Fibromyalgia Action UK

Makes me sick

I work for the NHS in a GP surgery. On Friday I had someone ask me 'do u know what it's like to be in pain', yes I do actually was my reply. What really makes me angry is the amount of people I see who come in, fit as a fiddle but claim they can't work. Most of these get DLA, I look to see whats wrong with them and it's hardly ever anything more than back pain. Yet those of us who's entire body suffer pain every day have to struggle to get PIP. I've had to reduce my work hours on Doctors orders so have applied but I'm not expecting an acceptance first time, not based on sat I've read and heard. Fibro's never going to leave s so why can't they accept that and help to make our lives easier instead of adding to our problems with the stress they cause.

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Me too. I have recently had my Incapacity Benefit (ESA) withdrawn, without being seen or informed that it was going to be stopped!!! I do also get DLA, but if they take that from me also, I just won't be able to survive. I have written to DLA to state that DWP which deals with ESA admitted that they had made a mistake, but guess what? REGARDLESS of this, am not able to appeal because I am out of the Appeal time, and should have appealed as soon as I knew my ESA was going to be stopped!!! Errrrmmm HELLO!!!! YOU DIDN'T tell me this was how it happened.

I am going to write to the DWP Ombudsman, and the local MP, and if I cannot get it reinstated, I might even lobby my pension provider since I recently turned 60, which a few years ago was the retiring age for women, and see if I can get my pension earlier.

I won't hold my breath, but if you don't ask you don't know do you.

Any of you got any spare spoons???


They won't allow u to get your pension early ihav had no money since march my retirement date is the 6th of July but because my date is a Friday and my pension pay day is Thursday won't start to get my pension till the 11th July so they are stealing six days of my money I won my appeal for ESA but they still would not pay me after a year don't know where they get there rules from when they send you a letter about pension they always put the earliest you can draw your pension in my case it was 6th July and I was 62 on the 9th of may LTS of luck x


Hi dsmum

I sincerely hope that you are feeling as well as you possibly can be today? I genuinely feel for you and your struggle to find equality and parity from working and illness. I genuinely hope that you can achieve your PIP from your first claim, and I hope that you achieve a fairly decent award.

I can imagine that many of the patients at your surgery can be quite needy and demanding. However, please I implore you, please do not dismiss somebody out of hand for having a back pain, as many of us Fibro sufferers started with the odd pain here and there! And just think how many of us have had to badger and coerce to get appointments and recognition for our pains? And these same people come on here and say exactly what you have written but from the other way around?

I do not truly believe that you are angry with the patients at your surgery, but I think your anger is with a system that is not treating YOU properly? And affording YOU the respect and courtesy that you truly deserve!

I want to wish you all the best of luck with your claim and your working hours.

Ken x


Hi dsmum

Your statement "it's hardly ever anything more than back pain" is really unfair, and until you have suffered from back pain you can have no idea how painful and debilitating it can be. Among other things I suffer from back pain, and believe you me it is awful. It has an impact on the way I sit and stand, my balance and my walking and I am in pain every minute of the day and get only temporary relief from medication. Please Please be aware that back pain can and does have major impacts on peoples lives.


So do I but if that's all I suffered from I wouldn't mind


Wow! Is all I can say to that comment, and hope that you never experience back pain to the level that I have. Once you have, maybe you will be less derisive


Hi dsmum,

I'm so glad you came on the forum to have your little rant. Why am I glad, well, because you do sound a little depressed or anxious in your statement and kind of lashing out at others who may or may not be in possibly a similar situation to yourself. It's a form of mourning for your previous good health and quite understandable.

Do you remember when that lovely young lady (who has since died) gave an interview to a Cancer Charity saying that she wished she had Breast Cancer instead of Colon Cancer? As awful as the statement sounded to others, it did achieve a positive outcome which was to highlight the plight of Colon Cancer suffers and bring it to the forefront of the media.

A great number of people, especially those who have, have had or lost someone to Breast Cancer were both appalled and angered by her statement but many psychologists and counsellors came out in her defence because it's clear that what she was addressing was Not the individual suffers or pained loved ones but the Health System and Media which appears to prioritise one over the other so there's essentially more research, treatment and support for Breast Cancer sufferers over and above those suffering with Colon Cancer.

Don't become disheartened, do everything you can to look after yourself and through all your contacts, abilities and this forum, help us to educate and raise the profile of Fibro so that others will stop seeing us as the poor relations of ME and CFS which are better known, recognised and accepted. Don't get mad, get even! Challenge decisions and fight for what is yours by right.

Wising you calmer, considered days, several lavender scented gentle hugs and a handful of spoons for good measure. Do let us hear from you cos this is definitely the best place for a rant.


Thanks, the lavender scented hug gave me a little chuckle and you're spot on with the depression as my GP just started me on Mirtazepine


I don't think your employers would be very happy you looking at people's medical records & talking about them on the internet, wether your saying who the person is or not, it is a terrible breach of confidentiality.

Now to your comment they only have back pain, it never fails to surprise & shock me the way people who suffer pain themselves judge others who they think ate not in the same amount of pain as them

But get benefits etc, we have all I'm sure we have all suffered from the what's wrong with you you look "normal" to me comments, yet you feel it fine to judge others when you have no idea how they suffer in the other hours & minutes your 1 minute judgement can't see


Well when u see people walk in like their in pain and then when they've got the med3 they needed or whatever and walk out with a brisk step n like they ain't got a care in the world, I doubt you'd feel sorry either.

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I don't judge people in any circumstances, I've seen and been around enough people if different disabilities & illnesses & suffered myself since I was 15 I'm

50 now to know unless your walking in that persons shoes you have no idea what pain or not they are going in at that very second.

I know enough also about how people cheat the system & how guilty & innocent people are reported for all sorts of reasons as my ex husband used to work for DHSS as it was then as a fraud officer.

I think you should concerntrate on your own well being & illness rather than wasting time complaining about others


Pain is pain no mater where you have it, some people will say to me I'm sorry I shouldn't moan about my pain when you have so much.. my reply is it's not who has more pain than you are anyone else if your in pain then there no different from me or anyone else. It does sound like you may be depressed as you seem very angry and I'm sure if you were the one with back pain you yourself would not be happy in what you have wrote. So takre a step back think about what you have wrote and why then maybe you may realize you are angry at your own situation and taking it on others. Hope you can see what we are saying sweetheart and you can get some relief from your own pain and what's going on with yourself. Take care xx Jude


I've been thinking a lot recently and I feel more angry with myself than anyone else. Angry that I have to rely on others for certain things, angry that my 15yr old son takes more care of me than I do of him. Just got antidepressants n seeing a counsellor so maybe when I fell better with myself, your right, I may not be so judgemental. Thanks for the comment cos some of these have made me stand back and take a better look and although I maybe didn't like some f them, I glad they were said so I thank everyone

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