Two weeks of relief: I have had two... - Restless Legs Syn...

Restless Legs Syndrome

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Two weeks of relief

Lockylocky profile image
28 Replies

I have had two weeks of *total* remission. So of course, I am trying to figure out why. I think it is possible that it has to do with adding soy to my diet. I am not sure that this is the answer, and it’s only been two weeks, but I am sharing this in case it resonates with anyone else or helps provide a clue to anyone about their own RLS puzzle, since there doesn’t seem to be one cause or solution that works universally.

By way of background…

I am 45, female, live in the US. This is my second serious bout with RLS. It’s been several months of unbearable discomfort but no pain, worse at night but sometimes during the day. I’ve also had very bad insomnia despite a calm mind, even when my legs weren’t actively bothering me. I’m usually a great sleeper so this has been unusual for me. I have never taken prescription medication for RLS like DAs or gabapentin. I take oral magnesium every day and have done so for years.

Short-term things that have helped during this time have been sleeping on a futon (no movement when my spouse moved); walking on a treadmill for a half hour when I couldn’t sleep; tiring my legs through leg lifts; cold water, especially immersion; hot epsom baths; vibration plate on my calves; lidocaine cream; caffeine; nightly gentle iron; and intensive stretching — not so much of my legs, but of my back, especially backward stretches. All of these things helped sometimes but did not work always or totally. And even when they helped my legs, they didn’t always help the insomnia.

Things that did not help me (that I was aware of, at least) were reducing oxalates, reducing histamine foods, and cutting out sugar (although that helped other things).

So it’s been two weeks now of feeling good. The timing is somewhat weird in that I have not been eating very well at all. Lots of sugar, frozen pizza, etc. How can it be that I am finally feeling good?

I have a history of low iron and ferritin and have been taking gentle iron for months. So maybe it’s just finally “built up.”

But the timing of this remission also coincides with me switching my 2-3 cups a day of high quality organic cow’s milk to organic soy milk. I’ve cut out dairy in the past by replacing it with oat or almond milk, and it did not seem to help. And I am still eating cow dairy now (cheese and ice cream). So I am considering that the soy may be helping. One hypothesis is that my RLS might be caused by changing hormones because of my age and sex, and soy can affect estrogen (oestrogen). Dairy can affect hormones, too, so reducing it may still be part of the equation.

We are all different. I don’t know that the soy is what is helping, and even if it is, I would not be surprised if soy made RLS worse for some people. I’m not claiming to have “the” answer. But it’s possible that this might be part of the puzzle, at least for some people, especially women around my age. Or maybe tonight it comes back and I regret this post. Time will tell, but in the meantime, I hope this helps someone. This condition absolutely sucks and I am hoping everyone on here finds lasting relief.

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Lockylocky profile image
Lockylocky
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28 Replies
ChrisColumbus profile image
ChrisColumbus

You've tried many things! I've noticed more people stating that soy is a problem rather than a solution, but the same is said of other things e.g. caffeine: "we're all different".

Perhaps your reduction of lactose intake may be helping, although as you say you haven't cut it out entirely....

Whatever, it's great to hear that you're currently symptom free!

Lockylocky profile image
Lockylocky in reply toChrisColumbus

Makes sense - soy can apparently have opposite effects on the endocrine system depending on a person’s gender and age. (hsph.harvard.edu/nutritions...

Madlegs1 profile image
Madlegs1

Great honest and clear report. Thank you.

Hopefully, you will maintain you good progress.

Good luck.

BoldMove profile image
BoldMove

From time to time there is a spontaneous remission, reason unknown. It could last weeks, months or even years. I hear about them from time to time. I hope yours last for many years to come.

Lockylocky profile image
Lockylocky in reply toBoldMove

Yes, after my first multi-momth bout, I had about a year and a half of zero symptoms. So I know this might not last - just trying to figure out if there might be any cause, because “spontaneous” is something I can’t replicate!

TheDoDahMan profile image
TheDoDahMan

Thanks for sharing, Locky! Perhaps you'll be the first person (that I've ever heard of) to be "cured" of this dread condition. Then you can change your handle to Lucky! Hope so!

Lockylocky profile image
Lockylocky in reply toTheDoDahMan

haha, I would not say I am cured! Only that I’ve been symptom-free for a couple of weeks. I “had” rls for a few months a couple years ago, then no issue for about a year and a half, then several months of it being a problem again.

