FIBRO........ ILNESS OR DISABILITY??

[sh3ronb]

I was wondering how many people on here think Fibro is an illness or disabilty.xxx

[kraftyk8]

Hi sh3ronb,

I don't think It should be described as an illness or a disability.

I Believe it is a disabling medical condition made up of a load of variable symptoms, that have no confirmed cause and have been given the badly described name Fibro (fibrous tissue) myalgia (pain).

But don't start me on that one, I can rant about crappy label and short comings of research for hours!

happy hugs, Kate

[nadine1974]

sorry Kate but i disagree, its definatly a disability due to the "disabling" effects it has on your body and mind!

a disability is a condition that for the majority of the time stops you leading an active and independant life!

so perhaps call it a "disabling condition" ??

nadine

[kraftyk8 in reply to nadine1974]

that was the second thing I said!

[cxs957]

Fibromyalgia is not always disabling. i had it for 7 years before I classed myself as disabled. I was still very much active. I don't call an illness though because for me that indicates it will get better.

[westgate]

depends if we look sick or not!!! hee hee!! xx

[kraftyk8 in reply to westgate]

love it

[LindseyMid]

Fibro is not always disabling - not everyone has it severely and uncontrolled. People with Fibro can have it mildly or it can be managed. I am no longer disabled by my Fibro but I used to be.

It is an illness and a medical condition, but it is considered to be a syndrome rather than a disease, because (medically) for it to be a disease we need to know the disease process and it should really affect one bodily system or organ.

[Hidden]

i think it can be both so i am the diplomate ...

like ashtma you may always have it so its an illness

and like many sometimes it can be disabling so for some they have a dysability ..

not everyone on this sight is effected the same way I like many people with FMS have a job others have it worse ... the one thing i know you can get better we fo have flare ups but also a possibility of it going or becoming better thats the hope

gentle dyslexic hugs

[shopaholic]

mmmmmmmmmmmmmmmm uve got some very varied answers..i think this awful thing is a bit of everything...certainly not nice for any of us eh!?? luv and hugs xxxxxxxxxxx

[rosehip]

illness and disability in some people xx

[soulsusie]

Fibro is a chronic condition.

[Hidden]

I think it's a disabling condition and can make some people feel very ill. It has so many variants it's hard to classify it .

Hugs

xx

[Hidden]

Its depends on the individual I feel, for me I see it as a medical condition that I need to control (like my asthma). I am not disabled by this condition. But as it has a wide array of symptoms and can be to varying degrees, it certainly disabling for others.

[BlueBunny in reply to Hidden]

Your right, I've just never been able to manage it though, I'm my own worst enemy and depression is the spanner in my works !!! one day

[demelza]

iv had fibro for 28tears nearly half of my life i can hardly remember what life was like before i had it / it is a chronic disabling condition its totaly wrecked mine and my familys life im going through a bad flare up this last 4weeks cant do much at all im reg disabled .x

[sh3ronb]

Thanks everyone for your opinion, i was just wondering how other people seen this. Love and ((((((((hugs))))))).xxxxxx

[Hidden]

Hi as much as i hate to say and admit it i personally would call it a disabillity and i know alot of youmay not agree but that is my own personalopinion on my circumstances and my life and how it has changed in the last 2 years and i am the 1st to hate to say it and struggle to say it or think it but yes i woulsd say it is more of a disabillity than an illness

i dont wish to offend anyone or upset anyone but the questioin was asked and we must all write what we honestly think and feel and i dont know you all personally on on here and it is up to the individual how they want to class it but that is my opinion only

love to you all diddle x

[Hidden]

unfortunately in medical terms is isnt an illness (or disease)….its a condition…

A condition which can have disabling effects…. was what i was told by Rheumatologist who diagnosed me.

A condition that we have to live with…. unfortunately ...until the 'medical experts' find a cure or reason for it xx

[BlueBunny in reply to Hidden]

I do wonder about a cure because I wonder if we all have these symptoms for the same reason ?? there was another question on here about if you have an idea where your FM started ... Is there one cause for us all ?? I hope a connection can be found soon.

[LindseyMid in reply to BlueBunny]

Right now we are thinking that there are a number of factors affecting someone's risk of developing Fibro - close family with Fibro, hypermobility, pre-existing rheumatoid or chronic pain condition, etc - then there are a number of triggers that lead to its development - whiplash, trauma, prolonged extreme stress, etc.

That doesn't mean that Fibro isn't just one thing. You can have a broken leg from a skiing accident or from osteoporosis - it's still a broken leg.

However, not everyone with a current diagnosis of Fibro will have Fibro and certainly many people who currently only have a diagnosis of Fibro will have other conditions alongside Fibro.

[BlueBunny in reply to LindseyMid]

I have CFS from 1996, then in 1999 the pain started as a result of the trauma of trying to keep my job, right now I cant tell whats what, the range of symptoms change so often. My mum has pernicious anaemia (B12 defeciency) I have had a swollen lymph node in my neck for years and so does my mum. When I was 7 I had mumps but they stayed swollen and I was told it was my glands (behind the ears) I'm waiting to see a rhumatologist. This condition is so varied I can understand why its a nightmare to find an answer

[suejayjay]

It is very like MS in it's diversity of disability. My husband was finally diognosed with MS 27 years ago. The precedeing 2 yeras they could only guess??? what it was because it wasn't anything they could test for!!! If that makes sense? He never had remissions and had to go into 24/7 care 26 years ago. Conversly a friend of mine has MS and initially it affected her arms. She couldn't pick up her newly adopted daughter. Hang the washing on the line or dress herself. She had a remission and has never looked back!

