Salicylate Intolerance Causing My (or Your!) RLS?

[Chancery]

Hi, here’s the (rather long!) story of how I stumbled over a possible cause of my RLS in case it helps anyone.

I had a horrible summer caused by a back injury, cystitis and allergic reactions all culminating together. It's no fun when you are bursting to pee while you can hardly move and the lower half of your legs are swollen up like balloons and have a raging purple rash burning and itching 24/7 right up your calves. The allergic reaction was caused by Voltarol gel - something I had been absolutely ASSURED by a doctor wouldn't give me problems after I told her I was sensitive to NSAIDS. I used it twice and - disaster! BIG time allergic reaction (you have to wonder at doctors’ training sometimes). On top of this I was given steroids for the rash and THEY caused Rosacea, which has never gone away. So like I say, a very bad summer.

Now during this time I realised I had unintentionally consumed very high salicylates. These occur naturally in fruit and are high in medicines like aspirin & ibuprofen (not actually a salicylate but related, as in its a NSAID with similar properties and similar side effects) . As I say I have a sensitivity to these and only discovered after the event that cranberries are high in salicylates. I had been taking cranberry tablets - much higher salicylates than just the fruit - and I had been taking them several times a day, plus drinking cranberry juice. And this had been going on for weeks because the cystitis wouldn't clear up. So unwittingly I had consumed a huge amount of salicylates.

Now because of this highly-allergic summer I had very high levels of inflammation in my body and some months later, in desperation, I was trying to find a reason for this continuing high reactivity when I stumbled over Mast Cell Activation Syndrome. Now this fit me every well, with a few exceptions, and I saw the doctor, made appointments for a consultant, yada, yada, yada....

Not long after THAT, I decided to take up fasting to help lower inflammation, which worked. When my consultant appointment rolled up finally this week I found I didn't want to go. I had done more research into MCAS and felt that it seemed too extreme for me. Most sufferers have MANY allergies. Mine's seemed quite tame by comparison. I cancelled the appointment, all the time worried I was making a mistake, only to have issues flair up again. I felt like an idiot - I'd removed myself form the waiting list only to have the Rosacea and the GERD, both known symptoms, come raging back.

While trying to think what to do next I was looking into things and saw salicylate intolerance come up again. Now the GERD had been triggered by Ibuprofen (one dose taken as an 'experiment' - boy was that a mistake) and I had also used Pepto-Bismol (it has salicylate warnings on the bottle) and suddenly the Rosacea was back. I thought this couldn't be coincidental. When I first get the allergies I'm taking in high salicylates. When they come back I've just used salicylates. What’s more, I had been getting warnings from my body about fruit (also high in salicylates – and particularly too-soon picked unripe supermarket fruit). I kept not wanting to eat it. And at the end of every night I found myself thinking ‘I think I’ll stop buying fruit for a while’. I also found the only thing I did want to eat was pears (turns out they are low in salicylates) and I also found that the (fresh) cranberries I ‘d bought and cooked for myself tasted horrible and I previously loved them. I couldn’t understand it, but I was being pointed in the right direction by my body signals but didn’t spot it because I was too focussed on MCAS.

Anyway, tonight I looked up salicylate intolerance and – lo and behold! – it fits my problems perfectly. What’s more, it lists RLS as one of the symptoms and there are stories there from RLS sufferers talking about how low salicylate diets have improved their symptoms.

I intend to try a salicylate elimination diet and see how it works. Even more oddly, incidentally, I hadn’t had any bother with RLS for a few weeks then it started again. I put it down to sugar-free sweets I’d had with Sucralose, which I’ve suspected before. But I realise now me eating the sweets coincided with the cranberries and the Pepto-Bismol so could quite easily be a salicylate problem and nothing to do with the Sucralose.

Anyway, I’d love to hear if any of you have heard of salicylates being a problem with RLS, or suffer from a salicylate intolerance yourself. I will let you know if a low salicylate diet improves matters, especially my RLS, or if it is back to the drawing board for me!

[lb003]

Hi Chancery, on the RLS, my cause was Amytripiline. It instantly went when I stopped taking it. The RLS started at 30mg. I haven't looked into Salicylate but I'm now going to, thanks for the advice. Lisa

[Chancery in reply to lb003]

Hi Lisa. I think intolerances probably have more to do with RLS than people realise. the problem is trying to identify them. We consume, use, eat and inhale so many different things in a day - many of them very synthetic - that it's a wonder any of us are still standing! I used Amitriptyline for a few months but I can't recall now if it made my RLS worse, but I could believe it. Let me know if you find out anything interesting vis a vis salicylates, or if you decide to try lowering them in your diet let me know how you get on.

[lb003 in reply to Chancery]

Yes I will do Chancery. Good luck and I hope your health keeps improving.

[Madlegs1]

Any relation to oxalate foods?

They definitely are a trigger for some people.

[Chancery in reply to Madlegs1]

No, no relation to Oxalates, Madlegs, but yes, there's an endless array of food intolerances! I think that's what makes it so hard to pinpoint a problem food.

[Eryl]

Glad you found it. My triggers are sugar and potassium sorbate. Other causes could be glutamate sensitivity or amine sensitivity. If people can't pinpoint a cause as you have, I would sugest trying an elimination diet, like the RPAH diet. And ketogenic diet simultaneously. Many people could be helped more if they recognised that taking things out of the diet can be more effective than adding things in.

[Chancery in reply to Eryl]

Yes, Eryl, elimination diets are invaluable if you do them thoroughly. Sometimes the results can be really surprising; things you thought you were sensitive too turn out not to be a real problem and things you were not aware of have actually been a major pain for you - sometimes literally!

[Eryl in reply to Chancery]

Exactly, token efforts are a waste of time. People need to stick to the diet rigorously, at least at the start, then they can reintroduce things in a controlled manner, to test which were the culprits, and to test their level of tloerance.

[KellyDBrille in reply to Eryl]

Actually, salicylates are detoxified mainly by glycine, but also glucuronidation and sulfation. One doesn't need to avoid sals/phenols for life.

p.s. also sodium bicarbonate detoxes salicylates.

[RLSgirl]

Please do keep us posted!

[Chancery in reply to RLSgirl]

Will do!

[Chancery]

Hi Bodzui, you may still have triggers though, even with a genetic predisposition. I don't think (emphasis on the think!) RLS is a congenital condition so chances are you had something in your environment that triggered the gene expression. That could be a food. One of the problems with food is you could have been eating the problem food for 'as long as you can remember' too! Sometimes it's worth a shot. For example, I've been sensitive to aspirin (a salicylate) for as long as I can remember. I couldn't take them as a child because they made my stomach bleed. It's taken till I was 61 to discover there might be a problem with them in food too so never say never!

[Hidden]

Interesting! Thanks for the info! I have yet to find a food trigger for me, but have had some suspicion about products containing gluten for awhile now. Therefore, I’m thinking of going on a gluten-free diet to see if there’s improvement.

[Chancery in reply to Hidden]

Yes, Jess, Gluten is proving to be a villain for a lot of people, and now they have discovered NCGS (Non-Coeliac-Gluten-Sensitivity) a lot of people have an explanation for why their guts behave as if they have coeliac but they test negative. Of course, you have to watch you don't just jump on a fashionable bandwagon and miss out on a major food (and cost yourself a lot of money!) for no reason, but it is definitely worth checking out gluten.