Long time readers here at The Mad Reviewer are probably aware that I’ve been dealing with chronic back pain for nearly five years now. For the first time in five years, I have good news on that front.
After years of being called a liar, a drug-seeker and an attention whore by doctors I finally, finally have a diagnosis. My pain is not all in my head. Rather, I have what’s known as benign Hypermobility Syndrome (for those of you looking for more info, MedicineNet does a great job of explaining it). Now of course having loose ligaments doesn’t cause pain in and of itself but in my case Hypermobility Syndrome allowed me to bend so far backward that I actually slightly damaged the right facet on my L5 vertebra. This in turn caused the muscles of my lower back to tense up, causing the initial lower back pain. Because those muscles were tense, the muscles of my upper back also tensed up, causing additional pain to the point where everything from the small of my back to between my scapulae was in intense pain constantly. On a scale of 1-10 with ten being the worst pain imaginable, I would put my back pain at a 6-8 on an average day (slightly less painful than getting dry socket when I had my wisdom teeth out but more painful than my adult tonsillectomy).
Obviously, being in constant pain and being called a faker by literally dozens of doctors did nothing to help my situation. I became depressed and generally hopeless. I had hoped that moving to the city and getting out of my hellish small town would improve things but that seemed not to be the case. The pain kept getting worse and I was getting even more miserable.
Finally, in April 2016 I was diagnosed with benign Hypermobility Syndrome by a specialist who actually has the same condition (and passed it on to both of his daughters). He recommended physiotherapy, which I did religiously for four months with no improvements. All the while, my new family physician and I were trying different anti-inflammatories and other non-narcotic pain management drugs in an attempt to at least take the edge off for me. After my third round of physiotherapy failed and my pain became even worse, I was in a dark place mentally. Depressed, wanting the pain to just end. And finally, it did.
I have been largely pain-free since March 23, 2017 and I can’t tell you how emotional I am right now typing this sentence. For years I was called a liar and a faker and even though I had a diagnosis for almost a full year, no course of treatment seemed to be working. Until my doctor suggested yet another anti-inflammatory medication and I gave it a go. It took a week to really kick in but my daily pain levels since March 23 have been as low as zero and as high as six. That’s a far cry from a daily pain level of 6-8 with absolutely no zero days, let me tell you!
Living without pain has been an odd adjustment. I’m ridiculously relieved that I finally have a non-addictive effective treatment that takes my daily pain level down to zero. It’s hard to believe but after five years of being in constant pain I couldn’t remember what it was like to not be in pain. Even though I’d only been in pain for less than a quarter of my life, pain had robbed me of the ability to remember my normal life before my genetics and my body betrayed me. So now that I wake up without pain and go to bed with no pain, I feel very odd. When I was in pain it always occupied a corner of my mind but now that it’s gone I have to learn how to focus 100% on what I’m currently doing instead of always being aware of my back. To say these past two months have been a bit of an adjustment period is really an understatement.
I feel like I finally have my life back now. That I have the ability to be who I’ve always wanted to be. That’s why I’m still living in the city and am actually attending university this summer (and into the fall/winter terms) now in order to get a Bachelor of Kinesiology in Exercise and Sport Studies. My eventual goal is to attend medical school and become a physician so I can help patients like myself get the treatment they deserve. And if that doesn’t work out, I hope to get a Masters in Physical Therapy so I can help people cope with injuries, aging and genetic conditions like mine.
For the first time in five years, I feel like I can finally make some of my dreams come true. Being largely pain free has given me my life back and I hope to make something out of it. Not everyone with chronic pain is as lucky as I have been.
I’m so angry right now I don’t know whether I want to scream or cry.
The anger seems to rise up in my throat as my hands shake and my heart races. I am not the sort of person that experiences blinding rage very often so it’s almost terrifying to experience it now. But what I’m feeling at the moment is more than just anger. It’s the five stages of grief all at once.
I’ve discussed my chronic back pain at length in the past. One thing I never metioned was how sometimes I get a shooting pain down my right leg that makes it go quite stiff, giving me a visible (and painful) limp. I never mentioned it because it only happened once or twice a year. But slowly, as the years have gone by, it became more and more frequent to the point where this January it began happening once or twice a week. So although I had accepted my chronic back pain, I went through the five stages of grief once again as I mourned the possible loss of my mobility. This time the depression stage was much shorter but the anger lasted almost twice as long as it had when I realized my back pain was only getting worse.
