RLS

[moysie]

Iv'e just found this site and hope it can help me. Iv'e suffered with RLS for many years but the last few months have been a nightmare. The last couple of weeks Iv'e had little or no sleep at all and have been in tears pleading for the jumping to stop. Iv'e even videoed myself to show my doctor how bad it is. Iv'e taken Pramipexole and am now trying Gabapentin Brown & Burk 100mg. My GP is sending me to a neurologist for a second opinion and also stopping some of my other medication to see if that helps

[Hidden]

I have found all these heavy medications the doctors prescribe in the end make it worse and affect your central nervous system.what you need is to see a Herbalist and get on natural medication to give your liver a good detox. I am pleased with the result and am also having Acupunture from same qualified Doctor in Totnes Devon.

[beady3 in reply to Hidden]

Devon lady I think you are talking a load of rubbish,if you can find the right meds of the doc you will find help ,don't go down that herb road it will cost you a lot of money and I bet you nothing will work, I don't know anyone that has acupuncture that it works so pleased it's working for you though Devon lady,with desperation we try things but if what you are on isn't working go back to the docs ,I am on the Neupro patch with Tramodol and it's going good ,all the best to you don't expect a miracle of the neurologist ,read up on this forum you will find it very helpful

[Mariahbelle in reply to Hidden]

I agree with you Devon Lady. Ultimately we have to think holistically and consider the effect of these medications long term.

[Hidden in reply to Mariahbelle]

Thank you for agreeing with me. If everyone realised the damage these ghastly dugs do to us, and in time make our RLS worse they would not take them. I have over the years taken and tried every single drug ever mentioned on this site and ended up going loopy, yes really it so affected my central nervous system I didn't know who I was..also filled my body with toxins ..I am so much better now..still taking the herbal potions and healthy living foods. It's only when we come to the end of our tether we go for an alternative and think..why on earth haven't I done this before ..

[Mariahbelle in reply to Hidden]

I take quite a lot of medications and like you am not keen to mess around with my CNS. Though sometimes, like so many here, I've been really distressed by my symptoms.

Here's wishing us all good health!

[Hidden in reply to Hidden]

Devon-Lady i am glad you seem to have found what is working for you right now. BUT, some of us NEED to take the medications because we have no other options. I have tried all sorts over the years, even the soap under the sheet in desperation. Including acupuncture. The dopamine meds are the ones which make RLS worse over time and taking a high dose of them, its called augmentation. There are many illness out there that people HAVE to take meds to survive. People who are diabetic, i am sure would rather not have to take their insulin daily, but know they HAVE to,.

[ARKSOTO in reply to Hidden]

Devon-Lady - I'm glad that you are better - anytime any RLS sufferer finds relief is a Blessed moment. Were your RLS symptoms mild, moderate or severe when you first started taking Rx meds? Did the Rx meds completely stop the symptoms? How long did you take the Rx meds? What happened that caused you to stop? Do the herbal potions and healthy living foods completely stop the symptoms now? How long have you been on this treatment plan? Were you tested for food allergies (or self test by eliminating one food at a time, etc). What specific herbal potions are you now taking? The more we know about what works and why, and what doesn't work, and why, the more help we can help each other. RLS is one of of life's mysterious vexations; it effects each person differently, and each person finds relief differently. I've never heard from any sufferer who has been able to find permanent relief with one specific treatment regimen. It is an evolving process. I didn't find any relief with acupuncture or acupressure, even though I gave each one a try, with regular treatments over a period of weeks or months. If either one helps you, or anyone else, then it's worth mentioning. I don't feel it's appropriate or even kind to dismiss one's success as rubbish, especially with this disease - it truly is a mystery disease that defies a singular approach.

[Hidden in reply to ARKSOTO]

Can I phone you ??

[nightdancer in reply to Hidden]

Why do you want to phone people? You can send private messages to people on here, if you do not want to talk on group. But, it also makes think you are trying to sell a product or products. Why can't you just list what you are doing, as it MIGHT help some people?

[Hidden in reply to nightdancer]

I am sorry I have upset folk by saying I wanted to hone, I am not selling I promise.

This is what I am taking daily ..in tablet form or powers mixed with my food.

Milk Thistle tablets 2 twice daily

Alka Cler 5 tabs on rising

Co enzine Q10 300 mg one a day

Vit D3 5000 1 u 2 tabs once a day

Volic acid 400 mcg 2 tabs once a day

N A C (N Acelye Cysteine) I tiny powder scoop) twice a day in food

Magnesium citrate I larger scoop twice a day in food

Chinese herbs 123 and 42 6 of the tiny balls twice a day

Also Epson salts baths 3 times a week

Drink green Tea with fresh mint

I also have my normal blood pressure tablet from my GP.

All the other medication I buy on line and I don't sell!

