RLS

[connie50]

JUST COME BACK FROM SEEING MY GP ABOUT MY RLS TOLD HIM I THINK I HAVE AUGUMENTION (ON REPINAROLE FOR AGES 3MG ) DIDNT HAVE A CLUE WHAT I WAS TALKING ABOUT, LOOKED AT ME IN BEWILDERMENT GAVE ME ANTIDEPRESSANTS TOLD HIM I WASNT SLEEPING WHICH IM NOT, GETTING ME DOWN SO THINKS IM DEPRESSED I CANNOT SIT DOWN FOR 2MINS WHEN MY LEGS START 24/7 SO THATS WHY I THINK I HAVE AUGUMENTION THATS THE ONLY THING I CAN THINK OF

[Hidden]

Watch out, some of the antidepressant worsen the RLS! Have you tried to lowen your dose? Doctors all over the world just have to stop treat us like psykiatric patients, we have a neurological disease! Sorry, but I get so tired when I read about it.

[Hidden]

Oh connie, thats not good. Antidepressants are likely to make things worse for your RLS, aswell as the augmentation. What ones did he give you....?? You really need to take some info along with you when you go, info on augmentation, info on other meds which can be used and info on antidepressant can make RLS worse. Some times we have to educate our doctors, who do not know enough about RLS.

[nightdancer in reply to Hidden]

So many doctors automaticaly think if we are not sleeping it must be bcause we are depressed. When, in fact, we are depressed because we are NOT SLEEPING. (like the chicken or the leg thing) I never had an ounce of depression in me until I had gone a decade or more with horrid sleep and RLS. Trying to explain that to some doctors is way harder than it should be. Ask the doc how would he feel if he went night after night with fragmented sleep for years and years, had no social like to speak of, etc. That would be he sleeplessness/RLS causing the depression. Depression does not cause RLS, so be very careful of those antidepressants. If you tell us what he gave you, we can tell you right away if the ones to be used with great caution or at all. many of us have studied RLS, out of necessity, for decades. The first thing I ever put into my first search engine was "restless legs" and I found my yahoo support group that I now supervise......1280 people from 33 countries, so they are an education to me for sure!

[connie50 in reply to nightdancer]

thanks night dancer I feel absolutely knackered this morning walking round like a zombie wont be taking any more of the tablets (mirazapine15mg) I did read somewhere that taking these drugs are not good for you (I will try and reduce my repinarole on 3mg) to see if that will help going to see a neuro surgeon next week hope he will give me some answers

[connie50 in reply to Hidden]

hi elisse the drug is called mirtazapine15mg I feel absolutely shocking this morning going back to bed hope my legs will let me sleep for a little anyway

[Hidden in reply to connie50]

Hi me again, on rlshelp.org that antidepressant you have been given is supposed to be RLS friendly... I have just seen it on there. But, the real problem here is, you need to get off the Ropinerole and try something else. Reducing the Ropinerole will be hard to do, your body has got used to the dopamine and your RLS will act up, you need help with reducing it. Some people are given Tramadol by their doctor to help with the withdrawals. I agree with you, you doctor is useless.

[nightdancer]

Instead of antidepressants (which one did he give you?), he should be slowly lowering your Ropinerole. SSRI's and Tricyclics are the antidepressant classes that will almost certainly make your RLS worse, so that is no solution, depending on what anti-d he gave you. We could help more if you gave us the name of the new med. Augmentation is real. all the doctor has to do is to go to the Requip web site, and they even talk about augmentation issues, or rlshelp.org on the treatment page to read about all these issues. Good luck!

[connie50 in reply to nightdancer]

hi nightdancer its me again I was like a zombie this morning didn't no where I was I wish you could send me something to print of so I can take it to show my GP because I don't think he has a clue what RLS is if you could send me or direct me in the right direction so I could print something of to show him (I am not depressed) like he says I am just fed up to the back teeth with this terrible condition & trying to get through to my GP its like hitting my head against a brick wall very sorry for my moaning.

[Hidden in reply to connie50]

Hey Connie, moan away, hun, look at this website, rlshelp.org this is the one i always point people to for good advise. You can print off info from there, on the meds and alot more. Look at the treatment page. I have answered you incase nightdancer doesnt get on here today. Oh, i see nightdancer has already giving you the same website....

