Does anyone suffer from rls in their arms as well?

I have had rls for 36yrs and for the last 2 yrs I have had the same feelings in my arms. After getting some relief using Ropinirole and Procylidine My rls is back with a vengence. After noticing that my rls became stronger after taking my medication, I asked my doctor if the ropinirole could actually cause my rls to become worse, to which he said yes it could. With having it in both arms and legs I get very little sleep. It was bad enough when it was just in my legs.

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  • yep i do................both legs and both arms and anywhere else not had any meds for years but hopefully thats about to change come thursday when i go to the dr's i have RLS 24/7 now don't sleep at night other than a couple hrs now and then ooooooooooor if im lucky like the other night first time in months ..... a full 7hrs but that was after 3 night of non ... ,

    i tried Ropinirole only worked for me for 5 days then nothing i even tried taking one more tab than was told but nothing other than making me feel like hell ... ,

    hope you manage to get some peace tonight

    sal :)

  • Thank you for replying sal. I'm seeing neurologist on Thursday - not about rls but it will no doubt crop up in the consultation haha. I too have it 24/7 and get very little sleep at all. The recommended max dose of ropinirole is 4mg for rls but I managed to persuade nuerologist to let me try 6mg which helped for a short time. Have you tried both ropinirole and procyclidine together? When I first started that combination it really helped for several months, then for whatever reason it stopped.

    I'm going for another barefoot walk in the garden again haha

    Good luck for the future

    Steve

  • walking in the garden barefoot,u may get snake bit that would take you mind off rls but it could kill you haha

  • Yes, I getit in my leg, back, stomach arms, but it is justan annoying twitch, doesn't keep me awake and if I move the arm etc,, it stops.After reading some of your letters I feel I am the lucky one. No one has mentioned diet. any one suggest foods that make it worse?

  • Yup, arms, shoulder, shoulder blades, going all over the place!!!

  • I wouldn't wish this on my worst enemy lol

  • In the evening I would like to sit and relax but it is impossible. Not particulalry pain in all the limbs and body but this desire to constantly move through discomfort.

    I am on Neupro patches but they are so difficult to get hold of.

  • Hi, i'm going to ask about the neupro patches tomorrow. I had to leave the cinema this afternoon because I was shaking that much.

  • Hi again, just arrived home after seeing the neurologist. He's put me on the Neupro patches and I am hoping and praying they work. He said he doesn't prescribe them very often except in severe cases. When you say they are difficult to get hold of do you mean that chemists are having trouble getting them?

    He told me that there was a problem with storing them correctly because if they are not stored in a fridge they crystalise and dramatically reduce their effectiveness. The manufacturers didn't know about this problem, so that may have been the cause of your getting hold of them.

    Best wishes, Steve.

  • Hi Steve

    My Surgery took two weeks to get the first patches (I dont get a prescription as my GP surgery is also the dispensery it being well out of a town)

    I have just ordered more patches over a week ago they still have not got them in as yet.

    They do need to be kept refrigerated

    kindest regards oldtyke

  • Hi again oldtyke, I can't get them until the consultans letter gets to my gp.I have just asked my phamacist about them and said he hasn't had any problems getting them and he will have the day after I put my prescription in. He said he can't keep them in stock because they have to be stored in the fridge. Even so it does sound like an excessive amount of time for you to have to wait to get them.

    I'm just hoping they will help me.

    Best wishes, Steve.

  • I hope they do help, I am only on 2 mgm per day. So far I have not found any side effects, I am supposed to go up to 8mgm as I tolerate it, but I am happy with 2 Mgm at the moment in combination with the Madopar it keeps me on a reasonable balance. I dont expect miracles, and don't wish to increase a dose up until I feel i really am in need of it.

  • Oldtyke, the dose for the patch is....1mg, 2mg, 3mg for RLS, your doctor should not be telling you that you can go to 8mg. that is the highest dose thats used for Parkinson's Disease.

  • Elisse is right. 8 mgs is way too high a dose for RLS for that med! RLS is different dosing than Parkinson's disease. My father had Parkinson's, so I have dealt with both ends of it. The medication will only come back and bite you if you ever got to that 8 m dosage; it is called augmentation. It happens with all f the dopamine meds, but not to ALL people, oldtyke. :) it is all trial and error, but good to have the information.

  • i have been on the 8mg for a few years now and even then RLS makes it through on really wet days. I had to go that high because it was so bad i was ready for topping myself. It was horrendous.

