Gutted after visit to doctors today,my wife and i went in armed with video evidence,info jools gave me this morning about different meds etc etc she watched video listened to what we had to say and well that was that.The meds jools mentioned she said they are really heavy meds and unsure if she can or will prescribe them to me got to talk to senior doctor and a neurologist about them and if its safe to take codiene etc with pregabalin .Told her about work and the lack of sleep i,m getting just did,nt really take alot of notice just kept saying she knows how we feel but there is limited knowledge about RLS available to her.Told her how low i was feeling and my wife did also she just looked BLANK and said sorry she did,nt have an answer for us,the side affects i,m having as well no reply so all in all GUTTED but in a away i knew that would be the outcome so where do i go from here ? the way i,m feeling with nowhere else to go or turn to for help is deeper down and hope i don,t do anything stupid but unsure of what i am capable off doing to myself i,m at my lowest already Thanks for all your support and those of you that are also struggling i send you my best wishes x

20 Replies

  • Nick so very sorry you didn't get any help ,but please do t give up there must be a doc that's some good at your practice,we all know there are things we can take that does help, you must ring don't let it go . Best wishes

  • This doctor is the one in the practice that deals with sleep problems etc.Had my poor wife in tears that they had no answers for us and my family as they suffer as well with me being snappy all the time not a good atmosphere here at moment regards nick

  • Did not realize that this is the one who deals with sleep problems. She needs to go back to school. I am so upset for you. The emotional toll this takes on the entire family needs to be treated, too, and when a doctor says they have no answers, then they should be able to suggest a doctor who MIGHT have a clue. :(

  • Oh Nick. your doctor has noooo idea on how people with RLS suffer and i am sorry she was of no help. What you need to do now is ask to see some one at a pain clinic. I had the same thing with a couple of my doctors when asked about the Targinact, which is stupid since NICE have approved it for RLS. One doctor said i would have to go to a pain clinic to get it. I declined as i just wanted to see what response i got. I doubt i could take Targinact as i have problems with all the meds either dizziness or so drowsy i cant function the next day. Now do not think about giving up, you are off the dopamine med so you have made such good progress. You just need a flipping doctor who knows how to deal with this. All pain meds can be taken with Pregabalin, she needs to educate herself and HAVE some empathy what you are going through. You will NOT do anything stupid... ok.!! Phone and ask what has been said about the Targinact you need to know that, if the answer is no cant have it then asked to be referred to a pain clinic. They shouldnt refuse you. For some one who deals with sleep problems she is rubbish. I would try to make a appointment with a different doctor at your surgery. If you think the Pregabalin is causing alot of your problems then try reducing the dose see how that goes, just keep taking the Tramadol or codeine.

  • Thanks Elisse but will try pain clinic if no luck with her but so low through needing sleep that my head is all over the place x

  • pain clinic is the next idea, as Elisse says. Today , just let things sink in, and then things that need to be done can be done. I feel so sorry that your wife was in tears, and the doctor seems to have zero sympathy, which is again "doing harm". x

  • HI, NIck, just checking in. I know what it is like when your head is going at a million different speeds, and just all the stuff floating around in there. Do not have any great epiphanies for you, just sending good thoughts for now, and wishing you peace. x

  • I am not surprised on how you are feeling. You should have taken another week off work, for your own safety. Are you getting any sleep at all at night or during the day. ? I am so mad at your doctor not giving you any help. No suggestions from her on what you can try to do. You have been on the Pregabalin for 2 weeks now.? It is still early days for it to get into your system, another two weeks i would think it needs yet. But, if its giving you bad side effects then your doctor should have changed it to some thing else. Hang in there, dont forget we are all here for you. I know i will come on here before long and see a positive post from you. Something that MIGHT help you and what i use alot lately as i am having alot of problems with my meds and i am not sleeping much at night. I use something called Deep Freeze spray, its used for sport injuries, but i find it can help with my RLS. its the menthol in it thats affective so any product that has menthol would work the same. I spray it all up and down my calves right down to my feet as the RLS goes there some times. It numbs my legs and stops the sensations and the urge to move my legs hence i can get some sleep, it only last sometimes for an hour, or an hour and a half, then i spray again. It might not help you at all. its just a suggestion. x

