Reflexology for RLS

[Memmy]

Has anyone tried reflexology or any other alternative therapy for rls

[involuntarydancer]

I had one session of reflexology which did absolutely nothing - maybe you need more but I am sceptical. I spent a lot of time (and money) on acupuncture which was useless also - I have yet to read of a sufferer who attained relief with acupuncture. Soap in the bed has more adherents and that's saying something. I note someone is posting about magnetic mattresses at the moment which seems a bit more .... plausible isn't exactly the right word but something in that area. It piques my interest anyway.

[Memmy in reply to involuntarydancer]

Thanks, what is the soap in the bed about?

[involuntarydancer in reply to Memmy]

Oh, it's an old wives tale: if you put a bar of soap in the bed (I think it has to be under the sheet) it helps with the legs. I probably shouldn't have mentioned it as it sends certain members wild when they see it alluded to. In fairness there must be some sort of placebo effect because some people find it does help initially. It is one of those awful false dawn suggestions however. The effects never last.

It provokes such ire that I almost considered setting up a false user name to answer your question!

[Memmy in reply to involuntarydancer]

Thanks, I'll give anything a try

[OFgc in reply to involuntarydancer]

I read somewhere that it has to do with the fact that there is magnesium in soap (is there?).

Dr. Axe here talks about chiropractics as alternative therapy

youtube.com/watch?v=g90U6gP...(Not working as expected?)

[Madlegs1 in reply to involuntarydancer]

Bloomin rite!😈

[lorrinet in reply to Memmy]

Despite the mirth associated with this soap business, I decided to try it anyway, since the soap wouldn't go to waste. So i bought a bar of natural, unscented soap, put it in my bed and.....it made no difference whatsoever. I gave the soap to my husband to use in the shower, but he reported an uncomfortable stinging sensation in an extremely private part of his anatomy, so I threw it out.

[Hidden]

F** me do not waste time with the soap in the bed UNLESS you have a strong mind and can get the placebo effect.

I've tried Reki which was great for a busted knee but useless for RLS. Tried acupuncture which I din't find any benefit from. Had one session of Reflexology that didn't seem to do anything for me.

The single best thing I have done which has brought me fantastic relief is to be gluten free and vegan. It takes a bit of effort and planning but after 45+ years of suffering including pushing me to the edge of suicide I have relief from my RLS, my body is quiet and I can sit in peace - I sometimes jiggle my legs from habit and my wife has to remind me I am not suffering with any symptoms!!!

[involuntarydancer in reply to Hidden]

What do you eat for breakfast Raffs? Are oats gluten free? I am trying (and failing) on a daily basis to adhere to your diet. Any/all useful tips gratefully received.

[Hidden in reply to involuntarydancer]

I don't eat breakfast at the moment. I have some fruit for lunch or maybe even skip lunch. I have a dinner and for supper I have oats - they say they aren't gluten free as they are processed in a factory that does other stuff but porridge oats are gluten free.

If you wanted you could have vegan bacon and scrambled egg substitute with GF toast, (slices are so small).

I have found that changing my diet has left me that I am not so hungry its a great way to loose weight if you wanted to. My energy levels are up too although I have to be careful I don't do too much or the ME kicks in.

[involuntarydancer in reply to Hidden]

Bloody hell; is there anything left of you? I went through a phase last summer where I ate very little and I did sort of fade away. My body is obviously trying to make up for that time now because there is no way it would settle for one meal of oats and a couple of pieces of fruit at the moment. I am a lot more 'substantial' again as a result.

[Hidden in reply to involuntarydancer]

lol I was a man of 16.5 stone at one stage in my life I am now sitting at 10!

Yeah it can be a bit restrictive especially since some of my vegetarian food like Quorn mince has egg whites in it and rules Quorn stuff out but there are plenty of vegan styled things in Tesco & Asda. Also Veg curries and stews are easy to make, tasty and you can get a good variety of veg in you. Roast leek, peppers, onion, etc (I like to roast a few sprouts) add a tomato sauce and serve with rice/pasta/chips and its a great tasty meal.

If I wasn't getting such great relief I wouldn't be vegan, hell I wouldn't even be vegetarian either but after a fit of self pity and the resulting burger that had me up all night with RLS I know what I need to do and if it meant a diet of water and toast I would be saying fill my glass and burn my toast, (love burnt toast).

Its amazing, and somewhat depressing how many people would refuse to even try this giving me loads of excuses. I have a friend who is a nurse and long story short is not having a good time with his health. When I suggested the change in diet he refused saying he would prefer to rely on the medications, (not the right response from a nurse). People on here have backed away from the idea even though they cannot control their RLS and say they are suffering - if you are suffering do what you need to do to end it and a change in diet is a very VERY easy option.