    Have not heard of any probs with going that high

  • Yup, arms /legs and now my face, eyes and nose. driving me nuts!!!

  • I know, it's a really debilitating thing to live with - if only the doc's took it more seriously it would be a help.

  • steve57, you know you are having augmentation on the ropinerole, upping the dose works for a while, then the RLS comes back with avengence... Time to change that med. or have a drug holiday.

    And yes, i get RLS in my shoulder blade, but not all the time...

  • Hi Elisse, i've asked about other med's in the past and have always been told that there aren't any alternatives that would help me. Your right about taking more ropinirole doesn't help long-term, and i think i'm going to stop taking them and see what happens,

  • Well, you have been told wrong about meds. There are other classes of meds to try, and sometimes we have to take a combinaton for them to work. We are all different, and med names and availability differ from country to country, but in te UK, you still have options. The best web site to look up RLS treatments is the treatment page on rlshelp.org It also has a list of

    Foods and Drugs to avoid" which is equally as important. It is based out of the US, but it will give you a load of information, and you really need to pay attention tto the augmentation thing Elisse mentioned. The more you know, the more you know when you are not being told the truth, or can tell if a doctor does not really know what he is talking about when it cmes to RLS.

  • Hi nightdancer, I saw the neurologist this morning and he's put me on the Neupro patches.. He is a lovely doc and very sympathetic towards rls sufferers. I can just stop the procyclidine and as soon as I can get the patches I only have to leave 24hrs between the last ropinirole and starting the patches.

    With regard to being told wrong about meds, that was quite a few years ago when some doc's were sceptical at best and some wouldn't even accept that rls even existed. Thank heavens things have improved a lot since then. I am very fortunate in that I see my consultant in a centre that is dedicated to neuro and pain management which covers most of the North West of England and North Wales.

    I can only blame myself for not making use of this fantastic centre until recently when the rls became so bad that I started having dark thoughts about my situation.

    I just hope that the patches work for me.

    Kind regards, Steve.

  • Steve57, if you just stop the ropinerole, your legs will go nuts. Read the leaflet, it tells you in there to not stop it suddenly.

  • You cant "just stop" taking them.

  • It's such a unique feeling that you KNOW it's restless leg - regardless of the body part affected! Why can't it happen in the abdomen - maybe take the place of sit-ups? No such luck I guess. I find nearly TOTAL relief from the Neupro patch. Aside from the itching, it's been great for me for years :-) GOOD LUCK!

  • Thanks Cathy, I'm so glad the patch works for you. The medication i'm on isn't working for me now. i'm seeing a neurologist tomorrow and will definitely ask about the neupro patch. I only came across this site yesterday and have found a lot of useful information that I can put to him.

    Sorry, I don't know how to put a smily face in this reply lol

  • Yes Ive developed it just recently in my upper arms and across chest......on both sides some nights!!.....reckon I will be freaky enough to get job in the circus soon!!!!

  • Thanks mumoftwin, I'm thinking of becoming a professional dancer. Along with the rls and my arms shaking, i have epilepsy as well - what a combination lol

  • me too, had rls for years now following a brain hemorrhage, I always thought the two were connected but not anymore. Last night was the first night I had it in my arms. Been on ropinerole for a few weeeks and managing about 4 hrs sleep but last night no sleep. It was awful legs, arms and my back!!! Not sure wether to take an extra ropinerole tonight. x

  • Hi bvlgari, i've been taking 6mg of ropinirole for over a year now (the max recomended dose is 4mg) and it helped at first but not any more. My neurologist agreed that I could try that dose but did say taking any more than would not help my rls. The lack of sleep is really having a huge impact on my life and I'm at the end of my tether at the moment. I hope you have more luck with the ropinirole than me x

  • thanks Steve I too am going through a bad time, no sleep again last night. I am exhausted. Have taken more ropinerole tonight so lets hope I get a few hours. Hope you sleep a little tonight too. xx

  • Hi bvlgari, I have only managed a few hours over the last 8 nights. I was walking barefoot on my lawn at 4am. That was after I'd spent a few hours pulling my hair out lol. I hope it helps just a little bit knowing you are not alone. Instead of fighting for the sleep that I already know is not coming I get up and do something I like, and make sure that I cannot see a clock.

    I really hope you manage to get some sleep tonight as well x

  • Again saying you are experiencing augmentation on the ropinerole. bvlgari, you need to change this med. it wont get any better. The increasing will only help for a while and then come back again with avengence. The dose you are taking is too high, taking more wont help. Your neuro is right...!!

