Fibromyalgia and struggling with PIP form

Hi HC

I don't want to increase your stress, but I have a feeling I might do so - so please bear with me.

One of the problems if you have a fluctuating condition is that if you try to describe a 'better' day, the assessor will likely interpret that as a 'good' day and you run the risk of not being awarded anything. I would avoid using a term like a' better day. Describe your worst days. I wouldn't talk about 'pacing' yourself unless it's really relevant because it's open to being misinterpreted.

Unless the assessor has the condition, they will have no idea what you are talking about. I would caution against using the term 'body aches or muscle aches" even though it's a common term - it sounds too fluffy and minimises the pain you're in. It could be in muscles, tendons, ligaments etc. There's a well-known meme that says - sometimes the tips of their hair hurts, and that's what it is like for many people. (By the way - it's the word 'ache' that minimises what you may be going through). What is your pain like? Is it a severe burning pain? Is it a stabbing pain? And do you have increased sensitivity to touch? Don't say it's a dull ache - say it's a consistent pain. It may be a severe and consistent pain. What happens when you're in pain? Do you move more slowly? Do you have to stop to catch your breath? Do you have balance issues - do you drop things or have you fallen? The risk of falls is higher than for someone who doesn't have fibromyalgia. Do you take any medication for the pain, and if you do, do you experience any additional symptoms? The DWP get hung up on medication - so if you don't take anything, explain why or if you have difficulties getting pain medication that works - then say so. You don't have to include all this - I just want you to make sure that you describe how debilitating the condition is and focus on that and the specific PIP criteria - not a few random 'better' days. You've been through the training, so make sure that on every question, you are thinking about the safety and reliability issues. (Page 17 and 18 of the guide to PIP claims and reviews)

If you say on the form you push yourself and you end up doing too much, they will assume you are capable and managing the condition well. If you use the word 'little fatigue' - they will asssume you are tired some of the time, just as they get tired. Only you know what your condition is like and I don't want to put words in your mouth, but you need to make sure you are accurately describing what you experience for the majority of the time. I think it's better to say that you get fatigued to the point of exhaustion, where it is impossible to hold your body upright, and you are forced to lie down. Does the fatigue/exhaustion suddenly hit you or is it something you constantly feel? Mixed with the pain, exhaustion means that you are probably not safe to cook or shower alone (that's even if you can get in a shower)

Brain fog - it's a common term, but assessors often don't take it seriously. So you need to give good examples of how that affects you under the PIP criteria. (You can also add in any of these terms "cognitive dysfunction (my particular favourite), mental fatigue, cloudiness, forgetfulness, lack of mental clarity") "Brain fog' can make you unsafe - such as in a kitchen environment - if you have appropriate examples, put in a couple.

Driving - they will ask you about it. If you only drive once a month, you say that you don't drive for the majority of the time. You are not supposed to be penalised for driving, but assessors love to jump on it. However, you can always say you have no choice - and for many people it would beat trying to get on a bus or train or walking.

Obviously, you must tell the truth on your form. However, when describing your disabilities, consider the language you use (It's half the battle with PIP). Avoid minimising the nature of your condition (accidentally) and don't assume that the person reading it will have any prior knowledge of the condition, understanding or its impact.

I know you are saying that you are going round in circles with this. With so much at stake, it's not surprising - but be kind to yourself. You can only do your best. I would go back through your form and look to see if you've included things that really aren't necessary and make sure you have described what it is like of the majority of days.

BIS