General Medical Council Patient Survey

[Joolsg]

This is a survey for patients in the UK.

It may help improve teaching & knowledge of RLS.

I answered all the questions based on the treatment I have ( or haven't) received for RLS.

smartsurvey.co.uk/s/RUZJCV/

[Kaarina Administrator]

Thank you, Joolsg,

Is there anyone else in our community who would like to complete this survey to help improve teaching and knowledge of RLS in the UK?

[AHG123 in reply to Kaarina]

Yes

[Kaarina Administrator in reply to AHG123]

Thank you so much. What a star!

[Neil46 in reply to Kaarina]

Yes,will complete it in morning; can't concentrate now

[Kaarina Administrator in reply to Neil46]

Thank you for letting us know Neil46. It is appreciated. Agreed! Best to complete it when concentration is at its best.

[Neil46 in reply to Kaarina]

All completed as promised. It is a good survey and made me think when answering. I encourage others to complete it as well. It may make a difference.

[Joolsg in reply to Neil46]

Thanks so much Neil.

[Kaarina Administrator in reply to Neil46]

So grateful to you. Thank you so much Neil46. We very much hope others will complete it too. As you say it could make a difference. Thank you for helping us.

[SilverEvie in reply to Kaarina]

I also will definately be completing the survey when i am home from work

[Kaarina Administrator in reply to SilverEvie]

That is brilliant, SilverEvie, Thank you.

[Joolsg in reply to SilverEvie]

Thanks so much SilverEvie.

[Sremski in reply to Kaarina]

Sure

[LotteM]

Anyone else??!!

I am not in the UK so I can't take the survey. But many of you can. We have to speak up for ourselves!

[Kaarina Administrator in reply to LotteM]

Well said, Lotte.

[NeuroSeeker in reply to LotteM]

No kidding! And speaking up for yourself is a great way for a doctor to shove you off onto someone else. The US's medical complex is an embarrassing disaster.

[Munroist]

I've completed the survey, I didn't feel there was a great deal of scope to make points about the lack of understanding of RLS but I managed to get some in.

[Joolsg in reply to Munroist]

I fudged it and made every comment include something about RLS. Every little helps....

[Kaarina Administrator in reply to Munroist]

Thank you Munroist. Very grateful.

[rls-insomniac]

I'll complete it later on today.

[Freegaza786]

Doing it now

[Kaarina Administrator in reply to Freegaza786]

Thank you so much for letting us know.

[yorkie24]

Finally got around to completing it!

[Kaarina Administrator in reply to yorkie24]

Yay, Yorkie!Thank you SO much!

[Joolsg in reply to yorkie24]

Thanks so much Yorkie.

[Kaarina Administrator]

Please let us know if you have completed this survey. It gives us an idea of how keen members are, in the UK, about trying to help improve teaching & knowledge of RLS.

[Kaarina Administrator]

Anyone else in our community and living in the UK willing to complete this survey to raise awareness to help improve teaching & knowledge of RLS?

[bedith6 in reply to Kaarina]

Just to let you know I have completed the survey

[Kaarina Administrator in reply to bedith6]

Thank you so much Bedith6, That is wonderful. It really is appreciated.

[rls-insomniac]

Sorry, forgot to mention that I've also completed this survey!

[Joolsg in reply to rls-insomniac]

Brilliant, Thanks!

[Kaarina Administrator in reply to rls-insomniac]

Thank you for letting us know! You are a star! Most grateful.

[Hidden]

Done

[Kaarina Administrator in reply to Hidden]

Brilliant news. Thank you so much.

[Joolsg in reply to Hidden]

Thanks so much Andy.

[Kaarina Administrator]

Anyone else living in the UK willing to complete this survey to raise awareness to help improve teaching & knowledge of RLS?

[bedith6]

Hello Joolsg. Last night on my usual pacing round the house I looked on my iPad and found bbc reels. Howard Timberlake was doing a podcast on RLS. Among the people he interviewed was a lady by the name of Julia Gould and I wondered if that was you. If so you mentioned buprenorphine and that now you had no symptoms of RLS. Please let me know as I have many questions I would like to ask if you wouldn’t mind that is.

[Joolsg in reply to bedith6]

Yep, it was me. Feel free to ask away.

[bedith6 in reply to Joolsg]

Thank you. What was the buprenorphine you mentioned in the interview, was it TEMGESIC. Are you now completely free from RLS day and night? How wonderful if so. What dosage are you on and when do you take them? How do you feel the next day. I am taking two two hundred mcg one at 6.o.o pm and one at 11 p.m. and so far they have not touched my symptoms. I still can’t sit during the day and I’m up practically all. night, still driving me crazy. I’d be so glad of your knowledge and advice Joolsg as my neurologist although he has prescribe the Temgesic doesn’t seem to be able to help me with advice I need for it’s use. Wishing you peaceful nights and days. Beryl.

[Joolsg in reply to bedith6]

Are you still on any dopamine agonists like Ropinirole, Pramipexole or the Neupro patch? Are you taking any meds that may worsen RLS like sedating anti histamines, statins, beta blockers or PPIs for stomach issues? I take generic Buprenorphine which is the same as Temgesic. I take exactly the same dose as you but at different times. I take 200mcg at 10pm and 200mcg at 12.30am.