[connie50 in reply to Hidden]

thanks elisse just printed something of cant remember what web site it was but it relates to RLS in older people (like myself) will show this to my GP next time I go visit its very good & in a language I understand thanks again for being here CONNIE

[nightdancer in reply to connie50]

rls.org has free leaflets you can send for, even if you are in the UK. One is specifically made for how to talk to your doctor about RLS. health.com is a web site that is owned by time, Inc. and it has an excellent RLs section, even if I do say so myself. I flew to New York city when they were setting up the RLs section, and there are my videos to watch, plus others. Lots of the patient stories are members from my international group so I can vouch for all of them. We spent a lot of time wit this web site helpng them get accurate information up. and, really did our best to tell how patients are not understood, etc, by doctors who have no inclination to learn anything new. a neurologist is who you should be seeing, since RLS is neurological in nature. The web site Elisse put up is the BEST one. The doctor that runs that web site is an internationally known RLS expert. Can;t recommend it enough. I know it is different in the UK when you need to change doctors or see a specialist, but you need to push for good treatment. Doctors who will not admit that they do not know something are the worst to eal with. so, they give you the wrong meds, etc, hoping to get rid of your complaints. You have to be strong, make your point, and get it across to him he is not treating you correctly, so he should be sending to you a doctor who DOES know about RLS. And, like I said that would most likely be a neurlogist or a sleep medicine doctor. These 3 web sites that Elisse and I posted are absolutley the best, easiest to understand and so on. I hqave been doing this since 1996, so those web sites are at the very top of my list. Tell your doctor to take 3 minutes and "google" RLS and get some knowledge. The more knowledge that YOU have, the more power you have over the RLS. The doctor works for his patients and we should never be afraid to ask for a second opinion. If your doctor gets insulted by that, then he is not a good doctor. Period. That is my experience and thousands of others that have passed my way over the years. i have severe RLS, and a gem of a doctor (I am in the US), but it took me over a decade to assemble a good TEAM of doctors. sleeplessness and RLS come first, depression comes second as a direct result of no sleep and feeling like you have no control over your body. I am just getting over back surgery, so am working my way back to the internet. sitting time is at a premium for my back. I cannot stress enough, make your point that you could not sleep first, and you were not depressed untl you could not sleep or lay still. doctors that throw antide[ressants around like candy drive me nuts. I do take some myself for other reasons that have nothing to do with RLS, although one of them does help induce sleep a bit. Never be afraid of your doctor or the fact that you have to speak up and stand up for yourself. yes, it is exhausting, but necessary. Good Luck. Will check back later.

[connie50 in reply to nightdancer]

thank you ever so much you are a caring person who understands what im going through I go to see a neurologist next week(had to wait 8mths)hope he can help me

[ookla]

So sorry to hear that. None of the dopamine agonists worked for me and all of them caused augmentation. When that happened, the only thing that got things back to "normal" was tramadol. I hope you feel better soon.

[connie50 in reply to ookla]

its a nightmare when nothing works you just don't no which way to turn

[Rubylane25]

As hard as it is sometimes if you take about a two week break from the drugs they will start working again. That used yo happen to me on Sinnemet. I would take a break an then start over and the drug would again work. In the interim you coul try gabapentin around 2800 mg per day. It doesn't seem to have a lot of side affects and may help for short term. From evrrything I read on here I believe Canadian doctors have a better understanding of RLS. Good luck. I have been thru those sleepless nights walking the halls.

[connie50 in reply to Rubylane25]

that's a lot harder than you think I've tried literary everything that you can think of all the dopamine drugs but I cannot find anything that suits me

[Rubylane25 in reply to connie50]

I agree about how hard it is. I spent three months recently on nothing and I thought I would have a nervous breakdown. I hate to mention narcotics because they are something hard to break but I am on the fentanyl patch slow release 25 mg and it really helped me with RLS. However GP's don't seem to know much so if you can get a good neurologist that may help. Not sure if you have sleep disorder clinics available but we have them here and that may be another option. You have to stay overnight and they put electrodes on you to monitor your sleep and movements.

