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Hi,

I've just been diagnosed with this horrible condition after a week of no sleeping because of it. Doctor was great (although he refused to amputate my affected leg!), and prescribed medication...I've done some reading up on this condition and I'm looking forward to this program on C5 tonight..I think!

The thing is, I have no idea (apart from here) where I can get help/support, so any suggestions will be very gratefully received.

19 Replies

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  • Hi and welcome. There's excellent information at rls-uk.org and also.rlshelp.org (American site ).There are some good support groups on Facebook too. Which medication have you been given?

  • Hi, I'm not on fb, and have started going through the google search results on RLS, it's quite scary. I've been given Ropinirole 0.5mg once at night.

  • Be careful which sites you go on as there's a lot of incorrect information out there. Stick to reputable sites like the ones that I gave you and another excellent one is John Hopkins, again American based but good accurate information. Lots of people offering cures on the Web out to make a quick buck out of peoples misery don't fall for it there's no cure but plenty of treatments both med and non med based x

  • Thanks. Even though I've worked for NHS for many years it's not something I've heard of, so I'm trying to get my head around this and learn about it at the same time. I'm also looking forward to tonight's program, timing couldn't have been better for me. Thanks for your suggestions too, I'll be checking them out asap.

  • Also be careful you don't end up on Pharmaceutical website....they love their profits!

  • What is Ropinrole ,and how does it stop your restless legs?

    Is it a muscle relaxant or affect brain activity?

  • It's got something to do with chemistry in the brain...I'm still learning sorry

  • Pippins the Amercian website is rlshelp.org. lol

  • Thanks Elisse I knew that was silly predictive text

  • It is advisable to learn as much as you can about the condition and about the various treatments. In particular, as you are on ropinerole, educate yourself about augmentation. For most, ropinerole and mirapexin (another dopamine agonist) are very effective in treating rls but in almost all cases they will eventually turn on you and start effectively feeding the condition. If you know about augmentation and how to handle the drugs you should get longer out of the ropinerole before it ceases working. Consult the sites Pippins recommends and also the patients' letters page of rlshelp.org. You will learn a lot and can work with your health professionals to optimise your treatment.

  • Oh, I almost forgot, get a blood test for your serum ferritin levels - you need to request the actual number - don't let them just tell you you are normal. For the majority (though not all) sufferers, raising serum ferritin levels will have a positive impact on rls. US experts suggest it should be well over 100. In your shoes, I would probably start an iron supplement straight away though many would argue it is prudent to check your levels first.

  • Well I finally had a blood test and my ferritin level is.....427!!! My doctor wasn't too concerned as it's only just over the upper limit of 400.

    I'm now on Folic Acid and need vitamin b12 injections. Oh the joys.

  • That level sounds very high to me. But if your doctor thinks is ok Who am I to say differently. But I hope your doctor keeps an eye on your level. So another member with a high ferritin level who should never take any iron of any sort.

  • I was quite shocked at it being that high and him being ok about it. Repeat bloods in 3 months might change his mind.

  • Good to know he IS keeping any eye on it, if you are having your bloods re-tested in 3 months.

  • Well 2 months down the road and I seem to be right back at square one. Feeling the same drained self as I was, the pain in my leg is back, and I'm wanting to get my leg amputated.

    I was looking forward to go back to work, but now I look forward to sleep...what little I get.

    Is it normal that symptoms go in cycles?

  • Sorry to hear things are not going so well. What meds are you currently on?

    It is sadly not unusual to encounter difficulties achieving an optimal treatment regime. I presume you have made sure you are not inadvertently worsening your symptoms with any of the counter-indicated drugs etc.

  • Sorry, just checked - you said .5mg ropinerole..5mg is not a huge dose so depending on what your health carer advises maybe you could increase it? I personally would not go higher than 1mg however - I would use something else to bolster the effect of the ropinerole (maybe Lyrica or codeine) to reduce the danger of augmentation as well as of side effects.

  • Since then my doctor increases Ropinirole to 1mg

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