Essie49: I would like to introduce myself as I... - Pain Concern

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Essie49

Essie49 profile image
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I would like to introduce myself as I am new to the pain forum. I suffer from chronic back pain for which there is no operation. I have had two separate years with the pain clinic. I had two lots of injections in my facet joints which didn't work so I only rely on medication. About 5 years ago I was put on 120mcg of Fentanyl patches. They have now researched that this is a bad idea and no longer do it. If you are given them now you have to sign a contract to come off them. So for the past eight months I have been in withdrawal and am now patch free. Unfortunately they masked pain in my knee and I have problems with my hip. Medications are Gabapentine, tramadol, paracetamol, diclophenac suppositories that last 18 hours, diazepam and lidocaine patches for my back. I have been told there is nothing else they can give me so I have to build my life around my pain. If I have to walk a distance I use a wheelchair. I have also suffered from mental health problems all my life which doesn't go well with chronic pain! I look forward to meeting you all.

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Essie49
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deejames profile image
deejames

That all sounds grim Essie. You will find a lot of support here even if its just knowing that someone who understands will read your post and send mental encouragement. Don't ever hesitate to post your thought. was the pain clinic helpful ? Maybe now you are off the patches you can ask to see them again.

Good luck

Essie49 profile image
Essie49 in reply to deejames

Hi dee james and thank you for replying. I am still with the pain clinic as I had support from a psychologist and physiotherapist during the withdrawal. Unfortunately they are only allowed to give you 8 sessions and then you are discharged. You have to be referred by the gp for more treatment. The support was excellent but I missed medical input. They have asked me to write up my experience and I believe they are trying to change how it works. I think they have a tough job with people like me because they really have no more to offer. It is well worth going if you need closure on what can be done for you.

Has anyone suggest a nerve stimulator that is implanted in the back? It isn't a cure but it has had some astounding results for people like you that surgery isn't an option for. However I will warn you it is a postcode lottery, they do it where I live in Southampton, but my friend has had the last one in Plymouth they say they will not fund it anymore despite it's success rate.

Essie49 profile image
Essie49 in reply to

Hi thiskittybites and thank you for posting. I have never been offered a nerve stimulator but will mention it on my last visit to the pain clinic. I have however had a very similar operation for bladder control as I was going too frequently. First they put the wires in my back then a small, can't remember what it was, box of some sort, the wires came out of my side and were attached to a tens like box. It didn't work and I had to go through another operation to remove it. I think I was a guinea pig as one of the nurses said it never would have worked for me. It was a pain carrying this box and you couldn't have baths etc. I will research the nerve stimulator. Thank you.

Essie49 profile image
Essie49 in reply to

Hi thiskittybites

Thank you for recommending the nerve stimulater. I am coming to the end of my time with the pain clinic having withdrawn from the patches so I just so happened to mention it to the physio and he said he and the psychologist I am seeing were envolved with it. Why didn't they mention it! He said he'd bring it up at the next team meeting so I'll keep you informed. This is the National Hospital for Neurological Diseases in London.

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