  • I will try this again for the 4th time to get this post up, This web site is going to be the end of me, I swear! steve57- did you know that drugs like Procylidine are anti cholinergics and can make your RLS worse? Not like augmentation, but can just can make it worse. Augmentation happens when your dopamine med is too high and you have to keep upping the dose, and your RLS goes bonkers!

    So, it could be a combination of the two meds, or your RLS is progressing, as it will. Yes, I havce RLS 24/7 without any meds, so I take plenty. I get it in my legs, arms, torso, hips, between the shoulder blades. I would much prefer it to be called RLD- or "Restless Limb Disease". :o)

  • Thanks for perservering, unfortunately I am on a lot of different med's for other problems as well - my middle name is "lucky" lol. The rls med's I'm taking aren't working so I think I'm going to stop taking them and see how I get on.

    I can think of a lot of alternative names for rls but I'll keep them to myself lol

  • Steve - you type : (colon) then - (dash) then ) (close parentheses) Then you have a happy face :-) I hope you have MANY reasons to use them in the future!

  • Awww thank you so much and I wish you the same. :-) I was prescribed the patch today and as soon as my doctor recieves his letter I will be able to start using them. I just hope they work because I've already started pinning my hopes on them. Have you had any other side effects?

    My wife used to use morphine patches and had problems with itching. It turned out that it was the sticky part of the patch causing it not the medication itself. The doc gave her some cream and she was fine after using that.

    Best wishes, Steve.

  • I have it in my arms as well as my legs also. Quite often worse in arms. Noticed comment on drug holiday for augmentation. I am on 3mg roprinerole and get symptoms an hour before I take meds on an evening and up at 3am with insomnia sometimes. I tried drug holiday. You have got to be joking - after 2 nights of mo sleep at all (except for falling asleep walking round the living room and walking into a door!!!) I forgot the drug holiday idea!!!

    Simon, Halifax, Yorkshire, UK

  • Hi harecatcher, I think the lack of sleep problem is 2nd only to the rls itself. If only we could escape into a regular peaceful nights sleep things would at least seem better.

    Fortunately I have been prescribe the Neupro patch today so I will be off the ropinirole very soon.

    One thing that has helped me a lot is finding this website with such lovely and helpful people.

    Kind regards, Steve (In Liverpool)

  • HI steve

    Couldn't agree more about this site and great people. I always find people cant empathise with RLS unless they have it as its so hard to describe the symptoms. A great community of fellow sufferers!!

    Unfortunatley I am on holiday in September as was hoping to go to the RLS-UK AGM and meet a few people in person. Shame!!

    Simon

  • FYI - one thing I was not warned about w/the patch was that it takes a LONG time to get in your system! I was given 2 and 4mg samples to try, and switched to the 4 before I realized this. For me, if I put it on around 4 or 4 (yikes - that's NOW) I will be good for the night. I also overlap them a bit - I will put another on shortly but leave yesterday's on until I go to bed. Probably not recommended, but if I take one off before putting another on I have periods of HORRIBLE. I don't notice sleepiness or nausea with them and truly feel they are an absolute miracle. I'm heading out to the show, and thankfully don't need to dance in the aisles while everybody else relaxes and enjoys the movie! Saying a prayer that you experience the same relief :-)

    Anxious to hear good results with your patch experience...

    Cathy ~ NOT in Liverpool unfortunately, but in Detroit.

    p.s. Better to itch than twitch

  • Sometimes we have to adjust the meds ourselves to find what can works best for us....so if you find a way to get the relief then so be it.

    I must have been lucky, because when i first used the patch it worked that first night and i slept like a baby...i did have some side effects but they wore off..

    Altho if you are still using the 4mg, it is a bit high dose for RLS.

    Irene. UK.

  • Hi Cathy, thank you for being so kind in saying a prayer for me. I forgot to mention that my neurologist has also ordered a blood test for my ferritan level as well. I can't remember if he said that too much or too little iron can cause or increase rls symptoms. I always write down as many questions as I can think of and take them with me when I go to see doc's. Unfortunately I left it at home so I was trying to listen to him and remember my own questions at the same time, but being a mere male I can't multi-task very well :-)

    I hope to start using the patches by wed/thurs next week. I have to wait for the consultant to write to my own doctor who will then give me the prescription. It's a public holiday here on Monday so hopefully it will be faxed to my doctor on Tuesday. Then the pharmacist won't get until the next day because he doesn't keep it stock because it has to be kept refridgerated.

