On Chronic Pain

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So. I’ve been writing this off and on in my head for months, debating if I should publish it as I’m not quite sure it meets the mandate of this site. I wasn’t convinced writing about this would be valuable to others. But, I’ve always found writing to be the perfect therapy, and lately I seem to be meeting many people who have similar issues. So if throwing up all this personal info all over the internet might help a fellow sufferer, then I have achieved my purpose. This could be a long one though, so maybe grab a coffee or a glass of wine or whatever it is you do. Just be warned in advance that there will be some graphic treatment descriptions involving my lady areas. And dudes, this isn’t specifically about woman stuff; there is important info in here for you too, so don’t get all squeamish and stop reading.

You may have noticed that I have not been writing as much over the past couple of…well…years really. Unfortunately, it is because I am in pain. I actually hate admitting that, because it feels like an excuse. But over the past several years, so slowly that it was almost imperceptible, pain has spread through my muscles and joints making many activities difficult or impossible. I didn’t even really realize it was happening, the pain was so sneaky. A little ache in my hip, a sore lower back here, nothing to worry about. You know, just those normal aches and pains that are a part of getting older.

But then I started having to cut out activities. Running became impossible, my hips would throb for hours and ache for days after a run. I started to avoid any activities that would involve standing for long periods or walking on hard surfaces. Sitting for more than a half hour at a time became intolerable, so writing, reading, and being an effective human at work became difficult. Driving was excruciating and filled with pain-induced road rage. Sleep was hard to come by and broken by painful hours of trying to get comfortable. Over a period of about six or seven years, I had cut out so many activities that I didn’t even feel like myself anymore. In the past year, I stopped making plans with friends; even a minor social event like sitting in a pub for an hour meant pain and was therefore avoided. Plans were too hard, they meant either suffering through an event or last minute cancelations and having your friends think you’re a huge flake. Netflix has been a great friend to me during this time; mindless entertainment that can be viewed from a variety of positions while still lying on ice packs or heating pads and hooked up to the Dr. Ho. I even rigged up a way to watch it in the tub while I soak in epsom salts. And yeah, anybody who knows me is like, wait, you hate baths! And yes, baths are disgusting human stews, but that’s how bad the pain is. I basically live in the bathtub.

Netflix also does not require your interaction like humans do. It is very difficult to have a decent conversation when a good part of your brain is consumed with pain management. My husband can always tell when it’s really bad because I can barely get a coherent sentence out of my mouth. Pain also infiltrates the creative parts of the mind; it’s so hard to concentrate and it just takes up huge amounts of energy and brain space. Besides, it makes your body so exhausted that sleep, if you can get it in patches, is the simplest solution. Except for the waking part. Waking is terrible because that’s when my muscles are at their throbbiest. Some mornings, my body just doesn’t want to go and it is a fight to just get in the shower and brush my teeth.

And while the pain kept getting worse, it’s not like I was sitting around doing nothing about it. I saw doctors and specialists and physiotherapists and pain experts and everything. In the early years, I was told that the small aches and pains were arthritis. Just exercise more, I was told. That will help! So I tried to keep doing what exercise I could, stuff that was gentle like pilates and yoga and stretching. But then it was spreading all over my body. I saw another specialist and was diagnosed with fibromyalgia. For those who are unaware, fibro is ‘a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas’. To be diagnosed with fibro, doctors basically rule out any inflammatory condition, such as rheumatoid arthritis, that could be causing the pain. Then, you lie naked on a table and they poke you with their thumbs all over the place. They mark down on a body chart the places they poked that really hurt you. Then, if you have enough really sore spots in enough of the designated places, congratulations! You have been diagnosed with fibro.

