RLS, A DISABILITY OR NOT

[Mrappleton]

I THINK, AFTER SEEING HOW MANY OF US SUFFERERS THERE ARE, GOVERNMENTS WORLDWIDE SHOULD SERIOUSLY LOOK INTO THIS BIG TIME AND SERIOUSLY LOOK AT CALLING IT A DISABILITY BECAUSE OF THE WAY IT AFFECTS YOUR LIFE 24/7

[Hidden]

It doesn't come under the disability act in the UK but it most definitely is debilitating!

[Mrappleton in reply to Hidden]

That's the problem here in the UK, cutbacks and everything else, sometimes think you have to be dead or dying before you get any help or recognition.... what's it like in New Zealand ???

[Mopsy1950 in reply to Mrappleton]

They know even less here than overseas very much on our own here I think people think I'm just a hypochondriac( wow big word ) don't even know how many suffer here in NZ only met one lady on here so far it's not talked about would love to get people from here on this I'm sure there must be a good few of us

[Hidden in reply to Mrappleton]

I don't think we can blame the cut backs. It's just that Jon sufferers just don't get it. We need someone in government with RLS. There must be some! If there are Drs with it like me there must be some in all walks of life

[Mopsy1950]

Maybe if the Priminister or someone high up in government ,in someone's country had RLS they maybe realise it should be treated as a disability of some sort , but as we all know if you don't have it yourself no one understands ,it like a brick wall

[Pippins2]

I have come across some people who have been awarded benefits but it has been for the effects of Restless Legs rather than the RLS itself For example if it causes depression /anxiety plus any side effects of the meds However I imagine it would be quite difficult to get ...Pipps

[gypsy49 in reply to Pippins2]

when I first got assessed for ESA ( in UK ) I was put on work program me being me didn't play by the rules by yr 2 the guy in the work program (the adviser) went with me to the jobcentre to find out how I did in my second assessment seeing they'd not let me know 6mths after me sending in form esa50 they put me back onto work program he got it sorted to ask for reconsideration after me sending in sleep diary I got support group for mental health which we all know happens when you have lack of sleep lol im worried now after sending in 3rd esa50 form as someone else filled it in I had change couple bits 1 being he put wobbly leg syndrome ggrrrrrr and so now..............the lonnnnnnnnnnnnnnnnnng wait sent it in June . so yeah Pippins you have fight for it no one knows how we suffer unless they have it most them assessment so called nurse's /dr's know nothing of RLS it should be recognised as a disability or whatever anyone wants to call it lol . xx

[RAYJAYC]

Hi Mrappleton

Do you just want it recognised as a 'disability' or for benefits reasons?

I'm not drawing you into a political argument here - just whether you want it 'listed' as a disability and that's it or if you want to claim benefits for it?

One can be argued for, the other has factual implications.

RAYJAYC

[Mrappleton in reply to RAYJAYC]

JUST TO HAVE IT RECOGNISED AS A DISABILITY WOULD BE SOMETHING TO SHOUT ABOUT, ANOTHER INVISIBLE DISABILITY LIKE THE ONES I ALREADY SUFFER WITH, NAMELY COPD AND ARTHRITIS. PEOPLE THINK THAT IF YOU ARE YOUNG ENOUGH AND LOOK ALRIGHT YOU CAN'T BE DISABLED.

[RAYJAYC in reply to Mrappleton]

I absolutely agree! The invisible disabilities are just that, so yes people don't believe or consider you disabled.

If you're not 'stereotypical' in a wheelchair or have an obvious learning disability, the general population still haven't been educated to think otherwise.

Maybe start a petition or write letters to the appropriate people in government to make yourself and others heard.

RAYJAYC

[Carcol92 in reply to Mrappleton]

Totally agree. I've been ill since I was 25. All I've ever been told is "ooo your too young to have that". Still ill though regardless of age.

[gypsy49 in reply to RAYJAYC]

Rayjayc hi hopefully you don't rad this wrong im not being nasty in the reply sometimes tiredness and deaf English gest muddled up if one doesn't sleep then you would find it difficult to find work where they'd accept you fall asleep without notice or that your late because you didn't go to bed till 7am and your suppose to start work at 9am then yes for benefits reason that or starve .... sadly which ever it should be noted as a disability anyway for that what it is RLS causes sooooooooooo many other problems health wise time RLS was recognised .

[Hidden]

It should be called a disability, because thats what it does to us. Disables many people from holding down a job. Then what do you if you cant work, living off fresh air, dont know anyone who can. So, yes disablity so people who HAVE to give up there work can claim benefits.

[RAYJAYC in reply to Hidden]

When claiming 'disability' benefits, particularly PIP, it's the way a condition affects you and not the condition itself.

Just because your doctor or physio has maybe said your condition is severe won't get you anywhere - but a detailed account of how it affects you will.

ESA is a little more difficult to get around but with careful activity by activity wording on the forms for both benefits plus back up evidence from your medical team, you should stand a better chance now.

The claim pack is forever reminding you to describe HOW a condition affects you and not to just expect a diagnosis to get you through so do just that!!

Best of luck!!

RAYJAYC

[DJTP1962]

When you're legs are so restless that you can't sleep and you have to go into a different bed from your partner, it certainly is debilitating, both mentally and physically...

[suzybe in reply to DJTP1962]

I've had to sleep alone for about 15 years. Chronic low back pain means I mostly have to sleep sitting in a chair and the worsening of my RLS as I get older means I can't share a bed with my husband as I would keep him awake too. I've been waiting decades for something to treat RLS and still I walk the room hour after hour, often with my eyes closed as I'm so tired. Gabapentin, Tramadol, B vitamins, magnesium, I've tried them all and many other things over the years but nothing works. I could just scream with frustration but that won't help either.

[Weezie99 in reply to suzybe]

Have you tried Vicodin (opioid) yet?

[senileandinsane]

It should be classed as a disability ... I feel half dead with exhaustion and uncomfortable to the point of nausea and concentration is zilch ... No wonder I never last long in jobs ...

[davegoldtooth12]

Partition and make it happen 😎

[Hidden]

I completely ageee. If I was still of working age there is no way I could effectively and safely do my job now - was a GP myself and used to night waking & functioning the next day but RLS in my version is in a different league. Would definitely have needed to take early retirement