Hello.

[foogoo]

Hi, I'm a long time sufferer of rls, for years I had it at a low level that didn't disturb my sleep but in the last 10/15 years it has gotten a lot worse, sometimes even my arms are affected! (not sure if anyone else gets it in the arms?) and a good night's sleep goes out the window (also have a breathing problem at night.. nose closes up... so often I never get proper sleep and am tired during the day) I've got so used to being tired it just feels normal now. So, I thought it was time to have a look online and see what I can do about this problem, I will be reading all the info on here with interest! Cutting down on caffine is one thing that I see has helped people here... I'll be trying this! I love herbal teas so I can easily swap them for tea coffe and cola. I did try magnesium a while back and it helped for a bit but I found that it stopped working after a while and things seemed to get worse, so I stopped. The only thing that works for me at the moment is tensing the muscles in my legs... if I get the old restless pins coming on in the night I tense every muscle in each leg (one leg at a time) really hard... (as hard as I can do it) and hold it for a bit, maybe 30 secs or so, then release. I first tried this out of sheer frustration and was amazed that it helped. It usually reduces the rls enough to get a nights sleep and not be too bothered by it. I sometimes have to tense each leg 2 or three times but usually once is enough to do it. One problem is that sometimes doing this will start to give me cramp, and also it's not the sort of thing you really want to be doing when you're trying to get to sleep...I find it really annoying to have to do it but for me it's the only way to get rid of the symptoms, and it's better than lying awake with fidgity painful legs! I'd e interesed to know any other tips people have for dealing with rls, I really want to do everything I can to get rid!

Cheers

Sam

[march1044]

Hi Sam,

Like you, I had mild, intermittent RLS for years but then it started to be a nightly occurrence that really interfered with my sleep. I went to a neurologist who specialised in sleep disorders, and he prescribed neupro for me. However, I read a lot about it, and decided I didn't want to start a dopamine drug, as they seem to cause augmentation, sooner or later. I kept searching and discovered kratom. It's all I've used for the last three years. It's not perfect, but it does quiet my legs and allows me to sleep. There is a fair amount of info about it on these boards, if you search. Or go to these boards and search and there is much more: bb.rls.org/index.php?sid=d2...

Good luck to you.

[Kittyboo81 in reply to march1044]

Hiya, I've seen the word augmentation mentioned in a couple of posts, what do you mean by that? Sorry I'm really new to all this info,

Thank you

[Kaarina Administrator in reply to Kittyboo81]

Hi kittyboo, augmentation is explained in a video on the RLS-UK website rls-uk.org

[SuperMNew in reply to march1044]

Hi Sam: I don't know where you live, but I notice in looking up info on kratom that it has been banned by several states in the U.S. (Probably because it WORKS!) --sarcasm intended! So, make sure you can find a supply that will not dry up on you.

[foogoo in reply to SuperMNew]

Hi,SuperMNew I'd only use a drug as a last resort to be honest and certainly wouldn't take something that's been banned as there is a good chance that it might have been banned for a good reason and be hazardous to health. Even if a drug does work you have other problems... eg: they work only for a while and then stop, or you need ever increasing amounts of them to get the desired effect, or they have bad side effects, or you become dependent on them. Plus there are a lot of dodgy people online who try to sell you all sorts of strange drugs and potions... I found this out when my mum had cancer! Advising people to "find a supply" of a drug you know nothing about is a rather dangerous and potentially irresponsible thing btw!

[SuperMNew in reply to foogoo]

You're absolutely right! I find natural cures that are perfectly safe are often banned because Big Pharma can't make money on natural cures, so they ban them! Sad but true in the USA

[foogoo in reply to SuperMNew]

you have to jsut as careful with the 'natural cures' as you do with the pharma drugs... just as as many charlatans and greedy people after your money and willing to tell you anything to get it.

