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How Chronic Pain has Improved my Life

How Chronic Pain has Improved My LIfeChronic pain has become a central theme to everything I do ever since receiving my ankylosing spondylitis diagnosis. When I wake up, it’s there. When I go to bed, it’s still with me. It’s a constant mental and emotional drain that, initially, threatened to ruin my life. Now, almost a decade later, I’ve managed to reframe my chronic pain from weakness to superpower. And so should you.

 

From Isolated Victim to Community Member

At first, the fact that strangers and loved ones alike didn’t understand my plight made me feel completely isolated. I felt stranded as an outsider who couldn’t take the stairs without straining. I felt like a failure who couldn’t jump out of bed and rush around the house when I forgot to set my alarm before work.

Then I found out there’s an entire community of sufferers like me out there who are all online, swapping horror stories and giving advice. The psychological effects of chronic pain can be staggering. Finding a community gave me hope. Fighting my everyday battle was no longer a numbers game that I was inevitably going to lose. I found just enough hope to carry on.

Reframing my Medical Treatment

Over the years, I’ve had terrible experiences with doctors and specialists. I’ve had nightmare medications prescribed to me that have caused hair loss, fatigue and left my immune system crippled against staving off even a small infection. Through it all, I’ve been able to experiment and track my progress. Gradually I acquired enough experience and knowledge of my prescription options to be able to carry on a more responsible conversation with my doctors. This has allowed me to find doctors in whom I am confident, erasing years of stressful interactions and failures.

Taking Responsibility for my Wellness

Another massive improvement in my life is the realization that my resilience is naturally higher than the ‘normal’ people I used to feel so jealous of. With every day that I’m able to get out of bed, go to work and play my part in society despite my chronic pain, I’m proving that I’m at least that much stronger than the next guy. I’m no longer an Average Joe. I’m a victim of chronic pain who doesn’t flinch in the eye of often insurmountable odds. While everyone else is shooting hoops in their daily lives, I’m tossing around the medicine ball and growing stronger.

I didn’t really grow up in a household that valued physical prowess. I grew up as a book worm (I still am!) and scoffed at the prospect of ever doing a single pull up or going to a yoga class. In countless studies, regular exercise has proven to not only improve physical health, but mental and emotional health as well. When the chronic pain hit, my physical well being took a nosedive and I had no inborn concept of what it takes to begin an exercise routine. In time, however, I began to learn from other sufferers and from better doctors that exercise is one of the greatest treatments for ankylosing spondylitis. Now I’m the guy who regularly invests in home gym equipment to test it out and determine if it helps fight the chronic pain.

Whether it’s as simple as having a reliable morning routine or hitting the gym, taking personal responsibility for my wellness has improved my outlook by leaps and bounds.

 

Becoming More In-Tune with my Diet

I also wasn’t properly introduced to what healthy eating habits were in my youth. Yeah, my parents understood the food pyramid and tried to make sure that there was one fruit, one vegetable and one meat with every meal, but that was as far as I ever got. Even as an adult, I just assumed that calories were calories and that was all there was to it. Through my research and interactions with other chronic pain sufferers, the phrase ‘you are what you eat’ has taken on enormous importance. Now I’m carefully tracking everything I consume and monitoring it alongside my flare ups. Over time, I’ve been able to establish what foods seem to correlate to my inflammation and what foods don’t.

 

Getting Involved in the Community of Chronic Pain Sufferers

Beyond these improvements to my life, I’m now writing this blog. I have a website that I regularly update and use to keep in touch with other sufferers. The things I’m writing about this struggle of mine are resonating with other chronic pain sufferers and, for that, I feel the biggest sense of pride. The chronic pain that once held me prisoner has now become something that actually connects me with other people and helps improve their everyday battle, too.

It occurs to me that maybe, as sufferers, we should remind ourselves on our worsts days all the different ways that chronic pain has actually changed us for the better. I think you’d be surprised to find that there is more strength to find in your suffering than you might think.

Try it now: leave a comment below telling me one way in which your chronic pain has improved your life!

