Scared of diagnosis/lack of

Hello everyone.

Im pretty sure I've had RLS my whole life. I remember when I was younger I used to get really bad pains and was uncomfortable all the time. My mum always told me it was just growing pains. Throughout my teens and early adulthood it didn't really bother me and I could cope with all my symptoms. But since I a had my little girl 2 years ago my condition has got steadily worse. I'm now constantly tired no matter how long I sleep for. And that's if I manage to get to sleep at all. Some nights I end up just walking around the house in the dark.

It's started really affecting my day to day activities and is really starting to get me down.

Anyway. My main point is that I'm kind of scared to go to the doctors. I hate going to the doctors anyway. But I just feel so afraid. If he tells me I have it what will happen? And what if he says I don't? What else could it be that I have? So nervous about it all which is making it worse it just feels like a horrible cycle of stress and no sleep ☹

23 Replies

  • Hi Bex,

    No one likes to visit a GP so I do appreciate how you are feeling but sometimes it is necessary especially as it is affecting your quality of life. Please visit the RLS-UK website You will find information there about RLS and then you may well feel more confident to make a GP appointment. Unfortunately not so many GP's are up to date with RLS so it is best to educate oneself first, if you know what I mean. ;) Knowledge is power. There is a Symptom Checker here!diagnosis/c98c so you can see if you fit the RLS diagnosis criteria which I am sure you do. Your ferritin levels may well be low so this should be checked out via your GP.

    I am sure others will reply soon,

    Look after yourself,


  • Thanks Kaarina

    I think I'm just putting off the inevitable really. But I've just got to the point now where I can't cope with it anymore so I think I'm going to have to go.

  • I agree Bex. Take a look at the website and make that call to the surgery. Are you in the UK? Do let us know how you go on.


  • Yeah I'm in Yorkshire. I'll message you and let you know what they say. My surgery are useless for appointments so it will probably be about a week before I can get in

  • Bex I am in Yorkshire too in Sheffield x

  • Hey Pippins

    I'm in Bradford 😊 It's just nice to know I'm not the only one with this weird syndrome!

  • 10% of the world's population has it so you are not alone.

  • Hi Bex, if you phone surgery early morning you can usually get in as emergency that same day, if you tell them you are In pain & can't sleep. My surgery same, last time I needed to go 2 of the doctors were off & they told me 2 weeks. Crazy, but when I rang at 9 the next morn.I had an app.for 2 pm.

    Luv Jan ☺

  • Yeah I've tried doesn't matter what time I ring. Apparently I don't need an emergency appointment. Bloody useless. Booked in for the end of next week. I've managed to last 24 years with it so I'm sure another couple of weeks won't be too bad.

  • That's bad isn't it..doctors are just so busy now days. They build all these new houses, estates etc. And all of a sudden you have another 200 ppl.going to same doctors.

    They did this were my parents live and just finished building more houses and one of the doctors has actually closed completely & the other one where my parents go is just overloaded. Same there 2 or even 3 wks before you can see a doctor.

    Don't know what the answer is but it needs something to change.

    Anyway end of week not to drastic a wait & as you say 24 yrs. Doesn't co are to a few days.

    Well let me know what they say & I hope they not to painful in the meantime ☺☺

    Luv Jan

  • Thank you Jan.

    They've started running a drop in clinic at my doctors but you can only go if it's something small that will only take 5 minutes. But it's made the appointments worse cause all the doctors are tied up doing the drop in clinic. Stupid really. Hey ho! I will let you know as soon as I've seen them x

  • a week is pretty good for your side of the pond. ;)

  • Hi Katrina, wow thanks for that symptom checker link. I would say 100% sure I have this RLS I have all these symptoms and had for years. Even as a child I remember calling my mum in the night and I used to have to get her to rub my legs and I thought they could be relieved by someone actually sitting on my legs to stop the sensations. How crazy is that lol.

    It's awful trying to get comfortable because of the pain & feelings & I get the jerks in them to. I could be just sitting and my leg will suddenly jumps. At night it wakes me, sometimes my leg or arm will have this big jerk and makes me really jump.

    I always thought it was all to do with my lower back pain and hip and just the Fibro in general but reading that, I'm now thinking, I have this rls and will tell doctor when I go and see what she says.

    Luv Jan

  • Hi Janet,

    I am pleased to hear that you found the link useful. Learn as much as you can about RLS by looking at some threads on here and also taking a look at other sections on the RLS-UK website. Knowledge is power. Unfortunately there are not many GPs that know that much about RLS so you may well have to "educate" her. A good idea would be to mention the RLS-UK website if necessary. There is a section entitled For Professionals. Perhaps taking a few print-outs to the appointment may be useful. It is important we raise awareness of this condition and this is one way to do it, at the surgery. I hope you can work with your GP as a team.

    Do let us know how you go on,


  • Yes Katrina will do for sure. I will also print out & show her as Well.

    Luckily she is lovely doctor and I'm sure she will be interested if she doesn't know to much about it I'm sure she will want to know.

    I will let you know what she says.

    Thanx again

    Luv Jan ☺

  • We are thinking and wishing the best for you ,

  • Well Bex the only one that can help is your doc and we all hate going to see them, lack of sleep is the worst thing if you have rls you will have plenty of nights without sleep,but you can get help and with the right medication it does get easier ,so many of us. Have suffered and are still suffering so this forum is the one who knows how you feel,good luck you are not on your own,x

  • Run, don't walk, to your doctor. If you're concerned about what he will say, bring supporting information about RLS that you can find and be firm about getting treatment for it. It could be as simple as taking one of the prescribed RLS medicines. I know you will hear stories that nothing works, but you should also know that for some of us we got relief right away. The secret is to find a sympathetic doctor that is willing to work with you to find a solution. Good luck.....let us know how you made out.

  • bexj23. RLS is not painful it's an urge to move legs/ arms etc. (that you have no control over) Please see your GP.

    If you have RLS you can have medication. good luck.

  • You have got to be joking to say rls is not painful


    I had the pain since I was about 24 years old and the Restless Legs started at about 45 yrs old. I am now nearing 80 and have a host of medicines in my possession to keep me somewhat normal. The pain will need a pain killer such as a codine based drug and the restless legs will need something to compensate for the low amount of dopamine you are producing. I am not a professional but have studied these conditions to try and help myself.I also guess you have a thyroid that isn't producing the neurotransmitters that it should. Take all my comments with a grain of salt and use them to ask your doctor if any are on target. Do try to get relief and don't let anyone tell you enduring discomfort is a noble thing or that giving you opiates might cause addiction.

    Everything in moderatin and you will be better off. Please let the forum know your progress.


  • I've had the same problem, painful calves as a child and now restless leg as an adult, I have anemia and possibly B12 deficiency as I am a vegetarian. Is it possible you're lacking in B vitamins and iron? 

  • The best thing to do is to get diagnosed, the quicker you will get some treatment. RLS sucks, but there is help to be had. Just remember the first thing you try may not be the thing for you. It is a lot of trial and error sometimes to find what works for YOU. No one med works for everyone. The sooner you see the doc the sooner you go on your RLS journey to find out what will help you. ;) Being scared in not productive or helpful. knowledge is power, so start doing your homework.

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