  • Nick, I am sooo sorry. No matter what country we are in, there are always those doctors, even when confronted with evidence. It is the universal excuse, "there is not enough information out there." Well, there certainly is, as far as different treatments go. I do not take that excuse, I had several doctors "gut" me, too. What is maddening, you went in there prepared, you were brutally honest with her, and your wife was, too. To be able to sit there ignore, basically, your concerns about "feeling low", sleep deprivation, etc etc, shows me that she has forgotten her Hippacratic Oath, "first do no harm". Ignoring your very valid concerns is doing HARM. I wish I had better words for you today, I know this is a bad day. Is this your first doctor that you have tried to get help from for RLS. If your current doctor says she just does not know, that is not a good enough excuse. I know you are dealing with the NHS and things move sloooooooow, slower than over here in the USA for sure. But, I think you have gone as far as you can with this one. And, now, I KNOW you are exhausted, it is time to push even harder. Lots of us have been thru the "doctor wars" and it is much easier here than on your side of the pond, but "I don't know" is not an acceptable answer at this point in your treatment. Lots of us cannot take the meds listed for RLS, or used off label for RLS. I do have to constantly remind my doctor that the pain meds for me, are not only for my pain issues, but are the ONLY thing that I can take and work for my RLS. Hang in there, sounds so cliche, but we are here and thinking. x

  • In Ireland, we have a phrase- rather an acronym. GUBU - gross , unbelievable, bizarre, unacceptable.

    These all fit for your experience- I'm gutted for you both. So sorry.

    I fully agree with all the powerful comments above- now is the time to be strong. Get referred to a pain or sleep clinic. Get another (senior) doctor in the practice. Consider writing a strongly worded letter- firm and polite- detailing what you first posted--- you have been utterly responsible - and asking for an explanation as to how they consider their treatment of you is either adequate or professional? Point them in the direction of the NICE protocol for rls treatment. Ask for urgent response as this is having a devastating effect on your quality of life.

    I really hope you get some relief from this torment soon.

    Good luck.

  • Sorry to hear of such stupid response from the doctor. He should admit that he doesn't know what to do and help you find a specialist who does.

    I know what its like to try to hold down a job with no sleep.

    However I apologise to everyone for babbling on about diets but it works for me and some others.

    As of today go to the Monash University (Australia) website and search for FODMAP Read about it. Ignore the fact that it was developed for IBS, it works for some people with RLS.

    Google "Low FODMAP diet" and start on the diet today. Its easy. Also Today ring a few dieticians and say you want help with both the FODMAP diet and the Prince Alfred Hospital Low Chemical Diet. The Prince Alfred is also in Australia. (google it as well) If you find a dietician who recognises the two names you are probably doing well. The Low Chem diet is not well broadcast to the world but I have spoken to the group that developed it and they know it has helped other people with RLS.

    I say do both because you can start on the FODMAP diet youself where as you need help with the other diet. The FODMAP diet helps some people the next day and others after a few weeks. For me it took about 10-12 weeks from memory It gave me an 80% improvement. I have not been on the Low Chem diet for very long (6 weeks or so) and I have had 100% fix for a run of 16 consecutive nights so I think its promising.

    Back to business. Start the FODMAP diet today. Get in touch with me if you want more advice but importantly get in touch with a dietician and get an appointment as soon as you can.

    I think its worth while trying the diet before you start on the drugs to see if it can help. On the other hand if you can find a doctor who will cooperate and get you the drugs tomorrow you might get some good sleep this week. Getting sleep now is your most important job. After you have 5 nights sleep the world will be a different place and you will only be a grump because you can't eat onions and garlic. (and a few other things you thought were essential LOL)

    I hope to hear of your success.


  • Hi Graham really interested in the low FODMAP diet is there any way you can give me basic advice on what i can eat and what to avoid and if possible a meal plan maybe over a week like breakfast lunch dinner and snacks that would be magic the chance of seeing a dietician around here is zero more chance of winning lottery thanks for reply and help on diet if possible regards Nick

  • Nick i am not going to tell you not to try the FODMAP diet. But I have a but, i would want to know if this is right for you just now. You are still withdrawing and i would have thought you need to get that sorted out first.

  • agree with Elisse, Nick. There is a link to that diet in the post with "Fodmap" in the title. That way you can check it out for yourself, and maybe it will distract you. I also think one thing at a time here also, While you are weaning, etc.