From Victim to Fighter: Reframing Chronic Pain with the Spoon Theory

reframing chronic pain with the spoon theoryThere are two ways to deal with chronic pain – you either give in to it or you fight back. For me, the chronic pain of ankylosing spondylitis made me want to give up until I reframed the struggle. This is how I went from a victim to a fighter by reframing chronic pain with the Spoon Theory.

Every day with chronic pain is a struggle, and that struggle restarts when my alarm goes off in the morning. When I first received my diagnosis, I dreaded the struggle. I dreaded the shooting pain in my back, the brain fog and every limping step from my car to the office. Who wouldn’t slip into a depression under these circumstances?

When something hurts, the professionals tell you to take it easy. But with chronic pain, just about everything can hurt. And what do you do then?

The Spoon Theory

The Spoon Theory is an analogy that a lot of victims of chronic pain like to use to describe their day. The idea behind it is you have a limited amount of energy in a given day, and units of energy are represented by spoons. On a good day, maybe you wake up with 20 spoons in your collection. On bad days, maybe you’ve only got 10. Each activity that you do requires you to give up a set number of spoons. Getting out of bed on a good day? 1 spoon. Getting out of bed on a bad day? 3 spoons. You get the idea.

By the end of a good day, you may have an extra spoon or two in your collect that you can save up for the next day. But on a bad day, your spoon collection can run dry before noon.

The Isolation of Chronic Pain

When first diagnosed with ankylosing spondylitis, I would watch jealously as other people rushed past me in the hallways at work. I would constantly adopt a victim mentality, envious of all the ‘normal’ people around me with their ‘normal’ problems. No one seemed to understand what I was going through, no matter how detailed I tried to be when describing it to them. Feeling crippled in your 20s is devastating to a young man. No amount of empathizing by my loved ones was ever going to be enough.

I began to cancel plans at the last minute with friends. Partly because of the pain, but partly because I was starting to disassociate with them. I felt like they didn’t understand me. The chronic pain wasn’t just hurting me, it was isolating me.

This kind of reaction is common among chronic pain sufferers. Does it sound familiar to you?

Reframing Victimhood

The truth of the matter is that chronic pain is only going to define you if you let it. If you slip into the role of the victim, then the victim is what you’re going to be. People who don’t suffer from chronic pain don’t know they’re holding an abundance of spoons while you cling to a small handful.

If you want to survive, you have to reframe your pain. You have to get more spoons.

I began to work on a morning routine that would empower me. I started researching and testing out new methods of dealing with my pain. Physical exercise, testing new supplements and more thorough conversations with my rheumatologist. These all empowered me just a little bit more. I focused on my relationships. I would shore up my energy specifically so I wouldn’t miss appointments with friends.

Finding inspiration in your everyday battle with chronic pain is the only way you’ll ever increase your spoon collection. Creating little victories for yourself can help inspire you to take that next step.

What’s just one thing you can do today to help reframe and replenish your spoon collection?

How a Weird Fetish Among Our Ancestors Lead to Ankylosing Spondylitis

neanderthals and ankylosing spondylitisStudies suggests that Neanderthal genetics may be responsible for autoimmune diseases in modern humans. Got an ankylosing spondylitis diagnosis? It is almost certainly tied to some weird fetishes on the parts of your ancestors.

HLA Alleles Had to Come from Somewhere

I first came across this concept while watching a documentary called ‘Decoding Neanderthals.’ Yes, I’m one of those people obsessed with documentaries. The focus of the documentary was on the recent decoding of Neanderthal genetic material. In the process, they mentioned having discovered ancient HLA alleles.

The main genetic marker used to diagnose ankylosing spondylitis is the HLA-B27 allele. Found in 95% of all AS sufferers, HLA-B27 is an antigen that helps direct white blood cells. In an ankylosing spondylitis sufferer, the HLA-B27 allele malfunctions. This causes the immune system to attack itself.

Have you ever considered where this allele came from in our genetic code? It’s more interesting than you might think. The answer appears to be that we got it from interbreeding with Neanderthals.

Our Surprising Neanderthal Heritage

Neanderthals were one of the first human-like species to leave the African continent. They diverged from a common ancestor, migrating out of Africa around 600,000 years ago.