I was so angry that not only was my back pain still a problem but that I was also experiencing pain in my leg that limited my life even more. While we as a society have made quite a bit of progress when it comes to physical disabilities we’re still not perfect and my occasional limping has made that painfully clear. Not only did the pain make me angry, people’s reactions to me did as well. It’s hard to go out to the mall and get stared at by almost everyone because you’re an otherwise physically normal young woman with an obvious limp. It’s hard to go from nearly having to fight salespeople off in every store you enter to being left alone (and sometimes actively avoided) by everyone. But I digress.
So why am I angry now? I’ve gone through the five stages of grief for my back and my leg. Well, two days ago I had an appointment with a physiatrist (physicians who “treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons“). Instead of acting like all of the specialists I’ve seen to date (i.e. immediately dismissing me as “too young to be in pain without any obvious physical defects”) he took the time to examine me and ask me questions about my medical and family history. And because of this physical examination, the questions he asked and the MRI I had done three years ago he was able to diagnose me within fifteen minutes.
I have been in constant pain for nearly five years. I’ve seen specialist after specialist, sometimes waiting for up to a year to book an appointment that lasted ten minutes and ended with the specialist accusing me of lying or seeking drugs. And the worst part? At least half of those specialists should have come to the same conclusion as my physiatrist given my medical and family history.
Essentially I, like 10% of the population, have hypermobile joints. I have naturally loose ligaments and so my joints extend beyond the normal range of motion. For a lot of hypermobile people this isn’t really a problem. However, in my case I seem to have extended my back too far and caused stress on a vertebra in my lower spine. This caused the muscles in my lower back to tense up to compensate for the stress on this vertebra, which in turn caused the muscles in my upper back to tense up to compensate for that. And as I had to give up the sports I loved due to the pain, the pain got worse as I lost core strength and my muscles had to work even harder to hold things together. The stress seems to be worse on one side of the vertebra, which caused the intense shooting pain that runs down my right leg.
The cure for this? Targeted physiotherapy. The physiotherapy I had before, shortly after the pain started, only exacerbated my problems as the physiotherapist had me doing exercises that forced me to move my joints beyond the normal range of motion and put additional stress on them instead of stabilizing them. Basically, I need to go see a physiotherapist with experience treating hypermobile people who will determine what exercises I should be doing on my own time and that’s it. It won’t happen overnight and I’ll always need to do them, but the exercises should essentially cure me of my chronic pain. And as I get older, my ligaments will naturally tighten up so my joints won’t be so prone to moving in ways they shouldn’t.
Which brings me back to the anger. I’m feeling so many things right now: a weird combination of denial, acceptance, depression, despair, etc. But the prevailing feeling is definitely anger. I’m angry that for years doctors dismissed me because they couldn’t find an easy answer. I’m angry that all they saw was a hysterical young woman instead of a patient experiencing pain. Had they looked—actually looked at me instead of relying on a stereotype—maybe I would have had a diagnosis sooner. Maybe I could have already been doing proper physiotherapy for months, years even. Maybe I didn’t need to be in constant pain for so long.
I’m angry that I missed out on so many things because I was in pain. It’s infuriating to think that I gave up things I loved like volleyball and swimming because of a treatable, easily diagnosable problem. And it’s especially aggravating that I gave these up because of pain that could have been managed shortly after my symptoms began. Every single doctor that bothered to examine me remarked upon how flexible I was despite the pain. They didn’t think this was a clue, one that might lead them to conclude there was something wrong with my connective tissues. No, they just took it as proof I was a drug and/or attention seeker who was wasting their time. After all, someone who is in so much pain shouldn’t be able to move better in certain ways than a normal person, should they?
It’s only been two days since my diagnosis but already the anger is subsiding. It’s still here but it’s fading, making way for something I haven’t felt in a long time when it comes to my health: hope. The hope that with a lot of hard work and a little luck I can go back to something resembling normal. That maybe I can sit or stand for more than half an hour without being in excruciating pain. That maybe I can walk around the mall without everyone’s eyes on me because my appearance doesn’t match their idea of how a disabled person should look.