Like literally that’s how ridiculous the diagnosis is. But at first, I was hopeful. At least a diagnosis meant that I wasn’t crazy. It meant that the pain was real and not psychological, as some doctors had suggested. Plus, fibro has pills you can take! Here, have some pills, they will fix you! Soon though, the fibro diagnosis just became the same scapegoat as the ‘arthritis’. Now the pain was ‘just fibro’ and once again, I should exercise more. But soon, even the simplest activities caused pain for days and total exhaustion. Which in turn caused a lot of mental anguish and self-loathing. My inner voice was so fucking mean, telling me I should be ashamed that I was in such terrible physical shape that I couldn’t even go for a ten minute walk without some part of me being in agony. The voice said I was lazy, and deserved to be in pain. That asshole voice and I engaged in mental battles constantly. 

Still, I was not convinced that my pain being ‘just fibro’ was reasonable. There has to be a cause for the pain, saying it’s ‘just fibro’ does not answer that question. If fibro is causing the pain then what is causing the fibro huh smarty pants doctor?!? A family member with similar issues recommended, and to my eternal thankfulness, paid for my treatment at a private clinic specializing in chronic pain. I don’t need to tell fellow sufferers how much it costs to treat a chronic condition. It’s very, very expensive and a lot of the time you are just throwing money at anything, desperate for a solution long after you’ve run out of any health benefits you may have had. 

The pain clinic specializes in re-training muscles to work the way they are supposed to. It sounds a lot like physio, but they use some interesting electronic technology to measure muscle activity. The idea is that even minor muscle injuries can affect the way the muscle works. When a muscle is injured, the body will automatically adapt so that it can keep going. Over time, if not ‘reset’, those muscle adaptations will create a chain reaction of problems in the body.

Those sore spots that doctors poke during the fibro diagnosis are called trigger points, and they usually manifest in areas of muscle attachment sites. Even if you don’t normally have muscle pain, you’ve likely experienced that bunched up muscle strain after overworking the muscles. However, a bunched up muscle in one place often causes the achiness to be felt in another part of the muscle, or in another muscle entirely, making it very difficult to determine where the pain is actually originating from. Trigger point maps of the body showing areas where pain can refer as well as learning some basic anatomy are helpful tools to figure it out for self-treatment. 

However, at the clinic we soon encountered a physiological problem. We would work on rebalancing muscles and they would immediately ‘unbalance’. Especially in the torso and lower back. We discovered some scar tissue in the pelvic area that was definitely causing some problems, and the clinic recommended I see a pelvic floor physiotherapist. They suspected my pain was a result of some injuries I’d had in the pelvic area in a car accident.

In that accident, I had been t-boned by a driver who ran a red light. I had been smooshed between the driver’s side door and the console next to me. My right wrist had been badly fractured and dislocated in both bones, and I had sustained four pelvic fractures, two on each side of the pubic symphysis. Basically the closest you could come to breaking your vagina, I suppose. 

My broken vagina

My hospital doctor estimated I would need about three weeks in the hospital and then intensive physiotherapy. However, I healed remarkably quickly and was released after a week. I hobbled around on special crutches that had a little tray for my busted arm. I had physio once a week, then once every two weeks. The therapists were much more interested in my arm, which was pretty fucked up and immobile, while my hips and pelvis were functioning relatively normally. Every medical professional that inspected that injury proclaimed surprise at how well I had healed. The orthopaedic doctor said I might experience a bit of arthritis later in life, but otherwise I would have no issues. 
So when the pain clinic insisted there were pain issues relating to that pelvic injury, I was very sceptical. How had I gone almost fifteen years with no issues, and no pain relating to the fractures in the pelvic area? Not to mention none of my current pain was even in the pelvic area. That didn’t make much sense to me, especially since I had seen so many medical professionals over the years who had dismissed the accident as the source of the pain as well. That stupid inner voice was all YOU’LL NEVER STOP HURTING HAHAHAHA. 

