Whole body rls

Hi I'm struggling with a strange illness at the moment.

I've posted before, sorry if I repeat myself!

I just wondered if people experience 'flares' of rls?

I seem to be having it in two ways; I do too much, muscles are strained, they ache and get very painful and as they recover the rls sets in.

Or, the tingling crawling feelings start in my spine, chest and hip bones and slowly build to affect while body.

In both scenarios all I can do is stretch stretch stretch and move but mainly contort as much as I can. Sometimes it's been too much and I'm then left with more aches.

I'm hypothyroid, took sertraline to help recover from a dip when my son was 8 months but over the year it appears to have both lowered the amount of thyroxine I absorb as well as caused major rls. I think this is because I lost muscle, especially proximal muscles, then started getting nerve issues when muscles tried to mend. Following a raise in thyroxine I regained muscles in my arms and chest but the rls got a lot worse. Ferritin was 57. Awaiting b12 and folate. Currently weaning off sertraline to see if it helps; not much luck so far! About to go down to 12mg.

So, do you find it flares?

And what is the route to diagnosis?

If things don't calm I'm possibly being referred to neurology.

I'm off work with chronic fatigue and pain.


19 Replies

  • I know exactly what you mean - you have described exactly what I get sometimes too. Normally, it's just 'restless legs', but I would say about once every two weeks, I have a severe episode when almost my entire body seems to be affected. It starts up when I've been in bed for a few minutes, and continues for upwards of half an hour. All I can do to relieve it is stretching, tensing and contorting my body until I'm exhausted and finally fall asleep.

    I have not been able to pinpoint any factors that would make this happen sometimes, when most nights I'm OK. There seems to be no correlation with how much exercise I've managed to have during the day. I have a long walk some days, but other days not much exercise due to feeling too lethargic.

    I am also hypothyroid (currently on 100 levothyroxine per day). I think these conditions are definitely related somehow.

    I did some research on medication for RLS that my doctor had mentioned (although I've not succumbed to taking anything for my RLS yet, as I hate taking meds). I found out that the same drugs are used to treat both RLS and Parkinson's disease. The latter is characterised by a deficiency of Dopamine, and the drugs work to try and increase this.

    This led me on to thinking that if I could possibly increase my Dopamine levels naturally, it may help with my RLS. Some foods are rich in Dopamine (e.g. bananas). You can also increase it (supposedly) by exercising, and even laughing (yes, I know there's not much to laugh about!)

    I'm trying to do all this to see if it makes a difference. Probably not much help, but just wanted to let you know you're not alone in this terrible affliction.

  • Thank you so much, this is extremely helpful.

    Do you feel wiped out after an 'attack'?

    How were you diagnosed? Should I ask for a referral to neurology or rheumatology?

    I can't go on like this as I have a extremely physical job teaching children with autism. I actually need a diagnosis to enable me to go back to work so that adjustments can be made or I am better able to manage it.

    Ironically there's laughing yoga near by on a Sunday!

    Good ideas about the foods; I'll try it.

    Have you had b12 and folate tests?

  • Regarding dopamine I do wonder if the antidepressant has a hand in this.

    Today my muscles are tiring really really quickly. I feel them tiring from just standing up!

  • I do feel very tired the next day after a bad episode, but then I'm usually like that, as RLS goes hand-in-hand with chronic insomnia.

    I've been tested for everything, and my levels are apparently 'normal' for all but thyroid hormones, which are being treated. So there is no obvious deficiency that could be causing the RLS. I'm afraid I don' t know anything about the other tests/drugs you mentioned.

    I'm no expert, and I'm not sure which route to go down regarding specialists. Has your doctor tried prescribing an RLS drug such as Pramipexole? I've not tried it myself, but it may be worth a try for you, to see if there's any improvement?

    I'd recommend trying to do some exercise, if only a short walk. I know how exhausted you must feel, and it's such an effort to do anything some days, but I find if I force myself to do a short walk, it really does pick me up a bit. I think the bananas are definitely worth a try too. Try to keep positive - maybe try the laughing yoga?!

  • Thanks for your advice it really helps to hear this sort of thing from someone who experiences it.

    In a funny way going back to work could help except that I'm simply not strong enough at the moment to deal with physical stuff and I found I had to sleep all weekend after 3 days of work. Having a teething tiddler probably didn't help. It was the extreme muscle weakness that really did it for me though. I suddenly found I couldn't lift my arm off my chest when lying down, nor chop potatoes or lift a big milk out if the fridge. Or make playdough!

  • Iv got whole body RLS pian in my feet arms legs back and face a lot of us have

  • Thanks for your advice regarding going out. I went out with my son to a soft play and did feel better.

    Muscles tightened a lot in the evening which caused some sleep issues at first (then it was teething toddler!) but they feel looser this morning.

    Going to try some yoga now if toddler allows!

  • Get to nurogily as quick as you can you need some medication medication painkillers to help you how can you live lika that ?

  • I wouldn't jump to drugs so fast.. sounds like tight muscles and soreness could be fibromyalgia plus les. GO first, then another specialist.

  • yikes do you mean rls or is les something else? no im not going down drug route till i know what is causing pain.

  • meant rls, my computer tablet spell check loves to change words on me. Please pardon me. Yes, I would investigate the pain and soreness before asking or seeking pramipexole or anything else. I know that you are in suffering right now and want relief this minute but it's going to be better

    for you to see a doctor that can distinguish between conditions.. pramipexole is hard to get off of once on it. (mirapex)

  • Yes I don't want any more medication till this is clear or sorted out. It might be caused by the sertraline but I'm suspecting possible b12 / ferritin issues. However my rbc was above range which I don't know is significant or not.

  • Red blood count can be normal but ferratin still low.

  • Well, yes Dr agrees. B12 a healthy 600! But thinks it could be ferritin and to supplement for a month on top of all my iron rich foods! And a referral to rheumatology too to check out my seemingly hypermobility and what ever else there might be. Which is very much what I thought 2 months ago! But at least I feel closer to a resolution.

    Am thinking of taking therapeutic dose of asprin daily too.

  • Ok I'm going to the doctors/ hospital on 29 December Thanks Yikes 2

  • Can't beleave this was only 18 days ago Well I'm going to see a Fibro specialist Tnank you Yikes 2

  • Why do you say neurology?

    I'm seeing the Dr on Monday to discuss many things including this. It could be the effects of the sertraline withdrawal. I've just gone to 12.5 a day hopefully next two weeks at that, then off.

    Drs plan is that if things don't improve it will be a rheum or neurology referral.

  • Erona..the 29th is almost here. How long this time?

  • Iv spoken to other members about my RLS all over my body and I can tell you I know exactly how you feel and the misryery of it I don't take any brain drugs any more they did not work , so I take strong pian killers and loranzapam at night to sleep . I think I may have fibromyalgia and you could be the same , I'm going back to hospital to research my case again ,Can I ask you do you feet and legs go numb too ?

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