End of my tether with RLS

[Sheelaghj]

Hi all! Here I am again, needing support and advice! I have such a long RLS history that it's difficult to put this in a nutshell, but this is my present situation: since moving house last year I had to change my GP which was unfortunate, as I had been lucky enough to have a GP who was both knowledgeable and understanding about my RLS. I now have a GP who has no knowledge at all, and last year, her mission was to drastically reduce my dose of Oxycodone which had been successfully controlling my symptoms, alongside a small dose of Pramipexole, for many years. It was suggested that I tried the Rotigotine patch, which apparently had less problems with augmentation, and wean off the Oxycodone and Pramipexole. In short, I didn't feel very well on the patches and also, they didn't seem to be improving my symptoms, certainly not to the extent that I could come off the Oxycodone. So then it was decided that I should come off the patches( which I was reluctant to use in the first place, because of the augmentation issue) which is where I am now. I have been off them for about 6 weeks now and my symptoms have gone completely off the scale!! They are worse than at any other point in the last 15 years, especially at night. Some nights I go to sleep and wake up again after about 20 minutes!! It's just making me want to end it all!! Even the Oxycodone doesn't seem to be working effectively any more. I am Desperate!! Is this normal when coming off Rotigotine patches and will it settle down eventually? I have now been told to try Gabapentin at night as the GP is still keen to get me off the opiates, which are the only drugs that seem to help my symptoms. I have told her on many occasions, that I am a nurse and have never taken more of the opiates than I needed to control my symptoms, and am certainly not some sort of addict. I have been on the same dose for years and not been taking more and more of them which would have been a sign of addiction. I am so depressed and am really struggling to carry on. My whole life has become a tiny space which is controlled on a daily basis by managing my symptoms. I hardly go out anywhere and it is affecting my relationships with my family and friends. Oh, and the Gabapentin isn't helping at all- so what now?? Sorry this has been such a lengthy message! Would be very grateful for any advice on the Rotigotine patch issue and anything else that might help!! Thanks so much.xx

[Hidden]

Sheelaghj my heart goes out to you - to loose a good GP is like loosing a limb!

Unfortunately these poorly educated people crusade against opiates having never taken the time to fully understand them. Ask her the difference between addiction and dependence and at best she will stutter through the same definition for both.

Ask her to review your notes from the previous GP and ask why she thinks they weren't doing their job properly. Ask her why when through your last GP and your knowledge you had the RLS symptoms under control was she not happy with it - is you not using opiates more important than your well being. Don't raise your voice, ask the questions and WRITE her answers down - it would be vital to know.

Educate yourself about addiction and dependence and be able to explain how people can be dependant on medications (diabetics and insulin, etc) and not addicted and that the symptoms of RLS are MUCH more damaging that opiate use. Explain that NICE guidelines state Targinact which contains Oxycodone so why does she feel the need to go against the accepted guidelines.

A good Dr with a motivate pt will have no bother keeping a good lid on opiate use - it is lazy and ignorant to try and do away with them.

I hope things get better soon.

[involuntarydancer in reply to Hidden]

I am fuming, reading of your experiences. It sounds like your GP requires robust management. Writing down the answers as Raffs suggests - in front of her - is a great idea. Let her get one whiff of a professional negligence suit (preferably without overtly threatening it) and she may discover an urge to improve her knowledge and understanding.

In addition to Raffs' excellent suggestions, I would be inclined to download the study concluded about a year ago that showed a marked link between rls and suicide

( webmd.com/brain/restless-le... ) and bring it in to her. Tell her that you feel exactly like ending it all and that you are now convinced that there is a real risk of this. You need an effective treatment NOW.

While she is on the back foot, you might want to suggest temgesic (buprenorphine) rather than oxycontin. Many people on here seem to find it more effective for their rls and with fewer side effects. Also, some GPs seem to prefer it to oxy.

By the way, your experiences on the rotigotine (neupro) patch mirror regular accounts on here. While the patches work well for some, there are many who (1) find them less effective than other dopamine agonists and/or (2) cannot continue taking them because they cause an unbearable rash or other side effects (I found both). Furthermore, the evidence that they have a lower risk of augmentation is weak at best and experts now consider that this may simply be because the slow release nature of the drug masks the onset of augmentation and only delays the presentation rather than the onset of the condition.

I also second everything Joolsg says about gabapentin/pregabalin. Again, many sufferers complain that the side effects render them unacceptable and/or find that they have little or no impact. That's not to say that it isn't worth trying them but they typically take weeks to get to work on symptoms and you need something that will work soon.

[Joolsg]

Oh Sheelaghj,

How frustrating. The campaign to get people off opioids for pain is having a massive, negative impact on people with RLS. I found gabapentin did nothing for me & pregabalin eventually caused augmentation ( it is mentioned in a 2015 study). Dr Buchfuhrer believes Gabapentin and pregabalin aren’t effective for those who have suffered augmentation on DAs.

