I had an MRI 2 weeks ago because the pain from my fractured vertebrae is now unbearable although the Buprenorphine tablet's help for a while. Still waiting to see the Orthopaedic Consultant but spoke to my Dr. today and he wants me to try Tapentadol tablet's but I'm worried about how they will affect my RLS. They still don't know whether the fracture is trapping nerves and I'm in despair over the waiting times and lack of care though I should be used to that by now! Is Tapentadol bad for RLS ? I can't remember whether it's one of the red flag tablet's. Sorry to be so dense but I'm in such pain and feel so ill that I can't think straight! Thanks in advance. Hope you are all coping OK. Thank you for all of your posts Jools. Love to everybody. Danni xx
More advice please! : I had an MRI... - Restless Legs Syn...
More advice please!
It is an opioid and won't make your RLS worse. But the buprenorphine. might block the tapenadol.
It also only lasts 4 to 6 hours.
Hi again Sue. Thank you so much for replying so quickly. I really appreciate all the advice and support that you have given me and appreciate your reply. I'm still taking the Buprenorphine Sublingual tablets but my Dr. wants me to stop taking them and take the Tapentadol instead because my vertebrae pain ìs so bad. I haven't read up on Tapentadol yet although I know it's an Opioid. I wanted to check that they wouldn't affect the RLS but will they be as good for the RLS as the Buprenorphine? I have to let the Dr. know tomorrow what I want to do. Take care Sue.
All the very best, Danni.
Personally I would just increase the buprenorphine since it lasts longer.
Unfortunately they won't allow me to increase the Buprenorphine! I don't understand the logic!
I agree with SueJohnson. The logical step is to increase the Buprenorphine as it would cover the RLS AND the fractured vertebra. As Sue says, the tapentadol is short acting so will lead to interdose rebound ( Increased RLS) and may not cover the back pain.Would the GP consider the Buprenorphine patch which releases a steady amount of Buprenorphine every hour and is therefore better for pain?
Or, better still, get medical cannabis which will really help the back pain and you can stay on Buprenorphine.
Releaf or Curaleaf clinics will arrange a prescription.
Hi Jools. Thank you for replying. Unfortunately my skin doesn't like the patches and I had a really bad skin reaction to the patches. I will ask my Dr. again to increase the Buprenorphine tablet's ( which taste disgusting!!) but they do help the RLS. He gets so annoyed because I check whenever he suggests a new pill but I don't care ! It's my body ! Dr.s really hate the Internet don't they ?!! I will let you know what he says. I couldn't bear the RLS coming back full force again as it's bad enough having the fracture pain ! As the Buprenorphine wears off when I'm asleep the pain and RLS wake me up. Will look into Curaleaf though I didn't find CBD helped. Thanks again. Take care Jools.
Best wishes, Danni x
If he won't increase the buprenorphine be sure he prescribed enough for you to take it 4 times a day. Or ask for the extended release version that lasts 12 hours and get enough to take every 12 hours.
Thank you Sue. I'm on 0.4mg Buprenorphine, 3 times a day. The Dr. doesn't want me to take any more but I will try that. I didn't realise that there was an extended release Buprenorphine. Is that also Sublingual?
I was referring to the tapenadol when I said extended release.
The Mayo Clinic updated Algorithm says the usual effective dose is .5 to 6 mg. You might want to print that out to show him you are only on 1,.2 mg total which is a lot less than 6 mg.
Although in this case you want to increase it for pain not for RLS, it still shows that there is room to increase it without it causing addiction.
Thank you Sue. Sorry, I misunderstood! My brain is not working well today! I will speak to my Dr. but I don't think that I will get far! Worth a try though. Thanks again for your advice, help and support.
No problem - I do that myself and then have to go back and correct myself.
CBD does nothing. You need the psychoactive THC. That's what stops the pain. I use it for trigeminal neuralgia and MS hug. It's the only thing that stops the pain. It's expensive but hopefully you would only need it until the spinal verterbrae heal or the orthopaedic consultant recommends an increase in Buprenorphine pills.And I do wish GPs would admit they know nothing about RLS and the drugs used to treat it. I prefer honesty to dismissiveness / gaslighting.
I so agree about GPS! I have had the fracture for 3 years now but was only referred to the Orthopaedic Consultant 3 months ago. I haven't heard back from him since I had the MRI 2½ weeks ago but my Dr. had a look at the scan yesterday and there is no cancer which is great but then he said that he can't understand why I'm in so much pain or why I'm getting the RLS .He made me feel as though I was making it up! That happened before when I had Endometriosis and my Dr. said the pain was in my head! I saw a private Gynaecologist in Aberdeen, had a scan straightaway and there was a cyst the size of an orange on my left ovary ! Same with the lung cancer! It's in your head! Actually...tumour on my lung for 15 months before I got Pneumonia! I have a big bony lump on my lumbar region where the fracture is and everybody sees the pain I'm in. I try to do as much as I can but have to lie down every afternoon when it becomes too much! Why does the medical profession make people feel as though they are making up their pain? I am desperate to do what I used to when I was active. Sorry Jools! My head is not in a great place at the moment. Thank you for " listening " ...again!
amazon.co.uk/Audible-Unhear... a book written by a doctor with endometriosis on this very subject. Doctors not listening.
