still no definative answers

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by maddie2013, Mar 1, 2013.

  1. maddie2013

    maddie2013 Guest

    Im sitting here, been turned down for my appeal for benefits and now ive got to make yet another arguement for tribunal despite all my doctors letters and i just get so sick of it. 6 months of the year battling to get a pittance amount of money from the goverment, the other 6 apprehensive waiting for the next 6 months of worrying whether your going to keep the roof over your head, pay the bills and feed yourself, all the time living with chronic pain, sleep deprivation and fatigue, half the time i dont know if to laugh or cry because this is utter insanity.

    These conditions are not unknown they've been about for years so "Why still no definative answers?"

    Because if there was at the very least its gonna make this part of the process easier even if they havent come up with a cure yet

    Its this part that drives me nuts becsuse you spend your life trying to justify your own intolerable illness.

    And i come on here and read reseach papers telling me that fibromyalgia patients dont registar pain seen afflicted on others as normal control do.. And i think thanks for that, thats helped how exactly? All these pills, alternative therapies what are they to occupy us until they come up with the cause, and whens that gonna be when they stop wasting money on silly research? I just feel like we're left juggling balls inthe air while grasping at straws and im already exhausted.

    I dont care what the answer is even if its im nuts, as long as thats true and they can sort it out i dont care. Ive just had enough of this it might be, we dont know so we're gonna do some useless research, its about time they pulled there finger out because im fed up with eating popcorn in this never ending interim and i want the rest of the matinee so i can get home and have a proper dinner!


    Dont you just hate metaphors...what i want to know whats causing this? I want answers not more questions, because then we can stop with whatever this is ("coping" apparently but the definition of coping is "to deal with successfully " and i know that isnt me because i wouldnt be here otherwise id be out working and enjoying life If we had an answer to the cause then we'd know the cure or at the least not find ourselves errrring and ahhhhing when someone asks whats wrong with us.


    [This Message was Edited on 03/01/2013]
    [This Message was Edited on 03/01/2013]
  2. luigi21

    luigi21 Member

    Never rains but it pours does it and boy im soaked today. I got a letter to say my benefits might be stopped now ive got to musta some energy get paperwork together and write yet another letter to my doctor and i really aint got it in me today. Im sure im going to hear from other sufferers in the same boat because its that time of year in england. Our goverment has made it harder and harder for the disabled to claim even though there suppose to recognise this condition, unless you've got limbs missing, or your terminally ill they dont care. These are the people i wish it on if but for a day. Its terrible state of affairs when your made to feel ashamed of your disability.

    And your right its because the cause isnt recognised, we know what the symptoms are we suffer them every day. But until we can answer the cause no matter what anyone says this will not be recognised as a legitimate illness. I wonder how much money the pharmacutical companies stand to make out of us. It is way past time they should have collated their money and research efforts together and determined at least a recognised explaination. Dont know about popcorn maddie more like peanuts!

    And one last thing we've got socalled "specialists" working on these conditions but wheres their support for us when we're faced with this discriminate situations year in year out? Very quiet then a?


  3. harrysmom

    harrysmom Member

    I hate that your situation is so stressful because it just makes your illness worse. I have had CFS for over 16 years and have reached levels of your frustration many times over the years. I, too, want to know exactly what it is we all have and what the cause is. Research has been going on since before I got sick in 1996 and people with little money try to contribute, but we really don't have the resources to make much of a difference as far as funding goes. Most of us are just holding on financially by the skin of our teeth. Guess all the rich entrepeneurs and powerful cooperations and charity-minded Hollywood superstars just don't see the need to fund research into this illness.

    I will say this to you....I don't know your application history for disability, but when I first got sick and applied for Social Security Disability I was turned down the first time, mostly because I think they hope people will give up and go away and thus cost the government less money. They make the forms long and confusing and overwhelming to people who are so sick they can barely sit up to fill the forms out. People in that condition are prone to give up easily and who can blame them? What I did was get a disability lawyer and he took over the second application for my disability benefits and I got them with no problem. Those lawyers don't get paid unless you are given disability and it is retroactive to the time you first couldn't work so a lot of money if often involved for the patient. The lawyer took 25% which I think is pretty standard for something like this. I had a large retroactive amount so I made out fine.

    I just wanted to let you know there are people out there who understand what you're going through and I hope you do get the benefits you deserve.

    Harrysmom
  4. maddie2013

    maddie2013 Guest

    Its ESA allowance theyve changed mine to, it was income support i wouldnt dare go for disability because ive heard so many people struggle to get it or end up losing what theyve got even though my dr said i should. Yeah everything is changing to ESA (employment support allowance). then you fall into 3 catagories full support, limited work, or full work. I know i just cant do it, i dont know how they can question my doctors opinion?

    Thanks for the replies luigi and Harrysmum, i'll take that advice and see what i can do.
  5. luigi21

    luigi21 Member

    Yeah maddie im on ESA they stopped my income support.

    Whats mad is that the medical profession and goverment recognise these conditions and that they can take away our ability to funtion on a basic level but sleep depivation, chronic pain and fatigue are not mentioned on the impact questiobaire.