Neanderthals adapted to new diseases outside of the African continent. This equipped them with immunities that modern man needed before spreading globally.

And this is where the weird fetish comes in.

Neanderthal genetics are more common in populations of European or Asian descent. The same populations that show a prevalence of ankylosing spondylitis. And it implies that our ancestors were having sex with Neanderthals.

When modern humans began to migrate out of the African continent 30,000 years ago, interbreeding with Neanderthals (and another genetic cousin, Denisovans) was vital to our survival. The immune system boost that our ancestors received inoculated them against new diseases. But that immunity came at a cost, it seems.

Neanderthals and Ankylosing Spondylitis

Neanderthal remains have shown evidence of arthritis. Genetic sequencing shows a predisposition to diseases like psoriasis, Chron’s and lupus. Inheritance of HLA alleles in our ancestors means that Neanderthal interbreeding could be to blame for your ankylosing spondylitis diagnosis.

Now, how does this help you in your everyday  battle against this disease? For one thing, it explains why diets cutting out carbohydrates are popular among sufferers. The Paleo Diet, Raw Diet and the No Starch Diet are the most common. It seems no accident that these diets tend to mirror what our ancestors were eating at the time.

If you’re at all curious about how much of a Neanderthal you are, 23andMe is an awesome resource. They’ll sequence your DNA and give you scientific proof that you don’t just walk like a caveman, you ARE a caveman.

How I Use My Morning Routine to Win Against Ankylosing Spondylitis

Ankylosing Spondylitis Morning RoutineMy ankylosing spondylitis morning routine has completely changed the way I think about chronic pain. And I’m hoping it can help change the way you think about it, too.

You woke up in pain today, right? And even if the pain diminished as the sun crawled across the sky, that doesn’t mean that it’s going away. Not completely. So why bother?

This is the way I feel on most days. When my alarm goes off, I wince as I roll over to turn it off and start whimpering as I readjust my body. It’s not fair. I struggle to find a position that isn’t agonizing, when anyone else would just be hitting snooze. If that wasn’t bad enough, I know that there’s a desperate struggle in my immediate future just to put on my pants.

If you feel the same way, there are really only two responses: let the pain control you, or fight back. By making the following additions to my morning routine I’ve empowered myself to fight back, and so can you.

My Ankylosing Spondylitis Morning Routine

Wake Up Consistently

No matter how little sleep I got, I force myself to my feet within the same 15 minute window every morning. Some nights the pain keeps me up for hours, but I’ve found having a consistent wake time means it happens less. It’s also been linked to lower body fat, an important component of managing AS and chronic pain.

I like to get out of bed between 7am and 7:15am, but everyone is different. Decide what time you want to be up make it a point to do it.

Pain Journaling

You should keep a pain journal. This is something that I’m going to post on much more extensively later, but it’s an important part of my routine.

The act of documenting how you’re feeling can help you identify pain patterns. Activities, foods and environmental factors that cause pain become more obvious when written down. A pain journal can also show you what ISN’T causing you pain.

I keep a notebook with me at all times for this specific reason. I write down everything I eat, exercises I’ve done and the what/how/where of any pain in my body. I do this about three times a day, starting first thing in the morning.

Stretch it Out

Ankylosing spondylitis, by design, results in a loss of range of motion and flexibility. The majority of sufferers find that they have more pain first thing in the morning than any other time of day. Which makes the morning the perfect time to set the tone for the rest of your day.

Even just a few minutes of stretching on a daily basis can improve chronic pain symptoms. Studies show stretching should be the first line of defense against diseases like ankylosing spondylitis.

I use a smartphone app by the name of Sworkit (here’s an outdated online version, if you don’t have a smartphone). I like it because you can adjust how much time your routine can be and mixes up the positions. There are also a lot of arthritis-oriented routines available online for free.

Get Some Sun

Vitamin D deficiency is a common problem among ankylosing spondylitis and chronic pain sufferers. But Vitamin D happens to be one of the most abundant resources we have available to us. You see, humans have been generating Vitamin D by using direct sunlight for millions of years. So why not step outside and get your fill?