1056marlene profile image
1056marlene

That's fantastic news. Relief from the torture our bodies dole out nightly.I have stopped Pregabalin as it stopped giving relief and don't wish to get caught up with other drugs and their side effects.

Currently trying CBD oil.

Does anyone else have Functional Neurological Disorder? (FND). I feel it's connected to this in my case.

I hope you remain free of this awful disorder and can enjoy life to the full once more. X

SueJohnson profile image
SueJohnson in reply to1056marlene

How much pregabalin were you on?

1056marlene profile image
1056marlene in reply toSueJohnson

Hi Sue just 150mg at night. Withdrawal been awful though.

Wonko_TheSane profile image
Wonko_TheSane in reply to1056marlene

Would you mind sharing what exactly your withdrawal symptoms were? I am about to start with gabapentin and I would like to know beforehand what I’m getting myself into should I have to stop it . I am assuming that it will stop working at some point, like all other medications have so far..

1056marlene profile image
1056marlene in reply toWonko_TheSane

Hi it's sleeping for no more than 30 minutes at a time. Restless everywhere. I had severe digestion issues at first nausea etc and lost a lot of weight. Anxiety attacks.

GP did a lot of tests and all normal, so can only deduce it is relative to the withdrawal of Pregabalin as started at same time.

Good luck with Gabapentin. I'm sure it will help for a while.

Fingerandus profile image
Fingerandus in reply to1056marlene

hi me too i cannot manage without lyrica i am down to 75 mg a day now anxiety a feeling of doom i guess its anxiety but a feeling of wanting to run away as soon as i take one im fine start on 25 mg next i still cant get off pramipexole tho x

SueJohnson profile image
SueJohnson in reply to1056marlene

You need to reduce very slowly to avoid withdrawal effects. If you do it slowly enough you won't have any. However 150 mg is still a low dose so it is no wonder it stopped working. I would suggest you increase it. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg pregabalin daily." Also, have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If you haven't when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you advice.

1056marlene profile image
1056marlene in reply toSueJohnson

Thanks for your reply. I will try to stick without as will have issues down the line with not working at whatever the dose.

1056marlene profile image
1056marlene in reply to1056marlene

My GP suggested fortnightly dropping of 50 mg.

SueJohnson profile image
SueJohnson in reply to1056marlene

That's too much too fast as you found out by having the withdrawal effects. I suggest you go back up to the last higher dose you were on and when the symptoms settle, reduce more slowly by 25 mg from there.

1056marlene profile image
1056marlene in reply toSueJohnson

Thanks Sue x

SueJohnson profile image
SueJohnson in reply to1056marlene

What makes you think it won't work whatever the dose. You said it worked before.

1056marlene profile image
1056marlene in reply toSueJohnson

It does work. At first it worked well. After around 2 years it didn't work as well and then not at all. I don't want to increase dose as felt dead inside and brain fog and memory issues.

SueJohnson profile image
SueJohnson in reply to1056marlene

OK - That makes sense.

SueJohnson profile image
SueJohnson in reply to1056marlene

You might want to try switching to gabapentin. Although they are basically the same drug except you need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. There are a number of people on this forum who have found this to be true. Multiply the pregabalin amount by 6 to get the correct dose. Since you will need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you find need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium don't take it within 3 hours of the gabapentin as it reduces the absorption of the gabapentin. Depending on where you are in your reduction you can switch without weaning off pregabalin. If you find you don't have the side effects that bother you, add 100 mg every couple of days.

1056marlene profile image
1056marlene in reply toSueJohnson

Thank you Sue x

Moonwalker1967 profile image
Moonwalker1967

Thanks for sharing. I would love to try this but I'm on L-Thyroxine hormone replacement therapy, as my thyroid gland has been removed and not supposed to be on soy replacement:(

Lockylocky profile image
Lockylocky in reply toMoonwalker1967

As others have pointed out, it might be the reduction in dairy that’s helping.

Bluebboat profile image
Bluebboat

I think it might be dairy that is your problem. I have been slightly surprised to find that my rls is better when I’m strict about no lactose especially milk. Clearly regular iron, magnesium and an anti inflammatory diet are central to general suppression of symptoms but I didn’t think that dairy mattered much, but now I do.

Lockylocky profile image
Lockylocky in reply toBluebboat

Yes, I agree it could be the major reduction in dairy/lactose.

Lockylocky profile image
Lockylocky

update: Cursed myself by posting. Had some issues last night. Stupid rls!

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