Now I want to go off topic a bit here and talk about pain relief, because the inner voice is a dick about that too. Managing chronic pain is a huge challenge and one with massive societal implications. For most people, over-the-counter meds will work for general aches and pains. But for the chronic pain sufferer, that shit don’t cut it. Like when a someone says, ‘take an Advil’, it’s like, are you fucking kidding me? I might as well eat Pez candy! So of course, you have to go see a doctor to get something stronger. And that is where the trouble begins. You’ll try stronger and stronger painkillers which of course become ineffective over time and really, if you have one of these weirdo ‘nobody knows what causes it’ pain conditions, you’re most likely not even addressing the cause of the pain, you’re just masking it temporarily. This is if your doctor even believes you are in legitimate pain instead of assuming you are a drug-seeking addict.

Of course, these painkillers are typically opiate based, very addictive, and can actually kill you. Just look at the statistics on accidental opiate overdose. The numbers are staggering. Not to mention that they can cause awful side effects like extreme constipation, which in itself can be painful, especially if you already have pain in the abdominal/pelvic area. Like, after my car accident I was on strong painkillers. I did not take a shit for seventeen days due to opiate-induced constipation. SEVENTEEN days, people. And that was with taking laxatives and stool softeners twice per day in the hospital for a week before I finally lied and told them I had, in fact, taken a crap just so they would let me out of the hospital.

Luckily, I didn’t go down the opiate painkiller road. I know me. I quite like opiates, I’m not going to lie. That floating relief of being released from intense pain is almost as addictive as the narcotic alkaloids which bind to the opiate receptors in our brains. And that’s why I have mostly avoided the heavy-duty drugs, despite being offered them by medical professionals. I would 100% become a junkie. You know what I haven’t been offered? A prescription for medical marijuana. That’s the road I went down. But despite having one of the ‘approved conditions’ for its usage, and having asked doctors repeatedly, I have been refused. Not enough info about potential side effects, you see. Oh, is DEATH a side effect? No? OK cool. That’s what I’m gonna go with then. So, after having tried it for pain and found it significantly more effective for pain management than drugs that could easily kill me, I am now a criminal. But I’m at least a criminal who won’t overdose AND who has reasonably regular bowel movements.

Using marijuana instead of opiates has been incredibly helpful for me. Interestingly, in the past couple years many people have, upon me admitting my usage, also confessed that they too have been using it for that purpose. My former drug dealer estimated that 90% of his marijuana clients were using it to treat chronic pain conditions as well. For me personally, it doesn’t block out the pain like an opiate does. Rather, it seems to distract me from the pain. Like if I think about it, the pain is still there, but my brain is too busy with other stuff to pay attention to it. This allows me to get things done. I know a lot of people think marijuana users just lie on the sofa eating chips all day, but without having that all-encompassing focus on pain, I feel much more efficient. I’m high right now, for real. 

But that evil inner voice is telling me I’m a good for nothing pothead, I’m going to get arrested one day, I should just power through the pain, I’m going to get lung cancer instead and die. But I’ve been learning to shut that fucker up a bit and tell myself I’ve got to do what I’ve got to do to manage. One has to continue living and it’s OK to have some medicinal help to do that, regardless of the source. 

Back to the pain. I honestly thought the pain clinic was totally copping out by referring me to another medical professional, and a physiotherapist at that. Like I hadn’t already seen a bunch of physiotherapists that had all said the exact same thing. I was disheartened at the prospect of starting the whole diagnostic process again with yet another one. By chance, my sister had just started seeing a physiotherapist for pain in her hips, but she clarified that it was a pelvic floor physiotherapist, and that she was experiencing great results. Reluctantly, I called to book an appointment.

After several months of waiting to get in, I had my first appointment. Before being seen, I had to fill out a very long form detailing all health issues, pain problems, and past injuries. Then, I had to sign a waiver that it was OK for the therapist to perform internal exams via the vagina or anus. I didn’t really understand how any of those holes would have anything to do with my lower back, hip, and leg pain, but I signed it anyway. My sister had warned me that internal exams could be a part of the treatment.

