RLS Help, no drugs

[wlippincott]

When I first developed RLS 10 years ago I got rid of it by limiting saturate fat in my diet and completely cutting out gluten. Gluten was the big trouble-maker (I made repeated attempts to check this out, it all confirmed it). However, I developed it again in a big way when I cut dairy out of my diet. Turns out, dairy is very high in lysine, which limits the HSV-1 (or HSV-2), oral herpes, virus. I had changed to eating a lot of nuts, which are very high in arginine, which the virus loves. The HSV-1 virus (which almost everyone has) hides in nerves, so I figured that I had some virus in my sciatic nerve (under my knee) and that was getting activated by the high arginine diet. So, I put non-fat dairy back into my life and supplement with lysine (particularly if I eat nuts). I’ve also completely cut out saturated fat (including coconut oil and cocoa butter (think dark chocolate)) and gluten (very important to get rid of). I also put some clove oil under my knee (which the virus hates). This all helped immensely! Thank Heavens! It is a terrible problem. Hope this helps someone else.

All of these changes mean I eat a lot healthier. So I figure my RLS was a bell-weather signal to get me to eat healthier. I can take a bit of dairy fat (not much) and also MCT oil. Magnesium is good. I got off caffeine, but not sure what effect this had. Supposedly it’s bad for an HSV infection. Hot bath at night with Epsom Salts. I can still have a bit of RLS, but not near what it was. Mini-tramp helps.

[Joolsg]

Delighted to hear you’re getting relief from diet and supplements.

Thanks for sharing that info.

[Jumpey]

Hi. How long did it take for you to see the effects of a gluten free diet? I have been gluten free for 3 weeks and my RLS continues as before.x

[wlippincott in reply to Jumpey]

The first time I had RLS removing Gluten fixed the problem within a day or two. This second time, it was all about supplementing with Lysine (for the HSV-1 virus) and adding some dairy and being careful about nuts. That fixed things pretty quick (in a day or two). But I'm off gluten and very low on saturated fats as well. So it's a combination of things that helped. Melatonin supplements seem to set it off too, so I avoid that. Hope this helps.

[KellyDBrille in reply to wlippincott]

Lysine raises ammonia levels -- gave me INSTANT RLS. Everyone's different, so what works for one won't work for another. But high ammonia is highly connected to RLS.

[CORFUORBUST]

I am a coeliac and haven't eaten gluten for 10 years since diagnosis. I have now got extremely severe RLS and PLMD since last year, so I don't understand that eliminating gluten helps anyone except a coeliac.

I believe if you think it helps then that is good for you and I do not mean to discredit your diet, but just find it strange that I have got RLS and PLMD when I eat not even a trace amount of gluten and have done so for so many years.

[Jumpey in reply to CORFUORBUST]

This is really interesting to me. I have been experimenting with gluten free for 3 weeks with no impact on my RLS symptoms . My father had RLS and was coeliac. It was recommended that gluten may be causing my symptoms by my chiropractor who is also a kinesiologist specialising in food allergies. I will continue with gluten free for another month or so. However I'm not convinced this will stop my symptoms.x

[wlippincott in reply to Jumpey]

Try supplementing with Lysine, 1000 mg 3x per day is what some people recommend. It's not just gluten that was the problem for me, saturated fat was bad and not enough Lysine.

[KellyDBrille in reply to wlippincott]

Lysine raises ammonia levels -- gave me INSTANT RLS. Everyone's different, so what works for one won't work for another. But high ammonia is highly connected to RLS.

[wlippincott in reply to CORFUORBUST]

Try supplementing with Lysine, 1000 mg 3x per day is what some people recommend. It's not just gluten that was the problem for me, saturated fat was bad and not enough Lysine.

[Jumpey in reply to wlippincott]

Hi. Thanks for this advice. What is Lysine for/what does it do?x

[wlippincott in reply to Jumpey]

It's an amino acid present in a lot of foods, so a natural supplement. You need to look it up on the web, search 'Lysine and HSV' . It's all over.