    It says do you have all your limbs? (if even asks questions like what can you pick up with your stubs "subtle a?" and are you terminally ill and going to die in the next 6mths?

    Thats it, or they recognise you as eligible for work. They dont even tell you how many points you got, nothing like that theyve got even lazier at assessments.

    You dont sleep because your in pain, because you dont sleep your exhaustion worsens(fatigue is a poor description for how we feel i believe). but they determine that you're fit for work and not a danger to yourself or others.

    We should just roll into the jobcentre and lay there saying "im ready for my interview"
    When i had to go in ( or face losing my money) i spent it with my head resting on the desk to tired to lift my own head up, while the bloke asked me what type of work i wanted to do
    (pictue the scene people because it really is that mad as you probably know).

    ..The other part of me was thinking i cant sit here for too long because my back and hips are killing me, but i was just to tired to lift my head off the desk.

    The other mental thing is they determine ypur not eligible for work even if your doctor states what symptoms you experience as part of your ilness like you said maddie. Your doctor carries less weight than the goverment over deciding whether you're well enough to work.

    You kind of want to say well my doctor has no treatment as yet for this condition that would put me in a place well enough to work, what am i meant to fo about that?

    And if your qestionibg my doctors opinion on my diagnosis then whats wrong with me? Can you get me a second opinion because i must be mentally ill then. i mran seriously mentally ill if my mind is making this up because no one would want to live like this so please can you point me the way to a physician who can diagnose and deal with that.

    Mad..either way they seem to have us over a barrel bout time we turn their own "rationale" on them.



    Thats what i think maddie, be nice to know what others think, im just going to send what theyve sent me to my doctor after all it appears your own viewpoint counts for nothing nor does your doctors by looks of it but pass it back.

    Apologises for all the metaphors and sarcasm but without them id be swearing!

    Right going to go now because im so tired im tring to turn the volume up on my music player with my tv remote. Eastenders is on in 15 anyway.
  6. emily2013

    emily2013 Guest

    Thank goodness for sarcasm it lets us laugh at how insane our predicament continues to be, or you could get depressed or go mad you really could.

    a good example of what i feel our lives have become. A life ruled by this condition while having no choice than to "beg" (and plead) off the system for handouts. Thats what we've been reduced to.

    I mean when you're diagnosed you are told there is no known cure. So you spend years and i mean years researching this thing trying to find answers you know why?because a day dont pass when we're not reminded that this aint what we use to be. Our searching? To no avail. Why? Because we're not doctors and Researchers.

    If only these medical professionals could channel the amount of energy from years we've spent searching and battling then maybe things would be better for us by now. I mean things havent progresses since i was first diagnosed they even still promote amitripyline as the most affective drug.

    1/3 of patients in a rhematologists waiting room will be diagnosed with fibromyalgia ( i dont know the statistics for cfs). I mean thats alot of people. Yet years on....nothing. No answer.

    No advocate either ive looked. Ive seen 6 socalled celebs (meaning mostly soap stars of old programs) and apparently Morgan Freeman although i dont know how definative that is just said he complains of having fibromyalgia in his arm after a car accident 4years ago.

    Michael j fox became an advocate for parkinsons and shone a great awareness on the condition which has no known cause, they know the symptoms but they dont know why this is happening to the brain. An its classed as a legitimate condition.

    So why not the same for fibro or cfs? All these years on their findings yet a greater preportion of the medical profession do not believe these conditions are real, in as far to say physically caused. All this time, for me 30 years and we keep believing their proactive in finding a cure or even the cause would be nice. As you say maddie a definative cause.

    30 years ago i set out on a journey to find out what this is, justifying myself, getting disbelieved especially back then. having "hope" that a cure would be found real soon.

    And i still find myself seesawing between passivity "what other choice have i got but to accept my health as it is, and rage at the fact nothing seems to be moving forward.

    If we accept this and the way we're treated nothing will ever change. Yet here we are doing exactly that.

    And they want us to accept it, they even encorage it"learn to live with your condition" adjust your life learn to pace. I believe the more passive we become at accepting this is good enough the more years of no answers we face.

    Theres a tale, its one of my favorites and i'll leave it here, all the best to you all


    A lion was taken into captivity and thrown into a concentration camp where, to his amazement, he found other lions who had been there for years, some of them all their lives, for they had been born there.
    He soon became aquainted with the social activities of the camp lions. They banded themselves into groups.

    One group consisted of the socializers; another was cultural for its purpose was to carefully preserve its customs, the tradition and the history of times when lions were free; other groups were religious - they gathered mostly to sing moving songs about a future jungle where there would be no fences; some groups attracted those who were literary and artistic by nature; others still were revolutionary, they met to plot against their captors or against other revolutionary groups.

    Every now and then a revolution would break out, one particular group would all be killed and replaced by another set of guards.

    As he looked around, the newcomer observed one lion who always seemed deep in thought, a loner who belonged to no group and mostly kept away from everyone.

    There was something strange about him that commanded everyone's admiration and everyones hostility for his presense aroused fear and self doubt. He said to the newcomer, "Join no group. These poor fools are busy with everything except what is essential."

    "And what is that?" asked the newcomer.

    "Studying the nature of the fence."