I am RLS free day and night. I have no side effects any more - the nausea went after the first 3 weeks and the panic attacks/anxiety went after I took 50mg of pregabalin for 5 weeks (I then stopped the pregabalin and the anxiety had gone).

I do occasionally get RLS for 1 or 2 hours at around 9 pm if I am stresses or have an infection, but otherwise the Buprenorphine gives me complete cover.

If you are still getting RLS, first ensure you're not on any of the meds I listed above, then check your ferritin levels and raise ferritin above 100 by oral supplements or getting an IV iron infusion.

Discuss fully with your doctor and consider increasing to 600mcg a day. Buprenorphine usually works at very low dose but you may need to increase it to cover your symptoms.

[bedith6]

Thank you for your reply Joolsg. I have been off the D.A meds for years now and was taking Tramadol for four years. I have weaned off those now and have been off them for a month. I also weaned off Temazapam but during the last few days have taken them again as I was getting no sleep at all and at least that gave me an hour. I don’t take anything on the list you posted as I am very aware now of most of the triggers. I did get my ferritin level up to about 120 but have not had blood checks recently. My neurologist is ringing this evening so I think I will see if he will allow me to go up to 600mcg. albeit gradually. Do you feel any effects at all from the buprenorphine during the day? I have not been sick but have noticed I’m a bit unsteady in the mornings, still that might be because I’m very old. Lastly do you think the medication you take is better or stronger than Temgesic and should I ask for that? I am very grateful for your help in my search for some peace from this wicked condition. Thank you. Beryl

[Joolsg in reply to bedith6]

No I haven't noticed any other side effects from Buprenorphine.As your serum ferritin seems to be acceptable and you're not taking any meds that worsen RLS, you should definitely speak to your GP and neurologist and ask for a slight increase to 600mcg. I know Shumbah takes a much higher dose to control her RLS (2mg) so we are are all different and some will need higher doses.

I doubt my generic Buprenorphine hydrochloride is any different from Temgesic and think you may just need a higher dose. I really hope your neurologist listens to you and works with you to find adequate cover for your severe RLS.

[bedith6]

Hello again Joolsg a quick update. Dr Bagary has just rung and he has suggested that I take two tabs together at 10.30. Pm, do this for a week providing there are no I’ll effects and then if that doesn’t work to take three tabs together at 10.30 pm. I’m not very convinced myself but I suppose I will have to try it, I certainly don’t think it is going to help my daytime and the even worse evening symptoms but he did say to ring him if things don’t work. I do wonder if he really knows quite what to do for me as he said mine is the worst case of RLS he has ever dealt with. Let you know how it goes but I’d be interested to k ow what your thoughts are. Wishing you continuing peace. Beryl

[Joolsg in reply to bedith6]

Interesting suggestions. Buprenorphine has a long half life so usually lasts 22/23 hours and so occasionally you will get an hour or two of RLS in early evening.You could try his suggestion but if 2 tablets together don't work after 3 nights, try adding the third tablet an hour later, just before bed. It may be a case of trial and error but 600mcg should hopefully work. I wish you all the best and let us know how it goes.

J

[LotteM in reply to bedith6]

Bedith, just a thought.

I was on Temgesic as well and still am on nuprenorphine, but have switched to a patch with a continuous release of the medicine. The Temgesic and now the patch works very well at the lowest dose.

What I was going to ask it whether you are aware that you have to let the Temgesic pill dissolve under your tongue. Thus NOT swallow it.

Maybe this is a stupid question and of course you are letting the pill dissolve. I am just trying to think of another reason why your current dose doesn't work, apart from that you are still not taking enough for your rls. As Jools said, Shumbah needs 1-2mg and I think I recall others that take even more.

[bedith6 in reply to LotteM]

Yes I do let it dissolve under my tongue but thank you for thinking to remind me. I think I may be one of the sufferers who need more than most and my neurologist does seem fairly open to the fact

[LotteM in reply to bedith6]

Bedith, that is in a way good to hear. Also, I know you suffered for so long with inadequate treatment. I really hope the bup will work.

My neurologist got in touch with dr Buchfuhrer at some point, to draw from his ample experience. Maybe you could suggest that too to your doctor if you continue to have difficulty. Or with dr Winkelman. But at least dr B always responds very quickly. I hope there is no need though.

Do you tolerate the Temgesic well?

[bedith6 in reply to LotteM]

Thank you for your reply. I will go along with Dr Bagary’s suggestions for now I know he is trying to be helpful and to try to enable me to get more sleep. I did get in touch with Dr B myself when I realised the Temgesic wasn’t working for me and he said I probably needed a higher dose. So far I have tolerated the Temgesic well but of course I have only been on low doses yet. At least my system must be getting used to them against the time when I need more. I am still hoping they will eventually work for me and I can look forward to a more normal life.

[Kaarina Administrator]

Thank you to those that have let us know they have completed this survey.

Anyone else living in the UK willing to do this to raise awareness to help improve teaching & knowledge of RLS?

[NeuroSeeker]

Wouldn't it be great of the US cared enough to ask RLS vicitims about their experiences, like that General Medical Council survey. Instead, I just keep getting shoved from one doctor to another. Nobody wants to help, and there is nobody to go to for help.

Mine is a nation that has completely lost its way.

[Kaarina Administrator]

This survey has now closed.