20 years of chronic pain

Hello everyone, I'm new to this forum but not new to pain. Almost 20 years ago I had decompression surgery as I had 2 severely prolapsed discs. Once I had recovered there was a period when I was able to get on with my life fairly well. I was not free from pain but it was manageable for the most part. But this didn't last and 12 years ago I needed more surgery- this time a 4 level lumbar fusion. I was warned that I would still be in pain but mobility would improve. Fast forward. The pain has continued to worsen and my mobility has decreased to the point where I am dependent on a mobility scooter when outside the home. I am also unable to cope with various day to day activities. I also have other health problems. I take a ridiculous amount of analgesics, including Gabapentin (which I am currently aiming to cut right down) and morphine, as well as medication for other things. Unfortunately, having fairly recently moved to a bungalow to make life easier, I now have a GP practice which is either unable or unwilling to provide the support I need. The pain, meanwhile, is getting worse and more widespread and I frequently feel at the end of my tether.

I apologise for the length of this post but being new to this site I thought I might as well explain as much as possible

11 Replies

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  • Hi there Jenles,

    I'm so sorry you're in so much pain, I know what it's like and you sound right at the end of your tether.

    The gabapentin is actually a really great drug, as mixed with opiates it magnifies their effect.

    You say you're taking morphine, is this MST or a different preparation?

    My pain is managed by mixing pregabalin (gabapentins big brother) with oxycodone. Both of these drugs are a improved version on the one's u mentioned in your op. Tell me, have u tried these or been offered them?

    I paid to see my pain specialist so as to jump the queue, but you can also pick and choose your doctor and find one that'll be open to suggestions (if medically appropriate of course). It only cost me £100 and I'm on the south Coast so things are usually as expensive as they'll get in the UK. It's worth the investment as being in the amount of pain you describe is the pits.

    If u you need me to clarify anything just give me an '@ mention' and I'll try to reply promptly.

    Best wishes.

  • Hi Jenles. I don't mean to intrude on your post here, but I also live on the south coast and would happily pay £100 to see a real 'pain specialist'. Have just got home today from the NHS 'Pain Specialist' who just told me to stop taking all pain killers and muscle relanants and antidepressants plus to stop using my TENS and EMS machines. This after 21 years of serious pain. Usual disc probs and now severe constant pain (or agonising pain) releived not much at all with a frightening dose of various pain killers from Morphine & many more drugs.

    I would give almost all I had to be reived of this pain, I really would. Can you recommend me a good pain specialist somewhere down this way?

    many, many thanks in advance.

    Simon.

  • Hi Jenles

    I agree with gindy I did the same I paid to see a private specialist and the help I got was fantastic. I also got a referral to have 2 spine operations done on my back on the NHS and it has helped tremendously, I still take pain relief and that helps me to get on with life. But the pain is no way near what it use to be as long as I keep taking my medication. So either push your GP to get a referral or go private. I wish you all the best of luck.

    Jan101 xxxx

  • Which specialist(s) did you see gindy and Jan 101?

  • Hi Jenies

    I saw a Dr Way and the other specialist was a Connell stone. They are both excellent in there field. Mr Way also lectures around the UK and possibly elsewhere. I live in the south east but I don't know where you live. If it's not to far away I would highly recommend them. I truly wish you lots of luck as I know before I saw them I could hardly walk with the pain. Now I am up and about but still on my medication for pain relief. I even been done Christmas lunch and boxing day lunch which I thought I would never be able to do this year as I have been in bed for nearly 1 year. If I can be of anymore help please do not hesitate to contact me. I truly wish you all the best and take good care of yourself.

    Jan101 🙏 XXXX

  • Jenles i paid to see the same pain specialist we see on the NHS here in the south east, but jumped an 18 month waiting list.

    Do some research into pain specialists nearby where u are. But definitely be prepared to travel to see the doctor of choice.

    Good luck.

  • I used to have a very good pain consultant at a London hospital but when she retired I was told that there was nothing more that they could do for me. I later saw someone locally who basically said the same thing. If applying all the pain management techniques were working for me it would be fine but they aren't. I also have 'new' pain and am awaiting an appointment at the national orthopaedic hospital but, 4 months after the referral I still haven't heard anything. I usually cope quite well but am tired of no-one appearing to take my concerns seriously. One of the GPS at the new practice told me that 'no-one needs to tak all this medication ' despite knowing nothing about me or my medical history.The one I am now seeing seems more supportive but has reccommended that I stop the Gabapentin...

  • Well it's best to follow medical advice Jenles as I know nothing of your situation really. Even then I'm not qualified to give you sound diagnosis, just experience of my own pain issues.

    Whatever you decide, I wish u the very best in your search for a peaceful pain free life.

  • The trouble is with my new GP I'm not sure how much is medical advice and how much is financial considerations. I guess it's a case of wait and see. Thanks for your concern and comments folk.

  • Hi jenies. I feel your pain as I've been suffering for 20 plus yrs with chronic pain. Mine started in my knees fast forward a few yrs,operation and operation each telling me they would make me better but made me worse now nerve damage down my right knee, my knee I can't Kneel on. Fast forward a few yrs now got shoulder back hips and feet. Now gp has told me I have fibromyalga. I like u take pregabaline and morphine and other meds . It makes u feel like crap. 😃

  • It's not exactly fun is it Debbs73? I usually try to stay cheerful and positive but every once in a while it all seems just too much. I also have fibromyalgia (and quite a lot of other things wrong as well) and between the pain and the medication I am permanently tired.

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