kids with restless leg syndrome (rsl)

im a fourteen year old girl with rsl all around. mainly on my legs, arms and sometimes even back and stomach. The arms are the worst though I have told my parents about it and they booked me my family doctor but i will have to wait 4 months because apparently rls isn't "serious" enough. So until i get checked out does anyone know what i could do to make the tickling feelings go away. They mainly feel like there are small bugs climbing all over my me. but i checked and i don't have bed bugs. its really annoying though and i can't wait four months:( i also would like to know how i may have gotten rls. I've had it for about 3 months now and dint think much of it but as it got worst i did research and asked my mom about it. thanks! and if you think this could be another syndrome could you tell me? thanks again

19 Replies

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  • Like I said in a previous post to you, be sure to think about any medications or even vitamins or injuries that may have started 3 months ago when your RLS did.

  • Stop eating all artificial sweetener and see if the RLS goes away, 

    it did with me.

  • Hi Ella, I am wondering why you have to wait 4 months to see a GP. Are you in the UK?

    Also who has said that rls isn't "serious" enough" hence the 4 month wait?  

    Kaarina

  • Kaarina, do you find it interesting that the most affected part of her body is her arms, stomach, back?  My understanding of our dopamine system is that dopamine, a neurotransmitter, has to travel the full length of the central nervous system (brain, down spine) to the peripheral nervous system (arms and legs.  Any kink in the spine can act as road block to that dopamine getting to our arms and legs.  So Ella has poor posture and possibly due to some "kink" in the spine.  Poor posture (slumped shoulders) is a pretty high up thing so it makes sense that the dopamine isn't making it to her arms.

    The other likely culprit is the heavy periods and the possibility of anemia.  I'm not familiar with your system but would a trip to the ER, complaining of heavy periods, fatigue, light headedness prompt a simple blood test?  Then hopefully her regular doctor will do an x-ray of her spine. 

  • BiGlyc,

    Ella's parents have booked her in to see her family doctor, unfortunately for some reason she has to wait 4 months.

    Kaarina

  • Good info. Things are making more sense with this explanation. Thanks.

  • Doctors in U.S feel the same way about RLS.  It can wait.  However, doctors in U.S. get very nervous about Anemia and even if they don't see you will insist you come in to their lab for a simple blood test.

  • Hey 🙌🙌 sorry you have to deal with this at this young age. I do hope that it's not rls and the doctors can do something to assist you. 

  • Hi again Ella,

    If you are in the UK, have you visited the rls-uk.org website?  There is a helpline number you can call should you wish to speak to someone about this.

    Kaarina

  • Hi ellamarshalls ,your Dr needs a good kick up the rear for saying it's not serious enough ,if it is RLS which its sounds like it might be ,can be very painful ,four months is unbelievable  ,someone that knows more than I do will explain to you a little better ,does anyone in your family have RLS ? have you asked your parents if they know of brothers or sisters that have these horrible feelings ,in their legs or arms, mainly it is hereditary ,but it is not always hereditary ,as mine isn't ,I don't know how I got mine I do know it's not a nice thing to have ,ask your Dr to let your mum know if he has any cancelations to put you in ,the sooner you get this sorted out the quicker you will be on something to help you ,or if he or she isn't any help I would ask to see another Dr ,someone who at least can sympathise and try to help 

  • Look into peripheral neuropathy.  I have both RLS and Neuropathy. RLS in my case causes a highly unpleasant feeling round the bottom of my legs which cannot be ignored so I have to walk, rub, tap and it usually goes after a while.  Neuropathy causes me cramps in toes, feet, legs lasting hours, bubbly feeling in legs and fee like ants, twitching and extremely prickly and hot feeling in soles and palms, and electric shocks and lots of internal issues.  But I have good days or period of times although they are getting rarer.  

    I try to avoid gluten, dairy, sugar and acidic food as a rule making sure I get all those nutrients from veg, meat, fish, eggs.

    I also went to see a Kinesiologist a couple of weeks ago who advised me to stop other foods... But those are different for everybody.  I am also going to see an osteopathe for my spine as I wonder if it could be because of a trapped nerve or other thing.

    I realise that I have had this neuropathy for years and years but it is only now it has been diagnosed. I am delaying taking tablets but not for much longer...

    But my case is mine and yours at such a young age needs to be sorted. You probably should have gone to doctors without saying what you thought it was. 

    Good luck.

  • Ella, I had posted a reply to your other post, and didn't see this one. I didn't realize you are 14.  Did this posture just recently become an issue? Speaking from experience here- I developed scoliosis about that age, but the pediatrician my mother took me to at the time (in the 60's) didn't have a clue. He just thought I had a high shoulder. I was well over 50 before it was diagnosed, after my back went completely bonkers from lots of back abuse after I married a farmer! This is part of the reason I have dealt with RLS in my arms at times, and could be why you have restless arms. You most definitely need to be diagnosed. I don't know what they do for this now, but it's bound to be better than 50 years ago!! When I found out about it 10 years ago, I researched for myself on "Dr. Google" and found out that early teen years are typical for this to develop if it's going to. Your mother can have you pull your shirt up off your back and bend over enough that she can see your spine. I remember that's how the school nurse checked for it. If it curves off to the right or left in your upper back, it's a real possibility that you have scoliosis. I have one high shoulder because of scoliosis- the bend is on that side. Keep us posted!! If that turns out to be an issue, I'm betting that they may be able to help since you are so very young and catching it early. My back is pretty much set in stone now at 65, and I just have to live with it.

