RLS in my feet.

[Icansawmyfeetoff]

Hi, I've had rls in my feet since I was younger then 9, 9 is my earliest memory of an epi8and it wasn't my first. Anyway, I've been at points when it was so severe I really wanted to saw off my feet. I'm now 55 and for many years I was on a antianxiety med which kept it pretty much non-existent. I have been off those meds for almost two years now and suffer every single night! My doctor put me on a low dopamine med. Which helped at first but doesn't anymore. Has anybody experienced worsening condition due to menopause? I'm ready to get the saw!!

[Joolsg]

I’ve experienced worsening on a dopamine med. What med? Requip( Ropinirole) or Mirapex ( pramipexole)? And what dose?

Has it stopped working suddenly or have things been getting worse for a while?

Read the pinned post (top right) on Augmentation. Sometimes dopamine agonists stop working and you can switch to another BUT if you’re suffering Augmentation the only solution is to get off the drugs and switch to alpha2delta ligands ( pregabalin, Gabapentin or Horizant) or low dose opioids.

[Icansawmyfeetoff in reply to Joolsg]

Pramipaxel 0.125 , I just recently started seeing that low iron could be a reason, although my iron isn't low now I was anemic when I was little and was hospitalized for it.

[Joolsg in reply to Icansawmyfeetoff]

As InvoluntaryDancer has suggested, check your serum ferritin levels & ensure they are above 100. Raising the levels can also alleviate possible Augmentation.

If you were anaemic when young, you could well have low iron levels in your brain.

Ask for another blood test and ask for the actual numbers for serum ferritin.

[Icansawmyfeetoff in reply to Joolsg]

I will thanks

[Icansawmyfeetoff in reply to Icansawmyfeetoff]

Sorry got interrupted, it pretty much has stopped working... I make sure I don't take any otc medications or eat things with dyes after 3pm. As I will be in for it if I do. Idk... it used to be once I fell asleep it would not wake me up . Now, it wakes me up 3, 4, 5 times a night and is happening during the day.

[involuntarydancer]

Like Joolsg - and many others, I experienced worsened symptoms due to being on a dopamine medicine (after initial positive effects) and that would be what I’d be looking at in your shoes. I haven’t heard of menopause causing worsened rls. Important not to despair or succumb to the temptations of the saw. There are many things that can be done to improve life with rls. Have you had your serum ferritin checked? Raising iron levels helps at least 50% of sufferers. It made a dramatic impact on my symptoms. Also check the lists of counter-indicated substances to ensure you’re not taking anything that is inadvertently making things worse.

[Jrskyhook32 in reply to involuntarydancer]

Hi everyone. When you say serum ferritin levels. My doc says they are in the normal range. Even at that point can they be made better ? Is it something that the higher the number the better?

[Hidden in reply to Jrskyhook32]

They recommend for RLSers our ferritin level be100+ Doctors will usually always say in the normal range, Ask what your ferritin level number is. And i am going to add, raising your ferritin level does not work for everyone, but worth trying,

[Icansawmyfeetoff in reply to Hidden]

Is this something that is in normal blood work?

[Hidden in reply to Icansawmyfeetoff]

The ferritin level is a separate test from the normal blood work. You would have to ask your doctor for a Ferritin level test. Most doctors will not know that our ferritin level can have a impact on our RLS.

[DicCarlson in reply to Jrskyhook32]

My RLS was severe with a Ferritin level of 49 - really severe! Docs said normal, but I found the Johns Hopkins Neurology website and saw this one line "A study has shown that in patients whose serum ferritin was < 75 µg/l, oral iron therapy (325 mg ferrous sulfate twice a day on an empty stomach) on average improved RLS symptom after 3 months." I used ferrous bisglycinate chelate daily for 3 months, RLS severe symptoms went away - chronic insomnia remains. hopkinsmedicine.org/neurolo...

[Oscarsaurus]

genneve.com/menopause-sleep.... I have added this for you as no one has replied to your question about rls worsening during menopause. I hope it help you

[Icansawmyfeetoff in reply to Oscarsaurus]

Thank you so much. I really believe menopause is definitely heightening it.

[Oscarsaurus in reply to Icansawmyfeetoff]

I agree i am going through the menopause and recently started HRT so fingers crossed

[Pippins2]

I get it in my feet -well foot its only ever my left one .Of all the places i get RLS my foot is the worst place it drives me nuts .I never had symptoms in my foot until i started my Pramipexole withdrawal several years ago .It came on as i tapered and i expected it to go after a few months but no , its almost like once a new pathway has been established it stays with you .Luckiky i dont get it in my foot too often but it is my most complained about location lol x

[Icansawmyfeetoff in reply to Pippins2]

It's terrible, I do think the Pamoxial is probably making it worse. I just started it last Sept and it has gotten worse. Isk I just need it to stop. My right door is always worse than my left although both can be equally as bad at times. Thanks for replying

