I saw my GP on Thursday. I took another copy of the Mayo Clinic guidelines with me.When I told him about the tingling and aching in my legs, he examined then with a Doppler, he did not do a neurological exam.I explained the guidelines would suggest the need for an iron infusion considering my nightly symptoms over the past 6 weeks. He told me it was ‘American rubbish to make money’. I offered the printed research to him, he gave it back to me saying ‘ he couldn’t have his office filled with paper’I asked if he felt I may need B12 as my levels were quite low. He said ‘that’s nothing to do with RLS’. I questioned this and he then looked it up on his desktop and eventually agreed to prescribe B12.I told him that I was frightened for the future and really could not survive on so little sleep for the next 3 months while hoping the iron might help.. He didn’t even acknowledge me.He has prescribed Codeine Phosphate 30mg to be taken at night “because this is what I prescribe for all my patients with RLS”. I have taken it over the past couple of nights but it really hasn’t helped. My problem now is actually getting to sleep. I’m so anxious about trying to get to sleep and having a couple of hours sleep before the symptoms start.I am going to write a letter to the practice and reference the Mayo guidelines and anything else I can find. I do think though that my next step will be a private consultation. Do you think a haematologist initially?
Wasting GP’s Time, so it seems - Restless Legs Syn...
Wasting GP’s Time, so it seems
You definitely need a private consultation. You're wasting your time with this practice and not getting the help you need. American rubbish - unbelievable.
sorry to hear of your experience which unfortunately mirrors so many of us on this site. However do keep trying with the codeine - it is a step forward. I have had severe RLS all my life and for many years I was prescribed codeine 30 mg at bedtime which worked pretty well.
I assume you have stopped the omeprazole as this will definitely make RLS worse. Codeine is perhaps not the best answer for you but may really help as it builds up in your system and until you get something better. Good wishes
Thank you Jelbea.
I have stopped the Omeprazole now. I will persevere with the Codeine
Hi Dires - As Sue says buprenorphine would be much better than codeine but in the meantime you should try the codeine. As I have said it worked for me for many years and I often wish that my GP at that time had let me have 45 or 60 mg codeine and I might not have needed the stronger opioid for some considerable time.
I see you were a palliative care nurse - a very stressful position- and I can fully understand your reluctance to go on stronger opioids. What it all boils down to is "quality of life" and what is necessary for you to get the best possible result with which you are comfortable. My GP surgery is as poor as yours with absolutely no support for patients suffering a life-changing condition. The fact that they do not even want to broaden their knowledge is rediculous. Most people like to continue learning and at 81 I still learn so much every day.
I hope you get some relief very soon and send you good wishes
It’s wonderful that this forum offers such empathy and support from people like yourself. Many thanks
I fully agree with you
When you do see a doctor ask for buprenorphine instead of codeine which is a weak opioid.
Thanks Sue. Do you feel this is better than Codeine?
Much much better and is what most people use.
Even though I don’t have pain as such?
You don't have to have pain. It helps your RLS just like codeine would if it were stronger.
Thank you Sue.
I am a retired specialist nurse in palliative care and I used to prescribe opioids for my patients. I think this may be why I am struggling with the concept of using opioids at this stage in my RLS journey. It feels that there is no going back once opioid are started.
In my head, I felt that while I was waiting for my ferritin levels to come up, I would just need something to help me sleep. Then I could consider the other options, if raising the ferritin, hadn’t helped OR I could try to get an iron infusion to speed the process up. Am I wrong in thinking this? Should I be aiming at starting treatment now and if so, why?
I’m just trying to get my head around it all.
That's very understandable.
But there is a major difference between opioids for palliative care, and opioids for relief of RLS.
In terms of dose the RLS is a small one and won't need to be increased as pain gets worse.
Rls just stays the same with opioids.
I've been on 25mg of oxycodone for about 8 years with no ill effects or wanting - or indeed needing - to increase.