  • I am so livid Nick. What an unbelievable response. Get to the pharmacy and buy yourself some solpadeine max which contains paracetamol and codeine. It has warnings not to take it for more than 3 days or you'll become addicted but as you're taking it for RLS, risk of addiction much, much lower than if taking for pain relief. It may get you through these bad days until you get better help.

    Print off NICE guidelines and ask to see her again and explain that you can't take anymore. It was only when I broke down in tears and said I couldn't carry on that my GP initially gave me tramadol. I doubt she would have prescribed oxycontin unless my MS neurologist had written telling her it was ok.

    Do not give up. Go back. These doctors have no idea how truly dreadful this is. They all take my Multiple Sclerosis VERY seriously but it is NOTHING compared to the nightly torture that RLS causes.

    In meantime, maybe give low FODMAPs diet a go. It cannot hurt and may even help. I know my RLS is caused by damaged/expose d nerves in spinal column caused by my MS so it doesn't help me but it does seem to help others, as Graham above says.

    I'm really sending big hugs your way. Even though you're feeling so low, don't give up.


  • My doctor's first response was similar, he had only ever had 1 serious RLS patient who was referred to specialists and never got relief so he thought nothing could be done. Persisting, I was referred to a specialist who listed all the possibilities but explained that I needed to take responsibility and learn about RLS myself! I joined the forums and bought 'RLS' by Buchfuhrer and the specialist wrote to my GP listing the drugs to try. I worked thro' the drugs (GABA, DA's etc) and my GP gained confidence in me and the specialist. I would explain how I was getting on and he would give me prescriptions at my request, referring back to specialist as necessary. He made some errors e.g. telling me to stop Gabapentin one day and start Ropinorole the next(!) but it worked fine. I remember giving him a lesson on Augmentation! I have moved now and have a new GP with little knowledge of RLS but with my medical records and what I have learned on here over the last few years he is willing to supply what I request. I would suggest you work with your GP using them as your access and 'supplier' rather than alienating them, after all, you will be v lucky to find a GP who is an expert in RLS.

    Good luck.

  • It is always best to advocate for ourselves. Nick and his wife have been advocating their butts off, taking info from here, printing stuff out, showing his doctor videos, etc. Your doctor sounds very receptive, just like mine does. All doctors are not created equally, that is for sure. But, we must persevere. I think people I have met along my RLS journey are the strongest people I know. :) We may not feel like it some days, but we ARE strong people. :)

  • Hi Nick, like everyone else here I am appalled at your treatment by your GP. Get in touch with the surgery tomorrow and ask if she has now got in touch with the Neurologist and spoken to the senior GP. Better still make an appointment with the senior GP, They can contact a Neurologist by phone or email don't have to mess about sending letters,

    It is perfectly ok to take Codeine and Tramadol with Pregablin I have taken both with it. If your GP didn't even know that much there is a site doctors can go on that tells them straight away if any meds are contraindicated so her comment about that is pathetic.

    Take as many Codeine as you are allowed this is not the time to be skimping on your pain,meds.

    So sorry to read your post and furious on your behalf and for your family

    Do you think it would help your wife to talk to one of us who has been through it all? In private messages if preferred.

    We are all here for you Nick, keep talking to us


  • Nick, please read all of the comments under Jonvicky's post titled "First Night." It will likely be helpful to you, I don't want to repeat all of the comments here. Please let me know what you think. Sharon

  • Nick, I am outraged on your behalf but sadly not at all surprised. My so called sleep expert behaved in an almost identical manner to yours. My GP was very helpful when i finally abandoned the sleep consultant - unfortunately only after months of misery - and prescribed oxycontin which was bliss (but did ultimately prove difficult to quit with unpleasant withdrawal symptoms - though nothing like as bad as withdrawing from the dopamine agonist).

    One other thing which you could consider (please forgive me if I am repeating myself) is ordering some kratom from Holland. Unfortunately, it is not legal in the UK but I found it really helpful for rls and at least you can get it without a prescription. It has also the benefit that it is not nearly as addictive or quick to cause dependence as other pain meds.

    I don't know much about kratom - am not a recreational drug user - but the shop I order from ( seems to be excellent, the quality of the powder they send me has been consistent and they send it in very anonymous packages and in small, quantities (100g) so if it doesn't work, you aren't too out of pocket.

    Good luck, Nick. Keep strong. You will find a good solution. Unfortunately many, many people have experienced the same frustrations with their supposed health carers and eventually most people find a health professional who is prepared to work with them.

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