Why does my doctor not believe I have rls? Or perhaps I don't ? What do you think?

I first noticed symptoms when I was pregnant 18yrs ago. I suffered in silence for a few years . My symptoms were left leg 24/7 , worse at night or when relaxed. The sensation feels like an electric current going though leg but fluttery around, never intense in the same spot for more than a few seconds before going to another spot. It flits betwee side of foot, top of foot, calf, front of leg, knee area , groin, and thigh. When my sleep pattern is worse than normal it goes into other leg or arms. Currenly have it in my left arm and left leg. Feels like need to move limb to get relief but only helps if I keep moving, as soon as I stop sensation back.

Doctor referred me to a specialist can't remember what type when as seen a few but they decided my nerves were being irritated by chemicals leaking out of a torn disc so had a back op to remove and fuse all sounded feasible at time but guess what after morphine wore away symptoms still there.. They then decided I had permanent nerve damage but how can that be when sensations peak and trough. I have been guinea pigged on all the tablets over the years as they were just coming on to Market. The only thing that helped for a while was over the counter soluble co coda mol better relief than the likes of gbapentin however finally came immune to that and the only thing that helps now is combination of tramadol and amytriptiline . I. Have asked doctor why he doesn't believe I have RLS and he said because I have it mainly in left lleg and if I had rls would have it in both legs all the time !!!

Inow strongly believe it's an inherited condition as my father was always rubbing at his legs and moving them but was told he had furred arteries caused by his diabetes which may well be true but I am now wondering because my 18 yr old is complaining of a crawling sensation in his legs for the last couple of hrs keeping him awake but not as bad as mine but I guess that could be because it might intensify over the years as mine have! What do you think?

16 Replies

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  • Your doctor is soooooo wrong. You dont have to have RLS in both legs to say you have it. I get it mostly in my right leg, sometimes it swaps to the left leg. When its really bad both legs can have it. Somethings my left shoulder and the back of my shoulder blade gets it.

    Yes, it can run in families, thats where i got mine from, my father.had it, altho back then he wouldnt have known what he had. His was not as severe as mine. I have a brother who has it too.

    It does sound as if your son has it too, mine was only mild at his age. Yes, it does usually get worse with age. Mine came with avengence when i retired.

    Tramadol is used for RLS, but usually amytriptiline makes it worse for most people as its a anti-depressant and most of those will aggravate RLS. There are exceptions to that rule, like with most medications.

    Your doctor needs educating about RLS, you need to get some info about it and print it off to show him. A good place to look for info is

    rlshelp.org

  • So right Elisse

  • spot on Elisse, as usual

  • You have an idiot for a doctor. I agree with Elisse that antidepressants can make it much worse as I went on prozac for a short time and my left leg (Yes, just my left one as always) went haywire. Maybe you would be just as well off on tramadol alone. There are a lot of other medications available and if you look round this site you'll see that everyone has a different combination that suits them. i don't know where you live but if you're in the UK I'd recommend Requip although it didn't work for me at all. I take clonazepam and I'd be lost without it. It does sound though like you're going to have a problem getting your idiot doctor to prescribe anything. Is there no one else you can see?

  • Again top adivice

  • Hi Buzzyleg

    That must be so frustrating when your gp is not knowledgeable about RLS. Unfortunately it does sound as if you are suffering from RLS. You can have RLS on one side of the body only but more usual to be both. Yes, I agree you should print off some info for your gp to read. Amitriptyline did not make my symptoms worse but I know others say it does. I feel for you and your son too. It can be hereditory although no one I know in the family suffers from it. This RLS appears to be very individual with symptoms and what works to relieve it and what does not. You gp needs to be informed that one need not suffer from RLS all the time either. Certain things can bring it on like, long car trips

    sitting in a cinema, theatre, long-distance flights, immobilisation in a cast, relaxation exercises, sitting down in the evenings to watch tv.

    Why not give him details of this forum to have a look at!

    Kaarina :)

  • Hi Buzzyleg,

    I really sympathyze with you because I also have a doctor who does not understand RLS, what to do about it. After hip surgery, the RLS got much much worse in the leg that was operated on. In order to cope I took more ropinirole (4-6mg a day), which then backfired on me and gave me a terrible reaction. Still, my doctor would not give mirapex, which I asked for. I then contacted rlshelp.com. That helped!! I printed out my questions and answers, showed it to my family, and my daughter then came with me to see the doctor on next visit. Suddenly he listened and changed the medication!

    There's no doubt that RLS can effect just one side of the body. Perhaps ther's a pinched nerve in the buttochs or somewhere, making the condition worse.

    Hope you get some help soon!

  • Change your Dr and I mean the surgery not just an internal move!!

    Regards

    Bob M

  • Hi BobM is soooo right if possible change your doctor if your surgery has multiple doctors OR Change to another GP Practice altogether!!!.

    I went to three doctors within my GP practice before i was taken seriously!!!.

    So it pays not to be Fobbed off, if one doctor does not sympathize with you +,

    Your condition another one will.

