Do you have experience in Pain Management Programmes (PMPs)? Can you help us?

[PainConcernProjects]

We need you to tell us what you know about pain management programmes (PMPs) either as a volunteer or a member. We're looking for your thoughts on how volunteers can contribute to the groups and any questions you would like to ask about them. Your responses will help inform a workshop at the British Pain Society Annual Conference in Bristol on 12th September 2019. If you have any questions or suggestions about how to improve PMPs, please comment below or send an e-mail in confidence to: [e-mail].

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My concern which is my story is that when all tests fail you end up at pain clinic to be treated which is good if it can be treated for majority of patients , but like myself who had infusions , acupuncture , medication ,to no avail , this went on for numerous years and then I was diagnosed with complex regional pain syndrome , and for nearly 20 yrs these symptoms got worse all over my body till 2011 where I was found to have gone into retention and bowel dysfunction , and for nearly a year they didn't know why this was happening , so after tests where they were looking for cancer and I was mentally exhausted I asked my new GP to send me to the Walton center Liverpool after I had looked on the internet about this pain specialist who I got see private , and like I have explained to yourself he referred me to see a neurologist who did a emergency brain and spine scan , then a letter arrived to say they had found changes in my neck and I had to see a Mr carter.i saw Mr carter who asked me what I had been told , I said that just to come and see yourself , well he said in sorry to say that you have cervical myelopathy and not complex regional pain syndrome in other words I was misdiagnosed and that was all down to my arm being pulled in a machine,so he put it as a slow onset cervical I had op shortly after to stop progression but in my case it was at a advanced stage , and now 6, yrs on I need another op. So my concerns about pain clinics is after treatment and no benefit and the warning signs were there , neck pain on and off , twitching from hand to other parts of body , cold clammy hand , why not sit down and have a rethink , look at the notes ,or do a phone call for advice , not just label someone with something the havent got , then have a surgeon at end of my journey to apologise for mistakes that other drs missed . I look back and think I was just unfortunate that I probably saw the wrong drs at the wrong time.

[Hermes123]

I'm Hermes123. I must of attended a minimum of six Pain Management Courses over many years! Starting with the very basics the home? I think one of the most important of all, especially if you have spinal problems, this seems the most logical of all the layout of ones kitchen, most people carry on year after year with a nonsensical layout, such as heavy items, plates: pots and pans on the lowest level so one has the furthest to lift waiter

objects, there by putting more strain on ones spine, seams logical but not many people think about it at all. I have ask a number of people if that is the course they first started with, it would appear that has now been dropped.

One of my very last pain management programmes I attended, one the final week! We were ask what pain ment to the individual and too go home and do a write up how it affected each person.

On my way home in my car I wrote a poem using two animals as characters, when I took mine in the O/T. ask permission to use my poem as an example. So basically it is you working ones own logic in dealing with ones own pain. Hermes.

[Tourk]

I've been to one pain management program at the local hospital. They basicsl said I was taking to many painkillers and that was it.

I also went on a how to a mental health clinic. In an effort to cope with the pain I'm in. That was helpful in the sense that pain makes you very isolated and removed from Society. Even with in your own home when your in bed because the pain gets to much. The feeling of isolation can be overwhelming as you can hear the family carrying on with their life.

Pain can be totally debilitating, it's makes it hard to concentrate and to cope with even the simplest of tasks.

The mental health did help me understand why I feel a certain way but didn't really offer any solutions. To be fair they were not specialists in dealing with patients in pain, but did their best.

Different drugs and treatments can help to reduce pain but they also give the patient hope. The hope that their is more to life than curled up in a corner pulling hair out, thinking of ways of killing your self so you have some control over the pain.

[Sweetlucy]

I had my first session at the pain management clinic so it's a bit early to pass judgement. What did upset me was being told that physiopathy, accupuncture, chiropractist, massage and osteopathy do not work so save your money. The course is to train your brain not to focus on the pain. Impossible to do when the pain keeps you awake all night. I get the impression that this is all that is left when all else has failed and that doctors have given up on me.

[Davek723 in reply to Sweetlucy]

Hi there , I tutor for a group who focus on giving information that people in chronic pain and associated mental health issues can take away and use. From reading your post it looks like me and most living with chronic pain that sleep is one thing that people focus on , so lack of sleep through pain leeds to fatigue then more pain anger frustration etc etc. Creating whats called a vicious cycle. We focus on breaking this cycle as much as possible. It can get a bit deep as when you open up sleep issues it may well be firstly sleeping at the wrong times or it may be a stigma that if you sleep in the day that you think people see you as lazy. Or it may be that you focus on the pain keeping you awake when maybe your brain is running wild with thoughts of despair of no one listening of what the future hold etc etc. Sleep is one of the biggest things for people with chronic condition. I have done much research into many sleep patterns , e.g..there is a 90min pattern I use sometimes as i find sleeping for longer is at times impossible.

Just a few thoughts from reading your post. Im sure some of it may make sense.

If I can help further please let me know.

Many thanks dave

[Sweetlucy in reply to Davek723]

Thank you for your reply. I've never been a good sleeper even before the pain. It's got to the stage when I hold off going to bed, usually after 1am The psycho babble gets to me and most of the time I haven't a clue what the psychologist is on about. What does help is being in good company and having a laugh. This is worth the horrible travel on London transport through the rush hour. I do see this as a last resort and when this finishes what then?

[Boriginal]

I attended a PMP about three years ago. I started to get pain that affected my lifestyle in the year 2000. It has gradually become more debilitating as the years have progressed. I had injections, cryotherapy etc but nothing eased the pain for any length of time. I saw another Neurosurgeon who once again said no to surgery. By this time I had had enough. My GP suggested Pain Management Programme. I did some research and I suggested the programme at the Walton Centre in Liverpool.

It was a 16 day programme over 4 weeks. There was exercises, gym work, mindfulness, psychology and time spent with like-minded people. I found the whole thing very useful and came away feeling much better. Having made friends with other pain sufferers we had a support network. We had to attend a follow up session after about four months. After that we were on our own. Unfortunately the momentum became less and less. I asked the GP to refer me to physio but it never happened. People on the course saw it as the last option. That was a shame because if we had had more follow-ups or continued physio I think we would have been more positive and agile for longer.

[25clai]

I was referred to a London hospital pain management clinic, by a surgeon who removed an ovary to help with the pain I was in.

Rolling back in time prior to this, I had had many years of gynae pelvic pain which was diagnosed as varicosed ovarian veins. I opted for a minimal invasive ovarian vein embolism to resolve. I did not recover well from the op, and my pain became so bad I couldn’t travel in a car without passing out . I couldn’t walk far, and had a number of other symptoms which were being investigated.

By the time I saw the pain clinic ( it took 6 months to get my first appointment), my gp had prescribed a number of pain meds including morphine patches to help ( which they did). The clinic followed a format, meeting with a dr to assess pain meds etc, (remained the same) then a psychologist assessment, followed by “holistic advice “. This amounted to “go away and do some yoga”.

I was offered a residential 2 week course to help, but as I had already pointed out that removing myself for 2 weeks from my children wasn’t an option, I didn’t take them up on it. I did however go to follow up meetings with the dr there, but as my symptoms became diagnosed, it became clear that my pain had been magnified by autoimmune dysfunction, and the treatment for it helped my pain.

From the experience I had, I would not rush back, but everyone has a different depth of pain and emotional response to it. Those that work to help people who are in extreme pain with no obvious solutions, should be commended and supported .