[Jumpey in reply to wlippincott]

Interesting. I have taken other amino acids(GABA,5HTP) which haven't improved my RLS. may be worth a go.x

[Graham3196 in reply to CORFUORBUST]

I had RLS for 50 years and then it became severe' I adopted a gluten free diet and found an improvement, I went onto a FODMAP diet (staying gluten free) and found another big improvement. I incidentally found that I was lactose intolerant and I also stopped taking caffiene.

I suggest that you get your doctor to help you with a Low Chemical Diet from the Royal Alfred Hospital In Sydney Australia, Perhaps start by going gluten free, lactose free, caffiene free Alcohol free on a FODMAP diet. These diets are exclusion diets (they exclude everything that looks delicious) You go on the exclusion diet for a while until your symptoms are all gone (if you're lucky) then introduce foods again one group at the time until you identify what is causing you a problem, If all goes well you will finish up with a small number of foods to avoid. In many cases you dan't have to do without but just limit the amount you eat. For example I can drink a half glass of milk per day but a glass per day brings on the RLS. You need a dietician to help with the re-introduction phase.

I took about 12 weeks on the FODMAP diet before I was substantially symptom free.

Feel free to ask any questions you may have.

Good Luck This is a big effort so I hope you are rewarded for it all by lots of sleep.

Graham

[CORFUORBUST in reply to Graham3196]

I am following a strict gluten free diet for the last 10 years. I have been on the low fodmap diet for 5 years alongside going lactose free. I have been on decaf tea and coffee for 2 years. I have only had rls and plmd for 1 year. I have also become diabetic 8 months ago. Work that out????? Any further help will be greatly appreciated. There is not many foods left that I can cut out of my diet.

[Colmo]

Has anyone tried a weighted blanket. I feel

RLS all over my whole body. I take a cocktail of meds for my bipolar disorder that I can’t really mess with.

[involuntarydancer in reply to Colmo]

I think there were some posts about weighted blankets a while ago. It might be worth trying the search bar. I can't remember what the verdict was. You could also look at the relaxis pad though it is VERY expensive and doesn't work for everyone.

[Graham3196 in reply to involuntarydancer]

From memory I think the Relaxis pad is covered by an excellent guarantee that if it doesn't help you then you can get your money back. I think someone in this forum said they had experience where Relaxis had honoured that guarantee. Its all a bit dim in my memory this morning.

I have kept awake by a very interesting Azerbaijani Formula One Grand Prix. I am in Australia so we get it live at 10pm until midnight.

[Graham3196]

This is an interesting thought. It hadn't occurred to me that there could be a connection with a virus. I presume that HSV stands for Human Simplex Virus If so i have it in my system and it shows itself as cold sores. When young I had horrible embarrassing cold sores that lasted about 6 weeks. They would come on when I was extremely tired or under some mental pressure. They really flourished at exam time. Somehow I discovered that vitamin C would suppress them. Many years ago I took about 6000mg as soon as I had the tingling feeling that occurs before the blister appears. Usually the blister phase was phased out! I think I took the 6000mg for about 3 days Now I take 1500mg every day and I haven't seen a suggestion of a cold sore for 12 months and that was when I managed to forget about the Vitamin C for a couple of weeks. All these supplements can cost more than food if you're not careful!!!

Note that the vitamin C also helps iron absorbtion.

Now I have to wonder what would happen to my RLS if I raised the dose of the Vitamin C? I think I need some knowledgeable advice before I go any higher but it could be interesting.

Meanwhile I will read up on lysine and probably give it a go. Does anyone know any contraindications for lysine?

I also have some sciatica and arthritus so perhaps lysine will help there.

[wlippincott in reply to Graham3196]

Interesting about the Vitamin C and HSV. I normally take at least 500 mg/day, but that wouldn't be enough. Lysine really shuts the HSV down, and arginine lets it flourish, so definitely read up on those amino acids and what foods you're eating. You can calculate what your lysine deficiency is from that. If you don't do much dairy and eat lots of nuts, then you have a large lysine deficiency. But supplementing with lysine is easy. So I would do that and the Vit. C. Many health sites have that information on HSV and Lysine. I honestly believe the HSV is responsible for many many illnesses. It gets disseminated in the body. Good luck!

[Graham3196]

Thanks