Thank you, I do realise there is a difference but I am still learning about RLS and wasn’t sure if the need for opioids would increase as time went on. You have reassured me, thank you.
Did you start opioids after trying everything else?
I was started on quinine tablets (that tells you how long ago 😝)
Than Pramipexol.
It was only in conjunction with attending a pain clinic after spine reconstruction that I was offered Gabapentin, Pregabalin in quick succession and then Tramadol.
I reacted to Tramadol by itching and insomnia and got put on Oxycontin 10 twice a day. Same reaction ,but by this time I knew I was at the end of the road, and stuck it out.
After 3 weeks I settled in ok.
I did have to get Oxynorm 5 to make up the shortfall in Oxycontin cover.
I did ask my Dr for methadone early on in the play, but he was horrified and point blank refused. This seems to be a common reaction among Irish doctors.
I'm happy where I am ,and at age 76 am not looking to change to Buprenorphin or suchlike.
Good luck.
I'm sorry you had such a horrible experience with your GP.Just a quick comment about your fear of taking opioids.
The Mayo Clinic paper states that there is no need to increase opioid medication over time for RLS. Statistics have shown it doesn't happen. Also that people who have RLS are less likely to become addicted than when it is used for other reasons. Madlegs experience with it is very much the norm, and I myself can say the same, as I too take low dose opioids. Hope this helps.
Listen to Madlegs1. Besides you are already taking an opioid - codeine. You could wait 2 month for an iron infusion to work or 3 months for iron tablets to work, but do you want to suffer in the meanwhile. You could ask for Zolpidem or Zopiclone to help you sleep and see if that works.
Thank you Sue. I realise that Codeine is a weak opioid but I’ve only taken a couple of doses. I’m sorry I’m so hesitant and questioning. I’ll get there in the end with your help and the rest of the forum.
Yes you will. And we are definitely here for you.
That’s reassuring
Dear Dires, That is so upsetting and wrong . You shouldn’t have to go privately but if you do have a bit of money you could ring Dr. Andrew Klein at the Nuffield Health, Cambridge Hospital, who does private iron infusions for RLS and other conditions. He is likely to be empathetic and to help you . Try calling the hospital on 01223 370922. I don’t know how much he charges…. LOVE and best wishes and hope that you can hunt down a more empathetic doctor with knowledge or a thirst to learn more and most importantly someone with compassion. 🤗
Hi i don't have RLS but i can definitely relate to that frustration from being fobbed off by a GP i started with chronic health conditions at the age of 31 and have spent the last 9 years of my life fighting with the medical professionals it's exhausting my conditions make life really hard for me i am unable to live a life i rarely am able to leave home and when i do i get pain and exhausted quickly so my body forces me to live a lifestyle of someone much older than i am and i also have a 9 year old son who's life is also affected by my conditions but i have struggled to find a GP etc that cares, that understands how much of my life has been taken from me and how difficult it is just to get through each day however if i see a GP and i don't agree with them or they haven't been useful then i ask for a appointment with a different doctor and continue to make appointment after appointment until i do find aGP that is actually willing to listen and willing to do the best they can to help me i have even moved GP surgery's 3 times so my advice is to keep fighting your corner until you find someone who will do the best they can to help you and i also print information off from the Internet to take with me to appointments they do like to say you shouldn't believe everything on the Internet even if it is from a world famous clinic so i try to get stuff from the NHS website because they cannot argue with that ! x
Well, as those dollar-obsessed Americans might say, you really have pulled a doozy with this one! Most of us here have at some time had experience of a level of wilful ignorance, blind prejudice and absence of empathy that had us questioning how the doctor ever got through their first year of med school, let alone retained a position in a respectable practice. But what you describe here is tantamount to medical neglect! I can only offer you sympathy for your woeful treatment. In your position I would be minded first to ask for an alternative doctor and secondly to complain to the practice manager. The best of luck in your search of a humane GP (of whom there are, of course, many) and a successful course of treatment.
