Hi everybody , what a godsend this forum is . I believe I have been suffering with RLS for at least 7 years . My first memory of it began with the 'fizzy' , 'itchy' internal sensations whilst watching a movie , kept getting up walking around and stretching which gave relief for very short periods . Then after a few months it appeared to be to a regular thing of an evening , which interupted my nights sleep on many occasions . I guess it was probably some months before I visited the Doctor which (after a lot of careful thought on how to best describe to him, as even listening to myself explain it to my husband I sounded completley off my rocker ) was no help , as he may as well of just shrugged his shoulders and told me to stop wasting his time. So I did my on research but at the time there was very little I could find , so I thought I'll just have to put up with it . In 2009 I started having lower back trouble and reminded the doctor about my legs only I wasnt sure if it was RLS anymore because the 'fizzy, creepy' feeling was less than before but now I was geting terrible pains all over my left leg which were not helped by any over the counter pain killers , but he basically dismissed this and said it was due to my back problem . I was sent for an MRI which was clear and was also told that I dont have sciatica (which the rest of my family suffer with), just none specific lower back pain but still no answers regarding my 'crazy legs' .
About 2 months ago I had the worst ever bout of it, even had to take 3 days off work as my job requires me to sit for 5 hours, only broken by the occasional visit to the bathroom . The pain was unbearable but was slightly relieved with my legs elevated . Visited the doctor , this time he thinks I have tendonitis in my heel and this may explain the pains in my leg , GIVE ME STRENGTH , after reading this forum I am amazed at how little doctors appear to know about this. Strangley enough immediatley after that bout I had 2-3 weeks of no pain ,no restlessness , nothing . I optamistically thought that was it that bad bout somehow put an end to it - not flamming likley . It came back and slowly got worse . I will be seeing my doctor on thursday fully prepared with all the information you wonderfull people have made available . : )
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jaynee
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Seems still in this day and age that alot of doctors havent a clue that people just might be suffering with RLS, i can understand this happening 10 years ago, but all doctors should by now have an idea about RLS.
Good you are going prepared with info on the condition and your doctor will hopefully now listen to you, good luck on Thursday...
Hi jaynee It's good advice to go to the docs' prepared just in case.
If you can, copy some detail from the web on RLS and give it to the doc just in case they are lacking the facts, (that's being polite for ignorant!) That's what I did a few years ago.
And, please make sure that you have printed things off of reputable web sites, or the doctor may just set it aside. Does he not know about RLS at all?? Time for a new doctor. I think you know what it isn;t it, and that is sometimes how RLS gets diagnosed after everything else is eliminated. A neurologist or a sleep doctor is your best bet. One of the best things you can do for yourself is get a sleep study done, and after not being treated for RLS all these years, you need one. has anyone ever told you kick while you are asleep? Lots of people get sleep studies done, and find out that it is not only RLS that is disturbing their sleep, like sleep apnea, PLMD (kicking in sleep) When our sleep is disturbed, we do not reach the right levels of sleep, like REM, therefore our brain experiences arousals, even if we are still asleep. A sleep study will show all of that, and solve some problems for you. Good luck, and let us know how it goes!
Thanks for all your best wishes for tomorrow everyone, and yes I am told on a regular basis by my husband that my legs are 'all over the place' as he puts it and thinking back to my younger days sharing with friends and siblings thats quite often been the the theme but I really didnt pay much attention to it then. Also I am seeing a new doctor tomorrow and hopefully she will take the time to at least glance at information I take , Its so difficult to explain something like this and probably have a quick examination all in 5 minuites as that is apparentley all each patient is allowed . But I wil ask to see a Neurologist and certainly will be looking into the 'sleep study'
I was reading the 'migraine' forum as well ( have that too ) and it mentions that 'NICE' are to send guidelines to NHS practioners regarding headaches and Migraines on how they should be taken more seriously and better examined etc . Does anyone know if anything lke this has been done regarding RLS .
One thing that I read in a number of posts yesterday was that a lot of you say that exercising makes it worse , is that the general view or again is it different for each individual . I have been planning on getting a dog for a long long time , its just never been practical until now and I love walking but not so keen to walk alone and my husband (also a keen walker) works shifts so is not around much .
Anyway I wil let you all know how it goes tomorrow
Hi Jaynee, your story is so familiar to me, I empathise completely. For 16 years I have suffered on and off with migraine & RLS and have only just been 'officially' diagnosed after persisting with my GP for years. I got to see a neurologist who ruled out the serious diseases. My GP has very little knowledge of RLS and told me to 'search the internet' for help and advice! I have tried most of the medication available but would prefer a self-help remedy in the long term.
I can say Pilates, reflexology and moderate exercise (a long dog walk!) do help me. Also cycling seems to calm the crazy legs enough to get a good night's sleep (or is that just because I'm so tired from the exercise!) Anyway I do hope you get some answers from your GP and take comfort knowing that you are not alone. And yes,dog walking is a brilliant idea, if not your own your local shelter has plenty of pooches to exercise! Don't give up, keep pestering your doctor until they listen and take you seriously. x
Now that is something that should definately be done as regarding doctor getting guidelines for RLS, Some doctors will have a good idea of RLS some will not. My opinion is that ALL doctors should go on a course just for RLS, they do for other types of illnesses, so they keep up to date with the latest treatments etc. as things change over time.
Exercise can be an individual thing, some it helps, some it doesnt. They say that exercise should be done before the evening so not to over excite the RLS before bedtime.
I have just adopted a little dog as i live on my own, so i get more exercise than i used to, but i dont do very long walks as i am not a keen walker like you. But at least going for a walk now is more enjoyable with a dog than walking alone, which in fact i would never do before i got my dog...
Hi Jaynee, your story is so familiar, I empathise completely. For 16 years I have suffered on and off with migraine & RLS and have only just been 'officially' diagnosed after persisting with my GP for years. I got to see a neurologist who ruled out the serious diseases. My GP has very little knowledge of RLS and told me to 'search the internet' for help and advice! I have tried most of the medication available but would prefer a self-help remedy in the long term.
I can say Pilates, reflexology and moderate exercise (a long dog walk!) do help me. Also cycling seems to calm the crazy legs enough to get a good night's sleep (or is that just because I'm so tired from the exercise!) Anyway I do hope you get some answers from your GP and take comfort knowing that you are not alone. And yes,dog walking is a brilliant idea, if not your own your local shelter has plenty of pooches to exercise! Don't give up, keep pestering your doctor until they listen and take you seriously. x
I often go for 'a walk round the block' on an evening if my RLS is bad. Most times it eases it (along with the 3mg roprinerole!) but occasionally it doesnt work. Same with a hot bath - most times it eases it but occasionally it doesnt. Trying some stretching exercises at the minute to see if they make any difference.
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