Back to square one...an update.

[miaperson]

Hi...I recently posted about how I had left out certain foods and items from my diet and had enjoyed up to 5 hours of sleep a night for around a week (Oh,the joy of a nights sleep) but since then I have suffered horribly with the usual leg and arm kicking and twitching etc...I had thought I had found the trigger for my symptoms but the RLS has,as always,found a way of reasserting itself and although I`ve stuck to my diet I have now also been having odd sensations in my arms and chest during the day and along with the night kicks I`ve been having thousand miles an hour thoughts and have had virtually no sleep for weeks again...I`m going back to the doctor as soon as I can,which will hopefully be sometime next week...one of the questions I have regarding Ropinirole is to ask you if it is addictive ? ...I`ve read several times here how people experience withdrawals when coming off Ropinirole (for whatever reasons) and are prescribed opiates for the withdrawals...seems strange to me how it is known thast opiates will stop symptoms yet doctors are reluctant to prescribe them...I`m almost off of my own opiate substitute (Buprenorphine) and have told here how a certain dose stops all my6 RLS symptoms...I am minded to ask to go back to the dose that I know stops it...any thoughts would be appreciated...thanks all,Steve.

[Spudellen]

Apart from everything else, the racing thoughts are horrible. . one cannot hold on to a thought for any longer than a split second. It happened to me right after I had a 32 hour labour and difficult birth and what you are experiencing maybe from exhaustion or medications. I feel very sorry for you plight ...you are having a double whammy me thinks.

[miaperson in reply to Spudellen]

Hi SpudEllen...thanks for replying...at the moment I think I`m also suffering some withdrawal symptoms from my buprenorphine dose being cut in half along with the return of the RLS symptoms...Steve.

[Spudellen in reply to miaperson]

I went off Norspan patch too quickly and not only had withdrawal but over the top RLS.

[Hidden]

Don't mistake dependence for addiction. If you have been taking a drug for a long time or to treat a condition you are/can be dependant on it.

I am dependent on opioids and the Neupro patch to keep my pain and RLS under control. I will suffer withdrawals on stopping the drugs as my body has changed to accommodate these drugs over time.

I am not addicted to these dugs as if I so desired I can stop and will not crave the drugs, I will still have withdrawals but not the craving, (although I may want the drug to alleviate the pain/RLS).

I had been taking Tramadol for eight years - I was dependent on it it kept my pain at bay and the legs at ease. My body had become accustomed to the Tramadol and when I decided to stop I had terrible withdrawal symptoms. I stuck it out and stayed off it. As I wasn't addicted to the drug I was able to stop with no cravings or desire to use the drug although my pain and RLS were terrible. I eventually got the Neupro patch and another drug to help treat the conditions the Tramadol was helping.

Hopefully that explains the difference in dependence and addiction.

Sounds too like you are getting augmentation - the symptoms are getting worse - you will need to see your Dr and look about reducing and changing your medication.

Good luck.

[miaperson in reply to Hidden]

Thanks or the reply raffs and making a good point between addiction and dependence.

Steve.

[Hidden]

Sorry the diet didnt work for long. I have been seeing many posts on other groups i belong to relating to diets, all different from the next one. I wish it was the answer to getting rid of RLS permantly. I agree with everything that raffs has said in his comment to you.

[miaperson in reply to Hidden]

Hi Elisse...yes,it was good while it lasted for almost a whole week although even during that week I still had little or no sleep a couple of nights...if only it was as simple as diet...Steve.

[kelene]

Hi Steve,

RLS for many people (I have read and experienced myself) is simply low grade systemic inflammation...whether that be cause by an injury , or virus, or Leaky Gut Syndrome. Taking out the "trigger foods" (foods that are known to be inflammatory and/or foods that you are reacting to because of Leaky Gut Syndrome) is huge and the hardest part. Poor sleep causes inflammation (I know..vicious cycle right?) Meds can mess with this balance too. Daily moderate exercise (not at night) can help reduce inflammation. Really important though is to take a close look at your ratio of Omega 6 to 3. Our modern diets are hugely out of whack in this regard. Check out the site: huffingtonpost.com/leo-gall.... His site is the simplest I have read, although it is primarily about Leaky Gut Syndrome you will find he has also written about the ill effects of medication as well. You will notice that he recommends an anit-inflammatory diet. Google that and "systemic inflammation" and I am certain you will find some answers. Good luck and keep us posted.

Kelene

[miaperson in reply to kelene]

Hi Kelene...thanks for your reply...I`ll check out the links and have a read...after a nightmarish night with legs and arms kicking worse than ever before I managed to get to sleep (after 4 days/nights) at 9am and slept until 3pm today...I have upped my dosage of Ropinirole to 3 tabs now and hope that will help a little...Steve.

[ookla]

Have you heard the "augmentation" speech yet? Whenever I hear someone say "I had to up my dose of dopamine agonist," it sounds to me like "my dopamine agonist is causing augmentation and it's time to switch to an opioid/opiate." IMHO, increasing ropinirole is just going to keep making your symptoms worse.

[miaperson in reply to ookla]

Hi ookla...yes I have read about augmentation...today I went back to the doctor after phoning them last night pretty much in desperation and received a call back where the doctor said I would be helped today...well,what an utter waste of time and a journey today`s visit has been...I was told to up my dose of Ropinirole to as much as 3mg if I wanted...when I said that the current thinking was that 1mg is a maximum he still didn`t really listen and to be honest I just literally got up and left...I will return to see MY own doctor or at least one that knows me and has time to actually listen...I`m rather despondent at present and feeling sorry for myself and considering going to see a person I know who has something that will "help me sleep" ,even if it is only for one night...not the right route I suppose but I can`t take much more of the relentless sleepless nights...even ONE night will be a huge benefit.

[ookla in reply to miaperson]

Sorry to hear the doc appointment wasn't productive. I hope you're able to find something that works for you soon. I've given up.

[miaperson in reply to ookla]

Thanks...I`m seeing my hospital doctor this coming Monday and will discuss putting my buprenorphine back up to the dose I know controls the RLS symptoms I have...I have found that a certain dose is effective for me but against this is the fact that I want to come to the end of this particular treatment ( opiate addiction after morphine treatment during hospital admission for burns in a fire) ...so I am in a dilemma of continuing with buprenorphine or being treated (by whatever pills ) via the GP surgery...one addiction swapped for a medication that has worse side effects and is as difficult to come off as opiates...I will take one day at a time and as yet have not been to visit my friend with the "remedy for sleepless nights".

[miaperson in reply to miaperson]

Well...I made it through the night without succumbing to the temptation of any "sleep remedy" visits to the friend...was awake for most of the night but without spasms aside from about 30 minutes of left arm sensations...finally slept from around 5.30am until waking at 9.30am...I feel much better after this sleep...4 hours is about the maximum I`ve had for a long time...day by day,minute by minute is how I`m progressing at the moment...xx

[Roubiliac]

I am currently going through hell trying to come off buprenorphine. Despite getting it down to 0.1mg since I stopped completely two weeks ago I have not had a night’s sleep. I have dreadful RLS that continues until dawn when, for some reason as the sun comes up it settles enough to let me nod off. I am totally exhausted and almost at the end of my tether.

So beware buprenorphine!