Withdrawal can last months- it took me 6 months after stopping Ropinirole to find a combination of meds that gave me adequate cover.

I can only suggest you show your GP ‘evidence based’ research that shows low dose opioids work well for RLS.

Link attached.

mcusercontent.com/068feaf31...

[Sheelaghj in reply to Joolsg]

Hi Jules! Thank you for your advice! Also how nice to hear from you- we seem to have been exchanging messages for years- although I did have quite a long break from the site when my RLS was vaguely under control. Your advice is always kind and knowledgeable and you must have helped loads of people over the years. Are you based in the uk? I know lots of people on the site are from other countries. I just wanted to ask you- do you actually know anyone amongst your friends and relations who has RLS? Apparently there are 1in 10 people with it, but I don't know who they are, as I don't know anyone who suffers from this awful disease. Also, you would think that if that statistic was correct then it would be treated like a mainstream neurological illness and given serious consideration. It's so upsetting and frustrating that is not taken more seriously. It has such a detrimental affect on ones life. I know it has absolutely ruined mine. Thanks again! Xx

[Joolsg in reply to Sheelaghj]

You’re right Sheelagh- if it affects 10% we should all know at least one or two local friends who have it. I’ve never met anyone else with it! No one in my family has it and none of my friends.

My last GP said she had it but I guarantee she didn’t. She described it as aches & pains that come with old age. It’s clear she was confusing it with mild arthritis!

I’m in London & I’ve even asked the pharmacist if anyone else uses dopamine agonists when they were in short supply 4/5 years ago & the large branch of Boots only had one other person on DAs which made me think there weren’t many other RLS sufferers.

I do know of a friend of a friend who has extremely mild RLS. They get it about twice a year. If only!

Hope you are well and manage to find a sensible GP who will continue your prescription of Oxy.

My surgery always rely on whatever my MS neurologist or RLS neurologist advise & my MS neurologist is happy to allow opioids. It may be worthwhile seeing a neurologist just so they confirm the use of Oxy.

J

[involuntarydancer in reply to Joolsg]

I have the same experience - my pharmacist doesn’t know anyone else with it and neither do I. My GP says he has a few very elderly patients with it but not many. I have one cousin who gets it very mildly and intermittently. His face is gratifyingly horrified whenever the subject comes up and he is deeply sympathetic/empathetic about my rls. He’s the only person I know who has any understanding of the hell of it apart from my perennially sympathetic children.

Returning from that detour ... this leads me to suspect that the numbers are not actually as high as one in ten - or even one in twenty.

[Hidden]

So sorry to hear this.

The others have given some very good suggestions.

I would agree as raffs says that it would be a good idea to check if your previous GP has sent copies of your record to your new GP. They are supposed to do this. You should be able to get access to this record online.

I changed GPs in 2012 and I now have access to my current GPs record online and through that to my entire record from my previous GP.

Unfortunately, targinact, which is still, I believe licensed for RLS is not mentioned in the NICE guidelines for GPs, only codeine.

See this link NICE prescribing guide

bnf.nice.org.uk/drug/oxycod...

It has been banned for chronic pain recently, but chronic pain should not be confused with RLS.

In the meantime, although gabapentin isn't ideal, you have to be aware that it can take several weeks to work and you do need to have a sufficient dose.

See this link NICE prescribing guide

cks.nice.org.uk/topics/rest...

It's worth a try until you can sort out the opioid. I suffered augmentation for years and replaced pramipexole with gabapentin : it works fine for me.

[Ranjits]

Your story is matching with mine I had Rls nearly 40 years in young age iron infusion used to help me . I but in fifties my Rls was bad again doc started me on premipoxle first with low dose then 0.88 mg two tablets it did work for those years but this year it stop working then I took Gabapentin it didn’t work Rotingine patchs small dose one mg didn’t quite work but it give me skin reactions stop taking that now doc give me Pregabalin it’s not working I keep taking cocodamol which I have constipation with it didn’t sleep last two nights avoiding cocodamol now I don’t know what to do very depress now any suggestions please?

[Jumpey in reply to Ranjits]

I'm sad you are feeling this way and empathise. Is your ferritin level still over 100? I couldn't tolerate pregabalin so don't have experience of that but do know that the dose needs to be high to be effective .Maybe write a separate post and ask for help with the dise?The amount of codeine in cocodamol is unlikely to control your symptoms but if it is you could take it alongside medication for constipation. I used to take 30mg of codeine which worked for a good while.Now I am on tramadol which works well.You could ask your doctor for an opioid. But you need to be aware they cause constipation. You could email Dr.Buchfuhrer for his advice.Good luck.x

[Ranjits in reply to Jumpey]

I got hospital appointment on 3rd of February year gone they haven’t check my ferritin level I think I w we ll email Dr Buchfuhrer

[Covenant1962 in reply to Jumpey]

Hi Jumpey, I note you are taking Tramadol. I have been talking 50mg before sleeping and it works well. Can you share how you are using Tramadol? Do you know if there are any clinical issues in using this over a long term?