  • This is really an education day for all thanks to Ella.  The vast majority of the world can have scoliosis and never feel so much as a twinge of RLS.  I believe that's because the neurotransmission of dopamine in the non-RLS world pushes pass that kink in the spine like our feet push past grass.  We with RLS have the legs of an ant and pushing past that blade of grass can be quite a hurdle.  So we either trim the lawn ;););) or fix things upstream to rev up that transmission of dopamine.  For some it's the dopamine agonists, for others it magnesium and for me it's iron bis-glycinate. 

    By the way, even though I've posted about this before it's worth repeating.  In regards to magnesium I believe it works because it somehow helps the plentiful supply of dopamine in our brains attach to our dopamine receptors.  Not sure what bio-chemical reaction takes place but in laymen's terms that's supposedly what happens.  Iron is the "nectar of the gods" so to speak.  It is what our dopamine receptors long for and need, especially at night when the flow of nectar decreases.  And in terms of DAs I've tried several natural ones so far.  I tried mustard in water because one or two people swore by it.  I was absolutely convinced it would provide relief yet it did not.  And I took double the dose recommended by the people.  I've tried cream of tartar (pure bio-available potassium) with mixed results and turmeric with mixed results.  If you google potassium and turmeric you will see that they are dopamine agonists yet squeezing dopamine out of our receptors in probably not the way to go.

  • thanks your response was very helpful. i'll get my mom to do that when she gets home. And I've had a hunch in my back for a while now. its been a bad habit for a long time and I'm sure if i try i can fix my posture. thanks!

  • I see people are trying to help, but I have to say I do feel badly for you. BUT, it is kind of a bad idea for us to give any advice to an underage person, in any way. And, everyone will tell you something different. Things we CAN say is hot baths do help a lot people, make sure you are not taking any meds that could make it worse, many over the counter sleep meds, cold med and allergy meds have an ingredient called Diphenhydramine in them and that will make your legs/arms worse. One thing I can give you to read is this web site that is run  by an RLS expert, and I have known him for 22 yrs. Go the the treatment page for lots of good info and also see the "Drugs and Foods to Avoid" list on that page also. We have no idea what your health history is, and if you have it this young, it could be inherited, genetic RLS is called primary RLS. Other than that I really cannot say anything else, since you are so young. it is just not a good idea. If you could get one of your parents to join the group, we could talk to THEM much better and it would not be "out of line". I wish you luck, and am glad people want to help you, but you are only 14, so it is borderline illegal to give a minor medical advice of any kind, since we do not know you at all. I wish you luck, and can say do your homework and the web site I gave you is the BEST. the Mayo Clinic and Johns Hopkins web sites are also very good. So that is my suggestion, and check if you are taking any meds, over the counter or prescription, to see if they are on the avoid list. At your age, we certainly cannot advise you on medications for sure, as much as I I would like to. I have had RLS since I was 14, am now 60. So, I get it, I really do. 

  • Hi ella,

    it would be good idea if your  mom or another family member  joined the group with you, as it would be reassuring for us to know that someone in your family is aware that you are posting here.

    Kaarina

  • Ella, I'm so sorry you have to wait so long to see the doctor.  Any doctor that says any ailment isn't an emergency enough needs to be changed.  Try someone else if possible.  Till you get a true diagnosis you can try using MAGNESIUM OIL, it gives me relief for a while, just remember not all medicines or ointments work the same for everyone.  Rub the oil in the arms or legs or wherever you feel the discomfort, I got this referral from another RLS  person here on this page.  It works for her so I gave it a try and it worked for me.  It will make you feel , hopefully, better.  It's not a cure, RLS has no cure as of now, we all keep praying for a solution for this horrible feeling.  Also, PLEASE, PLEASE, be careful with any medication your doctor might prescribe.  Some meds are more harmful for RLS, you might feel better at first but later make the problem worse which is what is called AUGMENTATION.  Keep in touch and I hope you will see another doctor that will see you sooner.

  • My daughter's rls started with a big growth spurt at 7 ish and went on for almost a year. We didn't realise what it was at the time and it was treated as growing pains, as I have Ed's hypermobilty and she's hypermobilty too so it all gets quite painful. 

    My daughter is 17 now and it's all kicked off again. She has had some improvement since starting to exercise but we are going to try Epsom baths to.

    Do you take antihistamines or one of the trigger meds?

  • Dear Ella sodas are a Nono and likehidden said in her list to you.Doeas anyone in your family have it?They may not complain.I assume you ate English so ask around.A number on this site started early including my-self aged 10.Ask your parents if they are able to switch you to another practice what ever you have it is advisable to find a doctor who can see you .The time you have been given seems unreasonable.Retren RSCN SRN DMW.

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