply to Mopsy1950]

Hi a vibration plate is a machine you stand on the plate vibrates. You control the speed. I've found that setting mine on 40 (fast) for 10 mins the vibrations ease the RLS and aid me to have a good nites sleep. It was my husbands idea to try it as he thought RLS had something to do with circulation. Have a look on Google or YouTube. I know a lot of gyms have these machines. Mines a crazy fit. Hope this helps .

[Mopsy1950 in reply to Carcol92]

Ah ,,I know hired one years ago to try to tone up didn't work though , so it works for your legs ? There's something out now you put your feet on and that vibrates has anyone tried one of those been out a few years but don't want to waste money if they don't work

[Carcol92 in reply to Mopsy1950]

Is that the Relaxing? ? I was reading about it earlier.

[Carcol92 in reply to Carcol92]

Relaxis sorry. Predicted txt

[Mopsy1950 in reply to Carcol92]

they advertise it on tele here it is round and has a place where you put your feet about the size of one of those robot vacs

[Carcol92 in reply to Mopsy1950]

Yes I think I know what you mean. I bought one for my mum to help with her circulation, but I've never tried it. My mum suffers from Rls also and I have told her to try it when she struggles. But as yet I don't think she has. I Will ask her and let you know if it worked for her.

[Mopsy1950 in reply to Carcol92]

Yes please ,you should try it as well

[Carcol92 in reply to Mopsy1950]

Hi mopsy

My mum tried that little machine I bought her. It has all different settings. she set it on circulation and got some relief. One leg gave her a bit of pain during the nite but nothing to bad. I told her to keep using it and keep me informed. Will keep you updated.

[Mopsy1950 in reply to Carcol92]

That would be good. Cheers

[Mopsy1950]

Mrappleton hi there are a lot of us THAT do feel for you it's not fair,,, there's no way you can explain what it's like ,and no one does understand unless you have it yourself just wish there was more help available in the meantime will send you hugs like everyone was sending to me when I'm on a downer ,just remember there are people out there that can at least give you comfort

[Hidden in reply to Mopsy1950]

I agree with Mopsy, I've had it my whole life and still can't find the word to describe the pain, discomfort and the overwhelming feeling of despair!

I have tried to explain it to hundreds of people and the closest I got to understanding was:

"Aye my legs go a bit like that sometimes when I'm on along journey".

F**K me; my legs, back and arms are like that most days and to a degree of intensity people could not comprehend, the pain when it is bad has me rolling on floor and take into consideration I'm on very strong pain drugs - when I didn't have them I prayed for death - literally!

I've given up trying to explain as I only get annoyed when some prick then turns and says 'put soap in your bed' - a Dr quizzed me as to why I refused to do that, I told him when he produces the evidence I'll do it, (this is the same fella that told me cannabis had no medicinal properties!!).

So if the medical profession cannot see the damage the sleep deprivation, inability to rest and pain is really doing lay people aren't going to.

Stick with people who know and care - you'll be grand here

Take care.

[Mrappleton in reply to Hidden]

Thanks to all of you fellow sufferers out there,as you say trying to explain it... probably have more luck teaching my dog to speak Russian.

[Hidden in reply to Mrappleton]

что было бы легче!!!!

[Mrappleton in reply to Hidden]

Just showing to dog to see what you said... GREAT

[Pippins2 in reply to Hidden]

Raffs you show off Russian! Lol

[Hidden in reply to Pippins2]

Is that Russian repeatable to tell us what it means in English...! ?

[Hidden in reply to Hidden]

It means:

it would be easier

in reference to teaching a dog Russian than getting people to understand you.

[Mrappleton in reply to Hidden]

My dog says yes that's right....

[Mopsy1950 in reply to Hidden]

Right on raffs

[CPL61]

Ahh, 'a good night's sleep' - those were the days...a distant memory now, but we can always hope

[Pippins2 in reply to CPL61]

I had very severe Primary RLS and with my med combination i have a good nights sleep 95% of the time so there isl hope.Without meds i would have raging RLS every afternoon/evening/night.

[Tazmania1 in reply to Pippins2]

What are you on and dosages please.

[Pippins2 in reply to Tazmania1]

Deblocklear I use 1mg Neupro patch (a dopamine agonists ), 150 mg Pregablin ( Lyrica ) and a tiny dose of slow release Morphine for spinal problems. .Pippins2 x

[Windwalker]

Mrappleton,

You are certainly not alone in the world, but it feels that way when you are up at 2 am and have the sensation you cannot describe to anyone except fellow sufferers.

I started off in 2002 with maripex which worked well until I lost a great deal of money because of excessive gambling. I was then switched to ropiniprole and now am in excess of the maximum dosage just to be close to normal.

It gets worse and you have to find a doctor who knows how to do it to help you quiet down.

[sargrith in reply to Windwalker]

You need a Harley Street specialist in the subject.But t here is the cost involved

[Insomniak]

Regarding using vibration to help with RLS symptoms I bought a TENS machine about a year ago and have found it very useful. You stick on the pads and turn the current up and it makes your muscles pulse as if you are exercising. It means I can lie in bed while my legs exercise themselves. I put it on a 30 min timer and, if I am lucky, I have fallen asleep by the time the 30 min is up. I should add that I also use Ropinrole and my big breakthrough in the last year has been accessing the 24 hr slow release version (Requip Modutab) but, on occasions when I forget to take it, the TENS machine is my safety net.

[knitknax58]

Hi Mrappleton, i was just reading your post as i am interested in people using Ropinorole. l was told about this drug by a friend who knows a gentleman who has used it for RLS and now for Parkinson's disease. l am on Clonazepam which was ok for years but lately it seems to have lost it's way for me. l was thinking about seeing my GP to ask to try Ropinorole to see if it would help a bit.

[sargrith]

I agree. restless leg syndrome is far from a joke. I found that taking imipramine has been a factor with restless leg syndrome. I left the Imipramine off 2 months ago as a result.However I am concerned being without the medication and am now starting them again and along with various effects it brings short term, such as lose of appetite,diarrhea and having low moods.

Restless leg is stopping my sleeping nightly I eventually sleep early morning.

When I went on Imipramine very many years ago it was the answer to my anxiety problem. Now however it is a factor with the RLS. So either I've changed or or imipramine has.

[PurpleDragon69]

I have extremely severe RLS that not only affects my legs, but my arms, neck & head as well. I've been battling RLS most of my life. My family doctor put me on time released Ropinerole (Ropinerole HCL ER 6mg TB24, 1 tab at noon) about 2 years ago, out of desperation on both our parts, & FINALLY I have gotten enough relief from my RLS I can actually catch a night's sleep here & there. Occasionally I have to take a second tab before bedtime. I also take 3 tabs of Carbidopa-Levodopa. Before that I was having a flare almost every night & seriously considering ending my life because I had no quality of life left. RLS was taking more than half of my day away from me. My flares were lasting sometimes 12-18 hrs leaving me seriously drained. And my hope along with it. I've not found anyone else who has ever taken time released Ropinerole, but my experience for the most part has been positive. The only drawback is that Medicare will not pay for time released Ropinerole & I have to pay full price out of my own pocket. But for me it's well worth every penny. Unfortunately, I live in a state with extremely strict laws governing opioids & I have not been able to find a doctor that can (or will) implement low dose narcotic therapy, so the time released Ropinerole has been a God sent to me! You might ask your doctor about time released Ropinerole. All that you described I've experienced as well & then some & my heart goes out to you because I KNOW the hell you're going through. I don't know if I've helped you, but hopefully it's provided you with an avenue to pursue in obtaining relief & I fervently pray you find some relief.