Tuesday, 23 December 2014

Updates and excuses PART III: The Name Game...

The name of Pain may be CRPS, but it doesn't automatically mean that any and all other unexplained pain would always be CRPS too. Logically, we could reason it as follows:

a) CRPS can spread beyond the original site in some people; (true)
b) I have CRPS in my arm and new Pain in my legs - my Pain has spread beyond the original site;
 THEREFORE - These new Pain symptoms in my legs must be CRPS (logically true but it is based on the assumption that there are no other causes to Pain)

It is an easy assumption to make, but to rely on this assumption would be dangerous without evidence. What if there was a life-threatening problem that ends up ignored because it mimics symptoms of a condition you have already? You can see the danger. It's such an easy one that even I made it. Granted, it felt very similar. This new Pain was largely untouched by pain medication. I slept without covers on my legs because it was too painful, and showers were becoming more uncomfortable - and dangerous until I got a shower stool. I started wearing lots of skirts and stockings instead of my usual jeans, and was thankful that it was coming into summertime. I wished I could go barefoot in public without fear of stepping in glass, dog shit or being impaled through the foot with a stiletto! Being touched was enough to send me through the roof, and my usually sparsely-haired legs took on a more hirsute hippie vibe. This was rather annoying, especially with the very pale skin tone (I never had much colour variation, not being fully caucasian I don't even turn a proper red when sunburnt), it stood out even more. I couldn't do a sugar wax or even run a razor over my hypersensitive skin. Yes, Pain and disability, and yet we still have time to be vain! Actually, it's not all about vanity. I discovered with my arms years ago the exact reason we as a species used to be more hairy - because each one of those hairs can pick up and read sensation from our environment. Each hair follicle could pick up minute changes in the same way as cats' whiskers, or the way insects detect movement close by. For me, each one of those hairs were made of tiny fire ants, biting the living blazes out of my legs while they were crushing them to a pulp from every dimensions!

It sure felt like CRPS!

However, it wasn't just pain. The cold and hot skin patches, often side by side. I could have drawn perimeters around these areas and I would have had a barometric weather map on my legs. My feet were often sweaty and icy cold at the same time (who cold sweats like that?) and once cold, it was very hard to get any heat back in without help. I was also having problems keeping balance, but it was hard to know whether that came from the disability itself, or something else. You see, I couldn't "sense" my legs anymore. Putting one foot in front of the other was more and more difficult to coordinate and it was as though I had someone else's burning legs there. My cortical homunculus dude in my brain lost his legs too, poor bugger! I was getting dizzy at times, losing my balance and had a few falls - and a few rather spectacular public tumbles which really lowered the bar of my own dignity and self-respect.

But one doesn't need to do a google search to tell you that these symptoms could be a number of things. Most, if not all of the diagnostic stuff was done in Australia on my last visit in 2013, nearly a year later.

I went through two specialists at two different hospitals here and no one sent me for a single scan! While I think they should have, there really isn't a test or scan that will confirm CRPS. Diagnosis comes from observation of symptoms (on a sort of checklist of symptoms); pain that is out of proportion to the inciting event and exclusion of all other causes to the pain. While there are some scans that may provide further information about the inciting trauma, or may exhibit some of the telltale signs of CRPS; they are rarely conclusive and many CRPS patients have a whole stack of scans where the report reads "no abnormalities". This is part of the difficulty of diagnosing CRPS; without a specific test, it can be somewhat subjective even with a list of objective findings. There is also the battle of recognition: not every doctor knows a great deal about CRPS, it's not a common diagnosis. Despite all that, I really would have preferred for them to have done some of these diagnostic scans here in the Netherlands, but they weren't. I think it's always important to rule out any other causes, even if it means a whole lot of useless "no abnormal findings" scans. Just another one of the subtle differences in the medical system here that can frustrate me!

