Fibromyalgia & DLA- any advice?

pamaris · 4 December 2008 at 11:51AM

Hello,

I am 99% certain I have fibromyalgia (mum has it, so does grandma; I have all the symptoms). Anyway my rheumatology appointment is finally coming up next week, in which I hope to get a formal diagnosis and some medicine.

Last month we were worried OH would be made redundant, so I was thinking, oh no I might have to go back to work (I was a graphic designer 7 years ago, but have been raising kids all this time). Thinking it through I realised I can't go back to work; I just would not be physically able to do it.

I have googled "Fibromyalgia DLA" and it seems to be approved maybe 50% of the time. I want to apply, but I need some sort of guidance on what sorts of things are relevant to the form. I was wondering if anyone could point me in the right direction?

In a nutshell, I have chronic pain, tightness, spasms, tingling, headaches, exhaustion and more... it all comes and goes. I can walk and do walk each day but I am in pain most of that time. I don't have "care needs" as far as feeding or washing myself, though I do need my OH to do a lot for me, such as the shopping or strenuous things around the house. Also I haven't been able to get my driving licence the past 18 months because I never seem to have a good hour or more stretch without pain to practice. The kids miss out as well because often I'm not well enough to take them to do fun things. Won't go into too much detail about it all- but basically the biggest issue is mobility, though sometimes I am "fine" (well, sometimes I am "fine" when I am laying down with my eyes closed for an hour or more!).

The long & short of it is that I know I can't work because of all this, so I feel because of that I should be entitled to DLA. However I don't know how to fill out the form.

Any suggestions are welcome- particularly websites that might walk me through what to put down on the form (one can hope).

Thanks!

suep · 4 December 2008 at 12:12PM

Hi, I was dx with Fibro 12 years ago, had to give up work about 8 years ago and was lucky enough to get DLA about a year later, so it was quite a long time ago now and Ive heard the form has got bigger since then.
The only advice I can give you as its such a huge form, once you have it ask CAB for help with filling it in. It's best to fill it out with how you are on a bad day as they dont seem to understand 'I can do so & so on one day and more on another day. A friend of mine was turned down and had to appeal a few times before she got anything so its worth keeping on at them.
Good luck with your app.
sue

suep · 4 December 2008 at 12:13PM

Forgot to say, there is a Fibromyalgia thread on this forum everyones very friendly and will probably be able to give you more advice than I have
sue

pamaris · 4 December 2008 at 1:15PM

suep wrote: »

Forgot to say, there is a Fibromyalgia thread on this forum everyones very friendly and will probably be able to give you more advice than I have
sue

Thanks Sue, I'll start by having a look at that thread. It's a long one though!

nanokitten · 4 December 2008 at 3:15PM

I know I say this alot but I think it is important that if you are unfamiliar with the dla process you should get professional help from an indepandant benefits advisor to fill in the form.
Pamaris, yours sounds like a classic case where you may not be as aware of your needs as you think you are.
you say I can and do walk, but for the purposes of DLA you only count the walking which you can do before the onset of extreme discomfort.

You say you have no care needs (shopping, housework etc do not count) but dla does not consider what help you get but what you have difficulty with:

so if, for example, you often don't get dressed or you skip washing your hair as its too painful, or eat convienience foods as you don't feel well enough to cook a meal from scratch then they would count.

As people with chronic illnesses get so used to living like that it doesn't often occur that you are doing it (or that it is painful to do it), this is why you need objective outside help to look at how you manage.
The CAB, DIAL, local charities such as cvs will be able to offer a benefit advisor to help.

pamaris · 4 December 2008 at 3:42PM

nanokitten wrote: »

You say you have no care needs (shopping, housework etc do not count) but dla does not consider what help you get but what you have difficulty with:

so if, for example, you often don't get dressed or you skip washing your hair as its too painful, or eat convienience foods as you don't feel well enough to cook a meal from scratch then they would count.

