Revelation!

[Tapir]

Background. From my previous posts you may know that I have had RLS since my 30's. Mild at first but becoming more serious with age and finally crippling at night. However, I found any dairy product to be a trigger and for a couple of years I was free of RLS, then it came back. I was prescribed Ropinirole which was wonderful but after a few months I augmented seriously to RLS 24/7. I changed to Pramipexole in the hope that this might be better. It was not. My daytime salvation was CBD oil under the tongue 2 x a day. This enabled me to be largely free of RLS in the daytime but it returned at night. I was able to reduce my Pramipexole dose from 2 tablets to 1 tablet.

Now for the news! In May I went on a cruise around Britain. The food on the ship was buffer style and my diet included lots of fruit. After several days it dawned on me that I had had no RLS. which lasted the whole voyage. I was able to compare my diet with my usual intake at home and the glaring difference was I had consumed no apples on the ship. At home my custom was to have an apple every day. I have given up apples and now remain free of RLS. I still take a Pramipexole at night but I have reduced it to about 0.6 of a tablet and intend to reduce it further if I can.

I think this shows, that for me, food has been the problem and it may well be the same for some of my fellow sufferers. It is just a matter of discovering what the trigger might be. Easy to say, difficult to achieve.

[LotteM]

Well done! The saying ‘An apple a day keeps the doctor away’ which I learned in my textbook at school in the 70s ( I am Dutch) clearly doesn’t apply to you. I hope it lasts.

Currently, as this is the time of the year in between the remainder of the apple harvest from last year and this year’s harvest, I din’t eat apples either. Unfortunately, my RLS is still there. But I hope at least some others will recognize this revelation. Thanks for sharing.

[Madlegs1]

That's fantastic news.

So satisfying to find a trigger-- and hopefully that is the main one.

Will you challenge yourself with any forsaken goodies now?😉

All the best.

[Eryl]

Congratulations. It often takes a forced change of diet to highlight the culprit and it's often not easy to identify the exact one if it's an ingredient of a particular processed food or dish. I identified bread at first, but avoiding it had inconsistent results until I realised that it wasn't the bread but the (supposedly healthy) margarine I was putting on it, or namely the artificial preservative which is used in most margarines, E202. I have since found another ubiquitous food to be a trigger - sugar! I've found that taking kelp and omega3 supplements help to strengthen the myelin on the nerves, and give them some resilience so that now I can tolerate small doses of my trigger foods occasionally.

[Sampsie]

That's great news. I really hope it works long term.

Were you more active on the cruise? Sometimes I notice if I am using my legs more I can have a better night.

All the best.

[Tapir in reply to Sampsie]

No, probably about the same as normal.

[Hedgie22]

I have become more and more convinced since I started to try to crack RLS that diet is the key to it - I have to avoid sugar and other sweet foods, also chocolate and alcohol in the evening

[Tapir in reply to Hedgie22]

I agree. I am super sensitive to dairy products. Now apples and I suspect peanuts and cashews. An RLS attack is such a horrible experience that I cannot bring myself to experiment with suspect foods.

It seems that once we become sensitized to one food, we then become sensitized to others.

[Goldy700]

I do wonder if it might be the pesticide on the apples that could be causing the problem. Apples are one of the "dirty dozen" most highly sprayed fruits. Have you tried organic apples to see if you get the same effect - just curious.

[Tapir in reply to Goldy700]

An interesting point but I am not prepared to experiment and end up with even one extra RLS attack. Too horrible.

[Tapir]

The cruise started on May 19th and I have been virtually free from RLS in the daytime up to the present. So not a placebo effect.

The cruise was on the Marco Polo, conditions & service on the ship were excellent. The ship left Portsmouth with planned visits to Newcastle (Alnwick Castle), Scrabster (Castle of Mey), Orkney, Shetland, Oban (Inveraray Castle/gardens), Isle of Man, Belfast (Giant's Causeway), Dublin and the Scilly Isles. Unfortunately, poor weather conditions made landing by tender impossible at Scrabster and Oban. A fellow passenger, who appeared to live on the ship, told me that she had done the trip four times and had never landed at either of the two Scottish ports mentioned. The ship is old and has a deep hull which precludes it from docking at several ports on the cruise. Highlights were Alnwick Castle & gardens, Orkney, Isle of Man, Giant's Causeway and Tresco in the Scilly Isles. After failing to land at Oban we were diverted to Greenock and visited Glasgow instead. Good visit.

[CoMtWo]

How lovely for you.

I found Pramipexole waaaay too augmenting for me after about 10 years on that med along with gabapentin. I gradually tapered off the pram this past spring while increasing the gab. After 4-5 weeks I was through with the pram, waited another week just on gab (still kicking at night of course), and then went on Horizant, which is gabapentin enacarbil - a long acting differently absorbed version of gabapentin. When on straight gabapentin I found I had to take 100 mg capsule a few times during the day, especially in the afternoon and early evening, then 2-4 capsules at bedtime. Now on Horizant (very happily at this stage), I'm just on one dose of that lovely new drug, taken daily with food around 5:00 pm. Sometimes I wiggle at night according to my husband, but my doc says that is because I also have periodic limb movement disorder, which, while it does't wake me up, may wake him up, and which also doesn't respond to Horizant. Also, sometimes in late afternoon or early evening, I begin to feel the "wiggle need" but talk to myself and say "no way" and somehow that works - which it sure didn't when I was on the pram/gab mix. When I forget my dinnertime dose of Horizant (getting better at that if I give myself a 2 hour window in which to take it), I take 400-500 mg of plain gabapentin, which gets me through the night. However, I wait until a late bedtime to do that since otherwise, the previous day's Horizant is still in my system. It stays there for 30 hours supposedly.

[Tapir]

The trip was booked through Newmarket Holidays so details from there.

I have replaced my daily apple with a pear, nectarine or a Flat Peach. Depends on what is available through the winter.

[jrtemp]

Have you tried cbd oil? It works for me and my rls was the very worse I’m thinking mine was the worse than anyone’s

[Tapir in reply to jrtemp]

I mentioned CBD oil in my original post. It certainly helped me through the day by preventing RLS attacks. However, once an attack started it did not help.