After all these years of pain and suffering, things are finally starting to look up.
It’s been a while since I rounded up any of the weird search terms I’ve received, so I figured I’d do it today to brighten up everyone’s Wednesday (including mine). So here are the lovely search terms that people found my blog through:
rose leslie sex scene
writer self-deluded novel
is it really necessary for someone with chronic psin to moan out loud constantly
i hate slang
easiest chronic pain to write about
reasons why i hate teenage books
every girl on game of thrones naked
game of thrones man hatred
why do guys like game of thrones
Ah, Game of Thrones. You either hate it or love it according to the internet. And since I wrote about why it’s okay for women to like it in my chart-topping article I constantly get weird Game of Thrones search terms like the ones above. Since I wrote about chronic pain a while back I get weird search terms from that. (Also, no it’s not necessary but the person asking that question should be a little more empathetic.) Basically, there are no seriously creepy search terms like I sometimes get, but there’s still a lot of naked women terms.
Seriously people: I don’t have naked women on my blog, especially not the Game of Thrones women. If you want to see some of them naked go to Google Image Search or YouTube.
Last year on my birthday I wrote about my experiences with bullying. This year I’m writing about the elephant in the medical profession’s closet: chronic pain.
I am a human being with hopes, dreams and goals. Some of these have been forever altered or have become impossible because of my chronic pain. You see, I’ve had chronic back pain for three years this fall and have yet to receive even a diagnosis. My pain starts in my lower back and migrates up to encompass my entire back all the way up to between my shoulders after only a few hours of being awake. My knees have an almost arthritic ache and occasionally pain shoots down my right leg, making it impossible to walk normally some days.
Luckily I was born in Canada so I have not become bankrupt because of my illness. I have had X-rays, an MRI and multiple physical exams. I’ve been to chiropractors, massage therapists, orthopaedic surgeons, physiotherapists, back pain specialists at the provincial clinic and multiple GPs. I’ve had orthotics, massages, special exercises and chiropractic treatments and nothing has helped. Some things like the physiotherapy (which I did for nine months) made things worse than ever. Continue reading
Warning: depressing article ahead.
As I sit here in my computer chair, there are constant stabbing pains all the way from the base of my spine up until between my shoulder blades. I have a lingering stiffness in my right leg from a little unplanned hike earlier in the week and my knees are starting to ache because it’s late in the day. Even though it’s only around 8:00pm on a Sunday I’m exhausted, despite sleeping in until noon.
This is a good day for me.
My as yet undiagnosed chronic pain has taken so many things away from me, mainly the sports I used to enjoy and are still listed on my ‘About’ page because they’re too painful to take down. I have no social life and just surviving a full day of work takes enormous effort. And you know what? Compared to some people with chronic pain, I have it easy.
Yes, I’m trying to go somewhere with this rather than having a pity party. My point is that chronic pain is hard because it’s, well, chronic. As in you’re in pain for every single waking moment. That’s what makes it so hard for normal people to even begin to understand, let alone feel comfortable talking about.
So how does this relate to books? Well, in YA you see all kinds of different people being represented and that’s awesome. It’s nice to see LGBT people and people of various races finally being represented in fiction, even though we still have a long way to go in regards to fair representation. I think it’s amazing that YA authors are able to talk about things like terminal illnesses such as cancer or self-harm and suicide. But as someone with a very limited support group trying to deal with chronic pain, it would be nice to be represented in even just one book. Yet I also have a practical streak, so here are the reasons why no author wants to tackle chronic pain:
1. It would be a tough balancing act. Continue reading
Young Adult is now a firmly established genre and it’s not going away anytime soon, believe me. However, it’s also a fairly new genre, and as such has a little more growing up to do. There are possibilities that haven’t been explored yet, there are ways authors can still push the boundaries of the genre without creating an entirely new genre, etc.
Of course this means that I have to add in my two cents. (Or is it 5 cents now that we’ve gotten rid of the penny?) Anyway, here are some things I’d like to see more of or see done at all in YA:
1. Characters with chronic diseases/pain.
Yes, this is an incredibly uplifting way to start off an article, isn’t it? It’s still true: when was the last time you read a YA novel with a character that had a chronic disease and/or chronic pain. “But Carrie,” you say, “young people can’t be in pain!” Continue reading