RLS during the day

[catherinem13]

I've read that everyone suffers very badly from RLS at night but as I've got older, despite being 17, I've noticed that it cuts more and more into my afternoon/day! I can barely sit still from 3pm onwards. Been waiting 4 months for a neurologist appointment on the NHS and still no word. Struggling so much and it seems like nobody is trying to help me! Feeling the need to rant after a series of very bad days

[Hidden]

Hi Leighcath, alot of us get RLS during the day aswell as at night. Its only the meds that keeps it at bay night and daytime. And it can still breakthrough in the daytime for some people and at night. Have you tried any non med treatments to help you. Have you had your ferritin level checked yet by your doctor..?

[catherinem13 in reply to Hidden]

I've literally tried everything non medical and nothing helps! Sometimes if I do an extreme amount if exercise (2/3 hours plus) if can make me sleep quite quickly but nothing practical or sometimes it can make it worse! I've got an appointment with the doctor next week to get a ferritin test and chase up what's happening it's just so frustrating when it's such a long wait for help for something you face everyday

[Hidden in reply to catherinem13]

Hi Leighcath, I would get in touch with the neurologists secretary and ask if you could have an indication as to how much longer you are going to be waiting for your appointment. IIf you or your family could afford it you could enquire about a private appointment , whete I live it costs around 175 pounds.

Whilst you are waiting I would ask your GP to try you on painkillers many people do well on tramadol.Even if your rls aren't painful it can for some people calm down the urge to move feelings.My daughter is in her twenties and up to now her symptoms are mild but as she has the genetic type they are almost certainly going to get worse as she gets older as mine and my mums have done.My advice to her would be try painkillers or gabapentin/pregablin before moving on tonthe dopamine drugs.This is because of the risk of augmentation they can cause over time.As you are so young and likely to need treatment for many years I would advice you the same.

It maybe thete is some underlying cause causing your severe symptoms which is known as secondary rls, if so and the cause is found then there is a good chance of recovery.

Yes get your ferratin done it needs to be very high in range over 70.This only works for some people, mine is 80 and my rls is still severe without meds.

Chase up that appointment, are you taking someone with you this time as I think you said that you didnt feel taken seriously on your last appointment,

Good luck, let us know how you go on .kim x

[Hidden in reply to Hidden]

p1pp1ns! In Sweden we says that ferritin should be close to 100 if you have rls. Ongoing inflammation in your body will rise the ferritin level and then it is the trans ferritin they should look at. Just an advice.

[Hidden in reply to Hidden]

Thanks Swedish, yes between 70 -100 seems to be what's advised here in uk. X

[Hidden in reply to Hidden]

Since 2008 our medical authorities says that rls patients shall have iron injections if we are under 50 in ferritin because then it is imposssible to rise it with pills. But it is still very hard för some people to get their doctors to understand that, they are still afraid to give iron injections. We do always have to fight and be very educated about our terrible desease.

[Hidden]

Meant to add extreme exercise will make most sufferers symptoms worse especially close to bedtime.

Remember I am not medically trained and any advice is from my own experience and research. X

[Annieapple]

Go back to your GP as soon as possible & tell him your symptoms are getting worse, that you feel desperate, & that you have not had an appointment yet from the Neurologist. This happened to me & my GP followed it up & I got an appointment within a week. I would also try phoning the neurologists secretary directly if that doesn't help, but going to your GP puts on record that you are struggling!! They need to know it's getting worse.

So sorry you are having such a tough time & it feels so overwhelming at present. We all feel for you & understand how horrid it is.

[mitziblue]

So sorry sweetheart. I hope you hear something soon. I know how terrible it can be. Hang in there Honey!!! xxx Mitzi

[Ballybofey26]

Hi LeighCath, wish you well. I just joined the forum today. I thought I was chronic, because I've bee suffering from RLS for many years off and on. About 8 years ago it appeared to be due to low iron levels, chronic anaemia and internal bleeding due to another disorder I have called HHT. I come from a family of bleeders. So I got lazer treatment, they zapped me internally, I took loads of iron tablets for several years and went to gym three times a week. Problem resolved till a year ago. Then it's been at times awake every two hours, up, walkabout, stretching etc the sensations sometimes going right up to my arms and my whole body jerks. It's bizarre. Know what you mean about daytime restlessness. And evening classes, trips in planes and long car journey are horrid! Recently I've tried no caffeine, I already stopped the alcohol years ago, I was taking tonic water for a while, magnesium tablets and now I'm trying quinine sulphate. I try hard not to panic and get stressed. Not easy but great to have discovered this forum and website which I literally stumbled on. The med folks really need some training! My GP probably is not even aware of these resources.

Hope your condition improves! Best of luck!