Cerebral Palsy, ME and CFS? — Scope | Disability forum
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Cerebral Palsy, ME and CFS?

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bethyboop
bethyboop Community member Posts: 1 Listener
edited November 2017 in Disability rights and campaigning
Hi I'm Beth  I am a mother of 2 (daughter 30 and son 27)  and a grandmother of 2 boys 4yrs and 14mths. My daughter 'T' was born at 28wks gestation resulting in cerebral palsy mostly on her right side x She has had botox and tendon stretch and tendon transfers, she was on epilepsy medicationwhen she was very young as it was thought that shehad petit marle. She has scoliosis of the spine and suffers from a lot of pain, discomfort and numbness all over her body but mostly from the waist down x She has days when she has no energy at all and no enthusiasm or drive x she suffers grom complete exhaustion both physical and mental x I don't know much about ME and chronic fatigue syndrome but i understand that there could possibly be a link to cerebral palsy x I would like to know how we find out if T is suffering from cfs. How do we approach her Dr and suggest that we think she might be?  Can anyone give us advise please x Thank you x

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  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
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    Hi @bethyboop, and welcome!

    I have a diagnosis of ME/CFS, so I really hope I can help you. I'd recommend speaking to your daughter's GP as soon as possible, as some referrals require evidence that you've been suffering from symptoms for over four months before you can access a specialist, and having this on your daughter's medical record is the best form of evidence. I'd also really recommend keeping a 'symptom diary', featuring your daughter's activities and her various symptoms at various points of the day, over a few weeks, as this will help your GP to better understand the situation.

    Your GP is always the first port of call in discussing a diagnosis and in some cases can diagnose/rule out the condition themselves. However, I'd definitely recommend asking to see a specialist if you can: there are clinics all over the country who have trained professionals and good management resources and courses for managing fatigue, even without a diagnosis. Action For ME have a local services search that you may find useful; for some of these, you can also choose to self-refer and be assessed this way. 

    The diagnostic process is quite time consuming, so if you do believe that your daughter has ME/CFS but doesn't get a diagnosis straight away, don't lose hope. For what it's worth I hope she doesn't have to live with and manage another condition on top of her CP, but support and awareness of ME/CFS has really improved lately so I really hope you're not too disheartened at the thought. Let us know how you get on and if you have any further questions, I'm happy to help!
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