I thought that I would leave you all in peace for a while but I had a terrible day yesterday with the Buprenorphine patch itching my skin and then, last, night the RLS came back full force and I haven't slept. It was the 5th day of the patch so I assume it had worn off. I have a new patch today and feeling a bit better. Just exhausted though. Our Pain Clinic have , absolutely, refused to give me the Buprenorphine tablet's and have written to my Dr. recommending Tramadol, which I can't take, Tapentadol or Morphine Sulphate. I don't know anything about the last 2 and wondered whether anybody had tried either and how they have affected RLS . I am so nervous about changing from the Buprenorphine patch to other medication and last night was just awful. Very depressed today. Thank you all for your patience.
Refused Buprenorphine tablet's. - Restless Legs Syn...
Refused Buprenorphine tablet's.
I am furious on your behalf. The patches clearly do NOT last more than 4 days. Pills are highly effective. Why they will give a patch but not pills is illogical.It is cruel and barbaric to deny safe, effective treatment.
Thank you Jools. My leg's were out of control again last night and when that happens my vertebral fracture's get so painful. It's 2.30 p.m. and I wanted to try to go for a little walk but have had to come back to bed because I feel so ill. I don't understand their logic either. My Dr. is on holiday....isn't he lucky .....so I have to wait till the 15th before I can speak to him....by phone, of course! I'm extremely depressed which is not like me because I'm a fighter but I feel like giving up. Thank you again Jools. You are amazing and have been so kind to me . Take care please. xx
I am a 77 year old lady and have had a Bupernorphine patch fo a long time ,I used to suffer from itching the doctor gave me Epimax cream to rub in where the patch was placed for one hour followed by a small amount of Betnovate leave for 20 minutes Pat dry with a tissue and apply it really works for me .
Thank you for telling me about that. I will speak to my Dr. ....again....and see whether he will allow that ! I am having a mammoth battle with the medic's here, in Scotland and I am SO upset with them. They don't have a clue about RLS and despite giving them information. They are just not interested. Thanks again. Take care.
You can get it from simpleonlinepharmacy.co.uk/...
Thank you. I will go and have a look just now. I hope that you are alright. Take care.
I'm so sorry to hear of your suffering. It can be intense and terribly distressing to say the least. I suffered for a long time before my doctor helped me, she always played it down..Now I'm on methadone and doing ok. I'm not in the UK so my situation doesn't apply for you but please know you're in my thoughts. I hope you get good help soon.
Thank you so much. It helps to know that people here really understand how awful this is. I managed to get a bit of sleep last night so the new patch seems to be kicking in. The trouble is that I'm so scared to try different medication and if they would give me the Buprenorphine tablet's then , at least I know that Buprenorphine works . I am so angry and depressed and will never understand the Pain Clinic's logic.Please take care. Best wishes, Danni
I am so sorry to hear this Danni. It is rotten for you. I simply cannot understand why you can have the patch & not the pills.
Dear Danni,
I am so sorry to hear how much needless suffering you are experiencing. I live in Brasil where only the Buprenorphine patch is available. I had also asked for tablets when my 10 mg patch was not doing the job. I was told by my neurologist that only the patch is available here because it is more difficult to abuse. Whether that is the reason tablets are not available I am not sure. If it is, it's just another byproduct of the opioid hysteria around the world. What my doctor did do was increase the strength of my patch to 20 mg. which has helped. Unfortunately, like you, I have had the same experience that you are having; after 4 days RLS symptoms would breakthrough. My neurologist then agreed to allow me to change the patch every 5 days. So now I do well for 3 days. The last 2 I just have to tough it out. I am lucky I don't have an issue with itching.
In the scheme of things the Buprenorphine patch has changed my life so I will stay the course. Day 4 and 5 are not terrible, but if I had the tablets to supplement the patch, I feel sure I would have no RLS at all.
All this is to suggest that perhaps you could ask to change patch after sooner or maybe the doctors would agree to give you only enough tablets to help the patch finish the job.
