Incapacity to ESA declined

Hi everyone,


I’m a 32 year old male.

I have been signed off work for 10+ years suffering from Cyclothymia and joint problems.

I received a letter early this year about being moved from Incapacity to ESA and a questionnaire to fill in.

After this is went to the assessment with a nurse and waited anxiously.
Well Saturday a letter arrived with the decision that i was capable for work with 0 points scored.


This has honestly, completely knocked me for 6. Everyone that knows me, fully understands that my condition isn’t anywhere near work.
When i was originally signed off it was due to my knees, afterwards i had been diagnosed with cyclothymia and underwent medication (which i still take and is still being increased 8 years after) and also a 6 week CBT course.


I haven’t felt right for roughly 4 years and recently went to the doctors to see if something was up.

after tests and a appointment with a rheumatologist i was confirmed with Fibromyalgia and Severe Joint Hyper-mobility disorder in December 2017.
Now the more this has sunk in over the past few months and talking to my partner i realise that i’ve been too stubborn and probably prideful.
I struggle, plain and simple. Every minute of every day my body is riddled with pain. I do walk through the pain without support or aids in spite of the pain, partly due to the stubbornness and pride of not wanting to give in to the pain, partly because i was told if i start to use aids the muscles will start to deteriorate.


The more i start to look introspectively the more i see that perhaps i need more help than i realise. I live with my parents and i fear i’ve taken the help they give for granted.

When i think of what would happen if they were to kick me out or if anything would happen and they were to pass.
Would be able to sustain and look after myself properly? I start to hit the rather obvious conclusion that faces me, No.


As much as it pains me to say so. I don’t feel comfortable looking after myself let alone safe that i could do things without seriously hurting myself or others.


My joint hyper mobility means that my joints bend in unnatural ways (8/9 on the Beighton scale) and leave me having to be very purposeful when walking, if the bend too much my ankles give out. I’ve lost count of how many times I’ve sprained,twisted or rolled my ankle, how many times something simple has led to something over extending and popping.
Just walking down the street has led me to end up being on the ground and my ankle turns so easily a slight breeze could do it. being 6’6″ it’s a long way down and I’m lucky i haven’t seriously injured myself.


My Fibromyalgia basically ruins me, I feel so weak and lethargic every day. The pain throughout my body is a constant throb below the point of agony but just enough so it’s always there, my fingers and toes tingle constantly, I get restless leg syndrome where i wiggle and fidget constantly, i dont even know why. I’m hot constantly, to the point that i have to stay in my room as it’s the only one i can even slightly control the temperature of. my windows stay open and my fan on always 265 days a year. Also just in case the constant pain isn’t enough just to wake me up every 5 minutes or so I’ll get a random deep stabbing pain. nowhere in particular, a random pain in a random place. On top of this is the sleep (or general lack of it) I sleep in constantly degree of on edge. not quite sleeping, not quite awake. I hover in a bubble of un-restorative sleep. Ready to snap awake at the smallest of disturbances. The Worst of all for me is the Fog, the cognitive cloud that sticks with me every day.


It causes me to be speechless, confused and sometimes unable to function.
I’ve lost hours of days to being so lost that i just zone out.
I don’t know where they’ve gone, And any thinking back draws a blank.
I know most people get the walk into a room and forget something. I can literally walk into a room and forget why,where,who and then it seems to snowball. confusion leads to more confusion to the point where i cannot concentrate and stop in my tracks trying to recall what i’m doing.
whilst trying to cook in the past (i no longer do if i can help it) I’ve burnt and cut myself because of plain stupidity on my part. forgetting i’d done something where I’ve put something. I’ve knocked knives to the floor more times than i can remember how i haven’t skewered my foot is a mystery.


On top of this my Cyclothymia (which the doctors says is just depression but MHT diagnosed me?)
Causes me to cycle moods now and then. most of the time however i hover in the 3.5 – 4 out of ten now on medication (225mg venlafaxine) But when it drops for a couple of days i hit 1.5 – 2, i lose all interest, the small amount of drive and motivation i may of had in a day after fibromyagia just doesn’t exist. I wallow and struggle to get out, however it subsides after a couple of days.

On the other end sometimes i find myself hitting up into the 8-9 scale for a couple of days and with reckless abandon seem to lose the track, I’ve been told i speak at stupid speeds, that i act very… for lack of a better word drunk or like I’m on something. And i lose all idea of what i am capable of spending. sometimes i’m lucky enough to feel this coming. and give my card to someone. Others not so much.


I honestly don’t know what to do.

Ever since Saturday I’ve laid in bed and thought the worst.
I can feel myself slipping and it’s scaring me.
I know there is no chance to for me to work.
No workplace would support me and i wouldn’t blame them.
I don’t understand the process to appeal and i don’t know where to go now.

I rang my doctor but he told me that their legal representatives told them not to do support letters and to get the DWP to contact them directly.
I’m awaiting more support from the Rheumatologists including a Fibromyalgia support course, hydrotherapy and awaiting sleep clinic referrals.


My partner is helpful and is going to write up a letter of support for my claim.
My mother is as well.


The one support line i had, has been pulled from me and now everything that was weighing me now feels like it dragging me under.

Hi,
I was the same I went from high rate esa to 0 points.

The first thing you need to do is call esa and request a copy of the assessors report,you go through that and list everything that you disagree with and why and try to get extra medical evidence to back it up and send it to DWP requesting a mandatory reconsideration,you have 28 days to do this.Dont expect to win this as about 80% fail but you need to do it before you can go to tribunal.

If you need money while you wait for the result you need to sign on JSA/UC and hand in a sick note to get you out of looking for a job,JSA is ok because if you fail the mandatory reconsideration you can go back on to esa appeal rate but if it's UC you can't,once you are on that that's it so I would avoid UC if you can.

I would also look into changing your doctor your doctor can give you a letter if they want my doctor does.

Hi , you are definitely not alone it seems they mark everyone as fit for work and then just see who appeals , my partner has just had the same , the assessor actually lied on the forms , do what Sandra above says it's what we are in the process of doing .
Have a look at my thread " up sh&@t creak " its only a page or two down , there is a lot of good advice from other members .
Take care .:D

The nurse at my assessment also lied,ignored my evidence and basically told me on the way out she had failed me but I got a good decision maker who overruled her and kept me in support group thankfully.

Sandra it's disgusting that these so called professionals are allowed to blatantly lie and not be held responsible for what happens , people have died going back to work and several have taken their lives , one on the news this week took his life after being told his money would stop and he'd have to sell the family house , any other profession if you mess up you at held responsible even plumbers and electricians but not these people , this assessor took no notice of reports from doctors , consultants and didn't even bother to contact the psychiatrist, we've done all we can sending in several letters and highlight the lies on the assessment so now we have no money coming in and it's just wait and see , I'm sure there is a funny side to it but I might have to look real hard .:)

Sorry for the long gap between post and reply.
I sent back Mandatory reconsideration. Just recieved a phone call that it'll be 14 days til i know. I last payment was the 8th of this month so i'm now just in limbo.
I've applied for PIP and have an assessment for that on Thursday.
I'm really hoping this one comes back truthful and not the sham that the last was.
I can then use that to bolster my ESA appeal.