Now what is MS classed as? Is it a disease? a disability? Or what? To my mind Fibro comes into the same sort of catagory. It is a syndrom because of the number of things that most of us have.Like the IBS etc. But it is also a condition that can be disabling. I guess we can also be said to have remissions like those with MS.

When I first joined here, I was very upset by the number of you who seem to be so much worse than myself. I have this image of a progressive disease and imagine that I too will be unable to walk or dress myself. At the moment I can STILL DO those things even tho the pain is sometimes nearly unbearable.

Sorry if this seems to have gone off the point. I suppose I would class it as a condition rather than an illness,but one that is often disabling. Well, there we are. But they still don't know what causes MS altho' they can now test for it. That's an improvement of 30 years ago! So roll on the next 25 an who knows. Muddled thoughts Sue X

[LindseyMid in reply to suejayjay]

Great post Sue!

Do remember that any support organisation like this will appeal most to those people more severely affected by Fibro, and they are likely to be the more frequent posters/supporters. That's true of most in-person groups as well.

[madddyyy]

Mine is a disabilty and i have it pretty bad, but officially did i hear its been reclassified as a CONDITION rather than a SYNDROME.

[purpleblossom]

I think I agree with those above who say that it depends on the person in terms of how severely they are affected by it at the time, how badly it affects their social, physical and mental wellbeing at the time. Although for me, it is no doubt a horrid disability (and has been since I have suffered from it since my road accident over a year ago), I would hope that not everyone is as disabled as this by the condition and that many people can despite the condition carry on with regular daily activities like walking properly, staying active, managing household tasks, and personal care needs themselves etc. I feel however that a lot of the people who ARE less disabled are probably not on this forum as they have less of a need for "support". Those of us who are very much affected by the disability are in my opinion, can often find it difficult to get the support we need from our pre-existing group of family and friends and therefore we turn to support groups like this consisting of fellow sufferers so that we we will find people who we can relate to and who will understand what we are going through. xxx

[Hidden]

hi it is a condition and is claddified in uk as a disability. I have refused for two years to believe that it wAREALAND WAS VERY HARD ON MYSELF BECAUSE I LOOKED WELL I BELIEVE LIKE OYJRS THATI WASWELL PLEASE PLEASE DONT PUSH YOURSELF ANDIT IS SO REAL SO HORRID AND SO VARIED. MY DOCTOR WVWNTUALLY WXPLAINED IT TO ME AND SO I AM BEGINNING TO ACCEPTMY LIMITATIONS.SORRY bout caps but i hit wrong key too tired to re do. there re days when i have to use an electric wheelchair created by the damage i did ignoring advice

[sh3ronb in reply to Hidden]

Hi fadedblossom, im sorry to hear that. If fibro was classified as a disability in the uk then why does everyone have to fight so hard to get DLA no matter how bad their symptoms are. I know it is classified as a disability in America. Thanks for your input. (((((Hugs))))).

[LindseyMid in reply to sh3ronb]

Actually, there is no such thing as a classification of disability for conditions. Disability is a measure of how much you are affected by anything, so you can have Fibro and not be disabled or you can have Fibro and be disabled.

There is information on eligibility for DLA here:

direct.gov.uk/en/MoneyTaxAn...

Not everyone who is eligible gets it though - that's a whole other problem!

[BlueBunny]

Both ... sometimes the simplest of answers say it all I'd be happy for it not to be called a disability but it does best describe what it does to us for others to "understand"

[Sarah-Jane]

Okay, before I respond I would like to admit I could not read everyones responses.

For me I am disabled. I cannot do what I could before. I cannot walk down the road, hop on a bus, spend four hours window shopping, have a cup of tea and cake with friends or family, hop on a bus, walk home and then unpack before I cook dinner! I wish I could.

Instead,take today, I sit on my backside resting so that I can have a small family gathering tomorrow and manage to have two of my best behaved grandchildren for 3 days.

Sometimes I am ill with pain that has become uncontrolled, migraines that prevent me from going to work - either could lose me my job soon.

However, being disabled I am given taxi fare to work, have a wheelchair to cover short distances with speed and a battery chair at work to cover the site, and a mobility scooter so I can finally walk my dog, pop to the shops etc. I should also get on with getting a blue badge! I keep forgetting that.

Before I was classified as disabled I was stuck in the house. Thats it. Stuck. I had to ask to go somewhere and when my husband went to work I could not just nip down the shops to get something! I could not exercise my dog, which I had got to get fit 10 months before FM struck!

If I was ill I would get BETTER! Sorry. A bit stressed.

Soft hugs

[sh3ronb in reply to Sarah-Jane]

Hi Sarah-Jane, im so sorry to hear your situation, but i tend to agree with you, if you were ill you would get better, thats kinda how i see myself. Also dont apologise, i get stressed too. (((Soft hugs))).x