There are lots of vegan web sites and my problem is I am a very fussy eater so if I can manage it I imagine most could. I had planned it out and said I was only doing it for a month to see, less than a month later I was in hte best shape I have EVER been regarding RLS and it allowed me to stop the Neupro patch and tramadol that was clouding my mind and distorting my thinking without me even noticing, (I blamed it on my M.E. which I now realise was wrong). I always said I would lick the road if it meant relief so a vegan sausage and spuds is a much nicer option .

I am proselytizing at the moment I am so delighted at my relief that I must spread the word, (not worried too much if people wont here the message those fed up with the suffering will try it and those not finished suffering can hold the info until they are ready!!!!

[jimmcar in reply to Hidden]

You are so right. I went on a raw, vegan diet years ago and got off my meds. I proselytized also - I was so excited and happy and wanted to share the good news - but nobody paid any attention to my posts.

In any case, the good effects wore off after a couple of years and I now keep my RLS under control with a combination of mucuna powder, Sinemet and edible cannabis. I'll switch in kratom every week or so to avoid building tolerance to the Sinemet/mucuna combination.

[OFgc in reply to Hidden]

By not eating in the morning you are kind of practicing intermediate fasting which is part of the "Ketogenic" diet, which is another good thing for the brain.

youtube.com/watch?v=9xyIpdV...(Not working as expected?)

(I'm not recommending anything, it just made me think of that).

[Hidden in reply to OFgc]

Yeah been doing a little bit of that as I have a mate who swears by the 5/2 diet and says he feels great on it. I have found that bit of fasting attracts me and I used to have a fast day every week but this way I think is better.

Diet is SO important that it needs exploring and unfortunately Drs are more likely to prescribe cholesterol drugs and B/P drugs than push dietary changes, (they will advise that as they write the script for the drugs), as it is the easier option yet I have gotten off drugs for a B/P problem that I solved by stopping smoking, exercise and diet - I lost 4 stone that time and became fit and instead of carrying on my old ways I changed what I needed, I never thought it would be good for the RLS or I could have saved 16 years suffering from that time, (45+ years if I have gone vegan as a child).

[Madlegs1 in reply to involuntarydancer]

Many farmers around me (Ireland)grow gluten free oats on contract . So they must be going on into the food chain as such.

Gluten is basically the protein element in plants- so should only be avoided if actually tested as an intolerance, for , rather than as a fad- which it is being marketed as by a lot of food manufacturers.

Vegans also need to be watching iron levels.

[Hidden in reply to Madlegs1]

I was never tested for intolerance I was tested for Celiacs and I am not suffering with that but I have identified gluten as a major factor in my RLS and in stomach problems - if I eat gluten within the hour I feel sick as if a lump is in my chest and soon after my body starts to twist and turn. I can eat food with gluten not knowing and can tell then from my body's response that I have eaten it. I have stopped omeprazole since discovering the negative effects of and stopping gluten.

I have a friend who was always banging on about gluten being bad and we aren't designed for it but I thought she was just being her usual hippy off the wall self, man was i wrong - she had it right gluten is very problematic for a large proportion of people. Some info here:

paleoleap.com/11-ways-glute...

Yeah I take gentle iron, B & D vits, and some other supplements that are anti-inflammatory like Q10 I have posted the full list elsewhere on here so a search of my posts should show it it can't be found I will list them again.

[Madlegs1 in reply to Hidden]

Self testing is as practical as any so called scientific tests. It's all about exposure and experience.

The Paleo setup is mostly about "processed " foods. Post agricultural revolution c 10000 yrs ago. That makes natural sugars "ok" but artificial sweeteners" bad"-- and so on.

The whole trick for all of us is to find out what works for us as individuals and stick with that.

It becomes an interesting and challenging journey.

Delighted for you Raffs , that you are getting relief after all this time.

Cheers.

[Hidden in reply to Madlegs1]

Cheers buddy, am so happy about it and still after a couple of months find it unusual and quite novel that I am not kicking or pacing, or stretching or jiggling or in pain or frustrated and the list goes on.

The reason I went vegan was form those posting here about Paleo and low food map diets - that gave me the idea, another win for healthunlocked.

[OFgc in reply to Hidden]

May i ask how bad were your symptoms prior to going vegan? My husband seems really bad right now. I could see his symptoms getting worse over the last 12 months. Sometimes his hands look like they are moving on their own and he needs to hold them tight together or hold one of them between his legs. Really difficult to watch. I think my husband is in denial as he is doing nothing about it.