Good luck, I hope you get relief soon. Rivers
Just wondering if you leave the old patch on for a day or two when you add a new one? That might explain why your symptoms worsen on Day 4 and 5. 20mcg probably isn't quite enough for you. You would be getting a bit more than that when you are overlapping with both patches - even though the effectiveness wanes after 4 days, the patches still seem to be about 50% effective on Days 6 & 7.
Hi. Thank you for your reply. I , usually, change the 20 mcg patch every 6 day's and take the 6 day patch off when I put the new one on. The rash is horrendous though and has caused inflammation and slight infection in my blood vessel's which worries me so I have been given cream called Elocon to apply when I take the patch off and tablet's. That doesn't help me when the patch is on and I'm like a cow scratching on a gate ! This is why I asked for the tablet's and I still can't understand why the Pain Clinic won't allow me to change from patches to tablet's. It's completely illogical! Also, considering it's the Pain Clinic who left me with a tumour on my lung for 15 month's and no treatment with my health getting worse and worse you would think that they have made more of an effort to help me . If I hadn't had pneumonia and been rushed to hospital, I wouldn't be here now ! Two of them have just admitted that their ' policy ' of looking at Xray's was why my tumour was overlooked! I'm ranting now .....again! Sorry! I just cannot understand the attitude of the medic's at the Pain Clinic and my Dr. is not ' allowed ' to prescribe Buprenorphine tablet's but the Pain Clinic can and they have prescribed the patches! What a mad world! Meanwhile, I am left feeling awful.
Take care. Best wishes, Danni
I leave the old patch on for 2 days. R
This tells me that you need more than 20mcg. Maybe ask your doctor if you can add an extra 10mcg patch along with the 20?
Hi. Thank you for your reply and sympathy. It means a lot. This forum is incredible! I have been so depressed at times but people here have kept me going. My Dr. has agreed to write on my prescription that I might need to renew my prescription for the patch after 5 day's because apparently, the Pharmacist is checking on people who are on Opioid medication! My Dr.s are not ' allowed ' to prescribe Opioid medication any more and they have to get permission from Pain Clinic's which is ludicrous because my Dr. knows me well but I have never met the medic's at the Pain Clinic! I find the direction the medical profession has gone in since Covid is insane and patient's are not the main concern any more! I, also, firmly believe that the British and Scottish Government's are pushing the NHS into privatisation! I wish that I could have the tablet's because the fact that the rash from the patches is causing inflammation and slight infection is a worry to me and apart from the awful itching it's, also, painful! I , so, wish that you could get the tablet's too. Thinking of you in beautiful Brazil and wishing you all the best. Please take care and thank you again. Danni
Hi Danni
Deeply sympathise. I am hoping that I can begin Bupremorphine or similar soon, but I too am UK-based with reluctant doctors. I have MS too and get daytime RLS as well as night, and because of the MS, can’t walk it off!
UK doctors seem to know sweet FA about RLS and its horrid effects, and are even less interested. Thank God for this forum.
Danni, I do hope you get some solution soon. Sending very best wishes. X
Hi . Thank you for the sympathy. I agree with everything you've said. Just because we have read up on this horrendous condition, it seems to get the medic's backs up that we know much more than they do ! They just don't seem to be interested in learning about RLS. As you say , Thank God for this forum ! Having gone through being misdiagnosed for 15 month's because the Pain Clinic ignored my lung tumour was bad enough and then going through Lobectomy, I had a half life anyway but this is making me feel worse. We keep battling on though don't we and you would think that the medic's would think about that and give us a bit of credit for being fighter's! If I hadn't fought through that 15 month's and the cancer, I wouldn't be here now ! Grrrr!I have a close friend with MS so I know how awful it can be coping with certain health aspects of MS plus RLS. She has and is , periodically, going through really difficult health situations. I think that you are all incredibly brave!
By the way....looking at your name ...do you mean Dave Bowie because I love his music too! Just thought I would add that!
Please take care and good luck. xx
You are right, Danni, and I think you’re pretty brave too! A friend of mine has similar and her courage is beyond anything i have. I think with RLS you need a weird kind of almost permanent tolerance.. My MS is tolerable and it is interesting that Joolz also thinks the RLS is - at the moment anyway- worse than any of the MS features! You have to laugh or you’d just weep. I do hope your friend is coping ok.
