RLS Help

Hello,

I've recently been suffering a prolonged period of RLS. I've had a few very short term and mild cases (a few days only) in the past. This time however is the worst I've ever had. I can also feel it in my arms and I'm hyper sensitive to light touch and noise. I can't bare it. Its driving me nuts and making me really snappy and frustrated.

I understand there are a few things that can cause RLS but I was wondering if there is anywhere I can go for investigations into what is causing my case.

Also is stress a factor. I've been under quite a bit of stress lately.

15 Replies

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  • What meds have you been taking so far?

  • None as of yet. I've not even consulted the doctor yet as it usually passes within a few days but this has been going on for weeks now.

  • Hi Daviddn

    Are you in the UK? Have you visited the RLS-UK website? rls-uk.org You may find some of the information helpful.

    Caffeine, alcohol, chocolate are not good for RLS for many sufferers and some prescribed medications, even including some bought OTC are best avoided.

    Stress, unfortunately can make RLS symptoms worse.

  • hi there,am just comming out of \a bad jerky evening myself,it is exhausting,but with a bit of luck i should have a bit of sleep,, i never get ultra sensitivity like yourself. with mine noyhing particulaly sets it off,just get a spasm in one leg and i know i am going to be in pain for the next few hours

  • Same here...have no idea what sets mine off. It's now a regular thing sadly

  • Hi and welcome to the group.

    There is no specific testto diagnosis RLS a doctor goes by the diagnostic criteria which is a clinical one where you fit the bill. The urge to move sensations is the absolute must have for a RLS diagnosis

    I am wondering if anything has changed recently to cause your symptoms to ramp up. Such as have you started on any meds for anything else even over the counter stuff? Meds like antidepressants, antihistamines and anti nausea meds will worsen RLSas will most over the counter sleep aids. Many cold and flu treatments contain ingredients we need to avoid eg Diphenhydramine.

    The cause in around 60 %of sufferers is genetic, known as Primary RLS. Do you have any family history of RLS? .

    Otherwise it is known as Secondary RLS as examples of things causing Secondary RLS are meds, pregnancy (we can rule that one out ) and kidney disease to name a few

    Your GP is the best place to start although unfortunately many don't have much knowledge in treating RLS. You can always ask for a referral to a Neurologist preferably one who specialises in Movement Disorders or a Sleep Doctor if you don't get much help from your GP. Make sure you get your Ferritin iron levels tested. It needs to be over 50 preferably over 70 which is much higher than that of someone who does not have RLS.

    Learn as much as you can so you are able to help yourself and be equipped ready for your appointment. The RLS - UK is best place to start. The diagnostic criteria is on there along with treatments etc

    Opiate based painkillers such as Codeine or Tramadol work well for RLS, they work on the urge to move sensations as well as on any pain. You can buy Co -Codamol over the counter at the Pharmacy. The amount of Codeine in it is very small much weaker than prescription strength so probably won't help very much but "any port in a storm " so it is worth a go whilst waiting for your appointment.

    I hope that you are going to tell me that you have been taking one of the meds which worsen RLS so you can get off it and improve. It will make things much simpler for you!

    Let us know how you go on, good luck

    Pippins2 x

  • Thanks for your response. Unfortunately I'm not on any medications. I do drink coffee in the morning but that's it.

    I wonder about my iron levels, I might try taking an iron supplement to see if that helps. I know there are different types so if you know what I should be asking the pharmacist for, that would help. I am away for the next two weeks but have an appointment with my doctor when I get back.

    I do have some codeine in the house which I have left over from when I had a toothache. I'll try that too.

    Thanks again for your response it's been very helpful.

  • Good suggestions . ..

    I always like reading the posts here. Great advice.

  • You really should go to a Dr - hypersensitivity can be a sign of something wrong that needs to be addressed. Especially if you are not reacting to any medications.

    Pippins has answered very clearly , so I won't go on.

    Good luck and let us know how you get on.

  • Although Pippins2 has replied very comprehensively, my own experience might be useful. No method is 100% successful. I have suffered with this for 60 years, and although over the last few years it has got worse such that I now take Ropinirole, the basic experience has not basically changed.

    It happens in "phases". I can get several sleepless awful nights and then suddenly it subsides and I get a week or two's peace and quiet.

    What to do to get you through the bad sessions? I find distraction the best method, even in the small hours. Anything you find absorbing that needs your attention, preferably with a bit of activity. Just trying to read doesn't do it for me. Ironing while listening to the BBC World Service is consistently good. BBC WS is so good and absorbing it ought to be prescribed! I have eventually tried Tramadol, but the experience so far is negative for me (disappointingly).

    Many people find lying on the floor on your tummy so you can wave your legs around useful too (I do). Be careful about ornaments though!

    Cut out caffeine and alcohol as a matter of course. This was not as difficult as I expected and definitely helps. Watch the caffeine. It lurks in all sorts of foods you might not expect. Normal and green tea for example.

    As I said, no method works 100%. Try to avoid medications as long as possible, as they all eventually have down-sides. Be optimistic that it WILL subside.

  • I loved this visual of legs waving around....like water dancers....still chuckling 😁😁😁😁😁

  • I ride a recumbent bicycle for break throughs. I used to ride for about 10 minutes each time but now do 20 just because it's actually nice to have some exercise. Although on bad days when I'm up to the 4th or 5th ride I'm so exhausted but it's really the only thing that guarantees relief!

  • I have had restless leg syndrome since I was about 10 and have studied alternative medicine since 1974 and there may be some things I can suggest that may help you please phone me on [number deleted for your own safety/security] - Kaarina (volunteer)

    Derrick Hales

    Derrick, members wishing to get in touch with you can use the PM facility on this forum. (Kaarina)

  • I also am hyper sensitive to touch and sound. The touch makes sense because it triggers the rls but it's good to find someone else who is sensitive to noise - i hate background music etc

  • It is definitely worth reading through the forum to build up a bag of tricks that you can use when the jerkeys strike - especially if you tend only to get it intermittently. Obviously it is optimal if you can avoid/defer taking prescription medication for it. Iron is a good place to start but I would be inclined to get a serum ferritin test before taking iron (a simple blood test that your GP should be able to organise for you) just to be sure you need it. Make sure to get the actual figure for your serum ferritin levels. GP surgeries will consistently tell you 'normal' but 'normal' is different for rls-ers - much higher - in US it is typically considered optimal to have a serum ferritin level of over 100.

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