Thank you! I think I will get in touch with the CAB after I see the doc.

Upon reflection, it is as you said- I probably do need more help than I realised. Your comment about eating convenience food stands out- because I used to do a lot of baking (yummy blueberry and banana chocolate chip muffins) and I used to do a lot of batch freezer cooking, but now it's all about the fish fingers. Yes I CAN make a meal from scratch, but I could probably only do it once a week.

Also the mobility bit is confusing- because like I said, I CAN walk, but I do suffer for it. I tend to suffer more in the aftermath of exertion than during, though I suffer during about half the time or more. Perhaps one of the charities can help put all this in the right words. Ironically, I hesitate to call the CAB because of the stress and strain that will be caused simply by attending the appointment. I guess that's counterproductive.

What bothers me is that I look fine- someone could see me walking down the street; but they don't know what is going on at the cellular level in my body.

SailorSam · 4 December 2008 at 5:09PM

http://www..disabilityalliance.org/f32.htm

pamaris · 4 December 2008 at 6:21PM

SailorSam wrote: »

http://www..disabilityalliance.org/f32.htm

Thanks- there are 2 dots in the link though: http://www.disabilityalliance.org/f32.htm

I also found: http://www.benefitsnow.co.uk/dlanotes/virtullyunable.asp which was immeasurably helpful-- especially this part:
"It does not matter whether the severe discomfort occurs at the time of your walk or later. What counts is that the discomfort is a direct result of your attempt to walk."

Old_Meanie · 4 December 2008 at 8:42PM

Hello Pamaris

I have Rheumatoid arthritis and receive DLA after several attempts and an appeal where I was so ill I got locked in the disabled toilet!

Here is my advice: the most important thing when completing the form is to say what you cannot do. I know that sounds simple but many claimants say what they can do with help because people with a long term illness usually try to be positive and they get turned down. Dont say if my husband helps me I can wash my hair say I am not able to wash my hair period. Also they look for words like frequently and difficulty. The first time I applied on my own I did get the lowest rate but deteriorated fast until I was virtually immobile on morphine then my partner got in touch with the local county council's money unit and they were fantastic and sent a volunteer to my home to fill the form in for me. Please please get help. If you go via CAB do try to see an advisor who has experience claiming DLA. Another suggestion is to google NRAS (national rheumatoid arthritis society) as fibromyalgia does have some symptoms similar and they do a special booklet about how to fill in a claim form for DLA especially for RA sufferers. Lastly do not give up. The truth is it is a very difficult and drawn out process and I felt like a criminal but I persevered with help from the council and my wonderful GP and consultant who wrote letters and filled in questionnaires for me. If you can get your GP to support your application it will help considerably. HTH

nanokitten · 5 December 2008 at 3:14AM

pamaris wrote: »

Ironically, I hesitate to call the CAB because of the stress and strain that will be caused simply by attending the appointment. I guess that's counterproductive.

most benefit advisors will do a home visit if you need one. I think the way DLA is judged is 'most of the time' so if most of the time you can't manage with heavy pans etc you would probably pass the main meal test, there is an opportunity to state the number of days you have problems on the form.

If your unsure, I'd start to keep a diary untill you get your appointment, write down how much you can/cant do each day and I add a scale to say how well you feel each day (say 1 being in the hospital and 10 being in the pub). note how far you walked, what point extreme discomfort started and how you felt afterward (or you can try walking a know distance, say up and down the garden path and record how you do). also note things you didn't do ('skipped brushing teeth' or didn't get dressed) and things which your husband did or helped with, this can also include encoraging you to do things.

Also have a look at the DLA sticky at the top of this boad for more idea of how things work

purplecatlover · 5 December 2008 at 8:47AM

the other place to try to ge thelp is dial uk if there is one in your area, goole dial + mytown brings up mine, they are apparently excellent.

Fibromyalgia & DLA- any advice?

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