As soon as I entered the treatment room and the specialist came in, she had me take my pants off. She stood my up and got me to bend over, do a couple stretches, and then checked the ‘evenness’ of my hips. Then she asked me how I was even able to function. ‘What do you mean’? I asked her. She said that based on her quick assessment, she could immediately tell that I had a whole bunch of problems going on in there and that she was surprised at how high functioning I was, for I must be in very severe pain. I almost started sobbing then and there, her empathy was so appreciated at that moment. Like, I know I’m not dying and I don’t want this post to sound at all like a Christine pity party, that is not the purpose. But having a medical professional confirm to me that I wasn’t just being dramatic about it was so reassuring.

She explained that she could tell that my sacroilliac (SI) ligaments were ‘jello’, particularly on the left side. Meaning all the muscles in my lower back, pelvis, and upper legs were all doing the work the SI ligaments weren’t doing properly. Just like at the pain clinic, she explained that the body will adjust itself to keep performing, so when ligaments are loose and unstable, the muscles have to take over. But that’s not their job, so they get sore, tired, and start to ache at their attachment sites. Soon, the muscles will start to get tiny tears in the tissue, leading to the buildup of scar tissue.

She said she wished she had seen me years sooner as the damage was severe. I asked her how the fuck I got this way, and sure enough, she unhesitatingly replied that it was all a result of my old car accident injury, and that the physiotherapy I had received after the accident had been pretty useless. I should have been seeing a pelvic floor specialist right from the start, but apparently, they didn’t really exist back then! Or at least there were very few and it was an emerging discipline within physiotherapy (my physiotherapist said ‘they would just make you do a bunch of kegels over and over in those days’!). Even today, there are only a handful of these types of specialists and they are in extremely high demand. Hence the five-month wait to get in. 
Next, we had the internal exam. Luckily, we just did the front hole and not the back hole (that came on a later visit and was too terrible to discuss here; just imagine someone palpating your tailbone through your butt hole. That’s all I’m going to say about that). The therapist explained that the pelvic muscles, and especially the pelvic floor muscles, are all influenced by the movement of the SI joint and ligaments and can also have painful trigger points, so in she went. I was pretty sure my pelvic floor was in decent shape, because most of my pain was in my back and hips, not in the pelvic floor muscles. But lo and behold, my inside muscles were also a mess, which became evident as soon as she started poking around in there. And let’s be clear, she’s not just sticking her finger in there, she’s jamming me in the lady muscles on the sides. Hard. Imagine massaging the inside of your hip, through the vagina. Now imagine that hip muscle is all bunched up, inflamed, and irritating the nearby nerves. The exam progressed. She said, ‘Now I want you to contract your inner muscles like you’re doing a kegel. Ok good. Now release…no, release it’. Me: ‘I am releasing it’. Her: ‘No, you’re not’. Me: ‘Am I stuck this way’? In case you’re wondering, that is NOT NORMAL. 

After messing around in there, she concluded her initial assessment and outlined my problems and her treatment plan. I was still hesitant to blame all the pain on my injury, even if it turned out I hadn’t healed as well as I had thought. It made sense that the damaged SI ligaments were causing the lower back and hip pain. But what about all my other weird aches and pains? What about the aching of my inner thighs? What about the shortness of breath and weird pain under my ribs on the left side? The stabbing under my shoulder blades? What about the numbness in my calves and feet? The throbbing in my heels? The tenderness of my ankles? What about that terrible burning pain in my big toes? How about that top of foot pain? The knees? And that heavy, achiness in my legs in general that makes it so hard to even lift my feet to walk sometimes? WHAT ABOUT ALL THAT PAIN?!?

Nope, despite my concerns, she remained convinced that all these issues were related to the old pelvic fractures. I should point out these weren’t even ‘serious’ fractures. They weren’t displaced, required no surgery, and in fact, could not even be seen on a current X-ray. Despite all that, the tiny injuries had built up over time and had affected my muscles and nerves all down my legs and up through the torso. In order to fix me, I would need to repair the damaged ligaments.