    So to make a short story long :-) it will be a while before I can let you know how I get on.

    Just chatting on here combined with the possibility that the patches may work, has really lifted my mood a lot. I will let you know how I get on as soon as possible.

    Kind regards, Steve.

  • What most people do when doing a drug holiday, is to take another RLS med while doing it...If people are taking ropinerole, they use mirapex for a few weeks then go back to the ropinerole...if using mirapex, then switch to ropinerole for a few weeks then back to the mirapex. The same for the patch. switch to another dopamine agonist then back to the patch. Just stopping any dopamine agonist med will send your RLS nuts, as you have found out, its like having withdrawals.

  • Elisse, would drugs do you take, I have only tried gabapentin and am now on ropinerole. I asked my neurologist if I could try the patch but she said its the same as ropinerole!! x

  • I am using the patch, and altho similar to ropinerole and mirapex, the difference is you leave the patch on for 24hrs as its a slow release med. The side effects are almost the same, with a few differences, ropinerole seems to make people feel very nauseas after taking it. The patch made me feel a bit nauseas but it wore off. Some people do better on the patch than taking ropinerole or mirapex. but as always when taking RLS meds. its trila and error to see which suits you best. If the ropinerole is working for you then, as the saying goes, it it isnt broke then it dont need fixing.

    I tried gapapentin it didnt work for me using 600mg and just sent me to sleep during the day..

  • Hi Elisse, I specifically asked my consultant about stopping the ropinirole and any problems I might have. He said I should be fine and that I have to leave a 24hr period between my last ropinirole and putting the first patch on. My rls is so bad at the moment that only 2 nights ago I didn't want to go on anymore.

    My general health is not too good and I have to very careful about what med's I can take which won't interfere with the other med's for my other problems. Swapping med's back and forth like that could be risky as I am on a lot of heart meds. I was on mirapex a few yrs ago but unfortunately they didn't help my rls.

    I appreciate your advice and will bring it up with my doctor and pharmacist and make sure that what my consultant neurologist has told me is right before I take the plunge.

    Kind regards, Steve.

  • Hi Elisse, I forgot to mention that my neurologist wants me to have a blood test to check my ferritan level. I can't remember if he said it can cause or make my rls worse. My head was full of questions and I didn't take everything in during the consultation, my own gp will tell me about that next week.

  • Your ferritin level is how your iron is stored. If your ferritin level is below 75 then you MIGHT benefit from taking iron. Some people find getting their ferritin level up if is below 75 can help with the symptoms.

    But dont bank on it, you maybe a lucky one and find it helps. For most people either their level hardly moves and if it does it doesnt make any difference to the RLS.

    You have to take the iron pills for months 3 times a day. Also take Vit.C with them to help absorb the iron, and that is the hardest part, getting the iron to absorb, which is why getting the ferritin level to get higher is hard.

    But its worth everyone having the test done, because it might just be the reason you have RLS. Its something to rule out as the reason.

    It didnt help me when i went thro that with the iron.

  • I'm my own worst enemy a lot of the time and tend to put my own health problems on the back burner. The main reason for that is that I am the sole carer for my very ill wife. She is confined to bed virtually 24/7 but I try to get her out of the house whenever possible. I feel totally exhausted all the time but I put it all down to lack of sleep with the rls and stress and strain of looking after my wife.

    I eventually went to my doctor because I started having hallucinations which took the form of things moving similar to watching a 3d film. I knew they were not moving and thought it was something to do with vision problems. I was also having problems with balance with feelings similar to vertigo. My doctor said he thought there was a possibility that it could be due to med's and referred me back to my neurologist. So that is how I ended up seeing him about the hallucinations rather than being referred for my rls. He also did some blood tests prior to my appointment with the neurologist. To add to my problems the results showed I have an under active thyroid, which does explain some, if not all, of why I'm exhausted all the time.

    I have a quite a complex cocktail of med's for other medical problems, so changing any of my med's has to be closely monitored. I have arthritis in most of my joints and have morphine sulphate for the pain, various med's for coronary artery disease, asthma and epilepsy, and other problems that are not as serious.

    The neurologist's diagnosis is that the ropinirole and procyclidine are the cause of the hallucinations. I hadn't even heard of Neupro patches until I found this site, so the information I found here was very helpful at my consultation.

    I know I shouldn't, but I am pinning my hopes on the patches and I am anxious to start using them. I am quite worried about the possible side effects though, or a conflict with any of my other med's.

