Let’s start with the fact that I know about pain. I know about pain more than your average person. I wrote my dissertation on total pain & how emotional stress & anxiety can manifest in actual pain. I devoted my nursing career to treating people in pain; I could unravel complex pain & get people comfortable. That’s what I did.
Then I got ill. I was given two separate diagnoses that explained the pain now coursing through my body: I had hypermobility type Ehlers Danlos Syndrome & fibromyalgia.
Over the last few months I have studied each disease, comparing the articles written against my own pain, my own experiences. I am starting to learn the difference between the pain caused by hyperextended joints & the heavy, all over pain caused by fibromyalgia. The fibro gets worse when I’m tired or down, the EDS can hit at anytime when my bendy joints go their own way.
So, yeah, I’m quite good at understanding my pain.
What I do need is help to manage the constant injuries my EDS cause. And because I need this I was pleased to be referred to Pain Management Solutions.
Pain Management Solutions was a private service that is bought in by the NHS to provide a holistic approach to pain management. I’d heard good things, I was keen to benefit from this approach. My first appointment seemed promising, they understood what I needed & assured me that they’d deliver it. They said I didn’t need to chase hospital physiotherapy as they would have that covered.
My first few appointments were cancelled by then which was frustrating but I was prepared to wait. I went again in July & spent the appointment mostly going over the stuff I’d answered in my initial appointment. The same assurances were given about physio & we did a little bit about meditation & relaxation. I came away from that appointment with clear goals, practicing meditation & focussing on pacing activities. It was a small help but no amount of meditation will stop subluxations and swollen tendons.
My next few appointments were cancelled. I was getting frustrated. I went all summer without an appointment. I paid for some private osteopathy but in all honesty the amount I needed wasn’t affordable. I looked forward to my appointment today.
Last night I had a fall. My knee gave way on the way back from the toilet. I rolled my ankle, twisted my knee & hurt my back & shoulder as I landed on the floor. My husband picked me up, gave my pain relief & tried to get me to rest. I didn’t sleep much. I was in so much pain but I got myself up & to the surgery for my pain clinic as it’s important & I WANT to do better.
It was a fiasco. I was sat in the waiting room for 29 minutes before the clinician phoned me asking where I was: “I’m in the waiting room”, I should have felt lucky as whilst she apologised to me about the mix up it transpires the appointment before me was still sat in the waiting room.
The clinician asked me about relaxation techniques & whether I needed more help. I explained how I was doing it, how it was helping. She asked about my goals (again) & I explained what I was doing to try & adjust to disabled life & how I was rating chores (red, yellow, green) & deciding what to do based on where my pain was.
Once again I said my main aim was understanding how to manage injury. Advice on splinting, on exercises, on strengthening. The next part had me gobsmacked. She told me that I wasn’t suffering actual injuries & that if I were I would/should be going to the GP with each injury. She said my pain was just an EDS ‘flare’. She seemed to be confusing EDS with fibromyalgia. I was speechless.
A five minute mime then followed about how to do the washing up with little breaks including the suggestion that I tell the pain “No, go away, you aren’t in control now.”
The clinician looked at me afterwards perhaps expecting applause & said I looked teary. She asked if I was ok. When I said I was just tired in pain she decided we should ‘leave it there’.
How much did that waste of time cost the PCT? How many people are pinning their hopes on these clinics just to be treated like idiots? How much worse do people get waiting for the actual help that they need?
I have no words. Well, I have this rant but I have no idea what I do from here.