I like to sit and watch TV in the evening - but my RLS soon stops that. 3 days ago I tried sitting in my chair, bum well back, feet on the floor a few inches apart but knees as far apart as is comfortable. You can then feel a slightly different part of your thigh is making contact with the seat of the chair. You can also rest on the outside edge of your feet if this helps to let the knees drift apart. I have done this for 3 days now and find I can sit for a much longer period of time before the RLS kicks in. Unfortunately it does still kick in - eventually, but a longer period of relatively comfortable sitting is very welcome!
Ever-hopeful Mary
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Mary-Steward
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I find my RLS is starting earlier in the evening now ,when it starts I sit on the edge of my seat and really push my thighs and bum hard into the seat and hold there as long as I can sometimes it helps if I can sit long enough ,, I have been put on codeine and half a tab clonazapam ,,but twitching not stopped as yet , only two days in ,so hope they will kick in SOON
Just a thought, do you take some of you medication early. In fact what meds do you take? I take my first pill at 7pm or else the RLS starts, then the second a few hours later, as most of us do I think, otherwise I would be in trouble !
I take 3 Mirapexin at night - about 10 years ago this worked well. My Doctor has never offered any more help - the Mirapexin was recommended by the Papworth Hospital sleep centre. I get RLS in the night now, but not as severe as I would without the drugs. I sometimes suffer all day AND all night and have even thought about suicide. Luckily I did a self-treatment (for something else) called 'Thrive' and this teaches you how to change negative thoughts - without 'Thrive' I'd probably be dead by now!
I have taken clonazapan tablets for quite a while and they were marvellous for about 2-3 years. Unfortunately I got used to them and even when I increased the dose they didn't work any more. I have been nearly out of my mind with restless legs and no sleep every night until someone told me about an article in a newspaper where Dr Martin Scurr recommended PRAMIPEXOLE to his patients with restless legs. My Doctor put me on the lowest dose to start with and it is wonderful. Right from the first tablet which I take 1 hour before bed and I no longer have it. I can go to bed knowing I am going to sleep. I couldn't believe that such a little tablet would change my life. Hope it helps someone else out there. jonjo
There are excersises you can do to help RLS. I went to a chiropractor after somebody told me she had had relief from RLS. I must admit they helped enormously, but you must keep doing the exercises regularly.
I've just started to see a chiropractor who specialises in neurological cases and he's given me exercises I have to do every day to retrain my brain. I'm going to keep doing them now I know they've helped you. Thanks for sharing that info.
I have posted on here my experiences with Chiropractic care. It really helps. It addresses the problem of nerves being pinched anywhere along your spine, that then are the nerves that run down to your legs. There is still an internal imbalance, with RLS, going on in your body, but releasing those nerves makes the RLS much less severe.
I go once a month to my chiropractor. In my life, I have fallen on my tailbone several times and compressed the bottom quarter of my spine. My sacroiliac (tailbone joint) goes out. The Chiropractor puts it all back together. If I need to, I go more often.
Some exercises that also help are stretching exercises. I do Miranda Esmonde-White's Essentrics and some Yoga. It helps to keep the spine and all the joints flexible and loose.
Sitting too long causes pressure on those nerves. I will often stand up and lean over the back of my couch or a chair to get a stretch while watching television. Sitting on hard chairs or toilet seats, and as you point out, on the wrong part of your bum, aggrevates the nerves. Sitting correctly does help. Also, the nerve irritation is positional, in that when you lay down in bed, on your back or either side, or your stomach, it affects those nerves and they can start to tingle/pulse, etc. When you stand up it goes away.
One thing I do, when laying in bed, on my back I stretch one leg straight up. Then I hold my ankle with both hands and pull my leg down toward my face. This gives a really good stretch to the lower spine, which may have been compressed a bit by sitting too long, and seems to help for several hours. Then I do the other leg also. This is a common enough exercise, also it is in Esmonde-White's Essentrics.
The internal imbalance that seems to cause RLS - now, that is a different story.
Oh my god!! I damaged my coccyx in December last year and recently my rls is so bad, I'm getting it day and night, I never thought of linking the 2!! I see a chiropractor once a month for my back and have physio every 3 weeks, next time I go I'll have to mention the rls, thanks!
I am impressed with your research and work and that of DicJones. You two have drawn a picture for all of us I believe. I now realize that RLS is one long road from the brain where we need iron to facilitate the movement of dopamine down our "spinal pathways" from where it goes on to relax our legs. If our spinal pathways are less than optimum or if our brains are starving for iron then we will pay the price in the form of RLS. Because of all that you have done for us I felt compelled to give you this---
Thank you, White Buffalo. Sorry I did not see this sooner, but, yes, it is very interesting and informative. It certainly shows that an abnormality of the spine, temporary or permanent, can cause RLS to be exaggerated as it causes the pathways of the spine for the dopamine to travel, to be interrupted.
I hope other people will sit up and take notice. While the spine is not the sole cause of RLS, if it is not functioning correctly it causes the RLS to be so much worse. If the issue with the spine can be fixed (and granted, some cannot) it makes the RLS much less pronounced. Then other treatments don't have to be so severe.
