Fibromyalgia Action UK

Want to work but body and mind won't let me and ESA PIP don't help

I am waiting for hearing for PIP but forgot to send off confirmation letter within time given as I forgot where I had put it (Fybro fog) so hope they don't dispute it. I also had my assessment for ESA few weeks ago as I have been on it since July 2013 last year. The problem is the doctor stopped the assessment when he asked me to lift my right arm up as far as I could and I said I couldn't but I used the arm to wipe my nose so my daughter said I did afterwards. Not really sure what happened in my head I also had this voice from a forum I had read earlier that day saying just don't do anything they ask! also I think I got confused and thought he wanted me to move it back so it must have looked like I was doing it on purpose. My arm and wrist was aching that day due to arthritis in my shoulder and did not want to move it too much. My doctor wrote a letter to backup my Fybro and chronic depression stating I can't work but forgot to include the arthritis and osteoarthritis in hip on the letter so getting her to rewrite. So now I am panicking and worrying that it will look like I was faking. Another thing that really disgusted me was they kept me and my daughter waiting for 2 hours as they said the doctor was late but the couple who had appointment after mine went in first. I was fed up and aching all over just wanted to go to sleep. I am currently not on Pain Management as i cancelled it and have not been set new date, finished all CBT and only saw Rheumatologist last year. Anyone have any advice what to do next I am 55 and on the scrap heap with professional qualifications?

4 Replies

Hi lonelyandtired. I can't answer your question, sorry, but I will be interested to follow this thread. I want to work too. I'd love to be able to afford things I used to have if nothing more. I'm a little way behind you in that I'm working but finding it more of a struggle, and more - shall we say what feels like hostility from employer.

There seems to be a theme that ATOS etc think we're making it up and see their job is to stop you getting what you're entitled to.

I hope you have a good support network. There's a great one on this site. Is your avatar name a bit of a giveaway I wonder. Gentle hugs. :)


Please don`t give up on the benefits yet, if you do not get it this time take all relevant paper work including any medical evidence you have to the cab and ask them to help you appeal. They are very good and the lady I saw was very well up on fibro symptoms...good luck and lots of gentle hugs sue

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Hello Lonelyandtired,

You have obviously been feeling stressed about the recent changes in your life as anyone would be. It is natural to feel upset by how health affects us and changes the focus of our life, however I would say that this change could bring about new avenues in your life.

Like you I had professional qualifications being an ex staff nurse and had to adjust to the fact that this career is a past dream. However due to knowledge and other skills I hope I have been able to help others with Fibro here in the community by volunteering for FibroAction and starting our local support group.

I guess what I am trying to say is you may have positives, knowledge and skills that you can take you in another direction while you learn to adapt to living with Fibro. Fibro can be managed with a combined approach and who's to say you may not improve in the future to undertake other things. For now, I would imagine you have lots to give to whatever you choose to do, whether it be volunteer work or an online course.

I am sorry you feel so despondent and I am not making light of condition all these adjustments & the process leading to acceptance can take time. However, to hear you say on the scrapheap I think this may be how you feel physically at the moment but your attributes and all the reasons your friends & family care for you will hopefully help you through.

FibroAction can send you some information by email about ESA & PIP, which may relieve some of the stress impacting on you at the moment. Please do email me, as this may be of help to you.

We are all here to support you and most of all we understand as we all live with Fibro too.

Sending you all the strength I can to keep battling on :)

Best Wishes

Emma :)

FibroAction Administrator

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Hi lonelyandtired

I sincerely hope that you are feeling as well as you can be?

I am so sorry to read that you have had to endure this and for the way it has left you feeling. I understand only too well how you feel in relation to being on the scrapheap as work is in our souls, it gives us so much more apart from money. I think if I were you I would go and talk to my GP and discuss exactly how you feel.

I sincerely hope that you get the outcome that you seek, please keep us updated on your progress.

All my hopes and dreams for you

Ken x

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