[connie50 in reply to Rubylane25]

thanks but I have never heard of fentanyl patches is this patch available in GB that's where I'm from

[Rubylane25 in reply to connie50]

I did a little research on google and it came up that fentanyl patches are available in the U.K. Here in Canada it has to be okayed by our provincial government in order to be covered under our health care plan. My neurologist told me that it was discovered by chance that people wo have severe pain which it is normally given for(cancer, dystrophy etc) they discovered that people who had severe pain that took fentantyl and also had had RLS it helped not only with the pain but the RLS and it also helps you sleep. I think if I were you I would see a good neurologist and give it a try. I have been on it for quite awhile with no side affects and my friend who has fibro miralgia has used it for years and it changed his life for the better. I hope you can get it and give it a try. As I have mentioned on here before I have had cancer and I have a chronic pain condition called reflex sympathetic dystrophy and RLS. By far I would rather have my first two conditions than have and live with RLS. Those that don't have it just don't understand how terrible it is to live with. Because it is chronic and not a terminal disease not much effort is put into finding out more about it.

[connie50 in reply to Rubylane25]

im going to see a neuro next week I will mention it to him thanks will let you no how I get on

[Rubylane25 in reply to connie50]

Good to hear you are seeing a neurologist. I started on 12mg patch for a few weeks maybe a month and then 25 mg and have been on 25 since. It is a good way to start so your body gets used to the narcotic.

Sure hope it works!

[connie50 in reply to Rubylane25]

hi you say 12mg patch what patch? are you talking about the neuro patch if so tried it no good for me like I said literary tried everything like nightdancer said I don't think the dopamine drugs are going to work for me will wait and see what the neuro has to say I have started to reduce the repinarole been on 2mg the last couple of days trying to get it down to 1 a day but having great difficulty my legs wont keep still 24/7 taking co-codamol at night but nothing seems to be working so up all night walking pacing the floor (bet this sounds familiar)

[Rubylane25 in reply to connie50]

No I meant the fentanyl patch. Fentanyl is not a typical treatment for RLS? It is a narcotic or more precisely a synthetic opiate. It comes in 12, 25 and maybe even 50mg patches. I started with 12, moved up to 25 and have stayed on 25.

[connie50 in reply to Rubylane25]

thanks I was at cross purposes I will ask the neuro about it when I go next week

[Buzzyleg in reply to connie50]

Hi,

I found for a while if I took soluble co coda moleat nightbefore I wentto sleep this would help with the intensity of the sensations (co coda mol tablets didn't workat all) Aftera while though I found myself upping the dosage when my bodystarted to get usedto this med and hence it lost its effectiveness . Priorto this I have been " guinea pigged " on vtaboos tablets before they had officially come ontothe Market ie Gabapentine several years backbut to no availand it was strangely only the sol co coda mol that helped. In the last 2 years I havebeenon Tramadol and Amitryptiline . I know a lot of people will say that amitryptaline should make the symptoms worse . I triedamitryptaline years ago and didnt wor. But it certainly doesnow.in fact if I run out of the amitryptaline the sensations quickly come backwith a vengence. At nightonly I take 100mg of tramadol and 20mg of Amitryptiline .

This medication combination works for me in allowing me to get to sleep...Although my sensations in my left leg are 24/7 when I am over tired the same sensations go into my right leg and arms ....my partner though has noticed in recent times that whilst I am asleep my arm has now started to spasm /flinch which is causing them not to sleep if they are to close to me so it looks like my overall symptoms are worsening.

I believe this to be hereditary . My father had similar sensations in his levers but doctors back then said he had "furred" arteries due to his smoking. Well I don't smoke or drink and I have it plus my son started complaining of similar symptoms when he was just into his teens , he is now 20 and still has it although milder than myself thankfully....

[nightdancer in reply to connie50]

When you say "literally everything" do you mean just RLS approved drugs or others also? Like the pain meds. No RLs drug works for me. I have very bad pain issues, so we discovered that narcotic pain meds are my magic bullet when it comes to RLS, and nothing else wil work. I have tried everything on oand off label. Can you take codiene? I know you guys can buy that over the counter in some capacity in the UK. wish we could here.

[m1946]

I feel for you. However i would stress you need to see a NHS neurologist who will undoubtedly be aware of the problem. That is the route i took and with a mere 1.00mg of Ropinirole i enjoy sound sleep! You will have to shout at your GP for a referral!!!!

[connie50 in reply to m1946]

that's what I started of on 1mg then I had to go up because it wasn't working anymore been to see a neuro she didn't understand so she's referred me to see another (go next week) if I can last that long

[m1946 in reply to connie50]

Hi Connie. How long were you on 1mg and then what dosage were you on and for how long!! Sorry about the inquisition but it will help me to plan - perhaps!!