Question to other sufferers

Hiya. I am never sure what it part of my RLS symptoms and what is a coincidence. I have been diagnosed but am apparently too young to have any medication (I'm not sure being in my 30's this is the case)

Recently, along with the usual crawling feeling and need to move my legs, I have developed pins and needles in my feet and hot feet. I also get a dull ache in my legs (like they have gone to sleep) which I never had before.

Does anyone else get these or am I just paranoid?

Thanks in advance x

9 Replies

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  • Hi Miiche, no you are not paranoid. I have had RLS for 48 years and over that time have experienced symptoms which I describe as "bubbling" in my legs which I suppose is similar to the crawling feeling that you get. Lots of fellow sufferers describe their feelings as something similar - crawling, prickling , bubbling etc.

    Don't get that so much any more but now get aching calves and burning hot feet along with the usual urge to move my legs. For the past 8 years I have taken Pramipexole 0.88mgs and have recently added a cocodamol tablet 30/500 to manage my RLS. Before that I thought I just had to put up with it but I wish I had gone to my doctor sooner.

    I can't understand why you have not been given any medication from your GP as I don't think at 30ish you are too young at all. I should imagine it is only with children displaying RLS symptoms that they need to be careful with medication. Your RLS is not going to go away. The important thing is that you need to get something to relieve your symptoms and make life more comfortable. In my experience I have found that GP's generally do not know much about RLS or how to treat it.

    I think the best thing to do is read as much as you can about RLS and available treatments and then go back to your GP and try to get the treatment you need.

    Good luck

    Jean

  • Hi Miiche, My RLS symptoms first started 9 years ago when I was 34. I had a great GP who referred me to a Neurologist in London - I was diagnosed with RLS and immediately prescribed Ropinirole (initially 0.25mg provided full relief, had to increase periodically and currently on 1.25mg). As Jeanjack has advised I would recommend doing as much research as you can and then go back to your GP and ask for suitable medication / to see a Neurologist who specialises in RLS (not that many around!!). Good luck, Clare

  • Hi, if you have RLS you are not to young for taking the meds for RLS. So, if your doctor told you that then they are wrong. I am posting a link for you to look at as you MAY have more going on which i think you need to discuss with your doctor. Do any symptoms you have seem to be as the link says. nhs.uk/Conditions/Periphera...

  • That is ridiculous and NOT true! I know kids that are 7 yrs old that are on meds for RLS! Whoever told you that, has NO idea what they are doing.

  • The "need to move" sounds like RLS, the burning, hot feet sounds like neuropathy or nerve pain, 2 different things.

  • You are definitely not too young for meds! I'm 17 and have just started them, although I dont think I will be prescribed any of the dopamine meds for a while. I'm taking preganalin at the moment, you should definitely challenge your GP and even if they won't give you dopamine meds there are many more with less side effects that could work for you.

    Good luck xx

  • Read through the full paper on the guidelines for treatment of RLS on this site - published in Sleep Medicine in 2013 I think - irlssg.org/

    Look at the chart to see which medicine seems to you to fit your symptoms best - very severe, gabapentin, accompanied with depression, Ropinirol, etc. Check your score - you know yourself better than your doctor, though s/he understands the drugs and the biochemistry.

    You could also print out and do their questionnaire on the severity of symptoms.

    It may be that the doctor wasn't very clear, s/he thought your symptoms were mild and on balance taking very strong medications with side effects wasn't a good idea - that you should try managing it with exercise etc first. But, if so, maybe that has changed.

    If so, take the questionnaire and the chart to your doctor again as a starting point for discussion.

    When you were diagnosed, did your doctor look at your serum ferritin level, and what was it?

  • Thank you all for your help; I think I need a visit back to my GP!! After reading the article on Neuropathy I think I can rule that out - RLS is enough I, I couldn't be doing with having anything else :)

    When I was diagnosed I was advised to avoid caffeine but did not have a blood test. She said from my symptoms she knew what it was as she has it!!

  • Miiche,

    Welcome and I'm glad you found this community. As you can see, there are some very knowledgable folks on here and everyone has their own experiences and often things that they may have more expertise on as opposed to others.

    As you've been told, the too you for meds thing, is indeed false. I've been in meds for 10 years and wax about 30 or so when I started. I started in Ropinerole, which I took for 9 years and successfully transferred into Neurontin. (Gabepentin) different meds work differently for different patients and what may be great for you, isn't for me and vice versa. Of note, ask a lot of questions about what your physician is prescribing and make sure he/she provides you with ALL the side effects so you'll know if you're having an adverse reaction.

    Best of luck!

    Jerry