[Hidden in reply to OFgc]

I had it all over my body and was taking Targinact 40mg twice a day, Neupro 2mg, Tramadol 100mg and lots of cannabis and STILL my body was at war with itself at times so bad I couldn't leave the house as I was flailing my arms and legs and couldn't even sit in a car.

It was never under control and at best I had it in my legs and a 'ghosting' sensation of it in my back and arms at worst I was rolling on the floor in agony hoping I would take a heart attack or stroke as I wanted to die but wouldn't kill myself.

I cried, I sat and wept at my pain and annoyance and as an old school Irish man crying is not in my make up, (been brought up with men don't cry) and barely shed a tear at my mothers death but had to cry in frustration and self pity.

My RLS has been terrible and really invasive as it has effected every aspect of my life with me sleeping apart from my wife for months at a time and if the RLS wasn't annoying her the PLMD got her when I slept!I

At its worst I bought stuff to kill myself with but thankfully didn't go through with it due to my parental responsibilities. It was 20+ hours a day of unmitigated pain and torture that had me at my wits end.

That is a small snapshot that doesn't do justice to the pain and torture I suffered. Now I still take the targinact as I have pain issues but I am not waiting desperately to get it. I have stopped the Neupro and tramadol and my life is so much better I wish everyone with RLS could get this level of relief, (and maybe they can with a gluten and animal free diet).

Funny you say about your hubby in denial. My father has RLS - I've witnessed it and know from what he says he has it yet ask him and he denies anything is wrong. I have seen him at night in bed moving his legs yet they are not restless! Old school men need a slap sometimes!!!!!

Hope that helps.

[LotteM in reply to Hidden]

Raffs, I am so happy for you and so proud of you. Even though you had a very strong incentive from the severity if your rls coupled with your ME. Still, you had to start the diet not knowing whether it would help or not. And your diet IS an effort- at least at the start.

You have changed into a strong and convincing advocate. It is so worth a serious try. I have been putting it off, for various reasons, including med changes. But I won’t any more. Will go on a vegan shopping tour this afternoon.

One question: do you also avoid “traces”? I.e. of gluten and lactose? That would limit things even further, and - like ID - I still crave for a lot of food. Although I have succeeded in keeping my weight under control more or less ☺️.

[Hidden in reply to LotteM]

Yup all traces were a no no, (although I have had a few slips), bloody milk powder in crisps and wheat in crisps - the b@st@ards have sneaked milk powder, eggs and wheat into everything, (makes the apples taste funny ).

[OFgc in reply to Hidden]

Thank you. It does help. Its terrible hearing how bad you had it. And I'm glad for you and encouraged you are so much better. I am married to my husband 21 years and he has never mentioned it. I see he is really uncomfortable, fighting his own restless hands and legs almost all day long, especially as you mentioned, when sitting in a car (it's worst then). I am hoping he is no way having the pains you described. Lately I'm biting my lips not to say a word. I want him to take care of himself with vitamins and a proper diet (he is not run down in general only RLS speaking) but I cannot reach him and seeing him like this is really troubling for me. I don't know what to do.

[terrilynn35 in reply to Hidden]

I have had great success with gluten free and sort of vegan ( not completely strict on the vegan part lol ). From my many years on ropinirole I developed a compulsive eating and shopping habit and gained a ton of weight. My goal was to loss the weight I gain from my compulsive eating and a happy side effect from changing my diet was decrease in RLS! I am almost to my pre ropinirole weight and no longer compulsively shopping online. On occasion my RLS will act up and I noticed it especially with artificial sweetens or wine . When needed I use kratom and that takes the RLS away. I am much happier being off the medications.

[Memmy]

That is so intetesting about the gluten free diet. I find sugar affects me

[Hidden in reply to Memmy]

I can take large amounts of sugar in the for of syrup, (love a spoon of syrup in my coffee) and no negative effects are evident to me - one thing I am glad about as I love my sweetness.

[kelirock]

Hello Memmy I have tried kineseology and Bowen therapy for RSL. Neither were successful unfortunately.

[2everett]

Hi

May I suggest you look up TMS on You Tube. Watch a couple of videos. Then purchase a book on the subject. Then join a TMS forum. I did all of the above. My RLS has disappeared and my ankle pain has also gone.

Hope the above helps.

[Memmy in reply to 2everett]

Thanks, I'll do that

[2everett]

Hi

Re TMS it stands for Tension Myositis Syndrome

You might like this You Tube video

Chronic Pain is an Epidemic of Fear