New! Lost! Help needed! PIP for Fibromyalgia & Hypermobility Syndrome — Scope | Disability forum
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New! Lost! Help needed! PIP for Fibromyalgia & Hypermobility Syndrome

Lilyano1 Member Posts: 2 Listener
edited September 27 in PIP, DLA, and AA
Hi all, 
So after years of browsing this wonderful forum. I finally need to reach out to see if anyone can help me out. Apologies for any tying errors in advance!

I have chronic Endometriosis, Adenomyosis but recently diagnosed with Fibromyalgia & hypermobility syndrome in June 2021.

I am unable to work and am medically retired at the tender age of 43. A bitter pill to swallow. 

I have basic PIP. But my mobility is very impaired . I’m severely in daily high pain and unable to walk, move etc,

I am due to have physio therapy & cranial physio therapy, I am also under pain management & counselling. 

I’m trying to summarise ….. 

I’ve had 4 surgeries for Endometriosis - one being 8 hours long. It had impacted by body severely. 

I’m suspecting I have Lupus. Other things plague me, but I’m trying to summarise as much as I can 

Being so unwell and chronically fatigued. I need a blue bad and so much more support to get to and from appointments. 

The cranial physio therapy is in central London / costing £50 a session - I can not afford this. 

Can anyone HELP? HELP with the statement for the PIP form.

my mood is low, I’m procrastinating at the thought of completing the PIP form. I don’t know where to start. It’s bringing on anxiety! 

If anyone can help, I would be extremely grateful.

Thank you all in advance.



  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,613 Disability Gamechanger
    Hi @Lilyano1 -  good to meet you. I also have problems due to having the hypermobile type of Ehlers-Danlos Syndrome; hypermobility issues, so I have a little understanding in that respect.
    As regards PIP, as you say you have basic PIP, but now understandably have mobility issues, have you put in for a 'change of circumstances,' or is this a review?
    Either way, PIP isn't about any diagnosis, nor new diagnoses, rather how such disabilities you have affect certain activities of daily living &/or mobility. It's worth a good look at the activities/descriptors that are looked at with PIP, & whether you can do an activity 'reliably,' i.e. safely, to an acceptable standard, repeat it as often as would be normally expected, & whether it may take you longer than someone without your disability (please read notes about this at the end of this link):
    With any PIP form you can also phone & ask for time to complete this, & will be given a further 2 weeks. As for completing this you should try to give a couple of detailed explanations of exactly the problem you had attempting/doing any applicable descriptor/activity, i.e. when did it happen, what exactly happened, why, did anyone see your difficulties, & were there any consequences?
    Hope this may help a little, but please do come back with any further queries.
  • Lilyano1
    Lilyano1 Member Posts: 2 Listener
    Thank you so much for this useful information. I do apologies for the very delayed response, I overlooked the message. I am still in Jnr process of completing, but have set aside a deadline to stick to … it is very depressing having to complete this, but I’m hoping I’ll be able to clearly explain myself on paper. 

    I really appreciate your time.. 

    Thank you so much 


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