Interesting isn't it. Well there has been an interesting turn of events. I have been taking two tablespoons of apple cider vinegar a day for an enlarged prostate for about the past two weeks and recently some nights I do not have RLS and do not need to take iron. I do NOT recommend vinegar over iron because I also stopped the topical Rogaine I had been using for the past 18 months. My RLS has gotten much worse over the past year or two and I chalked it up to age as many people on here noted happens. Now I believe it might have been some combination of Rogaine and maybe the aging process that made the RLS a nightly and sometimes daily event for me. I'm going to put vinegar in the search box and see if anyone else noticed this but at this point I'm not claiming that vinegar will help RLS.
I know someone who puts it on topically for RLS, and swears it works. Mine has not been very problematic lately - even tho insomnia has been terrible this week - insomnia without RLS! Can you imagine? But then people do get insomnia without ever having RLS, so it looks like they may be two different things, at least sometimes. The problem is not always knowing -it's guess work and sometimes something works and the next time it doesn't. Just shoot me!
Insomnia is a tough one. And often it's like a cat chasing it's tail, very elusive. I won't even bother going through the litany of things like getting up and going into a different room, turning on the TV, etc. I would try to take the iron as close to bedtime as possible under the assumption that if it relaxes your body it should do the same for your brain. Also, I believe it was DicCarlson on here who found that one type of magnesium was actually energizing rather than sedating. I think it wasn't until he tried Magtein that he was able to take it at night.
Ha! It seems I have now turned the corner into restful sleep, with good dreams, and if I wake up I can go back to sleep rather easily. Checked thru my books again and - how could I have forgotten about this?! - bioidentical progesterone cream made the real difference. My problem is that sometimes I am inconsistent, and after something has made a big difference, I think I don't need it anymore and stop using it. Silly me! This time I will remember.
It's a little bit difficult to describe the excersises. One of them is lying down on your back and bringing one knee up towards the chin and hold for several seconds and then repeat on the other leg doing this for about 5 times and then. Bending your left knee towards the right shoulder and vie versa on the other leg. Also lying down with knees raised and swinging your knees from side to side. There are some others wHich are a little more complicated to describe on paper but the ones I have mentioned will help. Have you considered seeing a chiropractor who would probably tailor make exercises to suit you? Best of luck.
I do these exercises, just as you describe them, and I have a chiropractor I see once a month. I'm glad to see other people using these interactive physical treatments and not only relying on drugs. There is a lot one can do for RLS to keep the pathways of the spine open, so any drugs one might still need could perhaps be in smaller doses. Stretching and flexing the spine is a great daily maintenance for RLS. The worst thing is to sit around and do nothing.
I had RLS on and off since I was a very young teenager. Whenever RLS kicked in, I would go to a Chiropractor and he would stop it every time but unfortunately he left the area and although I have been to others, they have not helped. Since coming off Norspan (opiod) patch last year I have had continuous RLS (and full body) big time. I have been on Pramepexol (Sifrol), Lyrica (which put on weight), Clonazepam and Tramadol. I have weaned myself off everything except for Tramadol and an occasional 1/2 Clonazepam or 1/2 Valium. I also take hot showers at night and relaxation exercises immediately RLS kicks in and they do help but one always seem to have broken sleep with this rotten thing. Nothing seems to be a real cure....just trial and error. I have also started having Atavostatin (for cholesterol) at lunch time as I have found it exacerbated the problem.
It is hard I agree. I take Mirapex too, but like lots of us also add on a painkiller and I also take magnesium. Hope you have looked at all the different medications we all use and perhaps you need something else. Good luck.You will find a lot of support here.
Hello Mary-Steward. I will certainly try this way of sitting...not very lady like though but who cares if it works.
Has anyone noticed that Statins (for cholesterol) exacerbates RLS??? Maybe Raffs or Elisse will know. Lately I have been taking it at lunch time, so when I am ready to sit down and watch TV around 5.00p the RLS doesn't kick in.
Definately, going to try that tonight. My legs won't leave me alone for more that 5 minutes! So aggravation sometimes I wish I could have prosthetic legs, because I can't stand mine anymore. Till then, Ill try changing positions. ☺thanks
Hi Mary, I've had RLS all my life. I've always found that sitting or lying with my legs apart helps relieve the feelings - at least for a while. It's when you have to sit or lie with your legs together that it can really start to kick off. Also, sitting with your knees apart and feet together stretches the upper thigh muscles and that always relieves or staves off the symptoms. In fact anything that gets the thigh muscles working helps, which is why of course walking stops it. Now that I'm on Tramadol for back pain and sciatica I don't really suffer from RLS, thankfully, but I struggled most in my childhood with RLS affecting me every night and sometimes when I was in class. It's a horrible thing.
Like you, I've had my TV viewing and evenings spoiled by RLS and have often had to give up and go to bed, when lying down (with legs apart) has helped.
I hope you continue to get relief. I've also found just thumping your upper thighs when sitting helps, albeit temporarily!
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Would you be willing to feature as a case study on RLS-UK?
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