'Hacking' RLS. New to the forum. List everything that causes / worsens RLS.

Hello Everyone

I'm new to the forum and first want to say, WOW, so nice to see how many bright individuals are sharing their experiences with RLS and are so well informed.

I am a 45 year old female. RLS runs in my family, my mother used to call it "Crazy Legs" and even as a child I remember nights getting up "I have the crazy legs" (lmho) now, thankfully this disruption is acknowledged and studied by the medical community.

At 29 I was catastrophically injured in a Car wreck and spent 2 years in the Hosp , I still average about 2 surgeries a year. Let's hope I'm done for a while Prior to my accident I would lay on my right side and rock my self to sleep. After my accident due to serious injuries I could never rock myself to sleep again and RLS has me laying in my extremely comfortable bed flipping around like a fish out of water. My poor hubby ( We have separate top sheets and I swear is a must for all couples

Once released from the HOSP I joined my first gym and became a fitness model / writer and meal planner at 32 while still running a business (just 7 months later) I learned to "Bio Hack" and used meal planning to reach many wellness goals.

I've cut out all the foods that are said to exacerbate RLS, caffeine, dairy, never was a drinker ect. I eat between 10 am and 6 pm (for ideal digestion) I exercise 6 days a week, but do not over do it. I drink a sh*t load of water (haa) and balance all meals carbs, protein, fats keeping blood sugar nice and level (except Sat when I love to eat chocolate or some treat - which yes 'can', makes RLS worse, sometimes Carb Loading makes it better for me) I never take Anti Histamines but good to note as a West Coaster with allergies Chlor-Tripolon works great at night and YES helps with RLS remarkably well BUT I prefer not to use these drugs unless needed since they are linked to Dementia (Great!) I avoid Gravol, Melatonin, Muscle relaxers expect Baclofen which I use for nerve pain from my accident..which at first was super helpful but not now. I supplement IRON and eat high iron diet ... what else ? hahahah

I'd love for you to list all the things that you've read have been proven to exacerbate RLS and I want to do some more "hacking" and see what I can figure out. Any natural remedies as well are appreciated.

Thanks so much in advance!

[nightdancer]

IF we listed EVERYTHING, would be endless posts and the info you want or need can be found on all the reputable RLS web sites. You will find lists of meds, foods and other things that exacerbate RLS for SOME people. I have zero food triggers. But, there are over 10,000 people here, and your head will swim if everyone made a list. MUCH easier to go through the posts and read, and check out the RLS-UK Foundation, which this is the forum for, Johns Hopkins has an RLS Quality Care Center and the doctors there are great. Lots of info there. But, if I listed everything that MIGHT or DOES exacerbate RLS, we would be here ALL day.

[Hidden in reply to nightdancer]

Excuse me. I was interested in hearing some help suggestions.

[nightdancer in reply to Hidden]

Just trying to make things easier for you, and I did give you some helpful suggestions. The web sites will get you started with the information you are alluding to. My point is your request to list EVERYTHING that exacerbates RLS, we would never stop typing. Usually, we suggest web sites that are reputable with accurate information to get people started. Different meds bother different people, same with foods, same with heat or cold, too little exercise, too much exercise, and so on and on.

[Hidden]

Hello👋 and welcome. Let me just say that you’re more disciplined than I am with diet. I would love to cut out the unhealthy things (and cokes especially) but the will-power for that just isn’t there. Congrats on reaching your wellness goals!

I go to a gym as well (averaging 3 days/week) and love it! I also don’t drive, so I walk everywhere. Would you welcome some advice on what I’ve learned in the realm of exercising in connection with my RLS?

[Hidden in reply to Hidden]

Hi Jess. Well, as a fitness model for well over a decade exercise is not only a daily activity for me but something I research, write about and share. Walking is something I do too as a woman who lives downtown Vancouver, we never drive anywhere.

[Hidden in reply to Hidden]

Is a fitness model a personal trainer?

[involuntarydancer]

Hi and welcome.

I find stress is the only sure-fire trigger. Wine is bad but spirits are ok. Ironically I find caffeine actually helps my legs and I sometimes take it in the middle of the night. Chinese takeaways (but cannot narrow it down more accurately to specific foods) are sometimes bad as is a lot of sugar. Obviously the counter indicated meds such as Benedryl and anti histamines and amitryptiline.

As to natural substances, have you tried magnesium? Many on here post good results with either a supplement or a spray for the legs. Vit D also gets a heads up from some.

The application of very cold water to the legs or walking in cold grass helps. Very hot baths. I sometimes get about 2 hours of relief if I do a series of yoga stretches when the legs are bad. I also find that about 20 minutes of a very diverting activity such as a computer game (reading or puzzles are insufficient) can give about 2 hours of relief.

Cannabis (don’t know if you count this as a ‘natural’ remedy) helps some and is certainly good for counteracting rls induced insomnia. Kratom (another borderline ‘natural’) is very effective against my rls. These substances aren’t as well regulated as prescription drugs and in the end prescription drugs are the most reliable against my rls.

Low dose naltrexone works for some - though not for me. Others I have seen recommended:

Rooiboos tea, apple cider vinegar, wheatgerm made into a drink, marmite, coffee, lots more that I can’t remember and didn’t work for me.

Diets: vegan, low oxalis, fodmap, gluten free, dairy free, Atkins, etc.

Relaxis pad and restiffic wraps (both very expensive), tens machine, support tights.

As nightdancer says, the list is very long. I hope you find something that works for you.

[Parminter]

Compression has not been mentioned yet, I think. Nor has the Relaxis Pad.

My DIY compression routine, when things are really bad, goes like this -

First, do a stretching routine, as tough as you can bear, for all the muscles and tendons from the feet to the sacroiliac joint. Take it slow, thirty seconds per stretch.

Second, roll up a pair of sports-socks (!), sit back on your feet in bed with the socks between your calf-muscles and the back of your thighs, then curl up over a big pillow on the top of your thighs. This will compress your calf muscles to the point of numbness, and stretch your thighs at the same time.

It sounds odd, but it has helped me through many disasters. If instead of rolled socks you use hot wheaty bags, you will get even more relief.

[Eryl]

You seem to be well disciplined and have noticed how the high carb 'treats' make the rls worse. Although you say you try to keep your diet balanced, maybe it leans slightly towards the carbs, wich I've found to be one cause of my rls.

Another trigger for me is E202 (potassium sorbate) food preservative. It's very hard to avoid if you eat processed foods or eat in restaurants where you may get pre prepared sauces containing it. That's why I rarely eat out or have takeaways.

[Hidden]

Hi there. First of all I feel for you what you have been through and are still going through. Welcome to this forum. Your question what exacerbates my RLS, here is the following list: grapes, raisins etc., apples, banana's, peaches and nectarines, wine, margerine and all the obvious things with too much sugar and of course artificial sweeteners. Lately, I have been much better, since taking a Turmeric supplement (400 mg from Nature's Garden), but I also take Magnesium and B12. I have a hot bath in the evening to relax me and then take 0.5 mg of Clonazepam and change my 3 mg Rotigotine Neupropatch. So far so good. I hold my breath, good luck!

[Pippins2]

It looks like the poster has left the group as her name is now "hidden "

[Madlegs1 in reply to Pippins2]

She was hidden from the original posting.

[Pippins2]

Hi Madlegs her named was Shesrestless but showing hidden now x