Care Opinion

Ehlers-Danlos Syndrome Care

Posted By nitratezw89

"Ehlers-Danlos Syndrome Care"

About: General practices in Fife

(as a service user),

I have an ongoing neck pain issue. I am looking for this to be investigated. I am not looking for more medication.

Unfortunately during my latest GP appointment, another GP has absolutely no idea what Ehlers-Danlos Syndrome is. I have been given more medication for 'nerve pain' and an x-ray booking. Connective tissue problems won't show up on an x-ray. So, yet again I'm left in disabling pain. Why do GPs in Scotland have no idea what this condition is? Why do we have no specialists? I am in so much pain I can barely function. I have also previously complained about similar and have had no further information.

Unfortunately my pain isn't just one part of my body so the GP also didn't have anyone to refer me to. There is absolutely no help for people like myself. I cannot work and can't cope with the pain.

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Responses

Response from Shelley McBain, Interim Service Manager, Primary & Preventative Care, Fife Health & Social Care Partnership 4 days ago
Shelley McBain
Interim Service Manager, Primary & Preventative Care,
Fife Health & Social Care Partnership

Submitted on 13/03/2025 at 09:56
Published on Care Opinion at 09:56

picture of Shelley McBain

Hello nitratezw89

My name is Shelley McBain and I am the interim Service Manager for Primary Care. I am sorry to read of your experiences and that you are in so much pain. I can only suggest that you revisit your GP practice to discuss your ongoing symptoms as most cases of Ehlers-Danlos is managed in Primary Care settings.

I hope this is helpful and all the best for your ongoing care.

Shelley

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