The main reason that they didn't seem as proactive in this way was that it wasn't really that obvious that I had injured myself in the first place. It took me some time to think back to what could have caused the trauma, as none of the falls on the ice were all that serious. It's not like I fell while skating and needed to go straight to accident and emergency, nor did I call my man to come and pick me up. The fall that I believe was the cause, happened while I was practising the spins. It was a fall that made me pause for a moment, as it felt a bit more than the other simple tumbles. But having a stop-check couple of minutes break, then being alright enough to keep on skating meant that it could not have been all that bad. Or so I thought at the time. I don't even know that with hindsight, I would have acted any differently. I returned to skating after all, perhaps with a little more care than I had previously. I still skated more than a kilometre and continued practising for an hour or two. I walked to the tram with no issues, got myself home without complaint. Aside from some general muscle soreness the next day that you get when you have had a good workout, everything was good. I had no problems climbing the stairs, or riding my bike for the few weeks after the fall.  

Then of course, was that night where it all went to shit. Those early few weeks were so overwhelming, that I didn't really have the brainpower to even figure it all out. By the sheer real estate that Pain had acquired, my brain was taken over by its monumental force. I literally felt my brain was burning away, I could barely think. I had wanted to write in this blog, but it was all too much. To be honest, I hardly had words to describe what was happening, let alone be able to compose my usual long spiels (as you may have guessed - brevity is not one of my talents)! I also pulled away from facebook and social contacts. With everything I was going through, the Pain, the Shame and the Blame about what had happened and not being able to walk; it was too much to go about normally. I may be able to write here about my darker thoughts and experiences, but I certainly cannot share this on any form of social media! Any time I logged in, it only served to remind me of all that I had lost. It also pained me to see other people going about normally; working, having fun and all those normal things people do with legs that move without a thought, without Pain hijacking every move. I'm ashamed to say that I was jealous of all the people whose lives were 'normal'; whom didn't have Pain with them all the time, and could move freely and independently. I feel embarrassed to even admit that, and I feel ashamed to have even had the thought enter my mind. I don't really get jealous per se, so it is even more uncomfortable for me than it otherwise might be. And to be jealous of people because they weren't disabled, those of whom could complain about little things in life; well, I felt like a really low and shitty person. It's not their fault that they could walk and I couldn't; I would never wish CRPS on my worst enemy. But those feelings were there nonetheless. With all the self-loathing; the shame for being disabled and the guilt I felt for my envy, I eschewed facebook. Really, I had enough to deal with anyway, without the pressure of social conformity and exhibitionism.

I decided I wasn't going to accept this. Even after deciding to get the walking crutch, I spent many a night walking in circles in my loungeroom. I was determined to make these legs move just as I told them too, and practised as much as I could. I did some physio, which didn't really progress very far and in some ways, seemed to flare up my symptoms more. I tried to keep mobile, because I knew that immobility was my enemy. I got a balance board which I would stand on to try to activate my transverse abdominal muscles in the hope that it would keep me upright. I massaged my legs daily to try and desensitise them, no matter how painful it was. I figured that I had already gone through all this once, it was going to be no problem this time with all the tools in my arsenal. Despite all this effort, it wasn't doing anything to improve my situation and in fact my mobility was slowly getting worse. I even made a last-ditch effort and discussed with my doctor lowering my medication slowly and perhaps trying a new one. While it seems crazy to lower medication when you have an increase of pain, there is evidence that there can be a paradoxical effect that by taking pain medication, you can in fact increase the pain. This was explained to me by one of my specialists some time back, so I wanted to know if it was actually contributing to my Pain.