    All things considered though, I do feel a bit better mentally due in no small part with the people on this site such as yourself being so helpful and supportive.

    Kind regards,

    Steve.

  • Sorry to hear, you certainly have more than your share to deal with.

    I agree with your neuro regarding the hallucinations being down to the ropinerole as i think it states it in the leaflet, i dont know about the other med. but i am sure the neuro is right on that aswell. The higher the dose when taking the dopamine agonists the more chance of the side effects aswell as augmentation. So when i see people post that they are taking a much higher dose of a dopamine med than supposed to for RLS, alarm bells ring...

    I hope the patch works for you, and you can keep to the lowest dose possible. I am really sensitive to all the RLS meds, the worst ones for me have been daytime sleepiness and dizziness and thats even on the lowest dose. But, we have to remember, even tho the leaflet can sound scarey with the side effects listed, doesnt mean we will get those side effects. Some get none at all. Everyone should read the leaflet so they are aware. That list is because someone has had one of those side effects and the drug company has to list it.

    Good luck for when you start the patch.

  • Thank you Elisse, the procyclidine does have hallucinations as a possible side effect as well. There was a guy who successfully sued the manufacturers of mirapex saying that it turned him into a compulsive gambler. He had never gambled previously and ended up losing his home, car and eventually his marriage. The manufacturers added "may cause addictive behaviour" pretty quickly after that :-)

    I agree with you about taking higher doses of dopamine (or any med's) but I can understand why people do it. I took more than the highest dose after consulting my neurologist. The logic I used was about taking into account a persons size and weight. He agreed to let me try 6mg rather than the maximum recommended 4mg. What he did say though was that although taking 6mg wasn't dangerous (parkinsons suffers can take as much as 24mg) the problem is that it becomes ineffective and leads augmention as you already know.

    To be honest the only possible side effect i'm worried about is the possibility of falling asleep - particularly with regard to driving, so I've decided to make sure I haven't got to go out for the first couple of weeks after starting them. I am also starting with only a 1mg patch anyway, so hopefully everything will go to plan.

    Kind regards,

    Steve.

  • You shouldnt fall asleep on a 1mg patch, i didnt and i am really sensitive to RLS meds. but, i know we are all different when trying them...you may be a little sleepy in the day. I think the higher the dose is when the really bad side effects can happen to some people. I am now on the 3mg patch the highest dose, it has taken a while to get to that dose, and i had a few side effects along the way.

    But, out of all the RLS meds. the patch has been the best for me. When is stops working i will do a drug holiday using probably mirapex which i hate, but needs must..

  • Hi again Elisse, i've just found out my ferritan level is low. I've had problems getting hold of the patch and finally got my hands on the prescription today.The consultant got it sorted today but because it was prescribed by the hospital It can only be filled at the hospital pharmacy. Can you imagine my delight when they told me they didn't have any and it will be another 2-3 days before they can get them !!!!!!

    I had forgotton about the ferritin test because of the hassle I was having getting the patches. I can't take iron at the moment because I may have a duodenal ulcer. If it wasn't for bad luck I wouldn't have any luck at all :-)

    If I ever get these patches i'll let you know how I get on. Good luck with your rls.

    Kind regards,

    Steve.

  • In response to the original question, Yes, do get it sometimes in my arms. Not often. My RLS is the creepy crawly type ( no pain ) just can't stat still. The need to move is almost entirely satisfied by wearing compression stockings, therefore I,m not on meds. When it goes to the arms I wear an arm gauntlet which is a compression garment fo the arms.

    Where I get into trouble is when it goes up past the thigh an into the groin. Sort of nothing to move other then trying to urinste. My best effort at a compression garment then becomes a long leg panty girdle which actually does sort of work.

    I know I sound lie a broken record here, but have you tried compression stockings. For a lot of rls sufferers it works , never know

  • Thanks for your suggestion Drwass2, I'll try that if my patch doesn't work. I'm at the point where even a slight reduction in my rls would be so welcome.

  • You are extremely lucky to be only using the compression stockings, they did work for me for a while but not now even with meds.

