no health problems???????

[extremenightwalker]

i just read an article which infuriated me. restless legs does not cause serious health problems but may interfere with sleep and cause fatigue. OMG theres a whole list of problems caused or attributed to restless legs. yes fatigue is one, sleep deprivation, depression, insomnia, mood swings, leg pain, and as i have mentioned before the knock on effect of any one of these problems. when will restless legs syndrome be taken seriously as a recognised illness, why should we be made to feel we are wasting doctors time or complaining about a minor ailment.

[ookla]

I honestly think it's because of the name. "Restless legs" sounds annoying at worst... there's no way someone not living with it can hear that and take it seriously. Even people who live with people that have don't seem to grasp how serious it is. Until we get a better name, it will continue to be perceived as a psychosomatic joke - not worthy of sympathy or major research. If I tell someone I have rls, they roll their eyes and assume I've got some pretend ailment that seems like a big deal to me but is really just a silly nuisance, if it even exists at all. I mean, restless legs, are you kidding me?! Why stop there? Why not call it dance fever?

[extremenightwalker in reply to ookla]

sometimes i feel like im riding a bike backwards uphill. the morning after they ache so much and i feel like a robot not being able to walk bending my legs. but here we are again moaning about a silly little problem. RLS hmmmm restless? running? ruined? raging? i do wonder if restless seems a little underrated.

[Kaarina Administrator]

It infuriates me too! I see on the rls-uk FB page that 'Good Morning Britain' are again running a 'Sleep Week' but - so far - do not appear to be including RLS as a sleep inhibitor......... I have added my say along with other RLS sufferers.

I do not think it is purely because of the name. There is often the same attitude with arthritis sufferers, of which there are about 200 different kinds. Others often including even family and partners just do not get it. For example one gets replies like, oh I have a bit of that every now and again, take this or take that, do this or do that and it will go. Infuriating!

Kaarina

[Hidden]

I understand those sentiments! Sure its only restless legs a bit of a need to move sure we all move our legs all day what's the big deal?

I am a month off work, (a job I love doing but can't do at the minute). Due to the exhaustion of not sleeping and the pain I could not continue to function. I have had to stop driving long distances, the cinema is normally a no-no. I can't drink alcohol as it makes things worse. I have spent nights walking and pacing at the stage of near collapse but that driving urge to move still going strong, to the extent that I have thought of taking my own life on occasions, (wouldn't do it but the thoughts can come at bad times). I have taken strong pain killers that were not able to deal with the pain. I have had to miss family gatherings skip 1 to 1 time with my kids miss trips away as I couldn't sit in a car. I have sat worried and dreading holidays as I am confined to a seat on a plane while all around me have been excited. I sit and 'jiggle' my legs to the extent that I annoy those around me.

I a not one for self pity but have had to fight back tears on occasions at the frustration and pain of living with RLS, (for some of us it feels a lot like existing with RLS not living). People are by and large self centered and blind to the troubles of others but as ookla so rightfully put it "Restless legs sounds annoying at worst..." it doesn't kill like cancer, there are no Govt. ads like about heart disease but do not be fooled years of insomnia and pain erode the immune system we do not function as well as others but again as ookla said it does feel like a pretend/psychosomatic ailment at times.

Next A**hole that belittles the condition challenge them to a week of RLS - set them a plan that they need to be up and walking most of the night most nights of the week will limited sleep and see how they get on. AND if they are really cocky about it let them understand the pain by a good swift kick to the side of the knee!!!(only joking......a wee bit )

OK I am away to take a disco biscuit to help with my dance fever!

[Pippins2 in reply to Hidden]

Hi Raffs,Yes you have summed it up very well there! Maybe next time you should say you have a neurological movement disorder or Willis-Ekbom Syndrome !

However I feel it is not only RLS that is so misunderstood , the same applies to many conditions. Unless you have it you dont

realise how it can disrupt a life.

My daughter has inflammatory, autoimmune arhritis, a serious condition affecting internal organs -the meds used to damp down the inflammation in your body are weak chemotherapy meds.Her fingers at the moment are red, swollen and very painful.The tiredness due to the high inflammation levels is completely wipes her out.Even so as soon as someone hears the Arthritis part of her disease name so many times the response is along the lines of "oh yes my shoulder aches from time to time , I rub on deep heat and just get on with it"Sorry to veer ofg subjest but she is having a flare at the moment so I needed to off load.She is 29 and it breaks my heart,

Anyway the point I am making is this casual dismissal of conditions that others dont understand is the usual reaction from people , Lets face it most people dont really want to know how you are when they ask you.

The only place you will get understanding is from another suffererer in a place like this so I thank God for these forums I get every word you have said and many more on here will too .

So its 6am I may aswell get up now, oh and my daughter has also imherited restless legs from me.I have managed to pass on 2 conditions. However they will go no further , she has made the decision not to have any children , so in my direct family line the suffering will come to an end, x

[extremenightwalker in reply to Hidden]

lol, maybe we should all take the disco biscuit turn the disco ball on, strobes and play music loud throughout the night. when neighbours complain just say its no problem im just having a minor problem with my legs and cant sleep. sorry is it disturbing you?

[beady3]

What super letters from you both Raffs that just what mine was like we stopped hols on plane because of the legs, even the grandchildrens party was worry incase they went and as for doing something thought about it many times when you can't stop crying it hurts so much,my husband used to be worried when he went to bed. BUT now on slow release Tramodol and things are going good x

[hazelrobson]

So true - I spent three years back and forward to the GP without any real help. A Condultant at the hospital referred me internally to the sleep clinic - what a god send. I think RLS UK should do something with the BMA. also agree wit ookla - in USA they have changed the name of their network to Willis Ekbourne Syndrome as part of an attempt to give it more vp gravitas and gain recognition.

[extremenightwalker in reply to hazelrobson]

i agree, restless legs doesnt sound very important.