It shows not only potential for pain management, but it also has a tendency to help with depression. And, as I’m sure you’re well aware, depression is always just one step away from chronic pain.

 Practice Mindfulness

Meditation isn’t something I ever expected to find it’s way into my morning routines. With so much mumbo jumbo around the practice, I had always written it off. After trying it for a while now, I’m happy to say that I was wrong about it.

Within as little as three days, practicing meditation has shown to reduce pain.

My personal favorite means of meditation is using an app called Headspace. It offers a 10 day free trial that will teach you the basics. After that, if you don’t want to pay for more, there are plenty of sites and apps that offer similar services.

I know it shouldn’t be this way, but when you suffer every morning, you start to believe there’s no other way. When you have chronic pain, it’s easy to feel a sense of permanent defeat. Particularly when you start your day with it. You begin to resent ‘normal’ people and it adds another layer of separation from the world around you.

Adding these components to my morning routine has empowered me against my chronic pain. My ankylosing spondylitis has gone from a curse to a motivator first thing in the morning.

If my struggle sounds familiar to you, give a few of these a shot tomorrow and let me know how you feel afterward.

Five Ways to Improve Your Ankylosing Spondylitis Treatment Today

Five Ways To Improve Your Ankylosing Spondylitis Treatment TodayBattling against ankylosing spondylitis is exhausting, and it’s easy to lose sight of your ability to fight back. Below are five ways you can improve your ankylosing spondylitis treatment.

 

Personally, I’m notorious for opting out of my responsibility to maintain the highest quality of life that I can with this disease. The list below started as a series of notes to myself about ways that I could improve my ankylosing spondylitis treatment after a week of selfishly avoiding taking care of it.

Is there something you’ve been struggling with that, perhaps, isn’t on this list? Leave a comment below and let me know about it – putting these struggles into writing can help give us power over them.

1. Exercise and Physical Therapy

You aren’t exercising enough. Yeah, we’ve all heard that the best way to deal with ankylosing spondylitis is physical therapy and exercise. Studies have shown supervised training and home exercise improve long-term outcome in AS patients. So why would you be avoiding it?

 

Register for that embarrassing yoga class, join a gym and talk to your doctor about physical therapy. There’s no better time than now to begin to consider just how important a role exercise plays in maintaining your mobility. For life.

 

If exercise is a good idea for people who don’t have to worry about their bones fusing, how much better of an idea is it for you?

2. Listen to Your Doctor and Stop Avoiding Medications

So you saw the list of side effects that biologics and DMARDs can cause and now you think that it’s best to avoid them altogether, eh? Consider this: they’re known as side effects for a reason. They are the outliers when it comes to the usage of medications.

 

By avoiding treatments proven in clinical trials to help, you’re throwing the baby out with the bathwater.

 

We live in time where medical science has finally advanced where patients receive more relief than ever before. It’s foolish to not use that to your advantage in your battle against ankylosing spondylitis.

3. Eat Healthier, Eat Smarter

Just like exercising, the healthier you eat, the more manageable your AS will become.

 

Anecdotal evidence suggests that a low starch or a no starch diet can help significantly decrease your  AS symptoms. Not only that, but plenty of sufferers argue that they have even managed to put their ankylosing spondylitis in complete remission using this method. Besides, reaching a healthy weight means removing unneeded pressure on your already painful joints.

 

If you are what you eat, why wouldn’t you want to be more natural?

4. Start Tracking Your Pain Triggers

You’re locked in an everyday battle against ankylosing spondylitis, you need to learn your enemy and all their moves. The best way to do this is to track your pain on a regular basis.

 

If you wake up in more pain the day after eating pasta than after eating salad, how are you going to know if you don’t keep track of it? What about when you lift weights versus when you practice yoga?

 

Because the symptoms of ankylosing spondylitis vary so much from victim to victim, tracking your pain is even more important.

5. Don’t Ignore Your Social Support Group

You absolutely can’t win your battle against ankylosing spondylitis by fighting alone. Psychological effects of chronic pain include things like depression and impairment of cognitive function. No one can expect to handle these things on their own.

