New to group....need advice

[VickiAW]

Hi, I am new to this site. I just want to thank everyone for sharing their experiences, I don't know anyone who suffers from RLS like I do, so its nice to know there are others that understand.

I have had RLS since I was 13 in my legs and left arm. I had huge battles with my GP throughout my childhood saying it was just growing pains, but I knew it wasn't. It has always been uncomfortable and caused poor sleep but for the past year it has become more severe. I was referred to my neurologist in December 2017 who, after a 15 minute consultation, diagnosed me with Myoclonus and told me I was no longer allowed to drive. I was send for an EEG, blood tests, 24 hour urine tests, all of which came back inconclusive. I was then sent for a 3 day stay in hospital for another EEG (results come back on 20 June). After this I was prescribed Ropinirole, starting at 0.25mg and increasing over time to 2mg. Unfortunately I had nasty side affects and was taken off them after 3 weeks.

I spend approx. 5 nights a week with the spider crawl in my feet, burning in my calf muscles, pain, twitching and sleeplessness caused by RLS and its getting me down. Two nights this week I have only had 1 1/2 hours sleep and 4 hours the other nights...this is disturbed sleep due to the pain. I've spent countless nights crying in bed rubbing my legs and arms trying anything to alleviate the symptoms. Is there anything else I could take instead of the Dopamine? Im so exhausted during the day that I find it hard to concentrate on anything, this has caused a severe lack of self confidence resulting in me leaving my job. I also get the burning sensation in my legs when I need to pass urine...is this normal for RLS??

I hope you don't mind my long waffle and questions, but ive got to the point where I don't know what to do.

Wishing you all well

[Madlegs1]

I really don't think this is rls. Did the Ropinerol actually relieve the symptoms? If it didn't,despite the side effects, then I would be sure in my assessment.

Ultimately,the only definite relief for rls is opiates. That has been the case for 300 years.

Get them to try you on Tramadol or oxycontin for a few days. That would sort something out.

Cheers.

[VickiAW in reply to Madlegs1]

Hi, thanks for your reply. Yes the Ropinirole did relieve my symptoms.

Can I ask you why you think my symptoms are not RLS. Desperate to get this sorted!

[Madlegs1 in reply to VickiAW]

It seemed too severe for rls without augmentation. However,if Ropinerol succeeded, then maybe it is.

Opiates are still the only effective treatment.

[hazelrobson in reply to VickiAW]

Main point to remember is we are all different - to date I have been on three different drugs each helping for sometime - when anything stops working go back as there are other options.

[Joolsg]

Hi Vicki

Go back to your GP or the neurologist. You need to be on meds as the RLS sounds quite severe.

There are other options including gabapentin or pregabalin or opioids like Tramadol or Oxycontin.

Do not give up on treatment as there will be a med that doesn't cause side effects for you hopefully.

[Parminter]

Waffle away Vicki. You are in trouble, but many of us have also done a lot of crying, and many of us have seen our lives drip down the drain as yet another sleepless night and hopeless day goes past. It is very hard. We get it.

Have you had your ferritin levels checked? If not, start there.

The dopamine agonists are nasty, but they are a tool for diagnosis. I think that was a big dose to start with, and 2mg is getting too high anyway. Augmentation is a real problem.

It is possible you augmented fast, making everything worse. Here is a good paper on augmentation, which seems to make clear that in 5 to 10% of patients it can happen immediately.

The paper is from the RLS Foundation, the most impeccable credentials you can find.

Come back to us with your ferritin levels.

rls.org/file/what-is-augmen...

[VickiAW in reply to Parminter]

Thank you so much. I've got more understanding from this site than from any doctor or neurologist I've seen!! Wishing you all well

[leatrix]

No real advice but I do know what you’re going through. I remember the very day when my mum took me to the GP at 9 years old and was told the same that I had growing pains and I knew then it wasn’t the same at all. Your evenings sound like mine and yes when I need the loo my RLS always gets worse. At night the other thing I’ve found that gets me through the night is wearing headphones with music on and having a fan oscillating over my legs (can’t tell you the amount of headphones and fans I’ve gone through throughout the years 😄) but it’s the only way I can sleep now. hope that helps some x

[VickiAW in reply to leatrix]

Thanks Leatrix,

Feels like doctors just don't listen!!! The last two nights I've slept with the window wide open to help keep my legs cool. It's not stopped the RLS but I think it helped a little for my legs but made my left arm much worse!! Weird.

Wishing you well 😁

[darena]

You could have been describing my RLS!! I bought a Relaxis pad and it actually worked. It is a vibrating pad which delivers counter stimulation and was designed by a doctor who had RLS. Please give it a try. The folks at "Relaxis" will guide you. Daren

[VickiAW in reply to darena]

Ooh that sounds interesting, I'll look in to it. Give anything a try if it helps ease my legs.

Thank you

Vicki

[darena in reply to VickiAW]

Good Luck Vicki. Talk to Carl at Relaxis and he wi guide you. Be patient for the first week or two. Darena

[darena]

I had miserable nights like yours. A litany of drugs didn't help. I finally bought a Relaxis pad after years of misery and it worked. This vibrating pad was designed by a doctor who had RLS. It works by counter stimulation. Please give it a try. For me it was a miracle.

The folks at 'Relaxis' are extremely helpful.

Daren

[darena]

Please don't go the opiate route before trying the Relaxis pad. Daren