Just found this site tonight

I have only found this site tonight, after searching for any information on RLS! I started with it 6 years ago after the nightmare birth of my last child! (not sure if there is a connection) I started off having it in the evenings, usually after sleepless nights with 2 young children or after alcohol. I now have it 24hours a day in my legs, arms & hands, I am currently taking 7 ropinrole per day, I have been going to the doctors with this for a year now. I space them out throughout the day as my symptoms are constant. it dulls the sensation slightly, but not enough for a decent nights sleep. As I have mentioned, I have 2 young children (6 & 7) and work in a busy day nursery, I am just about managing to keep up with work & home, but feel the last 12months have been a blur of going through the motions (and a lot of tears of frustration). I was referred to a neurologist in may, but haven't had an appointment through yet! I'm glad I found this site, as it is almost impossible to explain to non-sufferers exactly how all consuming it is...if 1 more person tells me I just need to put my feet up and relax I think I'll scream! My husband I think is the only person who really understands, as he sees how distressed I get, he has been a rock. Nice to find a place to talk to people who understand.

13 Replies

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  • glad you found us, but sorry you had to, and welcome :)

  • welcome :) as niah said sorry you had to , like you i found this site by searching for info sooooooooooooooooooo glad i did it's been a god send :) :D somewhere you can let off steam and know everyone knows what your on about ,

    sal :)

  • As a fellow sufferer I do sympathise and understand how you must be feeling - it can really get you down at times. I used to spend the night just walking around the house, and then I discovered Pramipexole. They certainly do help me - not a miracle cure but they help and do enable me to get some sleep.

    Do you think it would be a good idea to chase up your consultant appointment. I say this because my husband was waiting a long time for an appointment with regard to something else and when he tracked the secretary down, found he had been overlooked. Might be an idea. Or even get your GP to look into it.

  • I have tried all sorts of different medication during the last yr, but ropinirole seems to be the only 1 to suit me, of a fashion! I phoned the neurologist today, I'm 10 weeks into a 19 week waiting list, so atleast I'm in the system! I didn't get any sleep at all last night, so had to take today off work :( I did however, after taking too many nytol get a whole 6 hours sleep today! So am feeling a little more human! Thanks for your reply

  • Hi cherrytree,

    like you you I was delighted to find this site. RLS is a very distressing condition. May I ask what the dose of your Ropinorole is ?. The absolute maximum for RLS is 4mg. if the dose is higher it can cause something called augmentation. This is a worsening of the symptoms that your taking it for.

    Ropinorole is also available in modified release tablets, so the drug stays in your system all day with only one tablet. It must be wearing having to take 7 tablets a day.

    It is frustrating when well meaning family tell you to relax, get more exercise or do stretches and that will make it better, when we know that we'er doing all we can to live with it. The lack of sleep is absolute torture it makes it very hard to cope during the day.

    Like you too I waited a very long time to see a neurologist. Miy RLS is better than it was but my sleep is still very disturbed. I never get more than 2 hours at a stretch, but I can live with it, just.

    Nice to hear from you. It's a relief to contact others that understand.

    Lea

  • Hi Lea

    The ropinirole tablets are 250ml tablets, after reading about augmentation last night, I have only taken 2 so far today, since may 4 tablets per day had been working quite well, then a week in pontins with the kids, (where the bed so was uncomfy I couldn't sleep) It seemed to kick off a bad spell, which became a vicious circle of over tiredness, which made my symptoms worse, it has been a down hill spiral since then, and I have had to take today off work! I have managed a whole 6 hours sleep today so am hoping to feel better tomorrow! I wonder if my bad birth triggered it, as I needed a spinal in a very stressful situation, so wonder if it there has been spinal damage. Did the neurologist have any answers for you when you went? Thanks for your quick reply

  • Too MUCH Ropinerole or nay med in that class can have the opposite effect of what you want-augmantation. Until you see your doctor in 9 wks, you will have to play with the does, but I would try and lesses it a bit. Also , the med may be making your RLS be so that it is 24/7. Ask your doc about the time released form of Ropinerole or Mirapexin. Mirapexin is the same class of med, but is stronger, so lower doses. rlshelp.org has the golden treatment page. Go to the we site, click on treatment, and make sure you read all mes available for RLS, and "Drugs and Foods to Avoid" List which is extremely important, as many meds and foods can set RLS off. It is a US web site, but the doctor who manitains it and answers every email is an RLS expert I have known since 1997. :)

  • Thank you so much for your help, I have only taken 3 ropinirole today, and the restlessness isn't as bad at the minute, that could be due having a good sleep today, and just having a nice bubble bath! I had a look on the drugs & foods to avoid, I have cut out caffeine after my 1st cup of tea each morn and alcohol, but might speak to GP about a slow release forms, don't think I've tried mirapexin. I tried gapapentin, but couldn't get through my working day as it made me so drowsy. My GP says he's at a loss at what to do with me!

  • I'm feeling better that I found this site and have had so many replies so quickly, its comforting to have others who understand it. I also have disfunctional bleeding and the gynaecologist seems to think there may be a link, has anyone else heard of this? It seems to have been a circle of being anaemic, having the disfunctioal bleeding & the RLS, as when I have my period (almost all of the time) my legs are worse? Embarrassed at being so personal but it all seems linked??? I have been taking 3 fersamal since oct.

  • Maaaaaaayyyyyyyybe. Being anemic, though, is not what sets off RLS. You need a Ferritin level test to show HOW your body STORES the iron. That is where the problem lies for many people. An rLSer should have a Ferritin level of at LEAST 50-70, but a lab result sheet would show 12-15 as normal range. some people get relief f their Ferritin is too low. BUT< always get your iron checked before starting iron and talk to your doctor. (disclaimer) Iron overlaod can literally kill you to be blunt. and, it takes months for most people to get tehir level up with oral supplements, and even after they get the Ferritin up, the RLS can and in 70% of the cases will continue. Lucky people get helped by iron. Everyone I have known online in my RLS groups that I moderate and own since 1997, has had their Ferritin level checked. Only a very few have achieved noticable relief with iron supplementation. Everyone is different, reacts differently to meds, and it is all trial and error. for coping techniques- rlsrebel..com

  • Hi Cherrytree, i only joined last night so catching up on lots.....but ur reply above stood out to me as i've queried often whether RLS is related to menstrual cycle with the Dr, and never managed to get a reply!! I find my RLS is far worse when im due on or on my first few days, and it drives me mad, i find im so on edge as im expecting it that im sure it makes it worse when it does kick in...... Is this something that others experience :/

  • I have 2 theories for mine! 1 is spinal damage from a bad birth, but then it didn't come on straight away after, so doesn't add up as much as the hormonal theory! My symptoms are definately worse when I'm on and as my dysfunctional bleeding has got worse over the years so has my RLS! When I asked my GP he said there is no link! Last week, by chance I saw a new gynaecologist, she said she thought I had the dysfunctional bleeding which is a link between the brain & hormones, there is a lot of research in to the subject just now, and she has also read papers that it there is a link to RLS, it makes complete sense to me, as my RLS is at its worse when on my period! She suggested a mirena ius might just be the thing to help both, as it has a small amount of oestrogen? I don't know if it will work, but am willing to try ANYTHING! So I'm on the list for that as well as seeing a neurologist. Its interesting that you seem to have the same?

  • There are studies that ahve to do with the spine also, and that is where I think mine starts. Broke my back at 14, ahd 5 surgeries, nerve damage. In sleep studies, a person with RLS has parts of the brain that light up around the nerves at the base of the neck, and sleep studies also show "excitability of the spinal fluid". More on that as it comes out. :)

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