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[vinnybob777]

Hi fellow R.L.S sufferers, had this since 1968 although not properly diagnosed till 2013, tried a multitude of things.Is it me or does any one else find that the only way to really get any relief is to either inflict a bit of pain to limb or plunge feet into the coldest water you can find.

[Madlegs1]

There are plenty of medications available for rls. They all have side effects.

It might be worth your while to read up about them on

rls-uk.org

rlshelp.org

And also read up the letter/posts on those sites for personal experiences.

Everyone has a different experience of rls and much of the time it is a matter of experimenting.

The remedy you describe works for many people with mild rls.

[involuntarydancer]

Hi and welcome, VinnieBob.

You have certainly suffered for a long time.

Cold to the legs/feet is often recommended. I sometimes find it helpful - as Madlegs says, it depends on how severe the attack is. Lots of people resort to punching their legs. I’ve never found it did any good.

I find that 20 mins or so of avery diverting activity such as a video game can give an hour or so of relief. Sometimes a cup of coffee helps.

Raising iron levels is helpful to many so get iron levels checked is important. Ideally aim to get serum ferritin levels over 100.

Medication is the only thing that works reliably me for me however ...

[LisztLover in reply to involuntarydancer]

I drink coffee in the middle of the night, which helps me, usually. My husband fusses at me about the coffee and doesn’t understand, really, what I go through. When it’s really bad and I start feeling hysterical, he will massage my legs. Sometimes it helps and sometimes I can’t relax my legs enough to get any benefit from the massage. When I’m exhausted from being on my feet for 12 hours at work combined with poor sleep, I will sometimes feel hysterical and this, of course, makes it worse. The only thing I have to help me at this point is cannabis. I have no prescription meds to help me. What a way to live!!

[vinnybob777 in reply to LisztLover]

you should see your gp, there are several meds available, i have pramipexole which is not great but most of the time will take the edge off. am also doing all the supplements recommended and trying CBD oil, research on the subject is poor in this country but in the good ole U.S of A they have 1 in 10 sufferers so research is pretty good, they have some good ideas, one of which is a low dose of pramipexole and a strong painkiller, am trying this as well, it does seem to work. good luck

[Merster in reply to vinnybob777]

If Pramipexole does not work try rapinerole, that works better along with 30 mg or ms contin. I have it sorta under control

[involuntarydancer in reply to LisztLover]

It is no way to live. I note you take Kratom. I find it very effective against the legs - at least as good as any of the prescription drugs and less addictive than some. I also take cannabis but don’t find it much use against the urge to move. I take it because it really helps me to sleep as I have insomnia which I believe is connected to my rls.

[vinnybob777 in reply to involuntarydancer]

The meds work a bit for me, think am on top dose of pramipexole and some nights can get 4 hrs, on a bad night i just get up, cup of tea, do the crossword, anything to distract, i also find walking round the garden in bare feet helps a bit

[involuntarydancer in reply to vinnybob777]

Yes walking on cold grass is good for me and I’ve seen a few others mention it. Be very cautious with pramipexole and any of the other dopamine agonists (ropinerole/requip and neupro/rotigotine). They work well initially and then turn and effectively start to feed the condition making everything much worse in a process known as augmentation. It is particularly important to ensure a high serum ferritin if taking a dopamine agonist as there is a link between augmentation and low iron.

[Allyp69]

You have had RLS a long time..like me. I have tried cutting out alcohol, caffeine etc during the evening. Copper bracelets help a lot but not on a long flight....tried Valerian...useful for sleeping..and listening to music using headphones..does work ...have not tried any other medication but another member of this group suggested inositol nicotinate...The main trigger for me is tiredness, boredom and sitting for too long...walk every day...Hope you get some relief.

[vinnybob777 in reply to Allyp69]

gave up alcohol and smoking, i think it got worse after that, probably because a little snifter at bedtime helped the sleep. i have ordered the inosital nicotinate and will give it a go, nothing to lose, over the years i have tried most things apart from the old wives tale of putting a bar of soap in the bottom of the bed. kinda figure thats gonna be next

[LisztLover in reply to vinnybob777]

I’m with you!! I’ve been told the same ludicrous story! It just may be my next move, Hahaha!

[involuntarydancer in reply to vinnybob777]

Alcohol makes the legs worse for most but I have read the occasional comment that nicotine helps.

[LisztLover]

I use ice packs on my legs as a last resort and get varied results with it. My 2 biggest helpers right now are Kratom and Cannabis. I’m becoming unashamed of using these 2 things as they’re helping to provide sleep at this time. I also use Magnesium Oil Spray and compression stockings that give me varied results too. It’s such a battle and I understand...

[vinnybob777 in reply to LisztLover]

when you say cannibis do you mean CBD oil, am trying that now, along with the pramipexole from gp and various other supplements. have found if i take a co-codamal or one of the dogs tramadol, they are the same as for humans by the way hahaha, anyway with one of those at bedtime i find i can get 4 hrs then awake, a little wander around and then can get another 3-4 hrs. forever searching for the entire nights sleep. Am graded by gp as being severe so i agree with you, it is such a battle, but hey ho, keep smiling and carry on trying.

[rsears57]

I HAVE my husband punch my legs

[vinnybob777]

bit extreme, but i do understand, i do it myself sometimes

[Merster]

My massage therapist really digs deep and that hurts like hell. It does slow it down for a week or so. I have a rolling tube and that hurts too and I find it stops it dead in the middle of the night. Try the tube