Fibromyalgia Action UK
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Chronic Pain - What it Means to Us

This is sort of a blog, and sort of a request. As I've mentioned in passing a few times, I have big plans for some training at work! I've been put in charge of 'Learning & Development' (my boss has finally noticed the low morale, and this is the only thing that she can afford to provide to try to lift it), something which is both interesting and frustrating, depending on how thick the fibro-fog is! My last presentation on lymphoedema was a nightmare, as I kept umming and forgetting my thread, even though I'd spent 3 months researching it and putting it together.

My next self-set big project is on arthritis & related conditions, and my hope is to do a brief presentation giving facts and figures on RA, PA, AS, fibro, SLE, and PMR. I'd like to follow this by a longer session on chronic pain, the effects of this on a person's quality of life, and how it impacts their ability to care for themselves, their financial situation, their relationships with others, and their emotional wellbeing. I know from experience that, as healthcare professionals, it's easy to assume that everyone can do what we can do, but I'm seeing life from the other side now, and what used to be easy is now a major - and often impossible - chore.

I've already planned to give everyone in the team a small bag of plastic spoons (I've toyed with the idea of giving some more than others, so that it makes the point even more obvious) to demonstrate Spoon Theory, and I have received permission from TeaDrinker (on the Pain Concern forum) to use a very well-written blog on the subject. So, I suppose what I'm asking is for any ideas you can give me on how to format this to make the biggest impact on my nice, healthy colleagues! I've picked up a lot of information on financial impacts from the ongoing struggles to claim benefits, which I would like to say will not be used directly, merely drawn upon for information. I will never use anyone's posts etc. without asking for and receiving permission via PM. But anything you can suggest would be helpful - I'm somewhat new to this fibro lark, and have barely got used to having to rest after a shower, or being exhausted for a week after a family event, or not being able to stand for longer than a few minutes at a time!

7 Replies

It,can have a huge impact on some people libidos,and leave the partners caring for there partner very isolated and alone at times too.

I live.m.e and fybro.

It takes away yre self esteem,confidence and the person you once were.

Its like being trapped.yre mind wants to do stuff our bodys have other ideas.

I dunno if this helps.but well done im impressed by this.

Good luck and let us no please.xx


I believe it is a good idea! Others do need to understand the impact it does have.

One day i can do something but still not streneous and like yesterday i was cared for allll day and i run my own business and have staff and customers and if i am not fit everyone loses out.

my hubby has taken over a lot of the roles i did in the house and DIY and Gardening which i had no problems with any and never once even entered my head how much i actually did as it did not phase me.

NOw because others are having to help out i think and hope it makes them sit up what role i actually did, work, home, garden and DIY as i am very independant and now i barely do much house hold chores.

I am petite build and 43 and was extremely bendy energetic!! now am a flop lol

I am never off ! i have had to lose quite a lot of my hard earned income because of this now in past 2 yrs.

My socialising, friends, getting up stairs, walking, opening lids, carrying even the kettle to pour a cuppa is an 'every day' effort now it has slowly become weaker and strenths and you feel like a lead weight or your body is not yours,

It affects the mind in thinking, memory and co-ordination, balance too

I did payroll last year now i given up i woke up and was doing something i had done like clock work easy to me and found myself struggling so badly going over and over something not getting my head around it and its continued every since.

It is hard to accept not as bad as losing a loved one (i lost 5 loved ones in 6wks) so am not judging or comparing but it takes away everything you once had and you have to focus on one thing a lot more .

My work is a package which i do both physically, mentally and if i cannot do one it has an impact so therefore i got helpers in but slowly more and more things happen.

luckily for Medication i am partly in control but not the same as before

there is so much more and i can talk for england!!! ;-) x


HI SootyB -- gosh what a project you have set yourself!! Here is something that you may find useful -- if you go onto there is an NHS endorsed booklet with advice on how to live better with long term pain -- on page 2 there is an excellent Pain Cycle diagram which illustrates how you can become trapped in a persistent pain cycle and It also explains "tools" on self-managing pain which I practice daily to keep my FM symptoms at bay. I think that it is likely that your "brief" presentation could become a "long lecture"! Your demonstration of the Spoon Theory is a fantastic idea -- good luck :) x


I'm hoping to turn the 'Chronic Pain' bit into a more interactive session; otherwise, everyone will have nodded off before it's over! ;)

Sara xx


forgot to say when you go onto you will need to "click" on the box on the RHS side which says Download now and "the pain toolkit" -- hope this makes sense!!


Thanks, all! :) Keep the ideas coming! xx


One of my uni assignments earlier this year was for a documentary photography module and I chose to try and show some of the issues about living with fibromyalgia and partly because I've been so short of money since my old car died and getting a motability car, I turned the project into a short (3 minute) film rather than printing it up as a portfolio assignment. I took statements from friends at my local support group about difficulties they face day-to day to make it.

I haven't put it online yet because I want to deal with the points made in the assignment feedback first but once I've done that, I will share it with the group, I've just been too tired over the summer to sort it out.


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