A Practice Guide for Continuous Opioid Therapy for Refractory Daily Headache: Patient Selection, Physician Requirements, and Treatment Monitoring; (on

Naturally, don't play around with medication unless you have your doctor's guidance with how to go about it. Many medications cannot be stopped abruptly, and can actually be dangerous to do so. My doctor and I made a plan to do it gradually and slowly. If a medication isn't doing its job well, I don't wish to remain on it, or raise the dose expecting it to work. The medication I currently take make a difference - albeit a small difference - which is why I take it in the first place, it just wasn't doing as much as it should be. He also switched me from gabapentin, which I had been taking for years, and the high dose I was on wasn't having much effect; to pregabalin (lyrica), which is supposed to be a newer *better* option for neuropathic pain. For years, it had been my fall-back option, one I knew was there for when the gabapentin stopped having an effect. It certainly meant less actual pills to take a day, so that was an improvement at least! However the changeover period was probably one of the most difficult times I've had to go through. I had to gradually lower the gabapentin before switching, so it was a period of a few weeks where I was in incredible amounts of pain. I fell into a bit of a slump, and became more isolated. My memories are a bit foggy around that time, but it was a lot of sleepless nights, house bound and unbearable pain. I think what kept me sane was just focussing on the goal - getting through it, changing to a new medication that hopefully, will be more effective. Day by day, hour by hour, minute by minute. My doctor was supportive, as were those in my very small circle of friends and loved ones.

What has been incredible throughout this whole experience, is that if I ever had a reason to fall into a heap - this certainly would have been it! It really was so far removed from what I was feeling back in 2009 when I had my last big depression blow-out. This time I was merely down, rather than depressed; frustrated rather than furious. I felt none of the feeling of being punished, or tortured; no deep dark pit of despair. I had days where I was more emotional, but everyone gets those days! Even during the worst weeks, I still remained... myself. This was only a setback, I was going to get through this. I was battle weary from the decade of fighting the Pain, but I also knew my enemy so intimately that I knew its weaknesses. Though I had made friends with my Pain; it was a 'frienemy' type of relationship. I made sure that this time I was the manipulator, rather than it controlling me. I had learned enough over these years to know that I was really the stronger one. It wasn't winning any more and it never would again. Even when the Pain was so bad I couldn't think, or sleep; it wasn't defeating me. Even though it was taking my mobility and freedom; it wasn't defeating me. I realised that I could ride the flare-up waves; rather than getting smashed by them. I harnessed their power and surfed them. Every single moment of joy, I clung to like a life-raft. If something was funny, I belly-laughed like an idiot! I meditated a lot, seeking solace in a deep breath and letting go. I played my soundtrack of Pain; with music I could find a place to observe it from, and not get pulverised by it.


So, almost a full year after the Pain took my legs, I travelled back to Australia to see if there were any options back home. There I saw my dear GP who has been my trusty doctor since I was a child and throughout the years of my arm. I finally was sent for my big photo shoots and meet-and-greets with specialists. I had my first x-rays done of my knees. And, big surprise - no abnormal findings!

The bone scan, on the other hand, did show something strange was going on in the bone. A three-phase bone scan (or bone scintigraphy) is done by having a small amount radioactive stuff injected into a vein, and they scan you initially for half and hour or so; then after a few hours break, they scan you again. It looks at how the blood pools, and how bone metabolises; how it absorbs the radioactive material and how quickly . If it is abnormal, more of the tracer is visible - increased uptake.

I had this bone scan before on my arm back in 2001. It was a traumatic experience, with veins collapsing on both feet. After those two difficult attempts, it ended up being injected into the back of my good hand. This time the woman who did it gave a very good needle which I hardly felt at all, so I thanked her for her skill! A vastly different experience to my first time, or maybe I'm just tougher now! With both bone scans on my arm (13 years ago) and legs (in 2013), there were areas of increased uptake, so the bone was remodelling faster than it should, so there was definitely some trauma going on. The report went on to say it was a response to increased stress or multiple minor trauma related to overuse. This was rather odd, considering I could barely walk and needed a walking crutch just to get around, so marathon running certainly wasn't what was causing this! What really was interesting in sitting these two reports side by side, was the similar finding of: enthesopathy. Entheses are what attach ligaments and tendons to bones, so enthesopathy is a disorder in these soft connective tissues, and may have an inflammatory cause. However, it's a bit of a vague term that doesn't provide a lot of information. The fact that this is the second bone scan of a separate body part with this finding; where both scanned areas are where I have the Pain, is noteworthy - but not a diagnosis in itself.

