Fibromyalgia/CFS/ME & benefits

luminated

rogerblack wrote: »

DLA is difficult.
(I'm applying, with CFS/ME and have a tribunal on the 25th. I believe I have a strong case for low-rate care, a reasonable one for medium rate, a good case for low rate mobility, and a reasonable one for high rate).

And I wish you the best of luck.

My hopes match yours and I wait for my Tribunal and we will see!!

GlasweJen

luminated wrote: »

What on earth has that to do you with you and in what way does it help the OP's question?

Well if I'm thinking it so will the DM. When you apply for DLA and work they check to make sure your work doesn't contradict your form.

My manager was contacted because I was claiming to have uncontrolled black outs but at the time I assembled glasses for a living. My manager was sent a form (with my permission but it would have looked really bad if I said no) to explain how I managed to work with blackouts and he had to explain that most optical glass is plastic, that I work in a team, have specific scheduled breaks etc.

The OP needs to consider how she'll answer these questions when filling in her forms.

luminated

GlasweJen wrote: »

Well if I'm thinking it so will the DM. When you apply for DLA and work they check to make sure your work doesn't contradict your form.

My manager was contacted because I was claiming to have uncontrolled black outs but at the time I assembled glasses for a living. My manager was sent a form (with my permission but it would have looked really bad if I said no) to explain how I managed to work with blackouts and he had to explain that most optical glass is plastic, that I work in a team, have specific scheduled breaks etc.

The OP needs to consider how she'll answer these questions when filling in her forms.

Fair enough but its just that you never explained why and it seemed you were veering off topic. So thansk for clearing up.

eskimo26

Its another member of A.S.S [Amateur Sleuths Society], don't spoil her fun guys everybody is entitled to a bit of excitement in their lives. :j

O.P. as has been mentioned approach your HR department, but more importantly find your nearest CFS or C.O.P.E. clinic and get referred! If nothing else they can tell what you should expect from you HR department. I know a lady at mine who negotiated some quiet time alone in a store cupboard each day to practise her therapy techniques. Relaxation techniques specifically will help.

You can hold down a job but its generally agreed this may be at the cost of your leisure time, this might not be practical with a 6 year old. If you feel your body is telling you too, then take the initiative and slow things down a little, I believe the mortgage can be renogotiated? You can ask to pay interest only maybe?

Tbh you need to gauge your own level of functionality, if you don't slow down when your body is telling you to then your body will force you to a stop, trust me anyone with CFS can attest to this.

While Glaswegen's questions are valid CFS is full of contradiction, experienced professionals will know this and can help you answer these questions especially a multidisciplinary team at a CFS clinic.

At this point it might sound silly but all i can recommend because its a general non-evasive treatment is relaxation techniques 20 mins a day for every 4 hours of activity.
http://www.epsom-sthelier.nhs.uk/our-services/a-to-z-of-services/clinical-services/pathology/immunology/chronic-fatigue-syndrome/
Their is an order form for the sutton teams own relaxation CD very much recommended.

Otherwise you can look on youtube..
Generally you are looking for:
visualisation/guided imagery (where you visualise a relaxing place based on a guided audio).

progressive muscle relaxation. (were you gently tighten and untighten muscles groups around the body to teach your body the difference between relaxed and tightened muscles. (may not be recommended for fibro sufferers.)

breathing techniques. Teaches you to breath from the stomach and not the chest. Its fundamnetal to relaxation techniques.

Finally the symptoms vary a lot so don't feel negative, regardless of what i said i know plenty of people that do hold down jobs and use various techniques to be able to enjoy their leisure time, CFS or no.

insomnia and hypersomnia are all part and parcel of CFS, you may have 1, both or none.

feeling tired and sleeping more (hypersomnia)

Insomnia is difficulty getting to sleep or staying asleep for long enough to feel refreshed the next morning, even though you've had enough opportunity to sleep.

Best Regards.

Jo_King

I can testify that claiming for DLA if you have FMS/CFS, and are working, is very difficult.

I was quizzed about work - and even though my work happens from my living room, sitting down, listening to people, ultimately the panel decided that if I could manage a job, I couldn't need DLA (I know that's not within the guidelines of the benefit, but it is how I was questioned).

The difficulty is, in my case, I can manage work if ALL my energy goes into work - so eating properly, personal care etc go out the window. I also don't have the grip or the focus to manage making a meal. However, from the panel's point of view, if I manage to be sitting, ready and dressed in the morning to start work, I can't be having problems. It's frustrating. Having had a blackout last week, that's left my shoulder and hip purple and painful, and having a letter from an ATOS dr who says I'm not at risk of blackouts... FMS/CFS are not yes/no illnesses, but the DLA system is a yes/no system.

But don't get me wrong - apply - preferably with help from CAB or a welfare rights group. Just be prepared for a bit of a battle.

