I cant take it anymore I want to chop my legs off! I am taking mirapex which helped for a year then I had to keep upping the dose.Now my

Legs start from noon.It has spread from into my arms.I tried tapering down the mirapex then stopping for 2 nights and my symptoms were soo so bad I had to give in and take tablets again.My life is rulef by restless legs people dont understand.I cant go out in the e enings as I have to pacd, I am exhausted and back pain as I cant get any rest.Someone please tell me you understand

[RLS247]

I totally understand and feel your pain. Please speak to your doc about other forms of meds. It sounds like you've augmented on mirapex which happened to me. Ask about opioids. Sounds strong but they are endorsed by docs for severe RLS and they work on the vast majority of us - hang in there. I know what 24 hour a day RLS feels like and you will find something that helps

[M4gill in reply to RLS247]

I truly wish this was true for everyone RLS247, I have lost count of the amount of different medications I have tried over the last 3 years and every single time I think "this is it, they have finally found the meds that are going to work for me" BANG! My symptoms reappear. A vicious circle, I am in dispair

[Hidden in reply to M4gill]

Thankyou M4gill I can feel for you I am just the same

[Hidden in reply to RLS247]

Yes, please ask your doctor for opioids!

I have a very severe RLS/WED and morphine was the only thing that helped me. After 13 years in a living hell I became pain free and I do sleep.

[Hidden in reply to Hidden]

Thankyou Swedish this gives me hope

[M4gill in reply to Hidden]

I totally understand why you take morphine for this horrible disease, I also have very severe RLS/WED but I'm too scared to take morphine, I am really trying to give my doctors the chance to find the right medication for me. Morphine will be an absolute last resort because I'm scared that this is a highly addictive drug

[Hidden in reply to M4gill]

M4gill, i have copied this info from rlshelp.org the doctor on that site is an expert on RLS. The info might help put your mind at ease, if you have to resort to opiates (morphine) (3) Analgesic (pain-killing) Medications - Opiates/Narcotics

These medications are very helpful for treating RLS. Many patients will get relief from this class of drugs. Many physicians have significant fears about patients getting addicted to these mainly narcotic derived drugs (derived from opium, hence the term opiates). This generally does not happen if the medications are used to just blunt the majority of the RLS symptoms, rather than increasing the dose to completely eradicate all symptoms and possibly "overshoot" using more drug than really needed. Intermittent use and drug holidays (using other medication in place of the narcotic for a few days) can often insure that no tolerance/dependence will occur. In patients who use the opiates daily and cannot stop them, keeping them at the lowest dose to relieve most of the symptoms should greatly reduce the chance of addiction. There are many patients who have been using these medications daily for years without problems. A recent study (Walters, A.S. et al, Long-term follow-up on restless legs syndrome patients treated with opioids. Mov Disord 2001;16:1105-1109) which found the narcotics to be very safe even when used for long -term use in RLS patients.

Constipation can also occur with this class of drugs. This may limit the use of this class of medication, but adding fiber (Metamucil, for example) may help this problem. Nausea can also be a significant problem and can be overcome by adding an anti-nausea pill before taking the opioid

[Hidden in reply to Hidden]

I have written here earlier that I have a spinal morphine pump since october. I love it! Low dose (0,96milligram) no side effects and no need to higher the dose because there is no addiction when the brain get the morphine this way.

[lorri214 in reply to Hidden]

The dr. you mentioned above A.S. Walters was my dr. He prescribed oxycodone for me without a problem. I put off taking it for the longest time until finally I caved in. I feel that it helps.

[Hidden in reply to RLS247]

ThankyouRLS247 for your encouraging words

[cicek]

I understand exactly how you feel!! Go back to your doctor please as there are lots of successful meds out there. I am on Requip XL 4mg (this is a slow release med). It has worked very well for me for six months now. Nothing is perfect and I still get symptoms from time to time but the relief has been immense. I agree with RLS247, it sounds like you are suffering augmentation on the Mirapex so try something else. Good luck!!

