Connection between RLS and PPS (post polio syndrome)

I am a new boy to blogs,never done it before,but I would appreciate some contact here. In short,I am 80,up to now very active,had polio as a boy very mildly (so mildly I was not diagnosed at all until some long time after when my right leg was found to have stopped growing ). My life has been more active and strenuous than I would imagine than most men without a thought about it until a few years ago.

It was at that point I began to realise that the polio had returned ,as it does in something like 25% of all sufferers,with inexplicable tiredness,bordering on exhaustion,muscular pain and other signs.

At about the same time I began to really suffer from RLS,having experienced it in a very mild form for years. Interestingly,I remember my father (died 1966 aged 72) also suffered from what he smilingly called "the fidgets" for years,which must have been RLS.

My own experience of RLS is not, I am sure, unusual. It occurs usually late in the day if I sit still for long and when I go to bed and is only a mild twitch. My wife tells me that I often twitch when I am asleep,sometimes extremely violently,and that is borne out by my waking up tired.This in spite of the fact that I had no idea I was twitching.

I have invested last week in a pair of copper bracelets which have had limited success.

Anybody got any words of wisdom?

Marmaduke1

8 Replies

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  • Sorry to hear about the polio returning.

    I'm not sure if you have rls- sounds more like periodic limb movement.

    Ie - uncontrolled movement of limbs especially when asleep. Rls would actually wake you up and there would be an uncontrollable URGE to move your legs for relief. I know they are very similar but the hair needs to be split - so to speak!.Sounds like your dad had primary rls - and you would expect to have it as well naturally.

    Where does that leave you now?

    I don't know enough about plmd treatment - but rls treatment has a two pronged approach.

    1 - is what you've started - copper bracelets work for some people as do lots of other alternative treatments. Most of them are based on the placebo effect- which does not affect their effectiveness- as long as they work for you - that's all that matters.

    2- avoiding trigger substances- such as cough medicines, antihistamines high salt , rising agents , sulphites , alcohol and so on. Check list of meds to avoid on rlsuk. Or just google " foods to avoid for rls" it's endless.😢 You will know yourself what sets you off!

    3 ( yeah , I know I said 2 but I'm just a liar) there is the medicine approach- which I would strongly avoid unless the rls is severely affecting your quality of life.

    I would try out the first two options above and see how you get on.

    All the very best- you have come to the right place for help. I have been all over the Internet in search of answers and this is one of the best sites.

    Cheers.

  • Forgot to mention trying magnesium citrate ( I get mine from HnB) start with 200 mg and see how that goes. Take them about 3 hrs before bed.

    Also to check what meds you are already on. You can send a list in here if you like and someone can advise you.

    Cheers.

  • Thanks for that @Madlegs1,obviously you are an expert. I had no idea of the difference between the two problems. No,I do NOT awaken with the movement,in fact the only sign that it has happened is that I wake up worn out. My wife says it is no wonder I wake up tired sometimes,it seems as if I am running a marathon.

    One wonders if the usual treatment/avoidance info for RLS would be the same for PLMD,it might well be so. What I was really looking for as well was info.on the connection between PPS and RLS. The med.profession are not a lot of help,my GP had not heard of PPS and had to look it up on the net,while I sat there!

    I will certainly follow on the first 2 parts of your entry rather than the third. I have no intention of going down the medicine approach. I had a chat with GP some time ago on the subject,and he left me in no doubt that as far as the medical approach was concerned the cure was worse than the disease!

    Thanks for your help

    Marmaduke1

  • In the world of the blind the one eyed man is king!😎

    I have no knowledge of any connection between PPS and PLMD or RLS.

    You could email Dr Mark Buchfuhrer at rlshelp.org . Go to the website and look for tiny yellow button 'email'.

    He is an expert on rls.

  • Is it possible that you are taking medication for high blood pressure and that this has created a problem with your legs? I too have a problem with my legs and I take medication for H.B.

    I was waking up screaming with the pain in my legs, now I use a Magnesium spay which I get from Holland and Barrett. I rub this in after my morning shower and again before I go to bed, thankfully I am no longer in pain. Don't get the tablets, they take forever to be effective.

    I also take Turmeric capsules (also from Holland and Barrett) they help with pain. I take treble the recommended dose, ask them for advise.

    Dorothy.

  • RLS and PLMD are treated by using the same meds. You do sound like it is PLMD you have, those movements while you are asleep which is what PLMD is. Your brain is getting aroused all the time by the movements which is why you feel so tired the next day.

    The website mentioned by Madlegs is rlshelp.org.

  • Thank you Elisse,yes,as of yesterday I am convinced it is PLMD that is the problem,but I want to avoid the more way out medicines if poss. I feel sure that lifestyle and diet changes can fix it.

  • I apparently have both PLMD and RLS but I though they were both manifestations of the same thing. I used to kick my wife black and blue when I wasn't wal;king up and down the hall for 4 hours a night. I tried a diet developed by Monash University for IBS and it has greatly relieved my symptoms. Its called the FODMAP diet and if you search for this there is a lot of info on the web and in a few forums where I have been recommending it. It helps you find any foods that your body doesnt tolerate. Its not intuitive and some very nice and healthy foods might be at the root of your problems. It costs little to try it out but be very strict with yourself. Its probably best to get help from a dietician but make sure they have heard of the diet and hopefully experienced with it . It works well for IBS people and Several RLS people other than me who have tried it out.

    Its worth trying it for some time. One person found relief the next day but I took 12 weeks before I found it worked. The only "medication" I am on is some iron di glicinite supplement which might also be helping

    Good Luck

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