Happy New Year to everybody on this Forum.

[Danni54]

I haven't been here for a while because I have been and am quite ill and have had MRI Scanon my spine. My RLS was helped by Buprenorphine Sublingual tablets. I couldn't tolerate the patches because they caused a bad skin reaction. Then my Dr. for some reason decided to take me off Buprenorphine and he said that they would be better for me. They aren't! He is hoping to talk me into taking Ropinarol which I am refusing to do having had excellent advice from people here and I have Googled the drug and American Consultant's have said that that drug causes very bad augmentation etc. which is what Jools and Sue have said. Thank you so much to them and others for all the help and advice. The MRI has shown a fractured vertebrae which is compressing nerves and the Orthopaedic Consultant can't do anything to help me and told me I have had too many birthdays so I have bad Osteoporosis! Too kind! I will be 72 in February! I have 100 mg Tapentadol twice a day and quick acting Tapentadol 50 mg for in between. I take 100 mg at 10 p.m. but by 3.30 - 4 a.m. the RLS gets very bad so I have had to take 100mg instead of the 50 mg.

It is , of course, New Year so I can't contact my Dr. The Tapentadol helps the fracture pain to a degree but when it wears off I'm in agony with my leg's kicking and they feel as though they are in a vice +++ ! I have asked to see a Neurologist but have been told that they won't be able to help me with the RLS. Would people here agree? I'm so tired with the fracture pain, RLS and the Tapentadol and I hate being an ' invalid '. My Ferritin level is always low and doesn't go up much even with Iron pills . Should I ask, again, to see a Neurologist and why won't Dr.s listen to what their patients are telling them and why don't they want to find out more about RLS. My Dr. has a few patients on Ropinirole and keeps telling me how much they have helped but I've researched those pills and read too many negative comments about that drug.....if anything made my RLS worse I don't know what I would do! So....should I see a Neurologist or should I ask to be put on Buprenorphine tablet's again? Will the Tapentadol build up in my system and help more. I can't think straight and don't know what to do next ! My Dr. is on holiday till Monday but I will contact him then. Any advice would be much appreciated...again! Take care everybody and I hope this year will be better for you all.

[Madlegs1]

I'm so sorry for the situation you find yourself in.

At our age we don't need to be fighting for our literal lives.

You are being badly served by your Dr.

You were on Bup and it was working.

What did he want to change you to? Was that the Ropinerol??

That would be a HUGE BACKWARDS STEP .

And completely wrong according to any modern protocol.

Can you print out the mayo algorithm/ protocol for treating RLS with opioids? Or get someone to do that for you.

A neurologist may be of help --- but only if they are competent with RLS and prepared to put you back on the bup.

Be sure to make a big issue of how much pain you are in from the spine. You should easily get an opioid for that pain. A pain consultant might be a better option. Who put you on Bup in the first place?

That's how I got Oxycontin in the first place.

Some of your RLS may well be withdrawals from coming of the Bup.

Your low iron also needs to be addressed. Preferably with an iron infusion-- but that seems to be a bit of a postcode lottery in the UK.

Otherwise get ferrous bisglycinate and take every second evening with vit c on empty stomach. Somebody will correct me if that advice is wrong.🥴

Hope I e addressed your concerns--- do come back with any questions and somebody will come on.

All the very best, and hope you get some decent treatment to get you through the next 20 years. ! 😝😎💚☘️☘️☘️☘️

[Danni54 in reply to Madlegs1]

Apologies for not replying sooner but I haven't had a full nights sleep since before Christmas. Thank you all for the replies and I will write tomorrow after I, hopefully, manage to speak to a Dr. ! You , Jools and Sue are so good to talk to and are so helpful. More tomorrow. I hope you manage to sleep! xx

[Joolsg]

I'm so sorry to hear this Danni.Your GP is completely wrong. The Ropinirole will help his other patients for a short time. And then it WILL worsen their symptoms SEVERELY.

Your GP needs to read the RLS-UK website and read the latest research.

Ask to see Dr Chris Murphy at Salford hospital. He is aware how beneficial Buprenorphine is for RLS and will arrange iron infusions.

[SueJohnson]

Dr Colin 0'Leary is a neurologist in Glasgow that Scottie99 saw but I have no idea how satisfied he was nor if he will prescribe buprenorphine. You can message him and ask.

Not being in the UK I don't know if Dr Murphy who is excellent can recommend buprenorphine to your doctor in Scotland.

For private iron infusions there is Https://taysidecompletehealth.com/i... at Dundee which would be closer to you or Https://glasgowprivateclinic.co.uk/wp-content/uploads/2024/10/GPC_IronInfusions_Doc2.pdf

For backup to persuade your doctor to prescribe buprenorphine beside the RLS-UK site at rls-uk.org and the Mayo Algorithm at Https://mayoclinicproceedings.org/a... there is the AASM Guidelines at jcsm.aasm.org/doi/pdf/10.56 and relacshealth.com/

[Danni54 in reply to SueJohnson]

Thank you once again Sue. I told my Dr. about the Mayo Clinic and I gave him information from the RLS Society which I don't believe he has read! I despair! What do you do when Dr.s just don't want to know?! I couldn't speak to my Dr. today because he is on holiday till Monday. Unfortunately, RLS doesn't have holidays! Take care and I will let you know what happens because I am ready to growl... again. All the best.

[SueJohnson in reply to Danni54]

Very frustrating!

[RLS24]

a Dr who wants to move you from Bup to ropinirole does not understand RLS. I had a similar Dr over ten years ago who thought the answer was simply increasing the ropinirole. I have just started Bup so cannot report long term effects, but I note that it is the first time in years I have had a restful sleep. I would only see a neurologist who has some understanding of modern RLS.

[Danni54]

Thank you for replying. I gave my Surgery leaflets and posters which I got from the RLS Society and they haven't put the posters up and I don't believe that they have read anything about it. I keep arguing with my Dr. about Ropinirole and he just says that he has a few patients who take it and they have benefited . I have told him that he will never get me to take a drug which will make my RLS worse because it's bad enough now and if it gets worse I don't know what I would do! I tried phoning him today but of course, they are on holiday so I will phone on Monday to try to get an appointment. I am so exhausted and hate the way we have to fight for everything with the medical profession and I also hate being treated at age 71 as though I am senile and know nothing!

I am trying to find a Neurologist who knows about RLS but even that seems to be a struggle. I did find more relief with Buprenorphine Sublingual tablets than I do with Tapentadol which are making me feel peculiar!

Take care, good luck and all the best.