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  3. Restless Legs Syndrome

At witts end

Posted , 4 users are following.

glenn1965
glenn1965

I really don’t know what more to do. I have attempted to follow all suggestions to little or no help. I am HIV+ and do know that studies show approx. 33% of poz patents become RLS. I don’t know whether this is based simply on the infection or rather an end result of the meds involved. If it was a side affect of meds, I would definitely stop taking them and pass due to AIDS rather than deal with RLS. I have taken gabapentin (1200 mg 3 x per day (3600 mg)). Which didn’t work. Went to Lyrica which did nothing. Now am on Tramadol (50 mg. Cannot take a higher dose due to liver cirrhosis) this is not working. I am considering leg amputation but was told that will not work (true or false?). I know this may sound crazy, but I have thought about cutting myself so that my mind would possibly be preoccupied with pain rather than RLS. Has anyone done this with a positive outcome? PLZ HELP!!!

0 likes, 3 replies

3 Replies

  • sharon67835
    sharon67835 glenn1965

    Posted

    Hi glen

    I read your discussion this morning and have spent all day thinking about your issues I have had rls for many years and I sympathise with your predicament I have also spent many years in the medical proffesion,I have not come across anybody with rls during my career but have nursed people with hiv and aids,but the 2 together must be a nightmare for you,I can give you a few suggestions,but please double check with your doctor,I take ropinerol and codeine at night about an hour before bed I have found this is the only medication that has worked reasonably well for me and believe me I've tried them all,I also discovered recently my iron b12 and folic acid levels were low which can make rls worse so it might be worth having those checked and you can take supplements which won't be harmful to you but should help,I also have a glass of tonic water at night as this can help I'd love to say I have a gin too but I don't well not all the time,I hope this helps and I'm not telling you anything you already know I really do feel for and if I can be of anymore help please don't hesitate to ask or if you just want to talk or sound off at someone a good listener.

    All the best

    With regards

    Sharon

  • valda23668
    valda23668 glenn1965

    Posted

    Have you tried SIFROL.    It works well with me, of course if I do not take it at the same time every night, about two hours before sleep, I get that screaming feeling with legs going everywhere.    It may be worth asking dr. to prescribe it.    It is for RLS.
  • kathy00483
    kathy00483 glenn1965

    Posted

    2 most effective things for me, soaking in a hot bath and using a bean bag as follows:  I make my bean bags with flannel and the cover with fleece.  8 inches by 20 inches, fill with approximately 6 cups of winter red hard wheat berries (so when laying flat about 1 inch high).  Heat in microwave for 2-3 minutes, take out and move around to mix wheat berries, and heat another 2-3 minutes.  Lie in bed face down with rear end up (looking cute:-), and bag at back of knees, between both legs, touching thighs and calfs.  Instant relief.  The wheat berries will stay warm for up to 30 minutes. Adjust legs to what is comfortable over time. 
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