[Hidden in reply to cicek]

Thankyou cicek for your advice I didnt know other meds were availabke

[M4gill]

I totally understand how your feeling, I've suffered for 14 years now and was only diagnosed 3 years ago but the doctors still haven't found the right medication for me. I get prescribed one medication and it works ......for a few weeks and then my symptoms start to come back, and I think I may as well stop this medication but my symptoms are way worse than they ever were so I have to take the same pills until my doctor prescribes something else. And then the whole sorry vicious circle starts again. And NOBODY!!! Understands why I am exhausted all the time, and how this debilitating disease affects how I live my whole life. I now have no joy in my life and can't see a way out of this sorry mess. Frustrated doesn't even cover a fraction of how I feel.

[jigglylegs]

I can understand. I have been taking mirapex for a number of years. Please take the advice of others here and see your doctor. I have been experiencing a lot of leg pain as well as the creepy crawlies you are not alone so use the site for support while things are bad. I do hope things improve soon.

[Hidden in reply to jigglylegs]

Yhankyou jigglylegegs I am so glad I found this site

[Hidden]

Everyone on this forum completely understands. I agree with the others, go back to your doctor as soon as possible. The mirapex is causing augmentation, and then you tried to stop them, wow, that is enough to send you nuts. Your body has got used to the dopamine, and protested when you tried to stop the pills. There are other options for medication to take, most of us have had to try them all. I hope you find another one which will give you relief very soon.

[Hidden in reply to Hidden]

Thankyou Elisse I will def see my gp.best wishes

[Rubylane25]

I definitely understand as I have RLS in voth lwfs, up my back and in my arms. I take mirapex but never had the rebound affect with it. There are other drugs like Sinnemet and requip that maybe you could try. When I went off mirapex I was on fentanyl patch, starting at 12 mg patch then increased to 25 mg patch. I also take fentanyl for pain as I have a condition called reflex sympatheric dystrophy. However fentanyl does really help. You could even do a combination of mirapex and just the 12mg fentanyl patch. That also worked for me. Some people use gabapentin but it did nothing for my RLS.

Some people are afraid to use fentanyl because it is a sympathetic opiate but hell anything is better than the suffering, tiredness and fustration that we experience living with RLS! Good luck!

[Hidden in reply to Rubylane25]

Thankyou Rubylane good to know other options .

[Kaarina Administrator]

You are amongst others here that do understand and feel your pain. This is the best place to call in to get help and sympathy. Unless you suffer with this, in any shape or form, it would appear no one has a clue how debilitating/upsetting it can be.

Kaarina

[Hidden in reply to Kaarina]

Thankyou Kaarina your right it is impossible to explain to a non sufferer

[Hidden]

Thankyou to all of you I have never spoken to anyone who understands before its so good of you all to take the time.The strongest my gp will give me is tramadol.It helps to know that this often happens with mirapex and I am not going crazy! I have just had 3 hours sleep bliss! Best wishes to you all

[Kaarina Administrator in reply to Hidden]

I am so happy for you that you have had three hours of sleep. It makes all the difference, doesn't it? Do keep in touch.Please call in here when you need some TLC, advice, a rant or a chat.

Kaarina

[Hidden in reply to Hidden]

Alot of people use Tramadol for RLS, maybe that would be an option for you to try. It can also help when getting off the mirapex, which is a hard thing to do as you found out. Once you are off the mirapex, then the Tramdol should take over and give you relief. Have a chat with your doctor, i hope you have one that understands RLS and the meds which can be used. Anything you need to know, if we can help we will.

[Shoeinthree]

If I had a nickel for every time I said I want to chop my legs off I'd be rich by now,I have also been on the mirapex for awhile but it stopped working after awhile, I know your pain all to well I hope you find relief soon.

It is very hard for you get anyone to understand RLS unless they have it, I say to many if you could only try it for a day and see how debilitating it really is. It has also changed my life totally.