  • Oh yes, definitely in my arms and chest and legs with the insects running under my skin - driving me nuts! My RLS was controlled reasonably well with ropinirole from my neurologist. The idea is to start on 0.25mg and increase until it's controlled - normally up to the max amount. My neurologist was not keen to keep me on it, at worst I was on 1mg, I have had to increase it to 1mg again recently although that's not controlling it. I do wonder whether there is some underlying fibromyalgia too. Does anyone know of any neurologists that specialise in RLS - I don't care where they are!! My neurologist at one of the top ten hospitals in london was not 100% confident in what he was doing it seemed! He wanted to reduce the ropinirole and put me on an anti-depressant. As part of the medical community myself I understand his reasoning but I already told him I couldn't function at work when on it. I have to agree with everyone you wouldn't wish RLS on anyone and while my wife is very sympathetic, no-one can understand how bad it is. I only have very very slight symptoms which I didn't realise was RLS until I had a double disc replacement and BANG there was the RLS! I spent 3 months with the pain of the op as it was healing and couldn't sleep because of the RLS.

  • Hi Alisdair, until I came across this site a few days ago I didn't know about any other treatments apart from the combination of ropinirole and procyclidine that I was on. Your reply has given me me food for thought though because I had a back injury in the late 1970's which if my memory is correct is around the time my rls started. I didn't seek treatment for my rls until many years later and I do recall one doctor saying that my back injury could be the cause of my rls.

    I haven't had much time to look for information about the treatments available, but a lot of medications can be beneficial for other ailments and not just the one it was originally designed for.From the limited time I have spent looking at some of the treatments for rls, it seems that a lower dose of parkinsons treatments is a common theme.I take an anti-depressant (Lamotrigine) but for me it is prescribed as the treatment for my epilepsy.

    If you aren't happy with your neurologist don't be afraid to ask for a second opinion.

    Good luck :-)

  • Hi Steve,

    Thanks for your reply, I was not happy with my neurologist, so I left him, I am in the lucky position of having private medical care so am on the hunt for another, but no-one seems to be able to recommend and neurologists that specialise in RLS. I don't really care where they are as I would be happy to go anywhere for the best treatment!

  • Your welcome Alisdair, I simply "put up" with my rls for years and I only went to see the neurologist last week because I was having hallucinations. During the consultation he told me that it was almost certainly my rls treatment causing them.

    I have renewed hope now, not just because he has prescribed the new treatment for me (neuro patch) but also because he appears to be a very sincere and understanding man, particularly about severe effects rls has on peoples lives.

    He is based at The Walton Centre in Liverpool. which only treats neurological problems and pain management.

    Good luck with your hunt.

  • Hi all

    I have been using DHC as i have bad RLS in both legs up to the thighs and arms and hands(wrists)

    Its bad when it can get to the wrist as it can have you curling your wrist backwards and totally awful.

    Its bad enough in the legs and i was given tramadol but had to increase the dose to a dangerous level (7 pills in one hit) and im on 3 DHC at the moment(every twelve hours) and even thats getting less effective like the tramadol was as i have a high resistance level after a small time span.:(

    RLS really is a pain in the everywhere!

  • Hi billy, I'm sorry to here you are having to take so many tramadol. In my reply below to Portia I said that I took an extra MST tablet and it helped my rls for a short period.

    By coincidence, after reading your message I noticed that I was clenching my fists as well as moving my arms around. It was only then that I realised it has spread as far as my wrists as well.

    If anyone can understand the desperate feelings our rls causes us, it's the fellow suffers on this site. But taking a lot of strong pain medication such as tramadol is very dangerous and I would urge you not to do it.

    I have hardly bothered with doctors since being told there is no treatment for for it over 35yrs ago. Now that it completely rules my life (if it's not the rls it's all the knock-on effects of no sleep and depression) i'm going to have to keep pestering the doctors because it is almost at the stage where I will be unable to care for my wife safely.

    Please go back to your doctors and be careful with your tramadol.

    Best wishes,

    Steve57.

  • Oh by the way

    DHC neutralises the RLS for a good 10hrs and you can feel almost normal again(well for me anyway)

    steve

  • Hi I have RLS and PLMD,I only just found this site today !

    I am so glad to know the I am not the only person in the country roaming around the back garden at three o'clock in the morning in my bare feet stretching and kicking like a mad woman..

    I have it in my arms and legs everywhere ! When I try to sleep my whole body goes into jerkys spasms every 15 seconds, I know because I've been awake all night looking at the clock. Like steve57, i have felt like I would go out of my mind at times.

    I now take Ropinerol, 4mg modified release, because I get it during the day as well. I had to go to the hospital one day, they thought I was having waking epilepsy. That's what it looked like. But it was the RLS.

    I still get breakthrough draggy, crampy feelings at night and wake up every two hours without fail, but at least I'm not being shaken senseless by the jerking.

    Nice to meet you all.

