New and looking for advice!

[catherinem13]

I am 16 years old and have suffered extremely severe RLS my entire life (although not totally diagnosed but I am 100% sure). As a child I leaned to deal with my tormenting symptoms which I thought were just crazy, unique habits until finally it became completely unbearable. As I've got older RLS as been cutting more and more into my daily life until the point where now I feel that it is ruining it. I have been to my GP 3 times (after being told it was all in my head the first two times) until I finally found a doctor who listened and I am now seeing a neurologist. Due to my age they are apprehensive about medication but I cannot bare having a persistent urge to move my legs (and arms) for up to 5 hours a day and even more at night. My RLS is stopping me from going out, to the cinema, going on holiday and completely stopped me from studying for my exams which have made my chances of getting to university very unlikely. I feel depressed and frustrated and desperately want some clarity! I have tried all sorts of vitamins, stretching, exercise, yoga and taking both hot and cold baths but none have made any difference! Anyone got any tips??

[Hidden]

Hi welcome to the forum, sorry you are struggling with rls so severely and at such a young ageWhat is the neurologist actually doing to help you then if anything? Have you tried any medications at all such as painkillers? Does it run in your family? Sorry lots of questions but need to get a picture, Do you sleep at night? What makes it worse or better! X

[catherinem13 in reply to Hidden]

I've only seen a neurologist once and described my symptoms and they basically just told me to make another appointment and to come with my parents so in other words, they've done nothing yet! No I haven't tried any medication but I'm quite lucky that I don't experience a lot of pain, it's more like pulling, the feeling to 'kick out', discomfort and sometimes cramp. And yes, my mum, gran and cousin all have RLS which is something I only discovered very recently! My cousin is only 9 and is equally as bad as me but her family know nothing about RLS and are on the same boat that I was until very recently thinking that I was crazy! I never connected my condition with my mums because hers is so mild i didn't think they could even be the same. And yes I do sleep at night, it just takes me hours to get there. It used to be restricted to purely nighttime when I was trying to sleep so I learned to move my legs and deal with it. However in the past year or so, it's been more and more in the evening and sometimes afternoon! It was particularly bad during exam time when I was under a lot of stress and anxiety to the extent where I could barely cope! It's also a lot worse with tiredness, which has been a complete nightmare as I've had glandular fever and chronic fatigue- making RLS more persistent and horrible! Xx

[Hidden in reply to catherinem13]

Oh your poor thing! It sounds like you have what is called primary restless legs which is the tyoe that is genetic the same kind as me but luckily(?) Mine started in my mid twenties, my mum and daughter have them too.You must go back to the neurologist and yes with a parent or if thats not possible is there an aunt or someonecould go with you.Write everything down about how this is affecting your life, you must get over to them how terrible this it.As you went went without support and are only 16 I dint think they are takingnyou seriously.We on here totally understand what a dreadful condition rls can be.There are lots of meds, maybe thete are reasonswhy they aaren't suitable for young oeople but I have heard of children on treatment so there iscsomething you can try.All meds have side effects but this needs to be balanced against the impact this is having on your life.Learn as much as you can about rls so youhave some kknowledge before your appt.A great website is rlshelp.org.It tells you on thete things do avoid because many meds lije antidepressants can make legs go nuts.It tells about meds that do work, learn all you can.Some people have low ferratin iron which makes legs worse but yours more like6 genetic still get it checked, Some people find heat and hotwater bottles help but otherslike legs to be cool we are all different, Come on hete for support but most importantly get back to neurologist with an adult and make him listen, Try to be calm and stick to the facts .Wish all the luck, do let us know how you go on sending a hug ,, kim x

[Hidden]

Ps please try and get the parents of the 9 year okd to get her accessed and realize this is a genuine neurological condition x

[catherinem13 in reply to Hidden]

Thank you so much for your help! Yes I am trying to learn everything I can to help me and get a better understating of it, I will definitely push my case to them! And yes I definitely will, I will tell her parents everything that I learn along the way. Thank you! X

[Hidden in reply to catherinem13]

No proobs, you are obviously sn imtelligent articulate person but safly some docs font take young people seriously and as your mum has a mild case she may not realise how bad your symptoms are, they are interfering with your career and social life.Maybe print off some info to show your family from rls UK. On a practical note mske sure your school/college are aware and make adequate provision for you to be able to get up I lessons etc.Maybe a note from your doc would help there x

[Hidden in reply to catherinem13]

Was your RLS misdiagnosed as ADHD and do you know if you have been on any drugs for ADHD? Are there any other pills that you are taking for anything else?

[BobM]

Hi and sorry to welcome you here at such a young age. I too think I have had RLS since birth (I am now 56) and of course it was undiagnosed for many many years. I recall as child always being told to sit still, that I had a round bum(?) and even later couldn't join meditation groups for example because I was never still!!! and at the cinema always needed to sit on the end so I could move around, which did begin to annoy my friends as thier choice of seat became very limited!!!

It never became tolerable until it was medicated I am afraid to say. I dont know what the effect of long term meds on a teenager will be, I do feel you should try as far too much life for you to live yet.

All the best, stay chatting on this site as some very good folk on it.

Kindest

Bob M

[catherinem13 in reply to BobM]

Hi Bob at what age were you put on meds that helped? And how many did you try before you found an affective one?

[BobM in reply to catherinem13]

In my 30's before I was diagnosed and it was 15 years before I was on suitable meds. Now having said that things with RLS are somewhat better today and if your Dr isnt up to speed then move on!! Seriously you MUST move on and find a decent RLS Dr as this condition is going to take over your life!!!!

I take Morphine tabs (numb my body down) and liquid as a top up, Gabapentin and Pramipexole and they work most days.

Kindest

Bob

[Hidden]

Hi Leighcath, so sorry to hear of someone so young to suffer with this, but young people can and do suffer with this and alot of doctors do not take them seriously. I hope you get some help soon. P1pp1ns has given you good advise.