As most of my readers will know I moved from the Midlands last July to the South. For the past 20 years, I had a great Pain Team looking after me in the Midlands and registered with a new Doctor the minute we arrived in Sussex so I could get the ball rolling to sort me out with a Pain Management Team here.
Just before I left the Midlands my Pain Consultant had referred me to a new PICS service which had just been set up near me. “PICS does not treat pain, they treat the patient which means using more holistic methods. Chronic pain can often lead to low mood, depression and anxiety because of being in pain all the time, so they work to try and get people back to what they enjoy and give them some quality of life. They have wellbeing practitioners who focus on support and activities. Hobbies and distractions are very important. Working through the pathway is proven to be successful with reduced GP visits and people returning to meaningful function – they start to do more in their daily lives.”
Unfortunately, with the move to Sussex I was unable to take advantage of this new facility for treating chronic pain, but a similar method is run here in Sussex, and yesterday I had my first meeting with my pain team which consisted of a Pain Consultant, a Clinical Nurse Specialist and a Clinical Specialist Physiotherapist.
Before the meeting, I had been given a number of Q & A’s to fill in all about my pain and how I dealt with it and I have to admit I was hoping that they would simply slot me in for some more injections and just discuss my medication.
We probably chatted for a good hour where they explained their program similar to PICS. The main points they felt about me was that I was not dealing with my pain well at all. They basically said that if the pain medications we’re working then I would not be asking for an injection and so they clearly were not working for me. They said I need to come off all my medication some of which I’ve been on for over 20 years. They made it clear that I will never have any more spinal surgery as the last two have left my spine in such a mess. “Your pain is never going to go away”, they said, “In fact it will probably get worse, so the only option is to show you how to cope and manage it”.
The sort of surgeries I had in the past is just not done anymore as they can now see how it affects the rest of your spine. ”Morphine”, was also given year’s ago they said but they now realise it’s the last drug they would ever give. With time everything changes and so I am about to embark on a journey I have never been on before.
All three of the team felt I was not pacing myself properly which is something they can teach me. I thought I was in control as long as I had my afternoon rest but they felt I was permanently pushing myself too hard.
Some of what they said did truly take me by surprise as deep down I thought I was doing ok and felt slightly intimidated by their opinion that I am actually not dealing with it well at all.
When I told my daughter she actually asked how I felt when they said “you obviously do too much”, ( as my family constantly tell me this ) and I said I guess it had to come from someone in the medical world for me to realise that maybe I am “sometimes” pushing myself too hard.
I was then sent for a blood test and they are organising a bone density scan ( which I’ve never had before) and the Pain Consultant told me to go and buy some Turmeric tablets as they are brilliant for inflammation.
One thing they could not stress more is how they say “ I will feel” when I am eventually of all my meds ( except for Paracetamol) as I am dealing with so many side effects from all the different medications I take. I guess I am quite anxious about coming off my meds but I would love to feel normal again.
My next appointment won’t be until after the scan and blood tests results are back. I will then be slowly cutting my meds down while being introduced to other ways of coping with my pain. I think this is going to be a very interesting journey to write about on here.
BACK PAIN BLOG UK... 
I’m glad there’s at least some kind of program there that you’ve been able to access. We have pain management here too but it seems rather different. You get an intro day where a group of you go to listen to what it’s all about – basically talking about pain in a very, very basic way, teacher-student style using a white board which I sadly felt treated us all like morons. After that you choose whether to have group ‘therapy’ sessions or one on one with a therapist, so I chose the latter. You can be referred separately for other specialities, like the medication service or a physiotherapist. But there’s never been something like this where you’d go individually and see a group of different specialities and get feedback on your history and a way forward – it sounds like a decent idea, in theory. It’s definitely a good idea to have a team on board and some more support considering you’re hoping to be coming off all prescription meds and it’s great this appointment has led to other tests being done, like bloods and arranging for a bone density scan. I’m glad it went well and fingers crossed you won’t have too long to wait for the bone scan. Keeping my fingers crossed for you, Barbara! ♥
Caz xx
LikeLiked by 1 person
Hi, Caz, thanks for your comment. I was definitely impressed with it all and looking forward to trying turmeric. It will be lovely to have a clear head and I am very interested to see if my pain increases when I’m off it all.
LikeLiked by 1 person
Sounds idyllic. I was referred to iSK for pain in my lower back. Sacroiliac and piriformis pain due what I thought was caused by fibromyalgia. After 2 visits I was told I had lordosis because when I stood up my bum stuck out. Yeah I said I lost my balance. He said you have pelvic pain so I will refer you to obs-gyn clinic. When I got there she wanted to do an internal which I refused as it was my hip not my vagina that was the problem. I have up with the hospital feeling totally misunderstood.
I feel badly after a while went to my gp. Referred to neurology and was diagnosed with Parkinsons disease. NHS in my area is, for pain management, in my opinion sloppy
LikeLike
Hi, thanks for your comment. Your ordeals sound horrendous. I do agree that different areas have completely different clinics which makes it awful, for people like yourself. I hope you are not to bad at the moment.Take care.
LikeLike
Ditto for turmeric, and supplement forms that are hydro-soluble will absorb better.
LikeLiked by 1 person
Thanks, I’m looking forward to trying the turmeric.
LikeLike
Wow. I sure hope they can help. Sounds scary but do you feel hopeful?
LikeLike
Hi Ruth, I am definitely feeling hopeful but that is very much me as a person. In fact the clinical nurse asked me if I was always this upbeat. To which I replied yes unless I’m having an awful day and then I tend to hide away but I did make a point that I really didn’t want to stop taking Prozac as I said I would hate to feel low everyday and if taking one pill stops me from feeling that way then I would prefer to take the pill so it will be interesting to see if I can stay on that. Thanks for the comment x
LikeLike
Reblogged this on Barbara McLullich.
LikeLike