    PS I also have Fybromyalgia and Arthritis

  • Welcome Portia, I'm doing my best to keep my sense of humour alive but it's a hard struggle. I think you'll both understand and laugh if you can picture this. We have had torrential rain here for the last 2 nights and thought to myself, "even my walk around the garden is being taken away from me now." Then I had a crazy idea and put a pair of shorts on, grabbed my brolly and sat outside in the downpour with my legs sticking out from under the brolly. When I thought about it later I laughed at first, but then just thought i'm going mad.

    Finding this site has helped me a lot and a lot of nice people have been very helpful. The main thing that helped at first was finding out that I wasn't the only one being driven crazy with rls.

    What I have found that helps quite a bit is the pain medication I am prescribed for my arthritis. I am on MST tablets (slow release morphine) and during a particularly painful time I took an extra tablet and my rls went for about 3 hours. I know that doesn't sound like a long time, but when you've got it virtually 24hrs a day it feels a lot longer. I have since found on this site and links to other sites that some pain medications do help rls sufferers. I don't want to go along the road of ever increasing strong pain medication as a treatment for the rls, but if you are not on strong pain medication it might be worth talking to your doctor about it for your rls.

    I saw my neurologist 2 weeks ago and he diagnosed the ropinirole and procyclidine were the the cause of the hallucinations i was having. He said to stop the procyclidine straight away and when my gp gets the fax he said he was sending to my G.P. to tell him to put me on the neuro patch I was to stop the ropinirole for 24hrs and start on the patch.

    That's when the fun started (he said with extreme sarcasm) :) It took a week for the fax to arrive even with me harrassing both the consultant and g.p.'s secretraries. When it finally arrived my g.p. said he is not allowed to prescribe the initial treatment. He told me that drugs come in 3 categories (with regard to g.p's prescribing initial treatments) green which he can prescribe, and then amber and red which have to be initially prescribed by the hospital.

    At the moment I have still not been able to find out when I can get this prescription and my rls is the worst it's ever been. I was walking from the kitchen with a cup of tea in my hand when I had the first of several uncontrollable arm movements causing me to drop the cup. If it had happened a few seconds later it could have had serious consequences as I was on my way to give it to my wife who is confined to bed.

    I don't know how many phone calls i've made to get this prescription, all to no avail, so i'm considering having to take the procylidine again and put up with the hallucinations until such time as I can get my hands on this elusive prescription.

    Either that or take some alcohol as well as my brolly next time I visit the garden for a stroll, It's 1-30am now so it won't be long =:)

    Best wishes,

    Steve57.

  • Oh Steve ! I feel for you, I really do. I'm afraid that a lot of GP's and other medics don't realise just how distressing this wretched condition really is. The combination of pain, the constant need to move around and the exhaustion from lack of sleep is horrendous. It took 18mths for me to be reffered to a neurologist. I went backwards and forwards to the docs. I was given Amitryptaline, Temazepam,Zopiclone, Clonozepam and Mogadon. Not all at once I hasten to add. Nothing would stop the constant jerking. I was in a daze all day. Everyday tasks became a nightmare. Crossing the road was hazardous as my spatial judgement was non existent. I would bump into walls and door frames. M children would say to me that I looked like I'd been drinking. How do you explain that your body won't let you rest, that even to sit for a while is impossible. How do you tell the person sat in the bus seat next to you that you can't stop the constant juddering, and sorry if your frightening them.

    When I finally went to A & E one day, because I just could not stand it any more during the day as well, I got the impression that one of the nurses thought I was an attention seeker. I cried. No one seemed to understand ,even though I took my ex-partner with me to confirm that this went on all night, every night without fail, and that I was not mad.

    Looking back my RLS started during pregnancy, but went away afterwards. The jerks or PLMD started very subtely. I would be sat reading in bed and suddenly my arm would flick up in the air all by itself. I would think 'how does it do that ?' I didn't tell it to. I actually started to think that I was getting some sort of neurological disorder like MS or Motor Neurone Disease. These symptoms became insidiously worse and worse.

    GP started investigations at the sleep clinic. I had a machine strapped to me over night. This showed that I had sleep Apeonia ( ? ). So I was told I was not to drive and sent home with a CPAP ( or CRAP as I call it ) machine. It has a large plastic face mask, and shoots air up your nose noisily Now I look and sound like Darth Vader on speed. I found it almost impossible to breath, it imakes my face itchy and sweaty AND to add insult to injury, I'm still leaping around the bed, but now I can't get up and move around without disconnecting myself.

