Hi I'm Jacqui

Hi i'm new to this site and its only found it a couple of days ago but its so nice to see i'm not alone which having this illness makes you feel.. I have many days of crying with pain and wishing for even an hour it would stop I'm into my 3 yr now with fibro and hoping it would be better but its not it just seems to get worse..but as sad has it sounds you do learn to live with it but its down to making a lot of changes in your life and learning to pace youself and its taken me 3 yrs to realise that , frustrating is not the word . I cant plan anything with my family because i dont know what sort of day i will be having its basically i live from day to day..I'M so happy to of found this site it answers a lot of questions that my dr does not seem to know the answers to hopefully i wont feel so alone now ..Is anyone else housebound with this illness i can only walk a few yards then i'm in the most excruciating pain..i have to rely on my partner to take me to the shops i'm on a lot of medication (naproxen ,citalopram.,Amitriptyline,Omeprazole and dihydrocodeine.. does anyone have any ideas of what i can try because even with all the meds i'm on i still get pain i also have Arthritis in both knees and get terrible low down back pain which knocks me for six ... I have now been referred to a pain clinic and they put all my meds up but hope they can offer me something else when i go next month.. sorry to go on but my heads full of questions

4 Replies

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  • Hi Jacqui, I realise when I read posts from others about how much pain they are in, how 'lucky' I am. I can walk without aids, I'm still working part time from home but it's a hard job and makes me very tired. I don't know about painkillers but a lot of people on the site seem to take what you take. I'm on Gabapentin. I take paracetamol but obviously I'm nowhere near as bad as a lot of people.

    I have a lot of lower back and hip pain and also pains in my knees. I'm so stiff in the mornings, getting out of bed and dressed can take a while and then it gets a bit better.

    Sitting down in the evening makes me really ache, I don't sit, I 'loll' on the settee and then when I get off it, I'm so stiff and ache so much.

    I hope they can help you at the pain clinic.

    Sue

  • Ty sue for your reply its nice to be able to talk to someone who understands fibro unfortunately i have been hit hard with it i was able to walk a distance a couple of years ago but seems to have got worse i have to use a crutch when i go out to help me walk but unfortunately its only a short distance .. its took me 3 years to fight to get help with DLA but only been the last month that i have been awarded with it

  • I'm glad you finally got the DLA Jacqui. I'm told, not sure if it's true, that most people don't get it the first time they apply for it. I'm still able to work but it's sooo hard and I'd love to give up and buy a bungalow but not sure I could manage financially. I suppose if I get to the stage where I can't work, I'll just have to give up and apply for it. I just don't think I'd be granted it as I'm able to work even though it nearly kills me.

  • Ty sue and lynn for your help and support. yes sue it took me 4 tribunal appeals to get low rate on care and low rate mobility i really wish i could work and always have worked untill 4 yrs ago but i could'nt hold down a job as i dont no from days to day how i will be i'll look into the hydro pool though lynn but i live in scotland way in the highlands and not much around here and its a good 16 miles into town but will give it a look thanxs again..

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