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Fibromyalgia Action UK
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DLA

I’ve been really ill over the last two years and eventually all my diagnosis came at once. I’ve got bilateral ovarian cysts, fibromyalgia, fibro dysplasia and chronic fatigue syndrome. I’ve battled and battled for two years for the doc to believe me or even listen. Now they have. I just need to get past the DLA. What is your story/

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I do a two hour jouney on three busses to work, work from 11.00 to 7.00pm (I work for a training company - I teach maths). The owner of the company will only pay me till 5.30pm as everyone finishes at 5.30, I have protested that I work till 7 but she says its my fault and instead of being in the building to go and wait outside for the busses to quiet down. I do the same jouney home on the same busses and get home about 10.00pm Tuesday, Wednesday, Thursday, Friday and Saturday (I am at work at the moment - watching students do maths tests).

I am not ready to give up the career I spent so long studying for, I had a fear of maths at school but got over that and now I teach maths and have done for 26 years.

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But thank you for your support. One day!!

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Good Luck with the DLA, I guess the link you've been given is for benefits and work, a brilliant site and so helpful. When claiming DLA complete the form as if its your worst day, I complete the form on my laptop by just putting the question number and then type my answer before writing it on the form so I know when i complete the form the answer is just as I want it to be.Don't worry about repeating yourself on the questions.

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I joined Benefits and Work in 2011, I completed the forms just as they say and still i got nothing. BandW is a good site as long as you subscribe then you get access to full documents.

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I used Benefits and work when i applied ealier this year for my DLA to be renewed and I have been granted it indefinately now.

I guess at the end of the day its how badly the condition affects your life.

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Hi Tibby 3a,

I have been dx fibro by my gp for 3 years, but then i had other problems so went to a neuro for MS. Thankfully i have not got ms, but got sent to an immunologist to get a proper diagnosis today. I have a diagnosis of,

Fibromyalgia with 15 out of 18 tender points,

Chronic Fatigue Syndrome,

And Hypermobility Syndrome.

With my underactive thyroid and asthma some people might think i am greedy lol.

I cant beleive i feel like i am finally being taken seriously, and not made to feel like a hypochondriact.

I also have been down the DLA route and failed but now i have firm diagnosis and a specialist i am going to give it another go.

Good luck with yours.

kel xxxx

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all the best hun x

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Hi Kel

I've got joint inflamation and pain in 13 out of the 18, so I know where you are coming from. I've got many other problems too. I now am fighting again. Susan

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My joint pain is really bad at the minute but it could be my nerve pain tomorrow that is worse, i dont know which one is going to flare up and also dont know which one is causing what i am so confused.

The killer for me is the fatigue, i get fatigued doing things on a daily basis but when it flares up bad it can really have an effect on my daily life and thats the bit that people dont get.

Do you get pain in your ribs?

I have that constantly it never gives me a break.

Sorry but what is fibro dysplasia?

kel xxx

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Hi Jazher

Fibro dysplasia is a bone illness where my bone marrow is becoming fibrous. ncbi.nlm.nih.gov/pubmedheal...

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Thankyou Tibby3a.

xx

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Hi Jazher. I was shocked to have been diagnosed with this, it was found by accident. My consultant wanted an x ray of my shoulders and she saw a shadow, I was rushed into the hospital for a CT scan and within two week of that a biopsy of the shadow and then the diagnosis. A rare (only two at the Stanmore) bone illness, with no cure and no treatment. So I have just got to see how it affects me and regualr vists to the consultant.

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Its just not fair is it.

As if we need anything on top of fibro.

kel xxx

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Hi Tibby 3a,

I've had FM for nearly 10 years now and have always been turned down on DLA every time I applied. FM unfortunately, as it is not a progressive illness, doesn't seem to qualify for benefit. I was told I might be eligible for tax credit, but not DLA, which when you look at the current criteria is true so unless the criteria changes in our favour it is a lost cause I'm afraid.

Good luck,

Ness

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Hi Ness. I rand the DLA phone number and was told that the appeal goes on certain questions and points scores. During my telephone conversation I was asked what type of questions did the appeal council ask. When we got to the care at night point, I told her not once did they ask me about care at night. I wake in sweat on a regular basis, my joins burn so hot and are swollen on a regular basis, I have to sit in a cool shower or bath to cool my body, I have to have my sheets and quilt changed, I wet myslef in bed on a regular basis, I am so cold that I have layers of clothes on and have to sleep with the heated blanket on... The points go on AND NOT ONCE DID THEY ASK ABOUT NIGHTIME. I went to my doctors last week and he said they go on the basis of how a person copes during the day, and at night. So I realised that NO QUESTION ABOUT NIGHT = NO DLA. So I fight again.

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PLEASE all of you get professional help with DLA forms like at CAB and take copies before filling in and use them to keep record of what you have written. It is the words you use that are so important. they are written by people with degrees in form making. CAB will make the copies for you . good luck with those forms and dont give up. xxx

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The CAB would not help me because I work and I am not entitled to legal aid (even though when I did the legal aid calculator it said I did) and the CAB said they didn't have anyone who had the expertise or knowledge to help me. So I ask where next, I realised if no one would help I would have to do it alone and yes I lost. I've had to get up this morning and start the fight all over again.

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Hi

I used CAB for my DLA and to me they were no help at all, no advice given, only put on forms quick answers, doctor no help at all either he says "I'm a GP not a form filler if I was to fill out all the forms for every disability I would never see my patients" I said " but I AM A PATIENT OF YOURS who needs help with this goddamn fibromyalgia, afterall I never asked for you to fill this form in DWP did " so here's what I got, Illnessess Fibromyalgia (joint pain) on opoids, cronic, COPD = asthma = cronic, on steroids,Depression Cronic, on anti depressants. On the part how does it affect the patient day to day, he wrote, UNKNOWN. Can the patient walk unaided, again, UNKNOWN, I walk with 1 or 2 sticks depending on ho sore I am, How often do you see the patient, he had the bloody cheek to write, wait for it, Regularly, aye right who's he kidding. Went to appeal and still refused a letter just states does not fit the criteria, can someone explain, no points nothing on letter, welfare rights never seen one like that before. Next time I'm going to use Benefits and works website I've been getting e mails from them, looks good.

(((((soft hugs)))))

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