I had always thought ligaments weren’t really ‘fixable’ except through surgery. However, apparently they can be encouraged to repair themselves using a technique called prolotherapy. During prolotherapy, an irritant solution is injected right into the ligaments. This causes an inflammatory reaction and kick starts the body’s healing process by laying down new ligament fibres in the affected areas, thus strengthening it and stabilizing the joint. To start, I would need several rounds of this treatment in the SI ligaments, combined with pelvic floor physiotherapy, and I had to wear an SI belt all the time. If you’ve never seen one, an SI belt (or the Muffin Maker, as I call mine, due to it’s ability to instantly create a muffin top) is like one of those back stabilizing belts that movers wear. It’s a thick, padded strip with a heavy-duty velcro closure that you wear very tight across the hips and SI joint. It creates a lovely bulky look across one’s middle; the perfect accessory for a business meeting or evening out.

The prolotherapy itself is not a pleasant process. There are needles (10-15 injections per session) involved and the solution they inject into you causes your ligaments to immediately seize up like a cramp that won’t relent. After a session, I would usually try to drive home in excruciating pain, white-knuckling it all the way, to spend the remainder of the evening in the bathtub. Usually, by the next day that crampy stiffness was gone and was replaced by an achiness that would gradually diminish over a period of a couple weeks, until the next session. As the SI ligaments strengthened, the pain in my lower back eased off substantially. But then I started to notice strange other pains down my legs and did actually begin feeling pain on the ‘inside’ of my pelvis. Great, I thought. Is this treatment causing new pain problems? Nope. It turns out that once my body started healing the most injured areas and that pain started easing up, I started to perceive pain that had already been there in other areas. It became like peeling layers of an onion. When that thick, ugly, stinky top layer was removed, we discovered additional, thinner layers. 

An artist’s rendering of my prolo map

The muscles of the pelvic area are plentiful and complicated. Despite attempting to learn as much as I could about its anatomy and the function of each of the muscles, it was still difficult to describe my evolving pain to my physiotherapist. Luckily, she is the expert and could easily decipher exactly what internal muscles were causing issues. For example, after my second treatment of the SI ligaments, I started noticing pain in two new areas. 
Me: So…a couple new types of pain. 

Her: Describe the pain to me. 

Me: Well…this is going to sound ridiculous…but ok, so, the first pain feels like someone has put their finger in my butt, and then they’re jamming it left and right REALLY HARD. 

Her: That’s obturator internus. What’s the next pain?

Me: (Taken aback by her nonchalant assessment of the phantom butt finger) Er…well, it feels like someone is pulling my…um…pubes out and upward. 

Her: That’s the pubic symphysis. Pants off, face up on the table. 

Obturator internus, the devil’s muscle

I guess it’s just been, well, never, since a medical professional was able to address EXACTLY, down to the muscle, where the pain was coming from. Honestly, I was so blown away. As we identified the source of new pains that would crop up after each prolotherapy session (‘it feels like someone is inserting a long skinny needle into my hip joint’ and ‘my butt bones feel swollen on the inside’ and ‘my inner thighs feel like they are being ripped off the bone’), we could then treat the problem areas with massage, needling, or additional prolotherapy. It turns out that SI joints weren’t the only ones that needed fixing with the injections. We discovered problems in a couple of additional pelvic ligaments, scar tissue at the pubic symphysis that went down the hamstring adductors, and right in the hip joint itself.
And it really occurred to me then that there could really be so many pain variations and symptoms for this type of situation. And, since I had gotten an anatomy colouring book for Christmas and had done all the pages on muscles relating to my issues, I had learned a lot about the different nerves and muscles involved in controlling and stabilizing the torso and powering the legs. Of course, I had also been googling everything related to pelvic floor dysfunction and pelvic nerves and muscles, and all sorts of problems possibly related to the area. 

So, of course I started asking my physiotherapist a million questions about the types of patients she sees and the sorts of symptoms they have. It seemed to me that my symptoms, at least to a whole lot of medical professionals, seemed unrelated to the old injuries in my pelvic area. It occurred to me that all sorts of people might have weird, mystery symptoms that could be explained by pelvic floor issues. 