    Right now I don't wear the machine, there's no way I can sleep with that thing on. I take the Ropinerole but still get jerks, just not as violent. I told my GP about the breakthrough symptoms and he said that there is nothing else he can do. What a load of rubbish. I have looked on line and there are a huge variety of combinations of medication that can be used. The next time I see him I shall take a print out. One of the best sites I have found is an American Movement Disorder site I shall look it up later on today and post it.

    Hang on in there Steve, your not alone. Have you phoned the neuro's PA and complained vociferously. I would.

  • I've just looked up that web site. It's at wemove.org/rls/rls_faq.html. It's a pretty big site with loads of info. I'm sorry I can't make the address a click on, I don't know how to !

    Lea

  • OH !!! I've done it. ! God I amaze myself sometimes. Ha ! Ha!

  • Hi Portia, you sound like your having fun on the computer at least :-) Thank you very much for link, I've found it and will definitely start going through it.

    I can't tell you how delighted I was when I first started taking ropinirole and procyclidine because it worked immediately at first. Unfortunately my rls started slowly creeping back again. Through my neurologist I went up to 6mg which is 2mg above the recommended maximum dose and the hallucinations started a few months later. I have been phoning my neuro's PA and getting nowhere fast. I was so frustrated today because she told me he was at a conference at another hospital today and tomorrow so I've got yet another lovely weekend ahead. Unfortunately I let my anger get the better of me and asked her to write my name on a piece of A4 paper and write below it "I NEED MY PATCHES!!!" and to put it on her desk so she won't forget to sort it out on Monday. As you can imagine that didn't go down too well so I probably won't get them until next year now :-)

    Between you, my wife and myself we seem to have all the base's covered. She had the sleep monitor overnight test which showed she had sleep apnea and had the same problems you had with the cpap machine. She couldn't use it either so they gave her overnight oxygen instead which worked. Unfortunately the sleep apnea diagnosis was incorrect. Her oxygen level was dropping dramatically overnight and unfortunately this has led to an eventual correct diagnosis of emphasema. She also has fibromyalgia and arthritis as well.

    You seem to be having a very rough time as well. It might be worth trying to get prescribed some sort of low dose morphine just to see if it works for you. As I mentioned in my last message I take MST (Morphine sulphate prolonged release tablets) and it did help when I took an extra tablet.

    I've just read the leaflet that comes with them and it says it also contains lactose and sunset yellow (E110). I'm wondering now if it could be one of those extra ingredients that helped my rls (I do a lot of straw clutching lol), but i'm going to ask my doctor tomorrow.

    Anyway, I've babbled on long enough. It's windy and raining here so I'll have some fun later at least.

    Once again, thank you for your reply,

    Kind regards,

    Steve.

  • Yes I do. I am fortunate to be under the care of Dr. Earley a leading neurologist from Johns Hopkins. He told me RLS is progressive and will spread as well as start earlier in the day as life goes on.

  • Hi, thanks for your reply. I have found a lot more information since posting my question and unfortunately he is 100% right. I have it 24hrs a day and in my arms as well. I have seen my neurologist very recently and I am now on the neuro patch which I started last night. He also said that the term rls should be changed because it is not limited to the legs.

  • Hi I have just started to get RLS in my arms which is driving mr mad seen my doc and I am now on the max of 4mgs of Ropinirole which is slowly calming it down. But now I am on the max dose what happens if the condition reoccurs ?

  • Hi Jonkil, I'm glad the increased dose of ropinirole is helping you. I was actually allowed to go to 6mg but after a short time it made everything a lot worse. I went back to my neurologist and he gave the neuro patch to try instead. I have only been on them for about 6 weeks and have already had my dose increased from 1mg to 2mg (the max is 3). I am having limited success with them at the moment, but as I have only been on the increased dose for 4 days i'm hoping they will work. They haven't taken the rls away, just brought the severity down a little bit.

    I have found that although my rls is quite severe, I am having more difficulty coping with it in my arms. I may sound as though I've lost my mind because my legs are worse than my arms, but the lesser feelings in my arms feel worse :-)

    Having just read that back only supports that the rls is making me lose my mind, but I hope you can understand how I tried to explain it. It just makes me feel as though the rls is everywhere and I feel more helpless.

    I sincerely hope that your ropinirole works for a long time to come.

  • a few years ago my arms started to act up,i could not belive it i was geting RLS in my arms to have it in my legs and arms at the same time is hell.

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