Fibromyalgia Action UK
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Zero points and being told to work overturned at my appeal tribunal, - it only took a year and a day!

Going to an appeal tribunal? Do your homework. Look at the criteria. My Fibro did not fit any of them which is why I gained zero points. The saving grace is exceptional circumstances.

Pain and fatigue are not criteria considered but they are very debilitating.


For my permitted work I have retrained twice. First as a gardener, (before I had the diagnosis of Fibromyalgia). While working, with adrenalin flowing I looked perfectly fit but 3-4 hours work resulted in 18 hours in bed due to fatigue and pain. I became more and more ill and had to give in. I then retrained as a dog trainer. This is less physically demanding and I am still physically active and again nobody would guess I had a problem while I am teaching. I now know how to pace myself. Because pain causes interrrupted sleep I need to sleep/ rest at night and all morning. I then have an easy afternoon including a dog walk and a rest before working for 2-4 hours in the evening. Shopping, housework and other necessary activities tire me as much as work. If I ignore the fatigue and push myself for a week or more the payback is needing to sleep and rest for up to 14 days afterwards. As a result of living alone I have no free time, I work or sleep. When I am unable to pace myself fibrofog makes thinking and speaking difficult. I may also feel as if I am about to faint (previously diagnosed as a panic attack now recognised as my body telling I must stop and sleep). If I continue to push myself I can become tearful.

At the Appeal Tribunal

I provided documentary evidence of the work I have done and how it made me feel. I photocopied my diaries inwhich I recorded what I was doing and how I was feeling. I photocopied my GP's medical notes. I copied the sheets I filled in to help me with pacing provided by the pain clinic psychologist. I copied my certificates to show that I was getting re-qualified. I was critical of the system which paid no attention to pain and fatigue or a diagnosis from a hospital consultant.

At my assessment due to stress and having to get up to be at a 12noon appointment, fibrofog was full on. I was asked how old I was, I couldn't think so I gave my date of birth! I was asked about my medication, again I couldn't think so had to get it out of my bag. I was asked to clarify my evidence which I did, just confirming what was in my documentary evidence without having the copy open in front of me. Legally they should only have considered how I was on the day of my original assessment a year previously. I pointed out that that was unfair as fibro is a variable condition and I had provided evidence to show how each time I built up my work hours I became ill. I was asked what an employer would need to help me. I replied that after 3-4 hours I would need a room with a bed so I could go to sleep! I added that no employer would provide this so this is why I was doing self employed permitted work.

I agreed with the judge that according to the set criteria I earned zero points but pointed out that because of my illness I could not work full time. As a result of my oral and documentary evidence the tribunal doctor and judge found in my favour citing exceptional circumstances and that to work would damage my mental and physical health. I am very grateful that they listened to me. On this occasion I thank God that fibro fog descended making it difficult to find words which I always find upsetting, - but in this instance it helped.

I have been giving 2 years before I need to be seen again. I will continue to try to build up my work but the pressure is now off and if I feel ill I do not need to push myself. I found the appeal tribunal to be considerate and fair. I was given a written copy of the judgement immediately.

The next day I received a letter telling me that all benefit was stopped as I had been on ESA for a year - the appeal tribunal was the day after the date of this letter! Due to the bank holiday I could not contact the office for 3 days and it took 35 minutes of holding and listening to a ringing telephone before I was put through to speak to someone...


Do your homework,

Provide documentary evidence so if fibrofog descends you do not lose out.

Point out how pain and fatigue affect you, don't try to fit in with the criteria by exagerating aspects which aren't big problems.

Be totally honest, pain and fatigue are debilitating. Fibromyalgia is a debilitating illness.

Speak for yourself, if fibro fog descends this can work in your favour.

Exceptional circumstances are the way to go.

11 Replies

I am so glad I have read this - I don't want to have to make more of things then they are just want them to understand how the fatigue and pain make you feel on a daily/nightly basis - which yes you learn to adapt to and adjust your way of life but I admire you fitting in some form of work as well - the very thought of having to try and hold a job down all over again really makes me feel worse - it highlights everything you try to deal with to cope with this horrible illness the things you say to yourself well I cant do that but lets concentrate on what I can do ...... having to try and hold a job down is going to make me feel like I am letting myself and more importantly others down. Well done on your judgement. Sharon D.


