response to comment

[Retren]

I certainly have posted on both the restless leg site and the pernicious anaemiaB site severer all times.I don,t understand why the assertion I haven,t done so.I am very impressed at how knowledgable everyone is and follow with keen interest.I feel very ignorant many times reading some of the posts Retren.

[beady3]

Retren I am like that I know what I have taken in the rls med and about augmentation which was terrible ,but I couldn't advise like some of our friends,I suppose we all know different things about rls and why this forum is so good ,so long as we take time to reply to people that's all that matters

[Pippins2]

Retren where has it been said that you have not posted? I have seen posts from you before x

[Retren]

Reply to Pippin fromRetren.It was printed below my moniker someplace.I was scrolling through the amount of information and there these printed paragraphs were which I found somewhat disconcerting.I can,t tell you where it popped up because I had never seen it before and after I replied could not find it again.Like my house-maybe a gremlin?Thank you Beady and you too Pippin for replying.

[Windwalker]

Retren,

Most of us have taken control of our treatment and have been assertivee with our doctors. The general population of doctors don' have a clue and couldn't care less. They view RLS as a minor annoyance that we take too seriously. So when we talk I am very assertive and he becomes a fairly passive for an educated man, but he writes the prescriptions I need, but always comments that he is for less drugs not more.

I have cut back on ropinorol and haven't been worth a crap since I cut back…..very little sleep in bed and cat naps sitting up with the travel collar around my neck so when I doze my head is supported.

I do the hot bathtub with epsons salts almost every night  and find it helpful.

Still have hope a medicine just for RLS is being developed by a major drug co.

10% of the world population has the condition some worse that others, but all would buy the medicine. So far any Medico who prescribes is doing it ''off label'' because someone told him or her that parkinson's medicine works on the symptoms and they do temporarily, then it is hunt for another medicine when they are no longer effective.

Try eo be well and attitude helps a lot.

[Hidden]

There is all kinds of information on the web about RLS.   Most of the cases I read about on Health Unlocked are extreme.  I am very thankful that I am able to control RLS without too much trouble and extremely thankful that I never had to take major drugs to relieve the symptoms.   Therefore, I can't give any advice about dosage, except to say don't give up.  It was at least 10 years before I got help.   I spent time at sleep clinics, drinking quinine water, etc. which was useless.   Finally I was the one who found that RLS had similar symptoms to Parkinsons and some of that medicine was helpful.   Once I started on that road, I've been fine.   I've had to change medicine once because of augmentation, but had no trouble switching with good results.  

Don't give up - do your homework and find a doctor that is willing to listen to you.

[Retren]

Retren to Windwalker I am not sure I have your message in sequence,however I am so sorry you have to resort to such an uncomfortable measure.I did see that some young man posted a picture to demonstrate what he resorts to at night and I was horrified .It involved lying prone on his stomach with his feet and ankles attached to a pulley system.Frankly it appeared to be very dangerous.If it is any help to you I am taking Tramadol and Lyrica which is not very effective due to short duration  and side effects are not so good but as they say in my home county when the devil drives one needs must.I just hope there are a number of researchers toiling away on this problem.there are so many sufferers and as we get older it becomes worse.