[Kaarina Administrator]

Hi Sam

Have you visited the RLS-UK website? rls-uk.org There are some medications best avoided if possible when suffering with RLS. Some of these are listed on the website rls-uk.org/#!treating-rls/czj2 and scroll down.

Many sufferers no longer drink alcohol or very seldom as this can aggravate the condition.

Kaarina

[Kittyboo81]

I get it in my arms too! They like flick out and the feeling builds up in my elbows and wrists until the flick out

[Goingthruhell]

Hi i too get it in my arms and legs...feel free to check out my posts as iv written about what tips help me...i hope u find relief soon....augmentation is wen due to meds the area u hv pain changes....i think...lol...most meds i hv tried stopped being effective after a while and i seem to get worse...i think thats augmentation...

[foogoo]

Thanks everyone, sorry to hear others have this in the arms too, I was convinced it was the same thing (rls) but I didn't get much joy from my doc ( he told me it was all psychosomatic, which I think was his code for it's all in my head!) so I wasn't sure. I only get it in the arms when it's really bad, which isn't every night thankfuly. Thanks for the link Kaarina, I'm not on any drugs for anything at the moment but it's interesting yuo mention alcohol, I'm not a drinker usually but recently I've had a couple of nights on the booze, maybe it's had an effect.. the rls has got worse recently (hence why I'm here) also eaten a lot of spicey food lately which I see can be a factor for some... I'm convinced that circulation plays a big part in my rsl so I'm going to try and keep my legs warm to increase blood flow, even though the urge is to put my legs and feet on something cool.. which gives a very temporary relief. Hot bath or shower before bed is another one I might try after reading peoples tips. I might try eating foods rich in b vits and magnesium too, possibly take a magnesium supplement again for a bit.. i remember it did work and also gave a really nice relaxing sleep. Kittyboo, I get that too sometimes when my arms or legs will flick out, it's usually when I've tried to ignore the rls and it sort of builds up until the muscles actually jump about! I'm just glad I discovered that tensing my leg muscles reduces the rls, I'd be getting no sleep otheriwse. Thanks for that link march, looks like a useful forum... amazing how many people get this! I only found out about rls because my mum had it and suggested it might be the problem.

[Pippins2 in reply to foogoo]

Hi foogoo as your mum had RLS its almost certain that you have Primary RLS ( genetic ) which is responsible for around 70 % of cases. The other type is Secondary caused by other things such as medications, pregnancy, anemia, kidney disease etc . Primary RLS is unfortunately usually progressive, starts off as an occasional nuisance then later in life becomes a problem. I am pleased that you have found a "little trick " that soon settles your legs down and the fact that this works indicates your RLS is still mild so I agree with you on not starting any medications just yet. If your legs like the cold you could maybe try one of those deep freeze sprays? Only other thing I wanted to mention is get your Ferrartin iron levels tested, they need to be over 50 preferably 70 which is much higher than that of someone without RLS? ?Most importantly learn as much as you can so if your symptoms become severe you will have the knowledge to help you make the right choices.I have Primary RLS and managed without meds for 20 years until it became intolerable and I would have made some different decisions had I had the knowledge then that I have now. Anyway once again welcome. ..Pippins2 x

[foogoo in reply to Pippins2]

thanks Pippins2, I will get my iron levels checked.

[Bajatom]

Eliminate refined sugars, flour, etc. Besides coffee see what happens by eliminating alcohol if necessary, eat more veggies and fruit. Make sure u are not taking meds that make RLS worse such as SSRIs, decongestants, etc. Have serum ferritin checked. Should be over 100. Walk at least half hour a day and stretch calves, thighs before going to bed. When RLS starts in bed, wiggle toes and fingers in a slow 1,2,1,2... tense one or two seconds, relax one or two, keeping mind on tensing, relaxing. 300 mg gabapentin helps me when nothing else does.

[foogoo]

thanks bajatom, that all sounds like good advice, I'm going to try and put a plan in action.