    I wish you ALL the best if your efforts to get it diagnosed as RLS,

    As your symptoms do seem just like those of RLS. If you go to rls-uk.org/

    On their home page is a window entitled do i have RLS + their is FOUR,

    points you have to answer yes to + if you do then you 99.99% have RLS.

    good luck.

  • have you seen a neurologist or a sleep doctor? YOu said you were referred to a specialist, so I am assuming it wasa neurologist. I am going to say in plain English that your doctor does not know diddly about rLS if he thinks you have to have it in both legs ALL the time. It is time to get tough with him, and say of he he cannot help you, and the specialist you saw cannot help you, then get a referral to a sleep lab. Sleep doctors are the best for this, plus you should get a sleep study. Lots of other sleep disorders seem to go hand in hand with RLS. I have had 2 back surgeries and 3 neck surgeries for other reasons, but no back surgery has ever cured or helped RLS. As far as I can tell it juts makes it worse.

    speaking of meds, I see you are taking Tramadol and Amitryptiline. Tramadol is usually one that works great for some people because it is a synthetic narcotic. The Amitryptiline is a tricyclic antidepressant, and is widely known to be one of the 2 classes of prescription meds that can cause or make RLS worse. Not good. How long have you been on it? The other antidepressant class to saty away from is the SSRI's (Paxil, Prozac) And, over the counter meds, such as sleep aids and allergy meds, quite a few of them have Diphenhydramine which will make you crawl the walls. Also, anything with pseudoephedrine will set the RLS off most of the time also. Moe detailed info on this can be found on rlshelp.com and health.com has a great RLS section with patient stories and videos, etc. Both of these sites are kept very up to date. some other ones, not so much.

  • Oh, and as far as genetics, they discovered the gene for RLS in 2005, and another in 2007. so, it is definitely genetic in some families. That is primary RLS. Secondary RLS is instigated by underlying causes, like low Ferritin levels. Not iron serum, but a whole dfferent test. some people are helped by iron infusions, but very few. Didn't work on me, but that does not mean it won;t on someone else. :o) Both my sisters, both nieces, and my niece's kids all have RLS and PLMD, so we have our own little group right here. RLS is progressive, there is no cure, but there are things that can be done better for you than what is being done now, Buzzyleg(s) :o)

  • Thankyou one and all for your views and comments. I will be moving in the next few months so will definitely be changing GP practices which hopefully, in turn will find a doctor who is more informed on rls.

    I have looked at the self diagnosis on the site and did answer yes to all questions....

    Over the years, when being prescribed different meds, I was given amytriptiline on its own, and by itself it had no impact what so ever, however in recent times when the tramadol started to lose it's power, and I was climbing the Walls with the vicious cycle that lack of sleep causes, I went back to GP, and asked to go on a stronger dose of tramadol but the gp didn't like that idea and suggested combining with amytriptiline albeit still not recognising prob as rls but in the knowledge that I did have a nerve prob in my leg. I was sceptical but agreed to try it for a week, and I have to say, taking both, before I go to bed, works a treat and has helped for the last few months. Recently I made the mistake of not putting my repeat prescription in early enough and the few days I was without the tabs showed me how effective they were, because within 24hrs I couldn't sleep through the intensity of the sensations going through my leg and the following day both legs!! I will let you know how I get on at my new GP when I move, kind regard buzzyleg

  • As I have said before Amitriptyline did not make my symptoms worse, although I hear it does for others. I am wondering if it makes a difference if one is only prescribed a low daily dosage. I started off at 10mg and went up to 25mg and took it for one year. For depression, the daily dosage prescribed is much higher.

    Kaarina

  • Sadly, Tramadol does not seem to make any difference to my RLS: I take it for arthritic pain, as other problems prevent taking non-steroidals like Ibuprofen etc. But I still get the RLS! For those for whom Tramadol does work, that's great! Just goes to show what a peculiar beast RLS is, that different things work (or not) for different sufferers!

  • I also take amitriptyline, take it for fibromyalgia and sleep. For years I refused to take it for sleep (fibro has only been diagnosed in the past year) because of fear of ramping up my rls. I only take 20mg at night and it has really helped my sleep. I've gone from about 3 hours nightly to around 7 hours. I have been taking it for a year. For rls I take requip and tramadol. The amitriptyline does not appear to have had much ill affect on my rls.

    My doc was running out of ideas with regard to my poor sleep and agreed that if I tried it and found my rls getting worse, that he would do his utmost to help.

  • Your doctor is wrong, or as Elisse said is soooooowrong. I'm sure there's loads of us that get it in several variations of presentations. I get in one leg at a time normally but it's never just the left or right, it can be either with not specific way of determining why. I don't have any heritary factors. Mine started like your i.e. gradually increasing in severity. I was referred to a neurologist who seemed to know more about it, but she did say it's not curable. She prescribed Pramipexole, but did say that, like a lot of the medicines used, it may lose its effect after a while. I at least get relief without and am prepared for a change in medication when necessary!

    Don't take any old nonsense from the doctors. Your doctor may have referred you to the wrong specialist.

    Let us know how you get on.

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