Thanks Jools. I will have a look. I think a lot of us are " unheard " ! Thank goodness for you, Sue and this Forum ! I would be a lot worse without your help.
I ordered the book . Wow ! So interesting to read a Dr. admitting so much. I do understand that Dr.s get jaded but the majority of us are not hypochondriac and we definitely don't want to be in pain. It's humiliating and so hurtful when medic's don't believe us ! I think that I am going to have a fight on my hands to get help from so called ' professionals '. I am so sick and tired of having to fight for help and for them to REALLY listen to what I'm saying. To have a Dr. tell my husband that my illness was in my head and to make sure that I got up every day when the Pain Clinic had ignored my lung cancer for 15 months was appalling! I was so ill during that time and I'm still angry because 2 of the Clinic admitted last year that it was their fault that the tumour on the Xray had been ignored! I won't go into every occasion that the medical profession has let me down! I imagine you could also write a book Jools!
I agree 100%. I recently had my gallbladder removed by a wonderful female surgeon. I also had a female anaesthetist. They both listened and were fascinated by my RLS. They agree to Zofran instantly and both said they always listen to patients. They said that if a patient says they are experiencing pain- believe them.I just wish there were more doctors like that.
We should definitely consider a book called 'GASLIT' where we can all share our horror stories of what medical professionals have said to us about RLS in particular.
That is such a good idea. We all have horror stories to tell I think. I have heard so many from people who have been badly let down. It's frightening and disheartening. At one time Britain had a good reputation for the medical profession although my parents both died in hospital through medical neglect and they died 20 and 24 years ago ! What is going on? It's so sad and why do people have to be taught how to care? It's a good job we care about each other!
Hi Danni. I noticed your comment about the doctor not understanding why you are getting RLS. I had a spine injury about a year ago (multiple fractures of two vertebrae). And, a couple months later, my pretty mild RLS suddenly became severe. I couldn't understand it until I read a website that mentioned that RLS can be caused or worsened by a spinal injury. I can't re-find that website, but I believe it was authored by Dr. Buchfuhrer. As I was trying to re-find that site just now, I came across some other articles that might help you (I hope). My basic take-away is that one of the articles might help show the Dr that there is a connection. But, the other take away is new for me: It's suggesting that sometimes a spinal lesion can create symptoms that present as RLS but then the RLS goes away when the lesion is addressed.
sciencedirect.com/science/a...
academic.oup.com/sleep/arti...
Thank you so much for your reply. That is so interesting. My RLS started after I had been in hospital with Campylobacter and had an allergic reaction to the antibiotics which the on duty Dr. ignored despite the fact that I had had previously had Anaphylactic Shock! I had a terrible few months with no sleep and my leg's getting worse. Some people seem to think it's a joke and Dr.s don't appear to understand the severity and impact of RLS. This Forum saved my life and my sanity ! I will have a look at the articles and will print information for my Dr. although I did that before and I am sure it was ignored. I gave my Surgery posters from the RLS Society and gave them cards but apparently nothing has been put on the notice boards! I really hope that you aren't suffering. Take care. Best wishes.
Why do they make people feeling like they are making up their pain - because they don't know the cause or how to solve it, so it must be you.
Of course! I think that will be my ' mantra ' when I speak to the Dr. and the Consultant! My friends are horrified that I have been left in such pain and they can see how much pain I'm in. What amazes me is that neither the Dr. or the Consultant have looked at the big bony lump on my spine or felt it !
Hi Danni, in reply to your original question about tapentadol. I had a hip replacement in January this year and am on buprenorphine. As a pain relief, on top of the buprenorphine (patches), I had both tapentadol and endone and both did help the surgical pain. When I had breakthrough RLS probably due to post surgical pain, increasing the pain relief also brought relief for the RLs. Although it's supposed to block other opioids, I certainly found the other two helped. I never did understand though why they alternated the two additional drugs.
I'm horrified by your experience and hope you get some satisfaction soon. Have you asked the doctor to look at the lump?
Is it obvious to the normal eye or need to be palpated? If it was, what about a photo?Do you have an opportunity to change doctors. It certainly seems as though you'd be justified.
Hi. Thank you for letting me know. I worry about starting different medication because I'm so sensitive to different meds. I've decided to wait to decide because I just got an appointment to see the Orthopaedic Consultant on the 2nd December. When I first met him 3 or so months ago he wanted me in and out as quickly as possible. I had written down everything I am going through with my spine and RLS and all he said was that he couldn't see the connection. He organised the MRI and I was gone! This time, I will ask him to look and feel the big bump on my vertebrae! It's a big bony lump which sticks out so, it's very noticeable! Apparently, our Surgery doesn't have a good reputation and all other Surgeries are full so I can't change but I have a newish Dr. so fingers crossed! It's so difficult now to get a face to face appointment. I'm waiting for a phone call from the Surgery as I've been up most of the night so I had better go !
Take care and all the best.
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