Rls and peripheral neuropathy

[nparks]

Hi, first time on here and just wondered if anyone has been diagnosed with peripheral neuropathy? I was diagnosed about a year ago. I have had restless legs since I was around 19. My doctors here give you absolutely nothing, amitriptoline is all they offered and it had the opposite effect and kept me awake all night. I take it there is no one drug that works..... I don't sleep anymore and would literally cut my legs off at times. Any advice greatly received.... Noreen

[Hidden]

Hi, some people have both RLS and peripheral neuropathy. Which country do you live in..? Amitryptiline (sp) is not the best for RLS, for most people it will make RLS worse. Your doctor needs educating in RLS. There are other meds for RLS to try. There is no one drug which works for everyone unfortunately. Its a matter of keep trying what is available to find the med which suits you.

[nparks in reply to Hidden]

Hi Elisse, I live in Northern Ireland. I have such a bad stomach due to too many painkillers over the years, I noticed some people mentioning a patch, do you know what it is like.

[Hidden in reply to nparks]

They are referring to the Neupro Patch, its a dopamine agonist med like Mirapex or Requip. but it works for 24hrs, so you put it on once a day. For neuropathy then doctors will give Gabapentin or similar. Gabapentin can also be used for RLS. Some get good results from taking it, some dont. If you can print some information about RLS and take it to your doctor then you might get more help. NHS Choices has RLS info. and so does RLS-UK website. Your doctor needs to help you and work with you to find what will work for you, no one has to go without trying any meds these days. It sounds as if your doctor doesnt understand how sleep deprivation can cause other health issues. And its torture going without sleep. Being in Northern Ireland then your doctor should be able to prescribe meds the same as the rest of the UK.

[nparks in reply to Hidden]

Thanks Elisse, I shall give it a try. It's very frustrating. I also have back problems and I buy painkillers for that, it's hard to work and take strong medication, but I'm really struggling to keep my job now. Thanks for all your help.

[Hidden in reply to nparks]

What pain killers are you buying...co-codamol..? I dont know how people do work having RLS and not sleeping at night. I am soooo grateful i am now retired.

[nparks in reply to Hidden]

I take volterol and neurofen plus, mainly for my back and nerve pain in my legs. I haven't found any painkiller work for RLS. I don't know when I sat and watched a film and got all the way through it without having to get up and walk around the house. It limits what you can do. Jumping legs in a car on a long journey isn't fun.

[connie50]

hi nparks welcome to the web site you will get plenty of info about RLS on here I've been a member of this site know for quite a long time(even though I don't visit a lot) you need to print something of to take to your GP look on DR Buchfuhrer web site he's a well known DR that specializes in this field & has wrote several books on this matter you can print it of & take it along to your GP, some GP haven't a clue about RLS. you are not a lone there are hundreds even thousands of people that suffer with this terrible thing take heed from Elisse she is very knowledgeable on this subject, I look up to this woman she has given me a lot of good sound advice

[Hidden in reply to connie50]

Www.rls help.org

[nparks in reply to Hidden]

Thank you Yikes

[Hidden in reply to connie50]

Awww thank you Connie, how are you doing these days with your legs and meds...

[connie50 in reply to Hidden]

hi Elisse no problem its true you are very knowledgeable when it comes to RLS anyway my legs are driving me barmy on Mirapex at the moment only take 2 (think I have augmentation) .088mg + the neuro prescribe me gabapentin but they arnt doing nothing the best med is tramadol but I get terrible itching keeps me awake (when I do get some sleep) sometimes its really really bad see neuro this Thursday going to ask her if there's something else instead of the tramadol, if it didn't make me itch it would be fine, I have retired now so taking walking up as a hobby + I do a lot of swimming take care love SUE

[Hidden]

Hi nparks, Welcome to the forum ! You have had some excellent advice from 'our Elisse' regarding your restless legs and neuropathy. Do you see a Neurologist ? If not this may be a good idea or is there a different GP you could see? Noticed you are taking Voltarol and Neurofen plus together.As they are both NSAID type of meds it is no recommended to take both as they both irritate the stomach and I notice you are having bad stomach problems. Has the doctor not given you any meds for the Neuropathy? As for Amitriptylene the worst thing I have ever taken for my rls drove me half daft!

Good luck x

[Hidden]

I am not the only one who gives good advice, there are other members too..

[nparks]

Thanks everyone... I have seen a neurologist, they are testing me for everything at the minute, trying to see if there is a reason for the neuropathy. I take as little as possible of tge neurofen plus and only take the volterol when desperate.

[Hidden in reply to nparks]

As you are already seeing a Neurologist maybe that is where to seek treatment for your restless legs rather than your GP who seems to know very little about rls

[nparks in reply to Hidden]

Strangely enough, she suggested Amitriptyline and when I said I had been there and done that, she prescribed Mirapex (Pramipexole) and I'm afraid they made me so sick I couldn't tolerate them. My GP gave me Zolpidem, they worked really well and I only took half the tablet, but he will only prescribe them for 7 days as he said they are additive... At this stage I really think the addition is the least of my worries and they have almost no side effects compared to the Mirpex.

[Hidden in reply to nparks]

This is only my own opinion but any doc who hands you a script for Amitriptylene may aswell hand you a note saying 'I dont know how to treat restless legs' There will be considerable worsening of symptoms in the vast majority of sufferers.The problem with sleeping aid tablets like Zolpiden is they work very well for most but not all sufferers at first.Then they dont work so well and you need to take more to get the same effect.I would use them for very occasional use when desperate but not on a regular basis.I suppose the problem with rls is we are desperate most of the time! Although I am sleeping well myself at present, I dont sleep till the early hours but then I sleep through a good 6/7 hours.Its not always been like this though I understand absolutely the brutality of sleep deprivation

[connie50 in reply to nparks]

there are several types or meds for RLS (think I have tried them all)but still not found the one for me was on repinarole for quite a long time but got augmentation so had to change meds on Mirapex know only been on it about 4weeks (think I have augmentation) that's the only trouble with dopamine drugs (that's what I have found anyway) you think you have found the one then augmentation sets in then you have to start all over again trying different meds, eventually you will find the right med same as me I will find it. Take care Nparks SUE

[Golfislikelife]

Hello and good day Noreen,

Have you tried medical marijuana?

It works wonders for me.

God bless!

Peace,

Kent

[Hidden in reply to Golfislikelife]

I would be at it 24/7 as symptoms crept up on me of rls and neuropathy.

Unfortunately, I can't get away with growing or smoking it or even having it

in my possession because of my husbands profession...to buy it from a

street vendor would be out of the question at the going rate. Oh how I

wish sincerely that I could grow it. I do have a green thumb for most

garden items except flowers.. I can make some work, others fail by a long shot.

[Eileenk]

Tried "medical" marijuana....but it gave me terrible munchies!!!!!

[Dana0612]

So far the meds I am taking haven't done much either. I've also had the thought of losing both legs, but then you deal with phantom pains