With these stunning photos of my strange but rather good-looking bones, I was referred onto the bone doc - an orthopaedic surgeon. He had a look, tried to be as gentle as he could to examine my legs, but wasn't really sure where to go from there. He wasn't really all that confident with stating outright that it was CRPS, as it wasn't his field of expertise and he didn't have much experience with it. He also remarked with a laugh that I was one of those notoriously difficult patients, like doctors and lawyers often are, who want to know all the nitty-gritty details and question everything! That I am for sure! With a bit of a chuckle, he sent me for an MRI on the knee that was slightly worse, or at least, the one that I felt was more structurally unsound, rather than just CRaPS crazy; saying that in knees, usually what the MRI finds in one will often be in the other. MRIs are not cheap, so scanning the two would not only have been expensive, but probably medically unnecessary. It was mainly looking to see if there was a tear in the meniscus, but whatever else was going on in there.

Oh dear... I was starting to remember all the traumatic experiences back in the beginning of this Pain adventure. The bone scan was traumatic the first time; the second ended up rather pleasant. The first MRI though, was simply awful. Lying in a painful position, being slid deep into a coffin-like contraption and the grating loud noises vibrating deep into my bones and almost shattering them from the inside out. The noise set off a huge pain spike, and lying in an awkward position really wasn't helping me. The technicians weren't really very helpful nor sympathetic, I wasn't given a panic button or anything. It was also a much longer scan back then, and I ended up quite distressed and they weren't able to finish it. I didn't really think I was claustrophobic, but I certainly was that day! But this time, like the better bone scan experience, was a breeze... with a valium! It was a lot shorter, and as my knee was scanned, I wasn't smack-bang in the middle of the tunnel. I was starting to see that MRI scanners have been updated in the past decade or so.

Back to Dr Ortho, with an MRI scan that showed some abnormalities, some fluid and evidence of previous injury that had healed, or repeated minor trauma. Once again, non-specific repeated trauma, and again not really explaining why I had the Pain. So, this was how the Name Game was being played: moving back and forth to specialists and doctors; sent for scans which show something, but not really anything specific/acute, but we were ticking off the list of possible other causes.

While this was all going on, I ended up seeing a chiropractor who was referred to by a friend of my mother's. I was a little hesitant, as I had seen one 20 years ago. I'm really not a big fan of hearing any clicks or cracks in my body, and to be honest, I'm not a big fan of being touched anyway! However, my mother took me to him and we took on a course of treatments, three times a week. In the beginning, they did a full work up. They looked at my weight bearing, and it turns out that my left leg; the one I was having the more "normal" pain in (as opposed to the CRaPS right Pain) was bearing 10kg or so more than the right leg. They took some photos of me to show my spine alignment and posture, though these unflattering photos really showed me how much compensation my body is really doing. CRPS has distorted my body more than I really notice day to day. My shoulder sits lower, my hip sits higher to balance. My right foot was starting to sit funny; when pain was particularly bad, I was getting small contractures that were turning my foot slightly inwards, and the inner side curling inwards. It was a big shock to see how distorted my body has become, it's hard to see yourself like that. It's not the sort of "normal" body you expect to see in the mirror. It was a bit of a blow to my self-esteem, my weight gain seeming rather minor next to this distorted and disabled body I actually possess now.

The chiropractor was a lovely man, who tried his best to help me.  On the whole, I think this intensive treatment had its benefits, but like all the others, it was only tiny improvements in function and didn't have any effect on the Pain. Nothing has helped me with the Pain itself. He asked me if I had ever been to a neurologist. This is around the same time that my GP was also wondering about another scary diagnosis possibility - multiple sclerosis. It was time to look deeper than just the legs where the Pain was. My unsteadiness, my twitching and tremor. Neurological symptoms that needed to be looked at by a neurologist.

This Name Game continues into Part IV: The Lame Game. We're getting closer to the name, the label. The increasingly thick stack of reports are building the picture of what is going on. Perhaps leading into an entirely new treatment option, one that was not widely available 13 years ago.

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