Worried about pip assessment - have rare condition

Here's a bit of a background into my condition first of all.


I suffer from two debilitating conditions that both occur in my Oesophagus. One is called Diffuse Oesophageal spasm and the other is Nutcracker Oesophageal spasm. Both of these conditions aren't very well understood, the cause for them is unknown and treatment is quite sketchy. Basically, my Oesophagus (food pipe) contracts at several points which mimics the same chest pain as you would experience with a heart attack.

I look completely fine until I have a spasm and that's when it renders me basically unable to perform even simple tasks like even walking! I regularly experience attacks for no reason whatsoever. There is no pattern to the condition and can happen whether I'm sitting down, asleep, walking or whatever and I hardly ever know when I am going to have one. I currently have 3 to 4 major attacks a day where I suffer crushing and stabbing pain in the chest which knocks me to the floor for either seconds, minutes or hours. On one occasion a whole day (this day I couldn't even get out of bed) This, embarrassingly, sometimes causes loss of bladder and bowel control. I have collapsed in the road and car parks previously and my wife always has to be on hand to catch me or move me if she can to avoid danger.

During the attacks I am unable to communicate and have no real idea of what is going on around me! It means unfortunately, I can not be left on my own as I become completely uninhibited. I can't bath on my own in case I have an attack where I black out which has happened on more than occasion, I can't cook simple meals as I am unable to use knives etc, I can't make tea and I can't do things like hold my little 1 year old boy in case I drop him. On occasions, during eating, my food gets stuck and I feel as though I am choking. This can last over 40 minutes on some occasions. The food gets stuck at the centre of my chest and if I try to wash it down, the water gets stuck on top of the wedged food and rises up causing me to start to almost drowned unless I am able to be sick.

It keeps me up on most nights so I always have Insomnia.

The DR's have tried me on everything from smooth muscle relaxants, anti depressants, anti-epileptics and Valium. Nothing has worked. They feel completely perplexed as to what to do with me. They are going to revoke my Driving licence and they are now asking me to take Calcium Blockers and that puts me at even greater risk of Black outs.

After having an attack, I am left too weak to walk properly and have to be assisted. But before an attack attack I can walk fine, however long.

I am really scared about my PIP assessment; I have it on the 7/5/2014 and I worry that they are going to tell me I am not entitled to anything.
The only issue I have is that if i'm not in pain when having the assessment, they may think I am capable of everything, because I basically am until I have one.

I know it sounds crazy, but I am kind of hoping I have a bad one so they can see what I am actually like to make an educated decision! At the end of the day I lost my job because of this condition and blacking out etc. The likelihood of being able to get another is minimal. Who's going to want to employ someone who's known to have a non-treatable condition who when having a spasm collapses clutching their chest?

What do you think my chances of passing are? Can you offer me any advice to help my case? I already have a letter from both my GP and GI specialist explaining the condition and the symptoms I suffer with. I also am also keeping a diary and have used the template on this very site which I have found invaluable.

I suffer tight chest symptoms nearly all day causing breathlessness which affects my ability to do quite a lot, but because I look fine other than a tight chest, I worry they will assess me as fit and because they also don't know much about the conditions I have.

I lost my job in December which was a desk job due to to this condition. My first major collapse was July last year and I have been collapsing daily ever since.

Thanks in advance

Hello and welcome to the forum. On the assumption that you are also new to the site, this FAQ should help you find your way around.

Welcome to Benefits and Work

I'm afraid I cannot tell you whether or not you will be awarded PIP but there are things you can do to maximise your chances. If you did not use our guides to help you fill in the application form, you should have a look now - towards the back is a section that tells you what to expect at a face2face assessment.

PIP help for claimants

If you are refused PIP we will help you appeal - but we will cross that bridge when we come to it.

As an aside - it looks as if your username might be your real name. If you wish to change it, in order to maintain a degree of anonymity, you can do so by following the advice in this FAQ.

My full name is showing, how can I stop it?

If you have further questions, please reply to this post and we will do our best to help you

Hi everyone.

I filled in my esa form back in December and put that only certain things apply. But my symptoms are now worse and I would now meet certain descriptors for the support group.

What should I do?

I am assuming from your post that you have not had a decision yet. That being the case I would write a letter explaining how your condition has worsened making reference to the descriptors. If possible send evidence of this such as doctor/hospital letters/reports. I would send copies of this both to Atos and to DWP. If you have not had an assessment yet I would also take a copy of this with you.

Mrs Hurtyback wrote: Hello and welcome to the forum. On the assumption that you are also new to the site, this FAQ should help you find your way around.

Welcome to Benefits and Work

I'm afraid I cannot tell you whether or not you will be awarded PIP but there are things you can do to maximise your chances. If you did not use our guides to help you fill in the application form, you should have a look now - towards the back is a section that tells you what to expect at a face2face assessment.

PIP help for claimants

If you are refused PIP we will help you appeal - but we will cross that bridge when we come to it.

As an aside - it looks as if your username might be your real name. If you wish to change it, in order to maintain a degree of anonymity, you can do so by following the advice in this FAQ.

My full name is showing, how can I stop it?

If you have further questions, please reply to this post and we will do our best to help you

Hi MrsHurtyback, thank you for the warm welcome A friend of my wife's recommended the forum to me.

I gathered that people wouldn't be able to tell me, was just hoping people might know if I stand a reasonable chance considering what I go through on a daily basis

The CAB helped me fill in the pip form luckily and she was very good. She actually made me understand the affects my symptoms have on my every day life more than realised, or the potential impact that they could have and they have since had.

Thank you for your kind words and assistance. You have made me feel very at ease and the subscription fee definitely feels worth it so far!

bottleofbest wrote: Hi everyone.

I filled in my esa form back in December and put that only certain things apply. But my symptoms are now worse and I would now meet certain descriptors for the support group.

What should I do?

Sending Documents to the DWP or ATOS