Thank you everyone for your support and words of wisdom. I am a very determined person so I won’t give up.
I agree about medical negligence, exactly what I said to my husband yesterday. We all know the the GP’s and health service in general is overwhelmed, but there is absolutely no excuse for this lack of compassion and desire to help.
Hi
Your GP sounds awful. RLS is a neurological condition, so it is worth trying to insist that he refer you to an NHS neurologist and to a Sleep Clinic if there is one in your area. The waiting list in Glasgow, where I live, is 9 months (!), but it is worth being on the list. If he won't do this, you need to change your GP. After trying many different methods I decided to go private and someone on this site recommended Professor Matthew Walker of the National Hospital for Neurology and Neurosurgery and Sleep Clinic in London. I had one (Zoom) appointment with him which cost £360 (I think later appointments cost less). He wrote a brilliant letter, summarising the severity of my condition and recommending Oxycodone treatment. It was still a struggle to get the NHS to prescribe it, but at least I had a clear, expert opinion - well worth the money if you can scrape it together.
Thank you. There is a sleep clinic in south wales which is not too far away. But I’m undecided whether I need a sleep clinic or a haematologist or both. I’m prepared to pay to get some sensible advice.
I would suggest you still need a neurologist to justify why you need an infusion, as a haematologist may simply look at your iron and ferritin levels and say you are fine. The neurologist should be able to explain why RLS sufferers need higher iron levels than normal and confirm that it’s a valid course of treatment. The haematologist will them be able to assess whether it’s safe to do so and give you the right dose. That’s the approach I’m taking and I’ve made a private appointment to see Dr Fackrell in Bath who is a neurologist who seems to be up to date with RLS treatments. Other people on this forum have gone direct to the Haematology departments in hospitals and after a lot of effort persuaded them to do the infusion but it seems like it could be hard work.
That’s interesting. I had phoned Dr Fackrell’s secretary last week. She said I needed my GP to refer. Is that what you did or were you able to refer yourself?
When is your appointment? I’d be really interested to hear how you get on if you’re happy to share that with me?
Yes, I asked my GP to refer me. A previous GP at the practice had referred me to a neurologist in Nottingham who didn’t regard iron infusions as a treatment worth getting involved with and had just offered DA’s or possibly pregabalin. I explained to the second GP that I was seeing some benefit from iron tablets but just couldn’t get my ferritin much higher and that Dr Fackrell was up to date with treatments and that I wanted to go privately and he was good enough to write a referral letter. I’ll update the forum on how it goes. If we do find ways to get the treatment we need then it should be shared. I’ve benefitted a lot from other people’s experience.
Hi
Have you managed to get your iron infusion yet?
Do you take any drugs for your RLS?
I don’t take drugs for the RLS. I was on pregabalin for a year for neuropathic pain and it didn’t seem to help with sleeping although at the time I hadn’t diagnosed the RLS. I’ve had a letter from the consultant to my GP recommending an infusion but GP hasn’t got back in touch. I’ll chase in a week or so and update the forum when there is news.
I have had similar issues with the docs in the past, I have sort of given up on them lol ........... Have you tried the magnesium spray? I use this at night and rub it into my legs it does help a lot for me. I try anything to see if it works 
some people have said it does not work for them - I got instant relief, a lady I spoke to said it was around the 4th day she got relief. hope you get it sorted big hugs xxx
I have just had a thought. My 79 year old husband of 51 years had a really bad accident in May 2022. He very nearly killed himself falling off a ladder. I slept on the floor at the side of his bed in hospital for a week but suffered dreadful anxiety when he came home. I had had insight into life without him and I didn’t like it. I spent many a sleepless night thinking about the accident, going over it in my head.
I’m wondering if this triggered my RLS, as the first bad episode was last November which lasted just over a week then resolved completely. This episode started over six weeks ago and hasn’t resolved at all.
Is there a known link?
Any stress and that certainly was one will do it although once the stress goes away, it should settle back to what it was before.
