New here!

Hi everyone! I'm new here and currently writing this in the middle of the night while downstairs trying to sleep on the sofa. I believe I have restless body syndrome. Most of the time I have no symptoms whatsoever. But tonight and about a month ago, I've suffered with full body tingling sensations, mainly in my back and shoulders that don't allow me to keep still and sleep. My partner gets so fed up of me constantly moving in bed that I eventually give in and go downstairs to try to sleep. Today I noticed that I was a bit jittery at work during the day but put it down to having an off day. It seemed to settle then tonight it's started again, fully blown tingling. I can sit down but have to change positions every few seconds. It's a sensation I can't stand. Driving me mad. It's nice to see some posts I can relate to. I feel so upset to realise that I have this, even though it hasn't seem to have affected me too often. It's pure hell right now! I drank a new tea I've never tried before just before bed so wondering if that's linked to the episode tonight. My mum also had fibromyalgia so now I'm worrying that I could have it to because I've read that it can be linked. Nice to meet you all anyway!

7 Replies

  • Welcome! Your symptoms seem a bit unusual but there is a good RLS definition in and loads of other good info.

    Are you on any other medication, even cold remedies and anti-depressants can be triggers.

    Try to make a note of what you did, ate, drank, meal time, exercise and stress levels etc that preceded your attack. If you make a diary you may isolate an RLS trigger which would be much better than going down the drug route.

    Ferritin (iron) levels and Magnesium or other deficiencies would be another easy solution. Follow this forum, read up (RLS by ? and Hening is good) as you will need to become the expert and train your GP as they usually are ill informed on RLS.

    Good luck!


  • ?=Buchfuhrer and Hening etc! Tend to forget things when I have been up all night...

  • hello Helen

    I hope it is not rls but it does sound like it i my self suffer from rls i have tried lots of things sometimes it gets rid of the symptoms but only for a short time ie ok with first dose after that NO help? on to my present medication Neupro Rotigotine 1 or 2 mg at least gives me 4 to 5 hours of Sleep i have been on this for around 6 weeks The best try so far


    Best of good luck ZAPPA

  • Hi, I'm on Neupro patch too, I have severe RLS the lower one gave me the same relief so I have up'd it to 3mg & it has completely gone! Worth a try?


  • Hi HelenBown44 and welcome! You are new to the site but are you new to RLS? Have you been diagnosed with RLS by your doc or Neurologist? The reason I ask is that many of us here will have tingling sensations as part of the curse that is rls but another explanation could be trapped nerve problems from a fall or even a trip or turning awkwardly. Full body worries me too. If you haven't seen your doc yet may I urge to to do so asap. Sorry, don't want to panic you :) but it pays to be sure.

    Kind Regards


  • Hi There, I sympathise with you as I get the horrible RLS symptoms in my arms,shoulders and spine. I also get it right up inside me (via my privates) which makes it almost impossible to sit for any length of time b- you can guess how much I hate plane/ car journeys ! I have stopped going to the cinema and theatre and even having a meal out can result in me having to leave the restaurant and walk up and down outside. I have problems with my bowel and am hospitalized quite frequently - the doctors and nurses say they have never seen anything so bad! I have awful nausea and sickness and the only anti sickness drug I ca take is cyclizine which exacerbates my RLS !! Where did you find the link about fibromyalgia? I have that as well and so does a friend who also suffers from RLS.

  • Hi jumysil, I in turn sympathise with you. You sound like you have 3 or 4 conditions all competing for your attention. That must be dreadful. Do you have a very constrictive diet to follow? Have you got a diagnosis from the hospital doctors? Just a yes or no will do if you do not wish to give details. I have visited the fibromyalgia community recently (many people have fibro and rls) and got a lot of info. You can join that community as well if you think it will help you. I have not been able to go to the cinema for years but I can sit and enjoy a meal with friends if I am mentally engaged - but as soon as I think "legs" I have to walk about, to the loo, to the car, anywhere. Not so much fun is it, I know how you feel on that one!


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