I tell them it's like toothache. It varies on a very good day when it feels achy as if I might need to get to the dentist that week. To a really bad day when every nerve root has been exposed just as I bit into an ice lolly!
Edited by Admin This member has left the community, therefore replies to this post are switched off 
The ability to reply to this post has been turned off.
hi whippet-i have the same problem explaining how i feel, i just think my family get sick of hearing it, but it's soo hard to explain to people who don't experience this pain-take care- julie51 :)xx
Hi whippetlover,I`m afraid I`ve made how are you a naughty sentence.I just say don`t ask as I want to know all about you,
And if I was to start I would take up all the time we have together.
For those who really care and want to know,I put this site on and let them have a read,and those friends send you all much love.
And they have all said the same thing,how can it not be believed when people who don`t know each other and newbies come on,we all have the same syptoms,
Wish doctors could be so understanding
Love and hugs Butterfly54 xxxxxx
Thank you my friends. I actually find the toothache analogy works reasonably well especially with anybody who has had an infected root abscess - my friend said 'shit, that was more painful than childbirth and I only had it over a weekend'. She has never even got annoyed when I cancel or am grumpy and when she asks me how I am today - she wants to know.
Whippet x
hi hunny i say it is like the day after a day in the gym or a day doing the garden that was a jungel all day
That's a good one, especially the garden because none of my friends would attempt that themselves, they'd pay somebody to do it for them. Bear in mind I used to be a professional lady and still have a few good friends from those days. But if I were to say 'imaginge if you had to ,,,,,,'
I say hit the wall with you hands as hard as you can that is what my hands feel like, jump off a high building land on your feet that's what my feet feel like when I just put them on the floor, for me the only part of my noddy that does not hurt is my head, but mainly I say I just wish you could get into my body because you could only last seconds and jump right out and you would say how do you cope with that but I do keep it to myself because no point saying anything just wait till they see it on my face and struggling. What I would give to feel normal after over 20 years. All the very best to my fellow Fibro challengers.
These are great and I'll use them both. Have been meaning to ask for the 'letter to normals' that someone from admin posted a few weeks ago. I think if it's OK, I might give a copy to various people like my local supermarket manager, library, my local bus comany. As I remember there is some kind of restriction (not the right word but will have to do today) as to how we can use it. If it turns out I can't do this I'll just write my own. I'm fed up with grunts and sighs as I take ages to pack my groceries, get out my card, forget what I'm standing there for! etc. xThis might help people understand and stop me from an outburst which is getting ever closer! Whippet
Thank you Chris for your kind words just a shame you can't see pain might make life more easy. Take care, keep strong and stay smiling. Regards Paul
A Big Gentle Hug To All Of My Fellow FMS Sufferers!!!!!
I attended my ESA Assesment on the 21st May and prior to that sent them a indepth 5 page letter explaining all of my FMS Symptoms and when I say indepth I mean exactly that. On the day of the appointment I was having a truly horrific flare up infact I was in so much pain I just wanted the universe to swallow me up, my neice asked if I wanted her to cancel, but I wanted the ATOS Dr to see what FMS Symptoms were doing to me, I had really bad cramps in my hands arms and legs I could hardly walk as my feet were hot sore and painfull when I put them to the floor restless legs and IBS made an appearance and I was so extremely tired my head hurt so did the back of my neck and shoulders and top it all my mood was not at all pleasant thats putting it mildly. My first impression of the Dr was that she seemed a bit to sweet to be holy and said hello Im Dr ? I didnt catch her surname,she went on to say we are all girls together talking as if we were great mates!!!!! she asked me quite a few questions all of which I had answered in the accompaning letter which I had previously enclosed, she was watching my every move however I was not phased by this because I felt so terrible she said she was not going to ask me to stretch or bend as she could see I was having difficulties she said it would be a few weeks before I recieved the outcome of the assessment and she could not give me any indication as it was up to the DWP (what a load of rubbish!!!) she then watched my attempt to get out of the chair with the help from my neice and as we were making our way to exit the building my neice glanced her looking at us from the doorway of her office she was obviously checking to see if I was feigning my symptoms. I forgot to add that she said at the begining of the assesment that she could only manage to type with 2 fingers yet both my neice and I saw her ten finger touch typing very quickly I must add!!! I still am waiting to know my fate and If I loose my benefit I am determined to fight to get it re-enstated my MP will also informed as I and so many other sick and pained people should not ever be put through this pathetic inhuman experience what ever happened to compassion and true caring The World Is MAD and getting MADDER by the second. So Sorry to Rant On...... Love to you all KaitimaiTay
I do hope thing are changing at ATOS a little. I passed round that training paper for ATOS 'Drs' because the aren't always doctors and the crazy situation is that they don't make the decisions. They are told to watch us from the moment we enter the bulding and the admin staff who book us in are asked for feedback too. It's really bad. I do hope you gt through first time but although it's more stress, you will certainly get through on appeal. I was sent an appointment but missed it because it was the day after I got my BC diagnosis. Since then, they haven't asked to see me again. My specialists will have said I handled the news very badly and so I wasn't even sent another appt and they put my money up by £20 a week but didn't say why and I don't want to rock the boat so I didn't ask why. I think it's stupid that the word 'cancer' opens doors when although I took the news in an unusual way, it was about whether I was going to have treatment at all because of the quality of my life with fibro which is still my biggest health problem!
Good luck.
Whippet x
ThanksTamboki, it is difficult. I like the spoons story, I think it was ChrisEL from admin that gave me it. I haven't tried it but might practice it on my Dad this pm to see if he gets it!
Whippet x
The ability to reply to this post has been turned off.
How do you cope with the pain?
How do you safely end your job?
Pain- how do you know what is bad?
What is something helpful that you do that helps your pain? 
how do you all cope with being do very tired