[Larryl]

I was on Mirapex for 12+ years. I always maintained the prescribed dose regardless- unless I felt I needed an extra boost. Then for one night only I would add 1/2 my prescribed dose only after I was sure things were not working. (purpose to get some rest - fatigue makes things escalate) Also found that I had to pay strict attention to my diet (no processed foods, no caffeine, alcohol or artificial sweeteners or highly sweetened foods especially after noon. - reasons for all of these - study on line.) Pay attention to your life style - try to eliminate stress - especially when RLS more persistent. Get all the sleep/rest you can during calm moments regardless of the time of the day. Close attention to your particular triggers - don't fight those warnings. Immediately switch to activity that seems to calm things even briefly. It's hard, but try to focus on being thankful for the moments of rest/sleep that you DO get. Try not to focus on your frustration, etc.

Having this condition is a journey - you will be the primary person to figure this out. Get a Dr who will listen to you - they don't understand this yet & can't know your body - only you can do that & it requires studying all you can study abt your body & all the research especially abt diets for other neurological conditions like Parkinsons, neuropathy, etc. I hear your exhaustion, frustration, etc., I am there also. You have a lot of company! Hopefully sometime in our lifetime a cure will be found but in the meantime it helps night by night not to let ourselves feel like victims.

[Hidden]

Thankyou shoeinthree for your reply I now know other people do understandbest wishes

[Hidden]

Thankyou larryl for your wise words I will take them on board

[cissie]

I know what you are going through I have had rls for 25 years I have it in my hands and arms as we'll I have been taking the highest dose of orpine role but still getting no rest I have now 2 weeks ago put on 150mg of morphine a day I don't like it but have no option I have tried everything

[Hidden in reply to cissie]

Hi cissie thankyou for your reply.You have to experience severe restless legs to realize what a dramatic effect it had on your life non sufferers have no idea.I have it also in my arms now.Do you find the morphine effective?

[cissie in reply to Hidden]

It helps but still up all night

[Hidden in reply to cissie]

Ok thanks and good luck in future

[moysie]

I have suffererd for 40 years and got so bad my doctor finally recommended me to a neuro surgeon. he has now told me it is not restless legs as the symptoms are too severe. I have just had an MRI scan and am also having an EG done and am waiting for the results. If your symptoms are more than just an annoying twitch in the legs may be worth your while to ask your GP to do the same for you. Ihave walked the floor at night and have actually fallen asleep standing up resulting in me falling over. It has had me in tears on numerous occasions. The only treatment that has worked for me most of the time is Pramipexole.

Good luck

[Pippins2 in reply to moysie]

Hi Moysie, whilst it is possible that you may have something else going on too I don't agree with your Neuro that the symptoms yout describe are too severe for RLS. Although for a lucky few RLS is just annoying twitch the vast majority that I have across (literally thousands ) are as badly affected as this and unfortunately pacing up and down all night and falling to sleep standing up are all too common. I have lost count of the times I have fallen to sleep walking and banged into walls etc. Every day I hear from RLS patients who do all of this not because there's anythingelse wrong but because they have severe RLS. Also your good response to the Pramipexole strongly points to RLS as it doesn't help other conditions (apart from Parkinson Desease in much higher doses ).Certainly get checked out but I just wanted to assure you that what you describe here is typical of RLS

Pipps x

[Pippins2]

Gosh Moysie I have just realised this was my very first post on here years ago. !!! I am happy to say that I am in a much better place today x

[Pippins2]

Moysie what dose of Pramipexole are you taking? You may be suffering from augmentation which was my problem when I wrote this post 3 years ago x

[Franklin123]

It sounds like how we all feel - sometimes worse than others. It is difficult to explain to non-sufferers but do stay on here - IT IS SO COMFORTING to know we are not alone. I take codeine and ropinirole and baclofen for cramps. Also top up with paracetamol most nights....... keep talking to us, let us know how you get on.