 

The best way to fight back against this is to reach out to a social support group. Whether it’s the Spondylitis Association of America, the National Ankylosing Spondylitis Society or just your tight-knit group of friends, you can’t do it alone. You need to be able to seek out support on your bad days and maintain that connection on your good days.

 

Foster your family ties and friendships. No matter how painful your body may feel today, it’ll only feel worse when experienced under the long shadow of loneliness.

Common Ankylosing Spondylitis Treatments

I’ve spent more time as my own lab rat, testing various ankylosing spondylitis treatments and diet than I’d like to admit. Sufferers of AS likely prefer to NOT have to think about it any more than we have to. Unfortunately, we don’t have that luxury.

Below, is my attempt to detail the different drugs available on the market right now to treat this arthritis.

For a disease so variable in its symptoms, the medical approach most doctors take is surprisingly uniform. When writing their prescriptions, rheumatologists appear to stick to three main medications:
NSAIDs
DMARDs
Biologics

Each has their own means of handling the inflammation you experience with ankylosing spondylitis. They also all have their own side effects you’ll want to be on the lookout for.

NSAIDs

Shorthand for ‘non-steroidal anti-inflammatory drugs,’ these include ibuprofen, naproxen, indomethacin and phenylbutazone. Of those, ibuprofen tends to be the most often prescribed. Doctors consider these the first line of defense against ankylosing spondylitis associated inflammation.

When prescribed an NSAID, the major side effects to look out for are gastrointestinal in nature. Stomach ulcers are common for long-term users of these drugs. Other side effects include liver damage, kidney damage, heartburn, diarrhea and more.

DMARDs

These are are ‘disease-modifying antirheumatic drugs.’

Doctors prescribe these when more common anti-inflammatory medications like NSAIDs fail on their own. DMARDs treat the inflammation of joints while slowing the immune system’s attack on a patient’s body.

Methotrexate is a common prescription written from this group. Other DMARDs include plaquenil (hydroxychloroquine), azulfidine (sulfasalazine), minocine and arava.

Because DMARDs slow the immune system, the side effects tend to sound more intimidating. This means you’ll be more prone to infection and disease while taking them. Other side effects include severe birth defects, nausea, liver damage, hair loss and more.

Biologics

The last group of prescription medicines are a relatively new addition for ankylosing spondylitis treatments: Biologics. These were first used in the late 1990s to treat AS. Biologics derive their name from their origin as medicine engineered from biological organisms. Medicines falling under this category include infliximab (brand name: Remicade), golimumab (brand name: Simponi), etanercept (brand name: Enbrel) and adalimumab (brand name: Humira).

Biologics are also known as ‘TNF inhibitors,’ short for ‘tumor necrosis factor-alpha.’ This is the second drug group targeting the immune system. They do so by disrupting an inflammation-inducing protein within the body. Unlike NSAIDs and DMARDs, these are only taken through injection and can be much more expensive for the patient.

Because biologics are so new, the long term effects are still in the testing phases. Possible side effects include susceptibility to infection, stomach pain, nausea, skin problems and more.

As more doctors are able to accurately diagnose this disease, ankylosing spondylitis treatments are advancing. For those of us suffering in the here and now, this advancement is important to be aware of.

After all, coming to your rheumatologist with even a basic understanding of your medical options can be a life changer.

If you think I missed something or are looking for a little clarification, don’t hesitate to leave a comment below.

What’s HLA-B27 and What Does It Have to do With Ankylosing Spondylitis?

What's HLA-B27 and what does it have to with Ankylosing Spondylitis?The most important acronym that you’ll be reading on this website is as follows: HLA-B27. And what does it have to do with ankylosing spondylitis, anyway?

If you’re anything like me, the next couple sentences are likely to be the most boring you’ll be reading in a while. Stick with me, though, because it’s critical stuff. This alphanumerical string, HLA-B27, is the flag shared by 95% of ankylosing spondylitis sufferers. Yet, HLA-B27 is an uncommon allele, shared only by an estimated of 8% or less of the general population. This is a clear correlation between genetic makeup and the likelihood of an AS diagnosis. Yet, only 10% to 20% of HLA-B27 carriers appear to have symptoms of ankylosing spondylitis.

