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?

Suckerpunch.

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…
Good.
– … 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.
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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
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 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?
Yeah.
I can see that you’re probably almost at the stage of accepting your chronic pain, but that you’re not quite there yet.
– No. 

– 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.

So I guess I haven’t mentioned my back/neck pain and nerve pain in my hands for a while, I suppose because it’s just a constant background noise in my life that is sometimes a whisper and sometimes a small child running around screaming with an amplified Tickle Me Elmo tucked under one arm.

I have a few things that I need to do manage it; I stretch, watch my posture, do pilates and give myself breaks when I’m doing activities that aggravate it such as sitting for hours. When it gets bad I take ibuprofen, but I try to avoid that. Above all else, I try not to focus on it, I try to move as normal, forget about it and not let it stress me out. I don’t talk about it much either. I suppose over the past few years I may have developed a reputation for being a bit of a hypochondriac, worrying slightly too much about my health and getting a bit carried away with the Google self-diagnosis. As far as I can tell though, it’s only been since my car accident that I’ve been that way (maybe I was like that before, but I don’t think so).

It was 10.30am New Years Eve in Perth, 2007 and my parents were away in Hong Kong, lending me their brand new car. My brother was living overseas so when I roared away from my apartment in a flood of tears after fighting with my boyfriend, it was to head to an empty house to get away from everything. I was so worked up that as I turned right to get onto the freeway entry, I didn’t notice that the green ‘turn right’ arrow wasn’t lit up… I was supposed to give way to oncoming cars at the simple green light. I didn’t, and I plowed into a brown car being driven by a middle-aged lady, without even attempting to break. Thankfully she was OK, as I seemingly was. My parents’ car was written off, the entire front half resting on the doorstep of a nearby shop while the main chassis was cleared from the intersection by helpful onlookers and eventually a clean-up crew. I dealt with the situation by crying even harder, and the boyfriend in question returned to comfort me. Good times… good times.

But that’s besides the point. Besides my wrists and arms feeling a little stiff, I thought I got away generally unscathed. I paid my parents’ excess, insurance provided them with a new car and my relationship ended. I was at work one day when I realised that my left little finger was tingling. And it had been for days. I ignored it for a while before going to my Doctor, who asked if I was stressed. He gave me a patronising smile to go with his general dismissal. I found myself in a new relationship and at one of his physio sessions the therapist noticed that I had some problems lifting my left arm above my head. I mentioned my tingling and he urged me not to leave it alone. At the time I had just returned from travelling and was a bit low on cash… I really wish I could go back and make myself broke for as long as it took to fix it. Over the years the tingling advanced into pain, which spread across my hand. All of the muscles in my shoulders, back and neck began to take turns aching, twinging and generally taking on the texture of a piece of shipping grade rope. After a particularly aggressive private Physiotherapy session, the pain spread to my right hand and so became bilateral. Five years later, and I can honestly say I am in pain all of the time. I’ve gone through the stage of being highly distressed and telling people about it (oversharing?), the response to which (with a few notable exceptions), ranged from moderate interest to open ridicule. I’ve had an MRI of my neck showing nothing but a lack of lordosis (curve). A neurologist sent me for an MRI of the brain to screen for multiple sclerosis that came back clear, at which my GP chuckled and said “Well at least we know it’s nothing serious!” When I asked what else I could do, she smiled and said “You just have to learn to live with it”. When I told her I didn’t think my arms hurting constantly and telling a woman in her 20s that she would have to ‘just learn to live it’ was particularly funny, she stopped smirking and actually felt my neck and shoulders. She finally referred me to another, better Physiotherapist and I learnt that a) it was a long road to be pain free and b) there was no one health provider who could ‘fix’ me and I had to take responsibility and understand what was happening myself (as well as do the physical work). It is said, and I believe it’s true, that the more that people who are in pain know about the cause of it, the less painful it is, both literally and figuratively.

So maybe I am a bit of a hypochondriac sometimes. I worry if I have asthma. I worry about a whole lot of things. But I think I have a reason to be, and if I didn’t get certain things checked out, such as black chunks floating around in my vision for instance, I wouldn’t prevent certain things from happening… such as the lattice degeneration and holes in my retinas ruining my sight. If I weren’t more tuned into other people’s health than ‘normal’ I wouldn’t have noticed the skin cancer on someone’s head, or suggested they go to a Podiatrist to stop their nagging ankle pain. And hopefully when (if) I’m ever pain free then if I do think that someone is being a hypochondriac, I won’t laugh at them or feel the need to point it out… making their distress and anxiety all the worse because as well as feeling terrified, they now also feel isolated. Maybe the anxiety came before the health scare, maybe it came after… perhaps they go hand in hand. Whichever way it is, your smirking face and derision probably aren’t going to help.

I have an appointment tomorrow at the Orthopaedic Department at Guy’s Hospital, and I am hopeful but also pretty scared.

Jill’s current diagnosis is cervical and thoracic instability, leading to C5/6, C6/7 radiculopothy. Treatment to date has included very, very gentle neural work, as Jill’s symptoms are easily exacerbated, gentle mobilisation and soft tissue work of scalene, sternocleidomastoid and upper trapezius. I have also included some thoracic mobility mobilisation. Jill’s primary treatment however, has included stabilisation of the thoracic and cervical regions, through clinical pilates. I feel it is important to maintain gentle physiotherapy and feel that Jill would benefit most from exercise therapy. Jill has a substantial home exercise program, including gentle mobility exercises and stability exercises.