Hi Dires, there's a definite link between stress and RLS but it seems to be more direct than what you experienced. As in, if I'm stressed, then my legs play up... on the day (or night).
Did you begin a new medication at that time? Did your diet get worse, maybe bringing your ferritin levels below what your body needed?
I am so sorry that you had the experience you did with your GP. I would agree with comments and go to a different one, taking printouts of all the relevant documents with you.
I have tried every cure known to mankind and finally (thanks to this forum) was encouraged to ask for buprenorphine. It was a game changer and I have been on it now for three years. I did have to increase the dose until I found the one that covered my symptoms which are aggravated by the pain from advanced osteoarthritis. Now I'm on 20 mcg patch and find it pretty much covers the RL symptoms and the osteo pain.
I still have to watch what I eat as sugar is a definite trigger as well as some other things, including anything with a high GI. I'm a lot more able to tolerate small divergence from my strict regime though. It's been a godsend. I found that I am intolerant to gluten and lactose and when I avoided these things, I was able to absorb iron from my diet a lot easier (due to intestinal health) so maybe something else to consider.
Good luck with your search for a good GP/neurologist/haematologist.
Many thanks
I'm so sorry you were treated in this dismissive way. Is it possible to change doctors? I think a letter is a good idea.I used codeine successfully for several years.It could work for you if you find the right dose.Good luck.
Just a point i found. Codeine on its own didn't help me at all, but co codamol 30/500 works most of the time. I've been taking it fir years and haven't had to up the dose.
Oh my days this sounds so much like what I've been through till my GPS admitted they didn't know anything and I have been having telephone consultations with a neurologist after a looong period of time fighting to get help it is a constant battle . I did the same took the print outs and they said they didn't have time to read it !! It is heartbreaking u feel so helpless !! Ive been in your shoes except for the 'its an American thing' what kind of medical professional is this ?? I kept going till my GP referred me to my neurologist I cried when he was so understanding about this dibilitating condition. I also went private it helped for a bit they put me in clonazapam which helped for a bit then didn't !! So back to the GP again !! It's a long hard fight I hope you get an understanding medical professional who understands this condition and how it affects you take care and good luck 🤞
Thank you for your caring response.
Good luck to you too in your battle for some sort of a normal life.
You have a life to lead that hopefully will not include worrying about a doctor who refuses to read a legitimate paper discussing the most up to date treatment for your disease.
With the right help there is a very good chance that you wont have to worry about sleep and just enjoy going to bed.
RUN AWAY and find another doctor. Today! If you really need to spend your precious time writing letters then write to the practice and tell them you are changing doctors but preferably spend that time finding another doctor and forget this hopeless sod.
Even if you have to travel to London a couple of times a lot of follow ups can be done over the phone.
The next urgent step would be to get an iron infusion to raise your ferritin level to about 350 There is a reasonably good chance (possibly a bit more than 40%) that your problem will go away with an infusion. I think you'll find that once you get a good doctor you will find that you can get the infusion very soon because the big hospitals do 100s per day mostly for illnesses other than RLS. You just need one seat on the production line for a half hour.
A good doctor is one who has read the 2021 Mayo guidelines or will thank you for telling them that his old 2018 version is out of date.
Oh this made me feel so tearful after yet another very disturbed night. The concern and kindness I have received from this forum is overwhelming. I cannot thank you all enough.
I’m not sure though of the best way to find a GP who is knowledgeable on the subject.
My GP told me they are not experts in this subject I just kept making appointments to tell them I'd had a bad spell of RLS I think they got fed up of me then they referred me to the neurologist in Sheffield he is really understanding and has made me a medical plan. Can you not ask your GPs to refer you to a neurologist ?? ??? Keep me updated with your journey good luck 🤞🤞
Dump that jerk. What kind of doctor treats a patient like this. He's clearly not even willing to listen! Patronizing arrogant narcissistic jackass.
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