[Jumpey in reply to Covenant1962]

Hi.I take 50mg too about an hour before bed.I don't know about the longterm implications exept that it stops working for me sometimes due to tolerance of the drug.When this happens I take a month's drug holiday and it kicks back in again. I take it 6 days a week only to avoid physical dependence. This means that when I have to stop for a month I don't get withdrawal symptoms .I know that some people have experienced augmentation on tramadol. Although it is not common like with dopamine agonists .I have not experienced it and I have been using it about 5 years now.Good luck. X

[Covenant1962 in reply to Jumpey]

Many thanks Jumpey, this is helpful. Do you take anything when in a Tramadol free month?

[Jumpey in reply to Covenant1962]

I was using Kratom but it gave me oesophagal pain after a while. Others use it without problems though.I have just gritted my teeth and got through it since. I'm about to get some medical cannibis to try.x

[Covenant1962 in reply to Jumpey]

Thanks Jumpey, good luck with the canabis

[Jumpey]

I am so.sorry you are in this position. As well as the good advice eyou have been given if all else fails could you change your doctor?You could also email Dr. B for his advice and take the email to your doctor.Good luck and hang on in there. Things will get better.x

[Spurdog1]

Sheelaghj.I want you to know you are not alone in this world. I have not had the experiences you have had with different drugs. That does not mean that I cannot "virtually hug you (((())))". I have shielded for 10 months now, unlike ppl who have had to go off to work, so I empathise on that front at least.

People are moaning of 7 weeks+ lockdown, try since March 10th (when I started). I think my advice would not really count as I have not had your experience. However people take doctors advice. You can stand up to them. Personally i'd go back to before you moved. Tell the doc you tried his/her way, but you want to go back onto something you were comfortable and safe with. My previous doctor was brilliant, so i empathise with that one as well. take care. You can dm if you wish

[RLSofManyYears]

I'm so sorry to hear how things are with you. But hang in there, although I've not had the same meds as you I've had the sleepless nights, the continual jumping legs/body, the continual tiredness and utter frustration with RLS but am now on a set of meds that allows me to sleep (yippee!). However whilst this works for me you do need to find what works for you. Three months ago, following the experiences of folk on this site, I asked my GP about Temgesic and she willingly gave me a prescription. I had come off DAs and was literally not sleeping (it was awful) and the Temgesic finally was what worked for me. I'm also on 300mg Pregabalin but the thing that impacted my RLS was the Temgesic.

When I was first diagnosed with RLS then it was the DAs that I took and they worked for several years until augmentation hit me - dreadful. Any DA that you come off of must be done gradually otherwise, as folk have found, the side-effects can be dreadful.

I've always found the comments from Jools and Manerva to be good, sound advice.

[WideBody]

I am so sorry, I know it’s tough now. It does get better. It also takes time. I don’t think we talk about the mental struggles DA drugs cause. Yes, I know lack of sleep is also a major factor. It’s been three years now since I have had a DA drug and I am still trying to get my old self back.

Take as many naps as you can. I have found if I get overtired (your laughing right?), it triggers my RLS.

Before your GP gave you DA drugs, did they check your ferritin levels? It’s a test that should be done in the morning and fasted. Is yours genetic?

A lot of us have already gotten through this, you can too. Hang in there.

[involuntarydancer in reply to WideBody]

Yes; tiredness being a trigger has to be one of the cruelest ironies.

[Gingerisacat1]

It sounds like you may need to shop around for a new doctor. Trying to educate your current doctor may be an exercise in futility. Can you meet with your previous doctor on a secure on line visit? I do that with mine who is in another city, I am more confident with his med. management skills then the doctor go to in my town for other basics.

[Felicity21]

Hi Sheelagh, so sorry to hear your story. It sounds dreadful what you are going through and I wonder whether you can get yourself referred to a Neurologist. It struck me that your combination of a small dose of Pramiprexole and Oxycodone worked well for you. It confirms for me that maybe Combination Therapy (Dopamine Agonist with an Opioid) is the way forward for RLS sufferers, rather than coming off DA's and having to go on higher dose Opioids. Please could you tell me what your dose of both meds was. I am on 0.28 mg of Prolonged Release Mirapex (a DA) and 2 co-dydramol (10/500) each night and together with 0.5 mg of Clonazepam I sleep like a baby at night. Take care.

[Rlssucks1]

I used to stay up all night with RLS but then I researched the drugs I was taking and found that some contained caffeine. I called my doctor to switch to something without caffeine. I also found that reducing other caffeine products (coffee, chocolate, etc) and eat low sodium foods and no/low sugar foods/drinks helped tremendously.

[Sshifflett2]

My sleep dr said klonipin suppose to work mirapex is a nightmare drug for me gapapentin dont work anymore it majes the symptoms worse.one thing i have have learn is caffene, sugar and carbs also flares it up. So i amhoping the klonipin works once they get my sleep study back