I don't even know where to begin

I have no diagnosis, in fact I detest doctors. I have however realized something is wrong with me. I don't know anything about restless leg syndrome, but I feel like I have restless body syndrome. It's not all the time, but when it it hits me, I feel like crawling out of my skin. I can't sit still, I'm doing jumping jacks at midnight instead of sleeping. I just fell down the stairs yesterday. My ankle looks bad, but pain is minimal so I'm icing it and getting semi rest. I can't take it. I cannot rest. I'm ok if I can sit still, but I can't.. I'm limping and pacing and writing this...

25 Replies

  • Well if you detest Drs you are not alone here!

    Have you taken a look at diagnostic criteria? Take a look at this:


    Are things worse at night? Are you taking any prescribed drugs - many cause the sensations you are describing. Have you any other health complaints? The more info we have the better we can help.

    Good luck

  • Makes me sad and frustrated that folk detest Drs. Drs get severe restless leg syndrome too i.e. Me and are just as frustrated as the rest of you about lack of help and undestanding. But folk have unrealistic expectations about what medical science can do, how knowledge evolves etc. We all do our best but can't work miracles. It's even harder when it's a condition that unaffected Drs can't tune into ( try explaining to a man what labour pain is like and they can at least observe that! )

    Folk forget just how many medical conditions there are out there to solve. Nor is

  • Sorry, sent by mistake unfinished. Nor is it the front line Drs who do the research. That relies on funding etc.

    Why not just try to help educate and enhance knowledge? It is not Drs fault we have this dreadful condition any more than is anyone's fault folk develop diabetes, cancer, strokes, heart disease, kidney disease.

    It does none of us any good to take it out on folk trying to help. It is really really hard to keep as up to date as possible with constantly evolving science of all conditions, even for specialists.

    And as I said we are humans too suffering the same range of afflictions as everyone else

  • I think the problem is that despite not knowing they don't always listen to the patient. I know many Drs and they have been trained to believe that they and they alone hold all the info and discount much that has been seen by people to be productive.

    Many Drs have limited info on the likes of cannabis and hold firm to old outdated beliefs instead of examining the latest research. This can be very frustrating for those of us who have read and cross referenced the research.

    That said I agree that there is too much for one to know but I believe firmly that a good Dr should only meet an unknown once, after that it is incumbent on them to educate themselves.

  • Totally agree, raffs! Despite saying that my neurologist is a good doctor, he thinks very much in the box and is weary of suggestions that are outside his box. Although he would never admit it, I think he is learning as much from me as I am from him!

  • I agree there are Drs then other Drs just as there are in all walks of life. I think in times past and in early training it was sort of implied that medicine had all the answers but over the years of my career I realised that what we used to say and think changes very quickly and I became very aware that patients are the actual experts. We are constantly learning our entire lives. It is though impossible to keep up to date with everything, even once you become aware of your shortcomings.

    I've had my fair share of arrogant, dismissive Drs who don't believe what you're saying, in other conditions too and I don't condone it for a minute. But that's their personality rather than the fact they're Drs and it doesn't help the kind, understanding, want to help ones to be 'dr bashed' as a group. It's demoralising and very wearing and I don't think helps all of us to get the best out of the medical world ......... just saying ......

    RLS is truly dreadful and has no cure yet That's not the Drs fault

  • And finally. Drs can think out of the box but there are licences for medicines in both the UK and US. To prescribe 'off licence' is extremely risky and can lead to harm for which the dr takes the rap and everyone is quick to sue if it goes wrong. is not just being mean and refusing to prescribe out of ignorance or lack of caring. The more specialised you are the more that tack is acceptable and defensible. I just with folk would understand the pressures and risks. I would give my eye teeth to sleep at night & get relief but I don't expect my dr to put his medical life on the line either

  • Hi Alison,

    I have a good doctor for whatever I have been to see him about. I do not make appointments very often but when I do, he listens and I feel we work as a team. I usually do my homework beforehand and go armed with information. If I mention something and he is not sure, he will make enquiries or whatever and call me back. If my doctor had not listened to me and was not OK with me trying to take charge of my own health I would find another doctor. If I have requested to be referred to see a specialist for whatever, this has been granted. I have also sent a doctor the occasional thank you letter as I have been so grateful. I feel it is good practice to praise as well as to complain.

  • Thanks for replying. My RLS is beginning to kick in and it's only 8pm & I'm trying to watch TV ( but will be doing a crossword standing up shortly, hoping it will wear off again, if not it will be the 1st bath of the night ). Am looking forward to tomorrow am - tired but at least able to relax.

    Hope you all have as good an evening & night as possible

  • I have been well treated by the French medical system. My GP admitted he knew little about RLS. He sent me to a neurologist who, after several attempts to get a grip on the condition decided to send me to a sleep clinic in a French hospital. There I saw an English doctor who listened and admitted that there is a lot which is not known. If I find out anything (usually on this forum) she immediately gives me a prescription and asks for feedback (eg the TENS machine). She will take the trouble to send me a prescription for anything which research has thrown up (zinc at the moment). I know that hardly anything is going to work for ever but at least I feel that I am lucky enough to have found someone for whom medicine is a vocation.

