Fibromyalgia Action UK
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Sleep what sleep?

Well folks 02.44 am this is the bit that other people don’t see, not been to sleep yet this is the fourth night in a row with little or no sleep. When people see me later today they will say what’s up with him, can you see any reason why he can’t work or when it comes to the benefits medical will they be interested? Not with what other people are saying. This will have a major impact on how I will cope throughout the day, when I went to “Pain Clinic” or was it comedy school they suggested that I should get a job where I could take a fold up bed to work with me in case I needed to take a nap. Having a problem finding that job, if anyone knows of such job please send details. Course I could always work at the pain clinic I am sure they would let me take a nap, they would let me take a nap wouldn’t they?

9 Replies

Hahaha!! I am sure they will Gary & maybe I could get a job there with you!lol. They stopped my benefits at the end of March telling me I had had the 365 days so they were just paying my stamp! then I got a 20 page book to fill in to qualify for my stamp getting paid by them!! Every time I tried to fill in the form I couldn't do it! it was to depressing having to put every single detail of my poor health down so I thought sod it I'm not doing it!!

I have paid my tax & insurance for more than 30 years so I should have enough for my measly pension when I'm eligible to get it. What gets me is the fact I've worked all my adult life until I was injured in work & I was only able to get 365 days benefit while people who have never worked but could have as their is nothing wrong with them get full benefits......not a very fair system hey, so at this moment in time I get sod all even though I've paid in to the system. Oh well mustn't moan I could always lick stamps for a living

Take care Gary & thanks for the laugh even though it's not funny in reality matey. I hope something gets better for you.


I have to try and laugh it’s the only way I can get through the day, it’s so easy to get depressed with Fibro. Thanks for your reply just nice to chat sometimes.


i neither have been to sleep and maybe i could also get a job in the pain clinic as i had to sit in a 2 hour work programme for the man to say he doesnt know why they sent me in the first place .


Thanks for your reply Trigger, i have also been through the work programme setup and what a load of rubbish that was. What we need is real help for people with Fibro. Any way off to bed now to try and get an hours sleep.


Hi Gary,

I know exactly how you feel by there, people don't see what happens indoors with your illness and for the small amount of time they do see you outdoors or just even sitting in your own home or chair, they naturally assume that because you are not necessarily wheelchair bound , that you are ok.

It is really heartbreaking and annoying how people judge you on your physical appearance.

Others don't see what you see, others don't feel how you feel, and others just simply don't want to understand.

I hope that you find some strength not to let this bother you no further, you will only make your health much worse, there are people here who understand you, real sufferers and real people who wont judge you.



Oh Gary I can totally relate to where your coming from, I have,nt slept good for years, within the the last 4 days must have had bout 12hrs sleep in total....i am knacked today, and hurting so bad am still in bed. i got a work related job interview this afternoon, as they say i am fit for work, ha! and like Mills they are going to stop my benefit in july and wont get anything cos my husband who is 60 has a job, he was wanting to retire this year but he cant afford to. I have also paid my taxes and my stamp, worked until 6 years ago, I think whats the point of being honest and having a good work ethic when you get penilised. I should be like my ex clients, and be on drugs and cheat and work the system. Does the goverment not relise that people who work the system will always do it and find ways to do it, when it is us honest genuine people, get penilised for it. I mean in my case, why would I want to reduce my income by 25,000 + a year to be on benefits......explain that, cos i'm to stupid to understand it.

hope you get some sleep soon Gary ...insominacs unite !


hi,have you tried phenergan tablets,i find half a tablet gives me a good night,non addictive so doctor says, so thats a plus,,,worth a try,xx


I would like to thank you all for your kind replies, it’s just so nice to chat to people that understand sometimes. Pondminstrel thanks for your reply and suggestion of the med to help me sleep but I already take 15 tablets a day + pain killers I cannot take any more, we have to keep plodding on until one day someone will take notice and they will start looking at a real cure or a least a means of controlling Fibro. Let’s hope, but we must all stick together and keep pushing for it by contacting our MP’s pushing our Doctors and the NHS. Every hospital should at least have a Fibro specialist in it.


My pain clinic told me to exercise. I would luv to do exercise if my body was'nt in pain. I get a lot of headaches & sometimes I bare to lift my head!

It would be great if there where jobs outside that would permitt us to lay down & lets us to to get some fresh air & exercise!!!!!!




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