Please be gentle with my next question. Could I just ask if any other RLSer has Aspergers Syndrome as I do.

[Wollyhat123]

Just wondering if there is a connection. By the way I am one of the few who has found relief from SOAP, still receiving relief after 8 weeks (placebo or not.). Let's be honest, we don't all get relief from the same drug (placebo or not) and I have tried a few.

[secret_dancer]

Hi Wollyhat

I believe (along with my family) that I'm on the spectrum! I've also tried the strange bar of soap trick! Well actually I put THREE bars along the bottom of the mattress. Anything and everything is worth trying! I slept quiet well for a few nights. Maybe I need new soap? I don't know. No reason for it to work, no science behind it but placebo can count for many things being successful

[Hidden]

Hey, if it's helping you then keep at it if you want to. I wish I discovered

something other than pills to relieve my RLS.

I don't have Aspergers or much experience with it..

I did read on so many other forums that the soap does have to get

replaced..and I'm not sure how often but people do say that if it doesn't

work anymore for you, then change it. One forum insists that the soap

has to be anti-bacterial, another says it must be Ivory soap..

[Bella5]

pls tell me about the soap. Thanks

[Wollyhat123 in reply to Bella5]

Hi Bella5 . All I do is put the soap (I use Dove hand wash which I started to use after reading someone else's post) over my lower legs and feet before bed, it dries before I get into bed, and then shower it off in the morning. Putting bars of soap in my bed didn't work for me, but this method has now for many weeks, maybe placebo effect, but as long as it keeps relieving my pain, I will continue. I will post again if the effects wear off. Like Yikes, I think it is better than drugs, especially Ropinerole which was the last drug I was on - it worked amazingly well, but I had horrendous side effects and had to stop taking it after six or seven months.

[jigglylegs]

I am a qualified nurse and work with people with autism spectrum condition. I have not heard of RLS being connected although it could be possible that high anxiety sometimes experienced by people with autism could cause extreme restlessness mimicking the symptoms of RLS. I hope the soap continues to work.

[Hidden in reply to jigglylegs]

It's really important to accept that people with autism can have physical symptoms too - RLS and autism can co exist and do in my son, and no, it's not anxiety, it's RLS. And he toe walks, and that's not anxiety or proprieception, it's because his tendons and muscles can't stretch far enough. I am so tired of going in to report a new physical symptom and being asked if I want Family Therapy - no! Important clues to the causes of sub sectors in ASD are being missed because of the tendency to assume it is all psychological.

[Hidden]

Hi, my son has RLS and Aspergers, and sleep problems and autism are highly related. Many research studies (search PubMed iron/RLS) have linked low iron with RLS. That might show on a blood test, or not. I think one study found normal serum levels of iron, but low levels in the CNS - the brain. Inflammation can reduce the amount of iron absorbed by the body, and inflammation can be hidden - in this case, the serum ferritin level can be elevated because the body is storing the iron away, and supplementing iron won't necessarily help. You have to track down what's causing the inflammation - so that's easy then!

Low iron levels have been found autism in several studies but one in the US found them the same as controls. I don't think anyone has tried lumbar punctures on autistic patients - few could probably tolerate them. And no one so far as I know has yet looked at iron levels in autism in combination with inflammatory markers, which just shows how many research studies lack rigour. Not all ASDs might be affected, but I would expect a significan subsection might be.

My understanding from the research is that there is a knock-on effect from the low iron on dopamine receptors in the brain, and that's the root of the RLS. Inflammatory markers seem to be higher in autism than in controls - especially IL6. Dopamine malfunction may well be playing a part in both the Asperger's and the RLS - no one is sure.

Get your D levels up in the sun - new study links low D with RLS. Getting D via sun makes sense if you might have absorption/gut issues. Make sure you take an iron supplement but don't overdo it. Try taking a whack of easily absorbable vit C supplement at the same time as the iron. Get your iron levels tested, but don't rule out low iron even it it comes back as ok. Try an absorbable form of B6 and see if that helps.

Please post if anything helps. Soap helping if smeared on legs I guess might be having some effect on nerve endings on the skin. But it wouldn't cure the essential problem.

[Wollyhat123]

I had to have blood tests about nine months ago which showed very low iron and B12. I now have injection every three months and also magnesium supplement every night. RLS has not been anywhere near as bad as it was, although I must admit that the soap also still remains under my bed sheet. Occasionally feel creepiness in my legs, but not keeping me from sleeping. Feeling very lucky at the moment, just wish you all could find some blessed relief.

[Wollyhat123]

Hi Aspmama, sorry my message got sent before I had finished. I will try to get some Vit D from the sun but I also suffer with prickly heat so can't take too much. Will try supplement of vit D to see if that helps help me. Thank you for the suggestion.

[Hidden]

Fantastic, Woollyhat. So pleased you have found a cause. Thank you for posting the solution you found. Could you keep watch and see if the RLS gets worse when you have a flu virus or any infection? You'd exxpect that...

[Wollyhat123]

I certainly will post again if any infection triggers it. Not thinking of having flu jab again though as a friend of mine has had serious side effects, ended up not being unable to walk for 8 months and still has to use a stick. I have had one every year now for 7 years and had no side effects, but this has scared me.

Can't believe how lucky I am at the moment with the relief from the nightly RLS, I still think of everybody else at bedtime who dread the next 20 minutes and the on-set of the horrid RLS. I say relief and not cure as I still dread it returning, I do hope you all find something to give some relief; after 30 odd years, I still can't believe my luck at the moment.