My Back Assessment appointment was on the 16th of June and I had a nice lunch with Jim at The George Inn at London Bridge before venturing into Guy’s Hospital for my appointment at 1.30pm, feeling trepidatious but hopeful.
I was seen by a Specialist Physiotherapist who appeared confident, capable, around my age and, to be frank, like she really knew her shit. She took her time collecting my history, then broke my heart by holding my gaze strongly and asking:
– What are your expectations of today and of treatment overall?
– *squirm* Um, I guess eventually… to be pain free.
– And how realistic do you think that is?
Despite all the reading I’ve done into chronic pain, I guess I had hoped that I would turn up to the appointment and they would say “Oh, we just need to crack your back in this certain way!” or “Oh, your pesky first rib is pressing on your brachial plexus, we’ll just whip that out and you’ll be right as rain”. I immediately teared up and tried to hold myself together as she went over what deep down I already knew; as I had been in pain for so long, my central nervous system had changed and was amplifying my nerve symptoms and helping them spread across my body. While there were things I could do to ease it and to stop it getting much worse, it was unlikely that I would ever be completely pain free. Rather than hands-on treatments by Physiotherapists, I had to learn to take it on board and manage it myself as much as I could… ‘owning the responsibility’, if you will.
– Yeah, I know, and I have been taking on the responsibility…
– … but, you know, I don’t just tell a teenage boy who stutters how he can manage it and then let him go without monitoring and checking in and helping him when he needs it!.
– Yes, and we will have you seen by a Physio here with a special interest in pain, and we can see if there are hands-on treatments we can do to ease your muscle and joint pain and help build your strength. But, your intervention will mainly involve educating you on how you can manage it.
– OK. I’ve just seen so many Doctors and Physios over the years and no one has ever actually explained why this is happening to me.
– That’s often the case with neuropathic pain, and your Australian Physio was actually very specific. To be honest it’s difficult to be that specific, particularly as your pain is now moving into your legs. Sometimes it’s a more global issue. So… you would like a clear diagnosis.
– Yes, I don’t want to have to manage something myself if I don’t even know what it is.
To her credit, she ‘stayed with me’ and didn’t shy away when I got upset. She was direct, clear and knowledgeable, and let me express how I was feeling without being defensive. Although I was crushed throughout the whole appointment, voice cracking and stray tears escaping, I couldn’t have asked for a better professional.
On physical examination, she stood in normal alignment. She was generally hypermobile with a Beighton score of 7/9. On lumbar assessment she had poor motor control into flexion and pain at end of range extension. She had full range of movement in the glenohumeral joints, cervical spine and thoracic spine. Neurologically, she had increased sensitisation of the left upper limb and right lower limb in a non-dermatomal distribution, she had full muscle power, and her reflexes were normal throughout with down going plantars. Her straight leg raise was 90 degrees bilaterally. She was tender to palate at L3/L4 centrally and unilaterally. She had no tenderness to palpate the cervical spine.
Provisional Diagnosis: Chronic spinal pain with neuropathic/central sensitisation
Management Plan: Physiotherapy at St Thomas’ Hospital
GP Action Plan: Please consider anti neuropathic pain medication or referral to Pain Clinic
So… what do I know now? I know that I am pretty bloody hypermobile, and that together with my ongoing joint and muscle pain I would probably qualify for the label of Hypermobility Syndrome. I know that being hypermobile is definitely not always a problem for people, but the crash and the ‘whiplash’ type injury I had set off a series of events in my body that it just couldn’t quite recover from. I know that I need to be fit, do more exercise and see my Physio to manage the different things my body decides to throw at me. I know that my GP has referred me to the Pain Clinic so I can be assessed and possibly start on a neuropathic-pain specific medication – most likely Gabapentin, an antiepileptic drug. I have an explanation of my difficulties that makes sense to me and that I feel I can handle. I understand that the hypermobility was probably the reason I could never do the monkey bars at school, or run without my knees knocking together, why I have to wear orthotics, why I have papery skin on my hands, why I have jaw problems, and to some extent why I have trouble with my retinas.
How do I feel now? After looking like a crazy distraught person in a quiet area of the hospital post-appointment, during which Jim was amazing, I felt really fucking angry. I was angry at the Doctors I first saw after the accident, at myself for not doing more when it would have made a difference, at people from my childhood for not ever noticing that I was massively hypermobile… everyone. Then I went through ‘Yeah, so what I have chronic pain, I’m going to do whatever I want with my life and not let it bother or define me at all and I’m going to go for awesome jobs and I’m going to achieve more than anyone else ever has in their whole life because I can do anything DESPITE pain, HA!’. Yeah… that wore off, and now I’m just feeling a bit shit. In the words of my assessing Physio:
– I suppose you’ve heard of the Kübler-Ross stages of grief?
– I can see that you’re probably almost at the stage of accepting your chronic pain, but that you’re not quite there yet.
– Definitely not quite there yet.
I’ve begun to realise, too, that people you tell about the issue go through their own feelings about you being in pain or unwell too. Rather than seeing their cries of “There MUST be something they can do, have you tried X? Or Y?”, as being an invalidation of everything you have done and the path you have taken, it’s better to see that they too are going through their own process of denial/cheering you up/trying to find a magic bullet or silver lining for you. On a larger scale, it makes you wonder… who am I? What do I want from life? What makes me happy? What do I need to do to get it? And I suppose that can never be a bad thing. It’s better to get perspective forced upon you than to have none at all.