fibromyalgia and dla

Posted , 5 users are following.

Hi to all with fibromyalgia ,

I've been diagnosed with fibro in February this year although I've suffered with the symptoms for many years I'm now only 35 but feel about 95. My wife is a nurse and she has pushed me to go to the doctors over and over again I'm under pain management I've to have an mri scan on my shoulder on the 25 july,also acupuncture on my knees and also hydrocortizone injections on fentynol patches 50mg pregabalin 300mg,amytriptaline 50mg,citalapram 40mg.I have just been awarded higher rate mobility and lower rate care component for 18 months and to be revued after that .I have been reading all the nightmares that people have had trying to claim dla but has anyone kept updating dwp of changes to there medication and all the side effects they have .I'm really sorry for people that don't get dla buti do feel that the more you put dwp in the picture the better they will understand our problem but people must think of the ones that don't need or deserve dla you know the sort that have a blue badge that jump out of there car and walk off without any aids what so ever .I use a walking stick and a mobility scooter to get around and people look at me as if I'm taking the micky as I look fit and well but I would swoop all the pain and symptoms with them any day so my theory is keep sending letters to update your application no matter how small or big the changes are even if you experience another side effect or another pain just keep the letters flowing get a family member or a friend to write it if you can't do it but keep them in the picture as you would with an insurance claim ,keep a diary if fibro fog is bad like mine, go into depth on your application form use extra paper if you need to .that's enough of my rambling good luck to you all and may all of fibromyalgia cfs me etc make the world aware of our unfortunate condition take extra care .

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5 Replies

  • Posted

    Hi Steve

    Good to hear from you! We don't have many men come on and talk about their fibro. Think it is a lot harder for men to say how they are feeling. Sounds like you are having a rough time. I was diagnosed last June but know it has been going on for years. Talk a lot of time to find a doctor who listened and did all the different bloods to try and find out what was going on. I am lucky have a good gp who understands.

    I can cope with my fibro and do some gentle exercises that help ease the pain and fatigue. The thing with fibro is everyone is different and have varying symptoms and different levels of pain.

    Do come on again and talk to us if you are worried about anything.

    We talk about other things to so its not all doom and gloom.

    Take care

    Tess

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  • Posted

    Hi Steve

    Pleased to meet you. I'm Liz and I was told I had fibro in feb this year I also have Systemic Lupus so also have a lot of overlapping symptoms. I'm 44 and feel like 75 but I also have 4 great kids and so have a lot to contend with.

    As far as i can tell even when i think i haven't done a lot i pay for it and when i think i may have done too much i'm ok so am unable to work this pacing myself and exercise buisness. If anyone works it out please let me know.

    You seem to be up to date with benefits are there any about for people like me who is unable to work, but whose husband pays for eveything. We fall into the tax credits due to the kids but find it difficult to make ends meet as i am unable to work.? I have been very tempted in the past to park in the mother and baby lots as when i have completed my food shopping it about kills me to take the trolly to the car. These days i tend to do my food shopping on line as it makes life so much easier.

    Take care.

    Lizzy

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    • Posted

      What is a blue badge, if I may ask? I am 46 years old and was first diagnosed with fibromyalgia and had to quit my job as well. My husband is disabled and we are having a rough time financially also,but getting by, through God's Grace. I experience so much pain is places, then gaining weight, depression,  all of this was a big turning point for me. I have always been a hard working lady for my family but when the pain hit me so bad that I had broke out into a rash on my trunk area and it hurt to scratch, I went to see a rheumatologist and she examined me twice in 3 weeks and diagnosed me with fibromyalgia. I went from taking no meds then had to take 3, then 5 etc. Very depressing. I would like to know what a blue badge is, I'm clueless, sorry.
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  • Posted

    hi everyone

    lizzy call ur local council and ask for a form for a blue badge.. i got mine before i got any benefits.. tell them that u need room to open ur doors as ur in so much pain and find it hard to get into and out of cars.. i did that and got mine... anyway folks hope ur all well. i had a really bad night last night because of the pain.. i felt good yesterday so i cleaned the inside of my car... boy i now understand thats why i had such a bad night with the pain making me cry and keeping john up to because he was trying to help me..

    hope u keep smiling until we find a cure...

    luv hugs di xx

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  • Posted

    Wow Steve, you soon got your full claim after diagnosis. I know someone who was diagnosed in Aug this year and within three months got the Blue Badge and full dissability...I don't know how you both did it...I have applied three times and keep getting turned down I have also appealed with just rejection. I were diagnosed in Sept 2011 and I am so much worse now, unless I have something else as well. The Rheummy put me on Pregabalin to start with it was ok for about 6 months and then te side effects were terrible, at that time I were looking after my 90yr old neighbour I felt as old as he was then. The Dr wold not let me come off them and perscribed Oramorph and Paracetamol too. I were a total zombi! I had enough, and weaned myself off the Pregabalin, it took me 6month but I felt so much better off them and lost 12lb as well. Now I just take Paeacetamol and Oramorph regularly...it keeps the edge off I just potter about can't do a great deal of anything. I were such a worker painting, decorating, gardening ,cooking, shopping ,cleaning and caring for my neighbour (who has now passed away)and going to the gym. Now I do nothing hardly just peer out the window turning in to a recluse I think...My family don't even visit, oh well must go now nice to see you on here. Hope your back on soon. Happy New Year....Regards....Anne..biggrin
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