Dreadful RLS

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I have suffered with this for a few years now but not every night so have just put up with it, just thrashing my legs around for hours until I was exhausted. Last night, however, was the worst ever! I have RA, severe hip pain, shoulder pain, headaches, painful hands etc. but this was worse than all of that put together! I was awake the whole night tossing, turning, thrashing about banging my legs, in extreme discomfort and pain. I ended up in tears and gulped down some  oramorph which eventually helped and i think i was asleep for about an hour before my daughter came and woke me demanding I give her a lift to school! I just cried and ended up shouting at her as I am sick of her waking me up when she knows I dont sleep well anyway. She is 18 and has an umbrella for goodness sake so I put my foot down and said "no" for the first time! I am dreading going to bed tonight and have been grabbing bits of sleep throughout the day so probably won't get to sleep again. I just wonder whether anyone can suggest anything other than medication that works, or whether anyone knows what makes it worse? I dont want to take another medication if I can avoid it, I take too many as it is, so would be very grateful of any advice from people that have also suffered this.

Many thanks in advance x

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  • Posted

    Hello Sandy67. I'm sorry to hear of your predicament. I have suffered RLS for nearly 30 years. It has become progressively worse as I age. I've been taking Pramapexole for around 3 years and find that it does help. I take it around 5.30 in the evening and by the time I go to bed I'm reasonably relaxed and can sleep. Occasionally however it doesn't work and I'm up all night. There are other medications available inc. Patches. I think GP's use medication as a last resort. Factors that seem to be implicated in causing RLS to worsen are Aneamia, Hypothyroidism, some medications such as some anti depressants, depression and probably a few other factord besides. Has your GP referred you for a blood test. In particular iron levels, Ferritin, Thyroid etc. Caffiene also seems to be implicated. May have to cut down on coffee etc. Exercise apparently helps too. I find it difficult to drive whilst sufferring an attack of RLS. In this case, about an hour before my journey, I take a couple of Pramapexole and that seems to help. You mentioned that you don't want to take any more medication if you can avoid it. It seems as though possibly in this instance it may be unavoidable. I couldn't exist without Pramapexole. To such an extent that if I forget to take it, I know that I won't sleep. When this happens, I don't go to bed but organise my night to get on with chores and make myself useful. Hope this helps.     
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  • Posted

    Hi Sandy, as with Thomas24929, I have suffered with this curse since the mid eighties and have only recently caved in and went on medication.  I use ropinerol, (requip), along with Gabapentin.  It shuts down the legs completely ... long enough to get 5 to 7 hours of blissfull sleep.  There was a time when mild exercise and a hot bath before bed would minimize the leg quakes, but as I age they have gotten worse and that routine no longer provides any relief.  RLS/PLMD affects everybody a little different. what might work for some may not work for others.  Gabapentin is a non-narcotic, relatively harmless drug that my Doctor, (who has written books about RLS and other sleep disorders) highly recommends for this malady.  It works to calm the central nervous system which may be the culprit.  Other theories, (besides low the iron/ferrite levels mentioned by Thomas23929), include low Dopamine levels in the brain, vitamin D deficiency, possibly even nerve damage in the spinal column.  My advice is to seek out a nuerologist or sleep specialist with some experience in this area, get some bloodwork done to check Iron / Vit D.  If you are low in either one (or both) of those .... it's an easy fix smile  Good luck and God bless.
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  • Posted

    Thank you both for advice. I guess I may have to take meds if it continues. 

    I only drink one coffee in the morning as a rule, so I doubt that is the culprit and although my iron levels were very low and I was anaemic I was told that that is no longer the case so don't  take iron now.  I do, however, suffer with vitamin d deficiency so already take calceous every day. I damaged my spine many years ago and pelvis, and ended up house bound for four years. I am in bed a lot now too so maybe thats not helping.

    i will talk to my rheumatologist about it too on my next appointment which is this Friday.

    thanks again x

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    • Posted

      Hello Sandy

      According to a certain doctors website restless legs is caused by  inflammation of the body.I read that it also has to do with the dopamine levels in the brain. Since I have changed my diet to alkaline foods and drinks I feel sooooh much better.The other things to look out for is cutting down on starch and sweets after 5pm until bedtime.This has a major influence on your legs.I also had RA and fibromyalgia .I don not take any meds anymore and I feel sooo much better.I also started taking Molasses a table spoon in hot water every evening before bedtime.If I had an episode of RL after that I would drink a 5ml of Miracle Magnesium.Or a quater tsp of Epsom Salts it is the magnesium in it that helps.Also try to drink alkaline water.

      Further more I use the Bemer3000 for inflammation and insomnia It has been greatly relieved by this appliance.You have to use it regularly everyday 4x per day.I have my own which helps alot as I do not have to leave home.

      Hope this info can help.....

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    • Posted

      Hi, this all sounds very interesting thank you! I have started trying slimming wirkd again today, so have had no sweets at all and cutting out a lot of complex carbs so hopefully this will help.

      i will try those things that you advise.i have also been toldI have fibromyalgia, but not sure now since the discovery that i have RA.

      thanks again x

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