I'm 27 years old. Ive had restless leg syndrome since i was in the 8th grade (but back then i had no idea it was called that)...
Anyways, back then I used to get it maybe twice a year.... but with each passing day it just seems to get worse and worse. I'm now at a point where almost nightly it occurs. 😓
I was recently prescribed Requip(Ropinrole .5mg) for it and it worked! However, my legs seriously retained water/got really swollen. So my doctor stopped giving it to me. She tried prescribing me GabaPentin but that has no effect on it! In fact, I feel some days it's actually triggering it.
Is there anything else out there that will work that won't have the same side effects?
Has anyone tried compression on your leg at all?
Thanks for everyone's time and I'm sorry this was super long.
- Melissa
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Lissa8914
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Everything has side effects. No matter what, you'll be trading one problem for another - you'll just have to decide which problem is "easier" to deal with. For my 24/7 RLS, the only thing that works is Tramadol or OxyCodone. Good luck, I hope you find something manageable.
I'm about to just all my doctor to put me back on requip and ill take a water pill or something. I'd take swollen legs over restless legs any day! It's miserable!
Hi Melissa, do some reading on the forum. But one thing you definitely have to have checked is your blood ferritin level. For people with rls normal isn't enough, it should be above 75, or to be sure above 100. That is still within the normal range. So make sure you ask your doc for the exact level.
If you need to raise ferritin, it will take a while. We here recommend iron (ferrous) bisglycinate, aka gentle iron. Take it with vit C to enhance absorption and only once every other day, on an empty stomach, best in the evening.
Check out the Johns Hopkins site on rls for more background about rls and iron.
Also rls-uk.org and rlshelp.org have good and very useful info. I just hope you have a good and knowledgeable doc.
And welcome! Don't hesitate to ask - anything. There are no stupid questions and we are here to help.
Finally, yes ropinirol (a dopamine agonist or DA) may cause augmentation. Look up on the websites I gave to know how to recognise it. But doesn't have to. It is wise, however, to try to stick to the lowest effective dose and try not to go above 1mg a day. They also come in 0,25mg tablets.
Lisa- you are going to have to be forensic about this or your life will be a hell of medication madness.
First - look at your diet. Rls is often triggered by substances we ingest - food , drink or medications.
This often is the start of the story for many people- then they get medication- which leads to all sorts of complications( side effects, augmentation, withdrawal) - which in themselves, lead to even worse rls. A vicious cycle of restlessness.
So- I'm imploring you to look at the basics that may have started you off on this road.
Look at medications- hayfever meds , antihistamines, antidepressants, many meds have colourings- yellow and reds which can cause problems.
Fizzy drinks , sugars , sweeteners , msg , raising agents, high salt intake etc- you need to find the one that sets you off.
That's enough to be frightening you withfor the moment.
Oh- if you had an operation involving strong painkillers - they would set you off- ( from the withdrawals )
As you can see - rls is a very complex subject- and each individual may have their own " history ".
It will be up to you to research your own path and that will involve knowing more than your doctors in many cases.
I wish you all the best on your quest- and there is a power of help and goodwill, here, to further you on your journey.
If you go onto the rlshelp.org website and click on "RLS medical alert card" on the top, you will find medication info. in the left column. This alerts you to meds. you need to be careful with and offers safe alternatives. Vistiril is on the list of meds. to exercise caution on.
Mine began at the ripe old age of 63, out of nowhere. There were no changes in foods or medicines that created the sudden RLS. My doc at Hopkins said if you're going to get it, it would "usually" begin in your 40's. He was surprised that I began having it at my age.
Hi Lisa, welcome - as someone has said you will find all sorts of things on here and it comes down to being forensic and trying what you feel might work for you. I have a pair of magnet leg bands called Magnopulse - just google that - they work for me but not completely so I have been doing research and if you look at my recent thread you will see that I have found a supplement (shipped from Aus or USA) called migraine stop which happens to be effective for RLS - I've been on it for three weeks today and only twice have a had that early warning - and walking around for ten minutes has stopped it in its tracks. I'm also following someone's recommendation for Adrenal cocktail Orange Juice, with 1/4 tsp each of cream of tartar and pink himalayan salt. That is working for me right now - best 3 weeks I've had in years! Someone else will come along and it might not work for them. it's all trial and error but I am doing everything I can to avoid chemical medication. As a nurse i've read a lot about the whole trace mineral deficiencies thing and learned that taking them as a supplement isn't necessarily enough, unless they are taken up and used so for instance if you take magnesium, you need some B6 along with it in order for the body to take up the magnesium in the right way. If the science makes sense to me then I try it. Dietary intake usually beats pills hands down.
Twitcher: I applaud and admire you for taking the natural route!!! I plan to get on that track too, but unfortunately it won't be for awhile. I have so many meds. in my system (most to treat conditions unrelated to RLS) that I don't know what's what anymore. I am happy to report that I am on my way down (with plans to get rid of completely) on most of them!!
Melissa, I looked up Vistoril (hydroxyzine). It ia anti-allergic? Those meds may cause worsening of rls. It may take some delving to find outabout this one. I havea book that discusses several classes of meds irt rls. Shall look into it for you,but you may have to remind me. My memory still sucks after years of bad sleep.
I didn't find Vistaril/ hydroxyzine in my book (RLS/WED Long-term consequences and management by Manconi & Garcia-Borreguero (Eds) 2017).
But I did find it among the anti-nausea drugs in a fairly recent paper by Dr Buchfuhrer (ncbi.nlm.nih.gov/pmc/articl....
He writes: "Many anti-nausea drugs (trimethobenzamide, prochlorperazine, promethazine, HYDROXYZINE, meclizine, and metoclopramide) block the dopamine system and thus may worsen RLS (referring to a paper from 1999).
Note: I did the capitals.
And - as Jess already noticed - the same Dr writes that in one of his replies to a patient letter on his rlshelp.org website.
So, maybe get yourself loaded with info (and print the most relevant info) and talk to your doc again. Maybe the ropinirole with a 'water pill' works fine for you. Or another DA that doesn't give you swollen legs - but again: be mindful of potential augmentation.
As an aside, while looking for this info I found that also tramadol may cause augmentation! So I have to pay attention too.
I may be wrong but isn't Vistoril given as a medicine for someone under surgery and that you have no memory of it? Melissa, I didn't see anything in your post about taking that. Did I miss something?
My RLS is primary (genetic). I'be had it as long as I can remember. Originally, as a child and young adult it was very occasionally - long bus journeys, extreme tiredness etc. With age it has got worse until it is now every evening and night (unlike some people here, on the legs only and no pain).
I now attend a sleep clinic and, at the moment the Neupro patch and Tramadol are working for me. I've tried just about everything chemical or homeopathic, the TENS machine, the bar of soap etc. Some work for a while, some have unpleasant side effects, some don't work at all.
Everyone is different. Unfortunately, it'seems a matter of trial and error until you find what works for you. This forum is wonderful - full of kind, knowledgeable people.
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