[solticeart]

I get it in my feet too and if I don't take something withing 30 min it goes into my right leg. its mostly my r foot only but last night was weird and it was in my left foot for the first time. It drives me nuts. I take kratom for it because none of the meds work for me but I'm in the US and it's legal here. It works great and stops it but at night sometimes I still wake up and have to take more and wait for it to kick in like last night. Yes, I get it during the day at times too. mine started a week after I went off methadone which is also something they give that stops it but doctors are getting weird here about pain meds and I got cut off after 18 years. Its either from being on methadone or I had it before and didn't know it. I do remember having it when I was in my 30's a few nights here and there but id walk a half hour and it would go away so I could sleep. now forget it. it's bad. I have also gotten pain in my leg with it too, like a bad aching at times and a weird feeling like my legs are filling up and are full. I don't know what of but its an awful feeling along with the having to move them.

[Icansawmyfeetoff in reply to solticeart]

I'm so sorry, it's terrible. Last night I barely slept myself. Up every 45 min or so. Then a while to get back to sleep. What is Kratom? I'm in the US, CT area. But never heard of it. I've heard a low dose of opioid helps and when my doc gives me the good cough medicine once a year when I get bronchitis it goes away, but comes back with a vengeance once the med is gone. I'm a little scared to ask him for the low dose as addiction is in my family big time and I've been the lucky one not to

subcome to that. But very well know that it would be easy to. I'm 55 years old and at least 43,44 years I've suffered. You'd think they would know more now. I don't think it's on anyone's list for big studies as much as other things. Thanks for replying. Wishing you well

[solticeart in reply to Icansawmyfeetoff]

Hi, Kratom is a tree that is a cousin of the coffee plant and grows in the south asian countries. They have been using it for hundreds of years for pain and energy. There are different strain, red vein leaves, white vein leaves and green vein. red is more for pain, white energy, and depression and green the same with some pain killing too. it actually works better than morphine for pain! you can't od on it, worse you get is you puke if you take too much. it is illegal in some states so do a search for the American Kratom assoc to find out more and got to reddit and type in kratom and read the boards there. there is a ton of info in the threads and a help list of pages on the right of the page. Its made into a powder you can make a tea and drink ( yuk) or I put it in capsules and take them. it lasts 4 hours, you take on an empty stomach. you can get addicted to it if you take a lot but you would have to take it pretty much all day. Most people use it a few times a day or night then take a break a day or two a week and you will be fine. even if you were to get addicted to it it's not bad like a pain med coming off it. its 2 days of feeling crappy. I take it for fibro pain and energy so I can get things done and man does it work well! I'm doing things I haven't done since I was 30! ( I'm 59) Its the best thing that has happened to me, to be honest, I feel great for the 1st time in 30 years. Anyways. you buy it online at places like Kratomspot and Kratom crazy which have good prices. I'd start with red Borneo for sleep. and if you need energy get white Borneo and mix it with red for the daytime. some people dont like the white alone and get a jittery feeling? I never have but I need pain relief in the day too so I take half and half. most people start with 2 teaspoons at a time. but I'd start with one. if you feel nothing or the legs won't stop take 2 more. some people need more. if it upsets your stomach eat some yogurt first. Take it 3 hours after eating or you can eat an hour after taking it. There's so much more info on the reddit pages. btu if you want ot know anything just message me on here and I will answer what I can. Start by buying 4 oz bag and I got a capsule machine on Amazon for 20 bucks and I buy bags of 00 sized capsules . 4 tea is about 8 caps. but you can weigh it out so your sure.. good luck! let me know who it goes. Oh, it works because it attaches to your opiate receptors although it's not an opiate! it does other things too, anti-inflammatory, stops depression and anxiety( white and green leaf) you can also find more info on the websites you get it at but read more about it. ignore the bad stuff you might see its all lies. pharma companies have made a synthetic form and want it illegal so they can sell it for $. so it illegal in some states but the kratom assoc has lawyers and lobbyists working on that. some states have reversed that already! I'm in WA state so its legal here along with pot which I can't do, hate the feeling and makes my pain worse. I do use cbd oils though creams and stuff and they do wonderful things but don't stop my rls the kratom does though! the caps take an hour to work so don't forget that. if you do a tea its take 15 to 30 min.

[involuntarydancer in reply to solticeart]

I find kratom very helpful also and get a bit fed up when people post alarmist reports about it. I notice that any of the people posting adverse accounts on reddit are on a huge dose (way, way higher than anyone taking it for rls would need). I have discontinued kratom on a number of occasions and would agree that it is much easier to stop than oxycontin (which I also used for a while for my rls and found very unpleasant and difficult to discontinue). Kratom works better than oxycontin for my rls, has fewer side effects and is easier to discontinue. It seems like a no-brainer. I just wish it was legal and consequently regulated here. There is inevitably a risk in taking unregulated substances but for me it passes the risk benefit analysis with flying colours.