I hope this satisfies those who think I was doing the wrong thing but having suffered RLS for years and have taken all the usual medication mentioned on this site which gave me awful site effects I am at last comfortable with these herbal remedies ..

I hope this can help folk like me who came to the end of their tether..

[Hidden in reply to Hidden]

Glad you have found what works for you Devon Lady. Maybe some members will find it works for them too.

[Hidden in reply to Hidden]

I hope you find something too...

[Hidden in reply to Hidden]

Bless you

[ARKSOTO in reply to Hidden]

not comfortable with that, sorry

[Hidden in reply to ARKSOTO]

Please read what I have just written to Nightdancer

[Hidden in reply to ARKSOTO]

Why not?

[DisneS in reply to Hidden]

Hi Devon-lady I would really like to find some non-drug treatment. I have been hoping to try the relaxis pad or the foot wrap or anything else which doesn't involve drugs with their side effects but it's really irritating that all these treatments are only available in the US and we in the UK are only offered drugs!

[Hidden in reply to DisneS]

How can I phone you for a chat??

[nightdancer in reply to Hidden]

Again, are you selling something? Because it sure looks that way, when you will not discuss on group specifically what works for you. Just does not look right, in my experience.

[Hidden in reply to Hidden]

I am not selling anything! It's so complicated I rather chat but when I have time I will write am the herbs I am taking.. All bought on line..

[nightdancer in reply to DisneS]

The Relaxis pad is very expensive, but if you contact the company, it WILL be available in the UK. In the US we have to have prescription, but insurance will not cover it. When it is available in the UK, in the fall sometime, it will be there for you to order and try it. i do not know many people who have found it that helpful, but SOME have. I just have a problem with the price, and cannot possibly afford it unless they get it covered by insurance. Relaxis has it's own FB page and web site , so you can contact the company through those.

[Hidden in reply to DisneS]

I have just written a long message hope that helps you.

[nightdancer in reply to Mariahbelle]

and we also have to think of the long term effects of severe sleep deprivation. I have tried everything, and yes, acupuncture and anything else I thought might work. Sleep deprivation is a deadly thing, so we all have to do what works best for us. It is not the SAME for everyone, and putting people down who have to take medication to survive, is not a good way to go.

[restlessinlondon]

Hi Moysie, do have a look at the RLS-UK website at rls-uk.org. It gives a lot of helpful advice and also has a section for professionals you can show to your doctor. The other drugs you are on may well be affecting you. Hope the neurologist can help.

[silleecharle]

Hi moysie,

I really feel for u as I too have cried and begged for the rls to stop, iv went days with no sleep and at my worst i self harmed thru the frustration and sleep deprivation, iv tried everything and I mean everything, from doctors medication to all the old wives tales, iv got neurological problems from yrs on opioids and spinal problems, my nerve problems r even in my hands and arms, somedays the sensation of holding anything is so overwhelming i hav to put it dwn, atm I'm on rophinerole which eases but iv flare-ups, I'm now trying cannabis capsules, they r completely legal, I'm hoping they help as iv immense pain in my body everyday, wot I will say is my symptoms eased wen I asked to b weaned off all my meds, 25 tablets a day hence why I'm trying these capsules to ease the neurological and arthritic pain x

[Mariahbelle]

So sorry to hear you're having such a bad time. I've so far stayed off meds. My RLS affects one leg at a time. I find lying on the good side and raising the affected leg sideways until I can hold the movement no longer gives some relief.

Good luck.

[Joolsg]

Hi Moysie,

Like you I've been in tears with this horrible disease causing jumpy legs all night and all day stopping any sleep. This website has literally saved my life. The information on here and the support of all the fellow sufferers is wonderful. Are you still on the pramipexole? If so, you may have developed augmentation which will only stop when you get off it. Read all the info on here on augmentation and how to withdraw from it. I'm 2 months into withdrawal and I didn't think I would survive the last week, it was so bad. The advice, help and support I got from here has got me through the worst of it, so do read all you can. People on here know more about RLS than most neurologists - I know because I see neurologists regularly (for MS) . I hope you can find out what steps to take next. By the way,acupuncture and herbs won't stop the RLS- I've tried them all and spent a fortune to find out the hard way.Wish you well, Jools x

[Hidden in reply to Joolsg]

I developed augmentation from taking Requip. I don't understand why you have to go through withdrawal. I just changed my prescription to Meripex and it worked immediately. No one ever suggested I had to withdraw from one medication to take another. I went from taking 1 mg of Requip 4X/day to .05mg of Meripex 4X/day. Sometimes I'll have a 'bad day' and then I'll take an extra Meripex but I'm no where near the amount of Requip I was taking before changing over. I suppose we're all different and what works for one of us doesn't work for another. I did have 1 bad experience. When I picked up my last refill from the drug store the pills weren't the same as I was used to. The druggist said they were the same pill but from a different manufacturer. I know they say all generic pills are the same but in this case, it took my system almost 2 weeks to adjust to the new pill. I thought I was going through augmentation again, but it finally worked itself out. Meanwhile I was on the phone every day trying to get my old pill back. It was a scary few weeks. I thought I was going to start with all the old symptoms again but, like I say, the pills finally started working.