You might also find it worth your while investigating Access to Work - they may be able to make work a little less challenging.

iheartbristol

I'm going to try and go through this at some point, I've downloaded the forms and have filled them in (kept rewriting as my thoughts gathered and almost ready to print them off and send them).

I have Fibromylagia and joint hypermobility syndrome (rhematologist diagnosed) and I'm dyslexic (educational psychologist diagnosed) and have been on and off depression medication for a few years now - currently not suffering from it.

I was discharged from the RAF due to the hypermobility and have since developed Fibromyalgia. I have mobility problems and cognitive problems - watching me attempt to cook a meal is probably quite funny, I'll stand there trying to figure out what the hell I'm supposed to be doing before something finally gets burned. Physically writing the forms out is impossible and I have to type them out - but for some reason they won't save properly and I keep losing my work

I will try and keep the thread updated with my efforts and results but I believe I'm not going to be successful. I desperately need an automatic car now my knee is so bad but I can't afford one. I work full time in an office based job, I can just about manage my 37 hours but I'm shattered all the time and can rarely think straight. Thankfully my job involves producing graphics in 3D - something my dyslexic mind seems to like!

rogerblack

morledge142 wrote: »

good look with your tribunal roger.

i thought i was well prepared when i went in but regards personal care/walking - they weren't interested in how much pain i was is only if i could walk/if i did my own personal care yes/no.

it was awful, had oh there too and we were stunned into silence.

they kep interrupting us and cutting us off as well when we tred to elaborate or describe something.

In principle, this might be positive or negative - for example they may have already decided you're getting high rate mobility, and want to clarify your care award.
If their 'statement of reasons' (if you are refused, you should apply for this) does not give good reason why they did not believe you on the pain you're in, then you have a possible route to a further appeal on those grounds to the upper tribunal.

Similarly Jo_King.

In short - if you lose a tribunal that you think you should have won.
You can ask to get it set aside.
This might be possible if it was agreed it was unfair as you could not properly represent yourself, and your representative diddn't turn up, or if you had to take someone to hospital in an emergency, for example, missing the appointment. This would lead to another similar tribunal.

If this is not likely, then you may be able to appeal to the upper tribunal.
This will not generally be possible if they take into account all the relevant information, don't believe you, and explain why not on the statement of reasons.

It may be possible if they do not - for example - properly explore why your stated pain when walking does/does not constitute 'severe pain'.
Other than that, if the statement of reasons lists clear errors that affect your case 'X walks 300m to the shops each day in 10 mins' - when the shops is 30m away - then again, you may be able to proceed to the upper tribunal.

At the upper tribunal, your case is heard again, and the judge will either make a decision that a new lower tribunal should hear your case, or the (more rarely) make a decision directly.

In most cases you'd want to get help before doing this.

Brassedoff

I have to agree with a few on here who have asked how you can hold down a demanding job such as a that and suffer from the conditions and manage?

What care and mobility issues do you have because that is the top and tail of the issue. I would suggest that in the current climate they will ask for an in-depth report from your works OT insofar as to the illnesses and how they impact your work/life.

I must say I am really worried you appear to want to seek the unqualified opinion of people on here (me included) when you do a job that can have such an impact on people and their families. One would have expected you to have sought the desired information from the many professional people you doubt have access to in your profession.

Good luck with your illnesses, I hope your lot improves.

A_Flock_Of_Sheep

Being in work should NOT be a barrier to gaining DLA. The benefit is based upon you care and mobility needs.

In fact in the form there is no part that asks if you are in employment, for how many hours per week, what you job entails and details of you employer. So if there is no section on this why are you being declined DLA based on employment?

Tribunals should be asking questions based upon your form.

The way I view this is:

Children get DLA and go to school. If they can go to school and manage that then should they be getting DLA???

This is no different to an adult working and getting DLA.

If adults are being declined DLA because they work then children should be automatically declined for attending school.

Brassedoff

A_Flock_Of_Sheep wrote: »

Being in work should NOT be a barrier to gaining DLA. The benefit is based upon you care and mobility needs.

In fact in the form there is no part that asks if you are in employment, for how many hours per week, what you job entails and details of you employer. So if there is no section on this why are you being declined DLA based on employment?

Tribunals should be asking questions based upon your form.

The way I view this is:

Children get DLA and go to school. If they can go to school and manage that then should they be getting DLA???

This is no different to an adult working and getting DLA.

If adults are being declined DLA because they work then children should be automatically declined for attending school.

Correct. DLA should be based ONLY on the care or mobility needs. Work, School or anything else should not be taken into account when awarding the benefit. If and it is a big if being in employment is now being taken into account, (even if it is not on the forms) it will be the thin edge of the wedge and should be resisted in the strongest terms.