Hi Taggle,

yet another story about these wretched unfit for purpose medicals...been there done that twice. I had to wait 14 months for my appeal, most of it spent on a reduced benefit 0f £51 a week..."because you've put an appeal in"...turns out they neglected to tell me i was on the wrong benefit. It wasn't till i went to CIt Adv, several arguments with DWP and the lady from CA speaking to them on my behalf that they relented and said yes i was on the wrong benefit and they should have told me.

fight fight all the time, i was soo poorly at the time i nearly lost the will to fight on. We really don't need all this extra stress and victimization when we really are at such a low edbb.

Glad i did as i won my appeal...two fingers up the "the system" when i got my back pay.

Hope all goes well for you,

Take care

Jan xx


Very interesting post Taggle. I am printing it out so I can read it and refer to it. You sound like a very intelligent lady. Love all your points and your so right. The descriptors do not help the majority of us as some days we can do these things somedays we can't. I agree with you and in my opinion my case is also about exceptional circumstance. Well done Taggle. xx


Find this so helpful, awaiting appeal myself. I tried to work as long as I could, reducing hours, moving to an office job in the same company who tried everything to keep me, except a bed to use, which is a point I have made myself at medicals etc. Writing down the documentary evidence is a genius idea and I will sit down and go back and write it all down. Thank you and take care. x


This is really helpful. I have started keeping a pain and fatigue journal for my next assessment. I rate my pain on the 0-10 scale and say where it is worst that day. I also write down what I was doing before the pain or fatigue got worse whether it was that day or a previous day.

I'm hoping this will help my chances of winning at appeal even if they don't change the criteria questions.


Very good advise.I'm going to copy it too so I can refer back to it (otherwise I'd forget what you said - good ol' fibro fog!!). Ive been through the medical and appeal, got 12 points but still 3 short. I'm now fighting to get some sort of benefit back because, like you, I suffer extreme fatigue,after doing not much at all. 30 years of Fibro is more than enough to zapp the energy out of anyone. I got stripped of ESA as I'm not "sick enough", and cant get JSA any more because I'm "too sick" to look for work and hold down a job.I got it for just 4 weeks.So which is it, by government law?? Neither. I dont fit in anywhere either. I really dont know where my next penny is coming from, and the cupboards are fast becoming bare. I've re applied for ESA, but I dont know if I'll get it.They said it would take up to a month to proces my claim, so if they refuse after that time ...( throws hands up in the air...). Ive been on Income support/ I.B. since 2005,so theyve been happy with my illness all this time, till david cameron came up with these cruel, nasty new rules. I too have come very close to giving up the fight. But the government is greedy, thoughtless and heartless, 3 things I hate, along with injustice.So I need to fight to put it right. The rebel in me is still there, Ill or not. Good luck everyone. Power to the sick and disabled.......


Hi. You're right we all need to keep "The Rebel" within alive and kicking as the saying goes "don't let the b........ds grind you down!!!"


WOW congratulations you deserve it after working so hard!!! Thank you so very much for writing this and supplying such good advice. I am currently off sick and will no doubt sooner or later have to turn to benefit system - so scary. Which s why your advice is o needed and appreciated

Gentle hugs and good luck with the permitted work!!!!!


Found this really useful as im attending my appeal on monday so thank you. I am hoping that I will be able to retrain for a career someday as I was a nursery nurse and cannot be doing that anymore,have asked the advisers that im under at the jobclub tobte told we dont know wat training would be suitable tot you ,its just a farce .


I've been in limbo land also, im now waiting for my appeal which they said could take upto 6 month to a year!

It is understandable that the Gov want to separate the wheat from the chaff but why do it so black and white? It leaves many of us with the un seen disease feel like frauds. I, as inmsure many others, have often questioned themselves, especially on good day.."oh maybe i COULD do this or that....." I usually think that for a while and then Fibro engulfs me :-(

I too have started writing a diary, typically I've been feeling quite well lately! Appart from a sprained wrist which is making my writing look like a 5 year olds!I wish everyone good luck and I'm tempted to ask for a blue badge too.

Enjoy the day xx


well done xx


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