I'm new to this site, my first ever blog

I was diagnosed with fibro about 5 years ago, infact I had to have 3 diagnosis as I never believed the first two, how could I be in this much pain, with no real cause??? I am slowly coming to terms with the fact that my life has changed completely and I will never get to do all the things I used to.

I have 2 boys (10 and 7) whom I adore, without their help I don't know how I would survive. I am also a carer for my husband who is in a wheelchair due to a car accident 11 years ago. There are days that he is more able bodied than I am.

I have pain all over my body. At the moment the pain in my right knee, right shoulder and lower back (right side) are overpowering the pain that I have in all of my other joints. My feet feel as though I have no skin on them and that I am walking on broken bones. I feel useless and extremely frustrated.

Is anyone else on lots of medication and does it help? I'm currently on butrans patches (highest dose), cocodamol (highest dose), naproxen, gabapentin, omeprazole and because of the cocodamol I am also on senna and lanosil. I take 20 pills a day and feel like a walking rattle, but I am still in pain, it just seems to take the edge off enough for me to get through the day. Somedays I think that if it wasnt for my lovely boys and husband, I could happily take all the pills in my cupboard, just to be pain free!!!! But I'm not a quitter.

I cannot get DLA apparently I am not disabled enough, although, I am disabled enough for a blue badge! I am currently awaiting a date for a tribunal as I am disputing the DLA decision. Any tips would be greatly received.

13 Replies

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  • I also cut out caffeine in my drinks to see if this would help with my non sleeping - which it hasn't really. I drop off, sleep for about 2 hours and then I cat nap for the rest of the night as I really cannot get comfortable.

    If I could live in a nice hot bath, I would, as that is the only time that I feel comfortable in my own skin.

  • Hi Tinkz and welcome to the site i only joined a couple of weeks ago but this site is a God send..Speaking to people who understand how your feeling and giving advice on a range of subjects so nice that there is someone out there who understands .. keep fighting the DLA I did and won took me nearly 2 yrs but got there in the end its about time this illness was recognised by the DLA..and they realised how it effects our everyday living I was awarded with low rate care and low rate mobility i also have arthritis in my knee's but the fibro

    over rides that by a 100% i wish you luck in your appeal keep strong and fight them all the way if you need any more help just private mail me

  • Thanks Jacqui, it is nice to know other people understand what i'm going through. This is such a horrid illness, I thought I had alzhemers a few years ago, until I found out about fibro fogs!!!

    I have been appealing and being turned down for DLA now for 2 years, this is my 3rd year but 1st tribunal!!!

  • Hi me too been on here bout week now and its fantastic, yeah i am on lots tabs a day prob 20 like you and butans patches 20mg and yes i rattle too prob as i am underweight 7 and half stone and 5ft 4 so that dont help either, but you keep coming on here i must admit never even thoght to clain dla so cant comment on that one i am on income suppoirt with sickness top up as cant work but how did you get blue badge ?? would like some tips on that as it would benefit me so much i only go out if i can park near to town as walking toofar a nightmare. did you just apply online? anyway you sound like you have a fantastic family unit which is good your little boys sound like little treasures and you should be very proud of them and your husband too it sounds like you all need to help each other and do you take care of yourself and each other and will speak again soon welcome love and soft hugs diddle xxx

  • Hi ya, thanks for your comments, I just phoned my local disabled blue badge department at my local council and applied over the phone, they will tell you straight away if you are eligible for one. It costs a minimal charge (£2), then they send you the forms, which you just need to sign and send back with a passport photo, they then send the badge out to you.

    gentle hugs xx

  • Hi Diddle just apply through your local council you dont need DLA for a blue badge just your DR to back you up..Tinkz i had 5 tribunals in 2 years i even got in touch with my local MP as well ..my partner did all my letters and fought hard for me to get DLA..which paid off in the end , when you go for your tribunal there are 3 people there a dr. a judge and some one from dla they ask you questions about your illness and how it effects you but you need to take every day as your bad days even though some are slightly better you are allowed to take someone with you but get as much back up from dr's hospitals, OT. people that can help you with your case .x they will prob get a ATOS dr to come to your home which they did twice for me and he told a heap of lies i have always been honest with every tribunals i went to as with this illness there is no need to lie it takes its toll on you anyway just be yourself and hopefully they will see the need you help xxx

  • Hi Jacqui, I'm basically left to get on with my illness now, I am not receiving any physio, I went to my dr last week as my shoulder and knee are getting worse and was told that I just need to work through my pain as there was nothing else he can do for me. So I have no help with tribunal!!! I've had 2 so called drs from DWP to come out and assess me for the DLA, but like you, they have told a pack of lies, so if I ever have another visit from one of their medical people, I will be videoing our consultation!!!

  • Can totally identify with the pain - and the taking of pain-killers, altho the pain-killers are a short term relief they do help sometimes - depends how bad the FM is at any particular time let's face it, it's never good ! Indeed some days are really tough and the smallest of tasks are a real challenge - but with each others support we will rally to face another day ! :)

  • thanks for your comment, the pain killers just mean I don't want to rip my limbs off and beat myself to death with them - still in pain, but manageable!!!

    It's extremely frustrating too, when someone you know says "well you look OK"! I could kill at that point!!! lol

    gentle hugs xx

  • Hi sweetie, I really do feel for u. I have recently been diagnosed with fibro although I have suffered for several yrs. I also try very hard to care for my husband who suffered 2 strokes 6yrs ago. I'm on a reasonable amount of meds,but because of my epilepsy I have to be a bit careful. take care.

  • Hi susanY I see you on here now,I don`t think "me"WIL let me on so it`s up to you to quietly spread word lol hugs Butterfly54:-)

  • Hi Susan, it's hard enough having fibro, but having to care for someone, whilst suffering yourself is almost impossible. What with the feelings of guilt at not being able to help them as much!!!

    Thanks for your comment

    Gentle hugs xx

  • Hi all am new to this also, joined last week, been reading everyones comments, feel quite lucky compared to some of you, still work full time, but somedays im shattered but fight through it, im on tramodol SR, pregabalin amatriptaline and paracetamol as and when i need it. im finding the fibro fogs hard going as i take an order then 20 seconds later have forgot it, i was diagnosed about 3 years ago but have had it for longer, doctors kept fobbing me of until i was sent to the athritis clinic there after the pain clinic and it was the physio that diagnosed me, its a huge relief to have name for what is wrong with you, then alot of people havent heard of it then you have to start explaining what its about. : -)

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