[Hidden in reply to Hidden]

When you change from one dopamine med to another then you dont wean off it. But when you are detoxing completely from a dopamine med then you need a backup med for the withdrawals. Also you are taking less Mirapex than you were Requip because Mirapex is stronger than the Requip. So, the dose will be different.

[Joolsg in reply to Hidden]

Hi bumpsgirl,

Like others have said, it's the dopamine that's the problem so at some time it will cause augmentation. I am using tramadol to help but it's still brutal. When the dopamine is out of my system I'll then try gabapentin or Lyrica. It's such a shame that dopamine stops working because it was a wonder drug. Maybe they'll be able to find something that has results as good as dopamine without the augmentation in the future.

[snc1470]

I too had augmentation with requip. The doc put on mirapex to start that evening. Life saver. Haven't felt any symptoms since that change. I know augmentation can happen again, but I'll ride this train as long as it continues to work.

[Hidden in reply to snc1470]

I am glad you know that augmentation will happen again. When you have augmented on a dopamine med, you will most likely to augment on another one.

[nightdancer in reply to snc1470]

Just keep the dose as low as possible, the trouble comes when the doses get upped and upped and then augmentation. Also, this class of meds does not work for everyone. The experts are actually getting away from this class of meds, because of all the augmentation issues. So, as long as you can continue on a nice low dose, and it helps you, that is wonderful.

[snc1470]

I actually asked my neurologist about using deep brain stimulation. I also suffer from moderate sometimes severe depression. And I really can't take anything to help that without it totally setting my legs of to crazy land. But he said there was no research to show that DBS had any effect on RLS. I cried like a baby

[Hidden]

There has not been enough research on DBS for treating RLS as far as i know. Have you looked at this two websites for treatment for depression which dont make your legs go crazy.? Anti -depressants can make you legs go nuts, but there are two that are RLS friendly for most RLSers. Either rlshelp.or or rls-uk.com

[nightdancer in reply to Hidden]

DBS is used for parkinson's and there is no proof and very little research on DBS and RLS. it is not meant for RLS at this time, only for Parkinson's, which is not related to RLS, it is just that some of the same meds are used to treat both, like many diseases are treated with the same meds for different things. For example, Gabapentin is used for RLS, nerve pain, and epilepsy.

[Pappou]

I've found one herb that works for me. Check out my previous post.

[Pippins2]

Moysie, welcome to the club! ! When did you stop taking Pramipexole? What dose of Gabapentin are you on and how long have you been taking it? What other meds do you take? Sorry for all the questions but your answers are important. .Pipps x

[OldHollow]

In the spirit of balance, I think the majority would agree that the drugs tend to be the way to go, but there's absolutely no harm in hitting the supplements too. I've found a combination of both works best for me. My experience of things like acupuncture is that they can offer some benefits, but almost always very short term and relatively subtle. There will be a regime that works for you, so just press on until you find it.

[nightdancer in reply to OldHollow]

I also use a combination, but have to have the meds I take now, after many years of trial and error. The only thing we know for sure is that no one thing works for everyone. If it were that simple we would not need support groups. I live in the US, and do use prescription meds, plus herbals, and medical marijuana. The combination I have worked out with my doctor does control my severe RLS 90% of the time, thank goodness, all we can do is try til we find something that works for us.

[wifekids12]

hi im a sufferer like you and i also take prampinexole. i also take pregablin for another condition called lymphoedema. i take 0.88mg of prampinexole and 100mg pregablin. this usually works but at the mo the heat has made it worse. i sit in my chair with my legs crossed at the knee and make it go (dead) lol. i have found that this does relieve it for a while and if it starts up again i just repeat. i dont know why this works but it does. good luck to you and if you find out anything could you pass it this way please thanks

[nightdancer]

Everyone finds what works for THEM. no one thing helps everyone. That is the only "rule". if you choose to go all natural, that is your choice. After 40 years, I have no issue with the meds I take for RLS that control it 90% of the time. it took me 20 yrs to get to the right combination. Also depends on the degree of severity that you have RLS. That reminds me, it is time for my meds.

[ARKSOTO in reply to nightdancer]

I could have written what you just wrote, and probably have. I once read, "You think you want to die, but you really just want to be saved", and I wondered if the person who wrote it had a severe case of RLS.

[Richvamidl]

Try foot wrap from restiffic . Need prescription ; it is working for me.