My name is indeed in reference to David Bowie! Huge fan, went to see him 3 times, my best friend and I wept together when he died!! Not as bad as RLS, though!! 🤣
Take good care Danni. X
I cried too! There have been too many amazing people who have gone including friend's and family. Alan Rickman for one. Snape no more! My brother in law and so many other's. Bowie was incredibly special and I loved him from the beginning! I'm an " invalid " and had Endometriosis from age 26 but it never stopped me from loving music and band's...probably why I married a drummer !! Think about that word invalid because if we take it in a different context, that's how medic's have made me feel until ..." Oops! We forgot to tell you you have a lung tumour and you've had it for 15 month's but we ignored it ! " I feel ' invalid ' and ignored and that they don't really care! It took me 2 year's to get the Endometriosis diagnosis and then , only because I went to see a wonderful Gynaecologist 3 hour's away from where we live and privately. Medic's here tried to make me feel like a hypochondriac! Ended up having 3 major operation's and no children. I may have reached the weird age of 71 but only because I have fought to be here ! My head doesn't feel that age ! I'm stuck at 28 ! So....please keep fighting and we will all get through this. RLS is absolutely horrendous. Just think of David Bowie looking after us from the 🌟 star's !! You are SO lucky to have seen him ! Please take care . xx
Oh Danni I am so sorry! Doctors are a strange bunch, so brilliant and so intensely annoying at the same time.
I’m 65, feel 17 mentally and about 129 physically!!!
I like the idea of DB looking at us from the stars!! He certainly was a super-one!
You too take care. Onwards and upwards!! Xx
I'm hoping l get prescribed to Bupetnorphine l ,m struggling just come off 0.18mcg 2 twice a day Premiprexol and left with no back up from the withdrawals can't speak to my doctor till Friday l had to go back on tramadol which l was taking before Premiprexol so back to square one My legs where out of control and the sweating and headaches not sleeping l don't want to take any more opiods l have had enough to last me a life time gabepentin premagablin this bupernophine is my last hope till l get to see l Neurologist. You just get to a stage where you just want give up it's such a terrible condition
I am so, SO, sorry that you are going through this and you are so right...the whole thing is a nightmare. The Buprenorphine patches have helped my leg's but I think it's good to be aware that they don't last for the 7 day's. I told my Dr. and he has written on my prescription that I might need them renewed after 5 day's. I hope that you are given Buprenorphine. Not everybody gets the rash so I, REALLY, hope that you get your prescription soon. This forum is amazing so please know that you will get the support that you need. I understand about the depression and the desperation but people here are helping me so much and we will all be here for you too so , please don't give up. I can't get to speak to my Dr. till Monday next week and I hate that it's a phone appointment but that's the way thing's are now! We are all with you and understand so, please, don't give up. Take care please and let us know how you get on.
Love,
Danni x
My guess is that the docs fear a person could sell tablets on the black market. They don't understand that our resultant lack of sleep would keep us from doing that. The opioid scare has engendered such a reticence to prescribe that patients around the world are suffering needlessly. I just have no conception when, if ever, this can be remedied. I pray that your prescriber will change their mind.
Hi again. Thank you. I don't know what I would have done without the support of you all here and the advice. The Pain Clinic won't change their mind's so I have asked to see a Neurologist. These day's, I don't know whether even that will happen. I detest Dr.s phone appointment's because how can they SEE how shattered you look and how many extra wrinkles I have acquired?!! Also, because of the cancer misdiagnosis, my voice is shaky so I'm self conscious about that !I emailed the Pain Clinic medic's and said if they thought that I would misuse Opioid's then would they remember that they don't know me and haven't met me....these are a new lot since the misdiagnosis! My G.P. has said that he would prescribe the tablet's because he knows me well but he isn't " allowed " to and it has to be done through the Pain Clinic! What a mad world !
Take care and thank you, again, for keeping me going!
All the best.
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