I am looking to add a Frequently Asked Questions (FAQ) section to the RLS-UK website. This has been suggested by a number of you over the past few weeks. If there are questions which you would like included, please detail them below. If you wish to provide a suggested answer, please also do so.
Thank you
Daragh, Chair RLS-UK
One thing that many people dont seem to understand is Augmentation when using the dopamine agonist meds. A good explaination of how it happens and what to do could be useful for people to look up...
Great suggestion! Will ensure it's included.
and the ferritn levels, how it helps store iron, and what the levels should be..
ferritin even !!!
A good question is "what drugs can make my RLS worse?" The short answer- "SSRI and tricyclic antidepressants, over the counter allergy and sleep meds containing Diphenhydramine, also Pseudoephedrine in allergy meds. These will affect 99% of all RLSer's negatively, as in they will most likely make your RLS worse. Best web site with all info pertaining to 'Drugs and Foods to Avoid' is rlshelp.org on the treatment page.
Question- "How do I know an RLS web site I am looking at is legitimate/reputable or not?" answer-
"If the site promises you a 'cure' and if you have to put out money for information, it is a scam, pure and simple." Too many people like to prey on sleep deprived desperate people.
question- "What kind of questions should I ask my new RLS doctor?" Answer 1. "How many patients do you have wth RLS?" 2. "How do you treat RLS ranging from mild cases to refractory (hard to treat) cases?" If you know more than your doctor, which is not uncommon when it comes to RLS, do your homework. Knowledge is power, and it helps us cope better..
The always famous FAQ for RLS- "Is this a permanent condition and is it progressive?" Answer- "Yes, it seems to get worse as we get older, it is genetic in 65% of RLS patients, and there is no cure, as of yet."
Thank you for all of these!
Hi Daragh
Great questions so far particularly the augmentation issue
Other things I have noticed being asked repeatedly on this site are:
RLS is not just a leg issue - it can come anywhere in the body
Summary of drug types and different manufacturer names - as per my email to you a while ago - I notice you did include this in the last newsletter
There is no cure at the moment just treatment
Yes it can be hereditary
Hope this helps
Thanks
Simon, Halifax, UK
Is there any active research into RLS which might lead to a greater understanding of the problem and more efffective treatment? Currently medication prescribed is all rather hit or miss.
There is limited research going on. It depends on how much money the drug companies can make that fuels research. Not enough is being done but all we have is a "band aid" to treat RLS. No positive cause is known, so we need the "band-aids". Lots of people write to me, on here and other groups, saying they "want a cure", and refuse to take anything for it and put down people who do take meds for RLS. It is no different than finding a cure for cancer or diabetes. Insulin is 'band-aid" that keeps you alive. surgery and chemo are band-aids" for cancer. Same thing. people have to take meds so their thyroid will work properly. again, a "band-aid", that is needed also. Many , many diseases have no cure, and the sooner people accept that, the better treatmenet they will get, and doctors have to learn also.
In a regular medical program, medical studenets only spend about 6 hrs on sleep disorders, so that a reason why some GP's just do not know. 6 hrs is hardly time enough to mention
88 sleep disorders by name, never mind study them, unless you are studying to be a neuurologist or sleep doctor. More awareness is the way tto more research. Know any celebrities from UK that have RLS? I know 4 in the US, and am writing letters to them, but really pushing it this time. before the next wave of negative publicity comes next year in the US, with that ridiculous name change coming in the US, or at least an attempt at it. :o)
Thanks nightdancer for your excellent contribution to FAQ'S. i am 89 years old and suffered from this complaint since I was a boy and have tried many of the drugs and alternative treatments. These are only palliatives or "band aids" as you call them. To echo your words, In 1996 Virginia N. Wilson wrote in her book "Sleep Thief," "Until the medical schools teach our physicians how to understand the area of sleep, we RLS patients must fill in the gaps for our own well-being. Proper medication, tailored to the individual, makes life worth living, but until the day comes that RLS is thoroughly understood we will have to make do with makeshift daily living - called COPING."
Thank you! I love the word COPING. :o) RLS can be maddening, torturous, at times, and how we are set up to cope with that is a big key to staying sane. coping is AS important as meds. We also like to call coping our "bag of tricks" (per the RLS Rebel web site) It is a site all about coping, and it is expecially meaningful now that she is battling cancer, too.
If you want to read some words from a good "coper" you should take a look. :o) part of her web site disppeared, but we saved her RLS stuff, thank goodness! rlsrebel.com She does not answer emails any more, because she is dealing HARD and coping hard right now, but you can read her stuff.
That interesting, i dont know if any celebs. have RLS here in the UK... If they have they are keeping quiet about it... Now, how to find out...??
I found ours purely by luck, but they can now be googled. I saw an interview with the kid Taylor Lautner (Twilight films) and he was talking about RLS a couple of yrs ago. Jon Stewart from the Daily Show, does really have it. I think they have a link to celebrities with RLS on health.com in The RLS section, where they list them in a slide show. maybe I can google enough to come up with some for you. :o)
that would be very interesting 
ESA help 