  • That's good to hear and the way things should be and hopefully the way forward for all.

  • Hi Alison, yes it is the way it should be and probably the way the NHS was planned to be before it was over-run with problems.

    I am fortunate to have a doctor who works with me and listens. It must be so hard to clear the mind in between patients so each one feels respected.

    My brother lives in rural France and is very impressed with the French system. He can see the doc usually the same day (sometimes "now") and his blood tests results and scans come back quickly and are given to him.

    He is not in a hurry to move back here.

  • yes I agree, it's the way the NHS was meant to be.

    I'm interested that you find the TENS machine helpful. I thought I had read that it wasn't useful in general so have never tried one though intuitively it sounds as if it should help. Do you have all over RLS or only legs and does it occur every night?

    Mine is worse in legs and especially my left leg but it also occurs in arms, shoulders and back. It's mainly the legs which wake me though. It occurs every night,has done for at least 10 years and a minimum of 3 wakenings and pacing/ doing puzzles/baths etc a night and often more with a mid evening or even early evening onset and often going on till 6am at least.

    If I tried a TENS where and when would you suggest siting in?

    At present I take only Ferrous Bisglycinate (don't know about effect on Ferritin yet ), one 30mg dose of Codeine with Paracetamol at night). Magnesium, Vitamin D made no difference. Pregabalin used to work then stopped and I disliked the side effects so stopped it some time ago. I think it caused augmentation which has never worn off properly so i dare not try a dopamine drug. I am also scared of stronger opiates so at present I am mainly relying on non drug treatments.

    Thanks for your advice

  • Before my RLS was controlled with pregabalin I used to pace the floor for hours, maybe 5 hours in a row, until I was exhausted and felt like I was doing my legs actual harm with the pacing and stretching. I think I have even damaged a tendon in my knee from hoisting my leg behind my back like a lever. I had all over RLS, but relaxing the leg(s) seemed to calm the rest down too. I should add that I never had pains like toothache for instance. My feelings were like an electric charge waiting to cascade down my body.

    When I used the TENS machine I used to put the two gel pads on one thigh about 10 inches apart I would think and turn the mode selector to the fiercest then turn the machine on. This made that thigh ripple like an ocean wave and I could then just sit and relax while it did the work for me. Of course you can vary the effect as kneaded (sorry about that :) ).

    You can easily move the gel pads as required but one area at a time, and there is a helpful leaflet which describes the functions and areas to treat. It mentions back pain, sciatica, strains and sprains and muscle injuries.

    It worked for me, well worth a try.

    Good Luck


  • Thank you. I'm going to buy one & try it. Fingers crossed. Right thus minute I am typing and pacing & writhing my legs & feet at the same time trying to think what to try. Will take some codeine & have a bath & hope I think.

  • Yes, I can identify with writhing and typing at the same time. Often I couldn't do it as I would lose concentration because my RLS was so exciteable and it would sometimes take me minutes to approach the keyboard, stab at a couple of characters and hop away again, going back to correct the letters I missed. Dreadful!

    It is a shame the pregabalin didn't suit you too because the sedative effect of it was exactly what I needed. That is why hot Epsom Salt baths help I think.

    I really hope the TENS machine helps you if only to let you sit for a while while the machine "exercises" for you. Try low settings first because the settings get gradually different and stronger.

    Best Wishes


  • I really like the TENS machine and keep it for those times I cannot settle. Last time I put it on the high setting and watched my thigh getting severely massaged. Serves it right!

  • I'm afraid it made my RLS worse but it had to be tried - glad it works for you.

  • Oh, I am sorry it doesn't work for you. For me I could use different settings to give me gentle to fierce massage. It saved me pacing the floor for (sometimes) five hours. My RLS is controlled with pregabalin now, so not so much need.

  • I so feel for you .... it is horrible isn't it. I have had RLS since childhood I am now 64. I was put on prescription meds 7 years ago and from that day to this I have had zero RLS pain and zero RLS symptoms. go and have a good talk to a specialist.. I could not and will not live without my pain medication good luck mate

  • Can you remind me what you take?

  • Msspice420. Hello and welcome to the RLS Community. We all recognise and know so well the feelings you have described. You are right, if you can sleep and relax for a while you can put up with a lot. That is the cruelty of this condition.

    As raffs has said, look up the diagnosis details and decide if this is what you have. If you have a pre-existing illness please let us know, together with info of any meds you take, even over-the-counter ones.

    If you decide the diagnosis fits then post back and I'm sure you will get great help, advice and most of all, support here.

    Best Wishes


  • Very nice post, Neil!

  • Thanks Jess, isn't it great that we are all here for each other :)

  • Hi Msspice420 we have all talked about and around RLS diagnosis etc but how about your ankle? You say it looks bad after your fall and if it is not painful it may be because of damage. If it was me I would go to A&E and get it looked at. The reason I say this is because I damaged my big toe few years ago and it didn't hurt so I walked to the station on my way to work. It turned out to be broken at the joint, which now sticks out a bit and I have arthritis in the joint. Painful!! That, in turn, often sets off my RLS - so I wish I had followed it up. Just a thought


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