Sure enough, my physiotherapist confirmed that she does indeed see patients who present with symptoms you would not typically associate with pelvic floor dysfunction. And in fact, I started realizing that some weird things that I had been experiencing were probably connected to the injuries as well. For example, randomly peeing yourself a little bit when not even exerting yourself (and in fact not even knowing you HAD to pee in the first place) is NOT NORMAL. Throbbing pain in the lady area after orgasm is NOT NORMAL. Your pelvis shifting and audibly clunking when you walk is NOT NORMAL. And this is really why I decided to write this, because I know so many people who suffer from strange pains or weird symptoms. So if anything described here resonates with you and you haven’t found solutions, GET YOUR PELVIS CHECKED OUT. 

Of course, you immediately assume a lot of issues in this area can be caused by pregnancy and childbirth as I’m sure any mother can tell you. It seems to me (and my physiotherapist agrees wholeheartedly) that few women get proper pelvic floor care after childbirth. Most moms will tell you that they were told to just do some kegel exercises after delivery but that’s about it. My physiotherapist explained that the traditional ‘legs in stirrups’ position that many women give birth in puts incredible strain on the SI joint and can actually damage those ligaments during labour. And of course, many women experience the tearing of tissue down there. Now I hadn’t thought about it before but those tears aren’t happening to just skin, they are happening to muscles. And if that happens, those muscles will have to adapt to scar tissue, nerve damage, etc. I wonder how much the trauma of childbirth to that area affects the probability of experiencing issues such as vaginal or uterine prolapse in the future if untreated. 

But it turns out a lot of things aside from pregnancy and childbirth can cause pelvic floor dysfunction. Men, the craziest thing to me is that problems in the pelvic area can result in erectile dysfunction. WHAT?!? The pudendal nerve innervates the genitals in both sexes and problems in that area can cause numbness and pain in the penis, and can even cause difficulty in achieving erections. Apparently this can occur with injuries in the area, but also from repetitive strain from activities, particularly bike riding. My physiotherapist confirmed that she gets referrals from clients thinking they have ED or even STIs that turn out to be pelvic floor dysfunction. 

Another thing that blew my mind is that pelvic floor dysfunction can cause symptoms that can be mistaken for Irritable Bowel Syndrome. Tight or loose pelvic floor muscles and ligaments can cause constipation, diarrhea, painful poops, and general abdominal pain. My physiotherapist said that often, these types of symptoms will commonly appear in people who have injured their lower back or tailbone in the past. 

I am now into my seventh month of treatment and just had my seventh prolotherapy session. I’m still having a lot of pain as there are still more layers to peel off, but it’s getting better. I am falling asleep faster and waking fewer times in the night. The really acute stabbing pains have dulled to throbbing aches. While Netflix is still my best friend right now, I have been able to tolerate going out and spending time with friends and working in the garden.This doesn’t sound like a lot of progress in seven months, but we have twenty years of damage to undo. I’m just really grateful that I figured out what was causing the pain. Knowing there’s a solution, no matter how arduous the journey is to get there, is an incredible relief and makes the current pain so much more manageable. And that inner voice has become very quiet and I’m all like ‘I told you so, asshole’!

If you are experiencing chronic pain, I truly feel for you. At least I now know what’s causing mine, it’s not life-threatening, and I have a path to recovery ahead of me. Chronic pain takes an incredible toll on the body, not only physically but mentally. Developing depression and anxiety alongside pain is common and can make the physical pain worse. If you have pain that sounds like it could be pelvic floor related, I urge you to get it checked out. Even seemingly innocuous old injuries seem to be able to inflict serious damage over time to parts of the body you would not expect. If you feel like you are alone and in pain, and want to talk, contact me! 

Happy pelves to all!
PS: Pelves is the plural of pelvis. 

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