In simpler terms? HLA-B27 is something few people are born with. And an even smaller subset of that minority end up with ankylosing spondylitis. Yet almost all ankylosing spondylitis sufferers test positive for HLA-B27. That isn’t to say that you can’t test negative for HLA-B27 and still have ankylosing spondylitis. It just means that scenario is much less likely.

What is HLA-B27?

HLA-B27 stands for ‘Human Leukocyte Antigen, subtypes B2701 through B2759.’ It’s discovery is relatively new to the ankylosing spondylitis scene. While likely not the only genetic marker for the disease, it’s clear correlation with AS was first noticed in 1973. Since then, it’s become the most studied of the HLA-B group in your blood, though no one is yet certain how it influences arthritis.

Anyone who paid attention during health class in high school knows that we all have white blood cells and red blood cells. White blood cells function as agents of the immune system, testing cells for infection throughout the body. But, in the case of ankylosing spondylitis, the immune system gets confused. The white blood cells end up attacking healthy cells, causing all the other unpleasant symptoms of the disease. Human leukocyte antigens are the proteins located on the surface of these white blood cells. The B27 subtype of these proteins help these cells identify problems and infections within the body.

Where did it come from?

The current theory is that HLA alleles became incorporated into the homo sapien bloodstream when our ancestors mated with neanderthals. This was an important development for us as a species, granting us immunity from diseases that the neanderthal population had already adapted to outside of the African continent.

For more information on the neanderthal connection with ankylosing spondylitis, you can find a post I’ve written here.

Get tested!

Most doctors won’t test you for HLA-B27 until there’s a convergence of ankylosing spondylitis symptoms. After all, just because your white blood cells happen to carry the subtype of the B27 proteins doesn’t mean you’re doomed to a future of autoimmune disease. This is why it’s important, early on, to talk to you doctor. You want to make sure to get tested for this specific genetic marker if you so much as think that you may be suffering the early symptoms of AS.

My personal, and incredibly unscientific, opinion is that being born with HLA-B27 is just the first step on the path to developing spondyloarthropy.

If I was a betting man, I’d put my money on the fact that future research into this aspect of ankylosing spondylitis will reveal potential triggers tied to diet, behavior and more.

My Diagnosis Story

Like any good story from my 20s, my battle with ankylosing spondylitis started while drinking with friends.

We’d all congregated together for a street fair here, in southern California. I was 23 and intoxicated, surrounded by hundreds of other nigh-invincible street fair attendees. We stuffed ourselves full of food truck foods and street bar booze before deciding to stumble home.

It wasn’t until halfway through our walk that my right leg got to feeling a little uncomfortable. By the time I bothered to look down, my knee looked like it had swollen to nearly three times the size it should be. As though I’d stuffed a balloon up the leg of my pants.
And not in a sexy way.

Peripheral manifestation

At the time, I was living away from my parents in the days before Obamacare and had no health insurance. I spent weeks hobbling around on my bad knee, trying to justify waiting it out.

If I’d known back then that the swollen knee was just a peripheral manifestation of my ankylosing spondylitis, I imagine I’d have taken it a little more seriously. Peripheral manifestations can take place in any number of joints and usually act as early indicators of the disease, though the correlation is usually unnoticed until a diagnosis is reached.

In time, it became clear that I’d need to change my approach. I found myself a dirty little 24 hour clinic that would accept my cash and took up a spot in their waiting room. The doctor took one look at me, announced a diagnosis of bursitis, told me to take some ibuprofen, and then he left. What he didn’t know was that I had been popping ibuprofen like candy ever since the ordeal had started.

Later I landed a job that came with insurance and, with it, a whole series of doctors with different guesses about the swelling. To make matters worse, my other knee started inflating around this time, too. X-Rays and MRIs all came back clear, leaving no diagnosis for my massive knees.

Then the back pain started.

Spinal inflammation

Waking up for work one morning, I got my first taste of intense arthritic pain while attempting to push myself up from my mattress. Not much of a morning person before this, my new found struggle didn’t help my disposition toward the early hours of the day. My boss, though, couldn’t disagree more. She made it clear that my first day calling in late to work for chronic pain shouldn’t become a habit.

