"Chronic pain and no explanation or real treatment"

About: Ayr Hospital / Neurology Crosshouse Hospital / Physiotherapy Crosshouse Hospital / Trauma & orthopaedics Crosshouse Hospital / Xrays & Scans

(as the patient),

from summer 2016 I had been experiencing weakness and heaviness in my left leg. This then became painful and in Dec '16 I attended my GP who sent me for an x-ray which showed nothing more than 'expected wear and tear'.  I was prescribed co codamol and an anti inflammatory.

I self referred to physio early 2017 and was seen eventually.  They believed I needed an MRI so this was done and I was told I had a herniated disc which was impinging on a nerve and causing the pain.  I was then referred to orthopaedics.

After a long wait I was seen and told as there was nothing wrong with my hip they wouldn't be seeing me again.  I was also shown my MRI and told there was no herniated disc. I had basically waited around 12 weeks to be in and out in less than 10 minutes.

Later after more visits to my GP I was put on gabapentin which didn't agree with me so this was changed to pregabalin which again, didn't agree with me so was put  on to dihydrocodeine. This made me extremely sleepy and after sleeping for almost 24 hours straight I stopped taking it and went back to co codamol with morphine for breakthrough pain.

 I was then referred to neurology and again, after a long wait then seen and told it wasn't neurological but they sent me for a body and head scan.  The results showed that there was some narrowing of an artery in my neck which may explain the pain. I was given another appointment with neurology around May of this year to be told again no, nothing they can do. On both occasions I waited at least 40 minutes past my appointment time and the neurologist I saw were very abrupt and had no real interest.

Apparently neurology were unhappy about me being prescribed morphine.

My care was passed back to my GP who has now referred me to the pain clinic which I have been told there is a 5 month wait to be seen.. 

 I have no idea what is causing the pain and feel that no one actually cares. I don't feel I am being listened to I am so tired of the pain and the restrictions it has on my life. It affects my sleep, I find some aspects of dressing and personal care very difficult, I have fallen coming down stairs more times than I care to remember, if I am seated for even a short period of time the pain on rising is ridiculous.  I cant walk any distance, I continue to attend the gym but I am very restricted in what I can do.

 It seems that because of my age I am to accept it and get on with it.  I am an active person, I have gone to the gym most of my adult life and frankly Im not ready to be put out to pasture.  I cannot understand how my problem can be treated when no one knows what the cause is, pain relief only takes the edge off but it doesn't address the cause....because no one actually knows what the cause is!

 I am now starting to experiencing the same type of weakness/pain in my right leg and have stumbled often because the power seems to just go but I feel there is no point going to my GP about it because ....well what would happen?  Another year of being passed from one dept to another with extended waits in between?

I am not asking for anything more than to be listened to and told what is causing this pain and will it get better or worse....that's all.


Response from John Swiatczak-Steele, Assistant Director, University Hospital Ayr, NHS Ayrshire and Arran nearly 2 years ago
John Swiatczak-Steele
Assistant Director, University Hospital Ayr,
NHS Ayrshire and Arran
Submitted on 09/08/2018 at 10:03
Published on Care Opinion at 11:07

Dear why is this so difficult

I am really sorry to read of your experiences and I can only imagine the frustration you must be feeling.

If you would like to contact my PA with your details I am more than happy to look into this for you.

My PA is Tracy Scott and she can be contacted by: Tel: 01292 617126 or e-mail: tracy.scott@aapct.scot.nhs.uk

Best wishes


John Swiatczak-Steele

Assistant Director of Acute Services, UHA

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