Any tips on dealing with RLS? - Restless Legs Syn...

Restless Legs Syndrome

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Any tips on dealing with RLS?

MetalKitten profile image
12 Replies

Hello there, I get attacks of RLS all over my body, usually starting at my limbs, then moving up to my neck and shoulders, and even my waist.

I am only 16 years old, and moving into college at the end of this month, so I cannot be on any heavy medication, really.

Do you guys/gals have any tips on dealing with the pain of RLS on a daily basis?

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MetalKitten profile image
MetalKitten
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12 Replies
BobM profile image
BobM

Hi speaking as a life long sufferer that also runs around my body, find out what you ingest that makes it worse; for me it was caffeine and anti depressant meds and anti allergy meds, exercise didn't help me and in fact seemed to make it worse. And finally get strong painkillers and numb your body so you can sleep and or function.

Kindest

Bob M

MetalKitten profile image
MetalKitten in reply toBobM

Okay, thank you!

I have been experimenting in the last few months, and caffeine definitely makes it worse.

Exercising seems to cool it down for a few minutes, and sneezing strangely makes it a whole worse.

Also, I know it is strange, but peppers seem to make it a whole lot worse too.

Thanks for the reply!

Kaarina profile image
KaarinaAdministrator

Hi MetalKitten

I am sorry to hear that you are suffering so much at such a young age. Have you visited the RLS-UK website? rls-uk.org/treatment/456743...

I appreciate you wish to avoid strong medication at this stage. Do you have a sympathetic GP who is also knowledgeable regarding RLS? As RLS is sometimes linked to an iron deficiency in the body, a good first step would be to ask your GP to check your serum ferritin levels, if you have not already had this done. This is effectively a measure of the body's iron stores and should be at least 50 lg/L. Ask to see the number.

Do let us know how you go on and I wish you all the best at college. :)

Kaarina

Hi Metalkitten, have you seen your doctor at all about this. Are you taking any meds at all either for RLS or anything else. Have you asked your doctor for a Ferritin Level test, for us RLSers it needs to be 70-100, below that level and you MIGHT benefit from iron pills. Does your doctor believe you have RLS, as many doctors dont believe someone as young as you can suffer it. But, young people do, and even younger than you. Does the RLS keep you from sleeping at night, everynight or only sometimes. You can try all the tips that most of us have tried, as in not having caffeine and that includes fizzy drinks, alot of them contain caffeine, and some find certain foods can trigger it off. Ice cream, sugary food can be a trigger for alot of people too also alcohol, i know you are only sixteen but if you do have a tipple which alot of youngest do, then that is another one to look at. Here is a website for you to look at, the treatment page has a list which gives meds, food etc which can make things worse. rlshelp.org scroll down past the meds for RLS.

Hi metalkitten, I have published a post on RLS that might have some information that will help you. I remember the first time I experienced RLS was when I was in college, and I've dealt with it for 40 years since. There are some reasons for RLS that you can correct yourself including diet and medications that cause the condition. Give this a look and see if there's anything there that can help you, and please keep me posted; I'd love to find out if any of this helps, and if so, what specifically. chronicdiseaseprevention29....

MetalKitten profile image
MetalKitten

Thank you everybody for the replies, and sorry for the long while it has taken to reply.

To answer a few questions:

1- The symptoms of the RLS is weaker at night-time (which really brings up the question if I have RLS, but my Doctor seems to think I do, and me too). It seems to go away when I lay down, but it is terrible before bed, or just when I sit on chairs.

2- Naturally, drinks and foods that contain things such as caffeine make it worse, but I love coffee too much to give it up! :P

3- When the attacks get really bad, I like to get up, do a few stretches and clear my system out a little. That helps it, but it is still bad.

4- I have suffered from RLS for about 4 years, and I remember the first attacks being when I used to walk to school. The areas of attack would be my lower back, waist and my ankles (this made me look a little funny when I walked). I have only recently gone to the Doctor about it, though.

I have another appointment with my doctor in a few weeks' time, and I will bring it up with her then, and ask to test my serum ferritin levels (I'll have fun making myself look like an idiot saying that one!), so I'll keep you all updated!

Kindest Regards!

-Metal.

MetalKitten profile image
MetalKitten

Oh, and I missed out an important question from Elisse!

I do not currently take any medication for any conditions, apart from the odd hayfever tablet when I am feeling a little under the weather.

Hi Metalkitten, going by what you are telling us, i am not completely sure you have RLS. Look at the link i have put on. Its the criteria for RLS. RLS attacks happen when resting or not moving, not heard of anyone having a RLS attack while walking.

MetalKitten profile image
MetalKitten in reply to

I get the attacks sometimes when walking, sitting down, definitely, and when laying down in bed, it's my shoulders that always need to be stretched and moved.

I know it is abnormal, but my Doctor seems to think I do have it. The last time I went, she told me to do stretches when I have an attack. That helps slightly, but it resumes when I sit back down.

irlssg.org/diagnostic-crite...

Sorry i forgot to add the criteria to my last comment. Do you have the urge to move, do your legs jump, and you cant resist that urge to move them.

catherinem13 profile image
catherinem13

Hi there,

I am also 16 years old and am worried about what mine will be like when I move away next year so I understand what you're experiencing. I have discovered that caffine makes mine worse particularly at night so it's maybe worth trying to cut it out. However since you mentioned college I'd say mine is normally worse if I know I have loads of work to do at night (school wise) and find that if I try to study etc during any spare time during the day or early evening it helps reduce the pressure! Might not work for everyone but it helps for me :)

cumoneileen profile image
cumoneileen

I have suffered RLS for 50 years (it gets worse as you get older) the last 20 years has been a nightmare. I discovered taking magnesium+vitaminB6 £1 from my local Savers store 1 a day. have been able to half my Ropinirole!! I have tried every thing over the years but this has been the best result ever.

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