One of the most common symptoms of AS is morning pain, I later found out. While sleeping, joints get stiff as the immune system attacks itself. The sacroiliac joint, that spot just above the tailbone, starts trying to fuse over time and the pain is pretty unbearable.

My diagnosis

When I described my pain to my rheumatologist, a light bulb in his head lit up. Could my years of trouble walking and slow, pained mornings were the result of ankylosing spondylitis?

I finally had my diagnosis.

One reason I started this site is because I never originally read up on the disease, let alone attempted to pronounce it correctly. I just went on feeling more and more powerless with each compounding symptom. Now I can share what little knowledge I’ve gained while researching deeper into the topic. I’m also hoping to learn a bit more along the way.

If you or someone you know has a diagnosed case of AS, at what age did the symptoms begin showing? How long did you end up suffering without diagnosis?

Ankylosing Spondylitis: Now What?

There’s nothing in this world as surreal as watching a man twice your age hobble past you at a speed you could’ve only achieved years ago. But with a diagnosis of Ankylosing Spondylitis, a nasty form of arthritis, it’s commonplace.

In fact, I’ve been doing it for years. And, with every gnarled old man that huffs past me on a sidewalk or in a hallway, I grit my teeth and carry on. That’s really all you can do in my position.

Besides constantly fighting against my spine and ribs trying to fuse, that is.

Ankylosing Spondylitis is a type of rheumatoid arthritis. Common symptoms include the inflammation and fusing of the spine, sacroiliac joint and pelvis. It’s an ‘autoimmune disease’ in which your immune system turns inward and begins to attack you. This causes the classic inflammation and the bone fusion symptoms of Ankylosing Spondylitis. This also happens to be why I now live my life in the slow lane.

As a man in my early 30s, I find my slowing mobility beyond frustrating. It’s horrendous. It’s put an end to most of my dreams of hiking on the weekends or retiring to a back country farm somewhere. And, while my body seems to be failing, I continue to try to battle my way through it.

My best weapon? Knowledge.

If you’re reading this, I assume it’s because you have been (or someone close to you was) diagnosed with AS. If that’s the case, it’s important that you know that you’re not alone in your suffering. Some sufferers were lucky enough to have a doctor diagnose them early on, before the pain became unbearable. Others may have struggled for years in physical torment before the diagnosis became clear to their doctor. Regardless, now that the pain has a name, there’s no better way to fight it than with an education.

Lesson number one? Expect doctors to focus on your symptoms instead of a cure. This disease is treatable, not curable. Up until your diagnosis, all the doctors you were seeing were hoping for an answer. Now that you’re diagnosed, doctors will be focusing on treating your symptoms only.

Most medicines that your doctors will prescribe for AS impede your over-active immune system. These medicines are ‘immuno-suppresants.’ Likewise, you’ll be hearing the term ‘NSAID,’ which stands for ‘non-steroidal anti-inflamatory drug.’ Both immuno-suppressant drugs and NSAIDs have their strengths and weaknesses. It’s important that you keep up your research and listen to your doctor when it comes to these. The nuances are many.

Lesson two – you need to remain as active as possible to maintain flexibility. ‘Move it or fuse it’ seems to be the rallying cry of the AS sufferer. Exercise and activity are the best ways to fight back the gradual fusing of your bones. Ankylosing Spondylitis is a slow disease, but it is relentless.

Lastly (for now), expect your friends and family to take on different reactions to your pain. Sometimes they’ll assume that you’re in more pain than you’re letting on. Other times, they’ll assume that you’re just being dramatic. Get used to asking for support and talking about how you’re doing. This is the only way that anyone will be able to relate with your experience with Ankylosing Spondylitis.

Before your diagnosis, all the pain you were suffering was happening without reason. Weeks and months of your life may have disappeared in a mysterious and horrible series of painful experiences. Now your pain has a name, a medical definition and a tried series of treatments to help control it.

Oh, and you’re going to be hearing a lot of the phrase ‘you’re too young for arthritis!’ I haven’t yet figured out a clever enough response to this, so if you have any ideas, let me know in the comments below.