In my 7 years of living with Ankylosing Spondylitis since the age of 21, I’ve had to teach a lot of people quite a few things about my illness. It’s a relatively unheard-of form of arthritis in day-to-day life. Most people have heard of Rheumatoid Arthritis, but not usually Ankylosing Spondylitis (AS)
I want to share 3 things I wish people knew about AS!
1. It’s a lot more than just back pain
Yes, Ankylosing Spondylitis is a form of arthritis that primarily affects the spine. In my case, it affects my pelvis, too. AS is so much more than that. I experience many more symptoms on a daily basis, and my entire body is affected too!
The thing that differentiates AS from other forms of arthritis, and even just back pain, is that over time, the vertebrae in the spine will start to fuse. It causes damage to joints and limits mobility. It can make it harder to do daily activities like cleaning, or for some, even something as simple as turning your neck to the left or right. I know someone who had to give up driving because of the damage done to his neck.
Fatigue is also a huge part of my daily life with AS. Because of everything going on in my body, I get fatigued really quickly. If I do something as simple as showering, it tires me out. Depending on the day, activities will affect me more or less. If I go out for a day, or even just to the mall, I get very fatigued. I need a lot of rest, which I’ve learned to interpret as being productive. Listening to your body is self-care, and can go a long way!
2. It affects every aspect of my life
Since becoming ill with Ankylosing Spondylitis when I was just 21 years old, my entire life has changed. Socially I have lost some friends who didn’t understand or couldn’t “deal” with my illness. I’ve also had to change how often I see friends, or what I’m able to do. For example, a lot of twenty-somethings are going out to bars and clubs, whereas I can’t do that anymore. It exhausts me to be out of the house for more than 2 hours doing anything. Instead, I prefer a quiet night in with close friends watching tv or just chatting.
Modification has been a big theme in my life with AS. I’ve had to modify just about everything.
Financially, I had to quit my job at a restaurant and haven’t been able to work full-time or outside of the house since. I’m now a writer and content creator, but I still need to live with my parents because I can’t make enough to move out on my own.
Home life is difficult as well. With the amount of fatigue I experience on a daily basis, it makes it hard to do chores around the house, or even keep my room clean. I struggle with self-care as well. I try to shower and wash my hair at least twice a week, and I try to do things like brush my hair or teeth as often as my body allows me to. I feel like a lot of people don’t realize how hard self-care is with a chronic illness.
3. Just because I have a good day, it doesn’t mean I’m better/symptom-less
A lot of times when people on Instagram see me out and about doing things, they think I must be feeling better. The truth is, a lot of times I just have to push through what my symptoms are to do what I want to do. I have to accept that I will suffer more later in order to do the things I want to do. I will experience more pain and fatigue after going out, let’s say to a fair, and I do that in order to help my mental health, in exchange for my physical health.
There are many things that I wish people knew about living with AS, but these are the big 3!
Author Bio: Steff is a blogger and content creator from Mississauga. She loves raising awareness and helping others navigate chronic illnesses. In her free time she loves to listen to music, play video games, watch reality tv, and go for bike rides (when she can). You can find her content and more on Instagram @totallyfunkless!
Hey Cassie, so sorry to see you’ve had such a hard struggle with AS. I am 48 years old and first developed symptoms at the age of 15. I have fusion in my sacroiliac joints. I know your pain to well, but there is an alternative that doctors refuse to accept.
After 23 years of pain at the age of 38, my wife and I finally discovered a diet that would help alleviate the pain and inflammation. It was a long three months, but I made it through to a much better place and have been living that way for 10 years. I did a low starch diet for months with much discipline, and eventually for the next 9 years I ate a gluten free diet. Occasionally I drink beer, eat chocolate and chips to name a few perks – all without pain. I can’t say that everyone will have the same results, but I do have proof that it works, I was extremely skeptical that the diet would get rid of my pain but it did!!! If you want to know more, please feel free to email me. Not everyone wants to take a leap of faith into changing their diet. You still have a long life ahead, and to live pain free or even with less pain, would be amazing.
PS., you can use NSAIDs to manage inflammation with the diet or flare ups, the diet pulls you back through to the other side once the inflammation dies down. Wishing everyone happiness!
Jake – Ontario Canada
I was diagnosed at age 52 with Undifferentiated Peripheral Spondyloarthropathy (AS) even though my HLA-B27 came back negative and all my inflammatory markers are negative too. Thankfully I suffer with very little pain and I am a Holistic Nutritionist and Yoga teacher so I manage my symptoms through food and movement. My rheumatologist is recommending medication (Plaquenil) but I am reluctant to take it for many reasons, namely I don’t like taking pharmaceuticals. Does anyone take it here and do you suffer any side effects?
Thank you for sharing!
I’m 45, diagnosed 2.5 years ago. Glad to know we’re not alone.
Thank you for sharing!
I’m 45, diagnosed 2.5 years ago. Glad to know we’re not alone.
Last year I had a wake-up call on my lower back. Had to take a week off, lying on the couch, unable to move. I’ve had a herniated disc in my lower cervical spine for over a decade, now, and the lower back issue made me start to wonder if I’ve got AS.
I’m not sure what I’m asking, but I’m in the early middle of the process of trying to find a diagnosis. My wife works for a company that works with drug insurance (nurse) and suggested I look into AS. All my symptoms line up except the genetic HLA-B27 test came back negative.
For anyone here, did you find that the genetic result was a huge factor in your diagnosis? Also, I’m currently in the middle of what I would call a “flair up”. Extreme lower back pain; can’t shift any weight without extreme agony. Don’t ask me to bend to pick something up, because it aint happening.
Obviously, not looking here for a diagnosis, but there’s nothing else that seems to line up…
Oh, and how long was the diagnosis process for each of you?
Hey Thomas, the blood marker is “the diagnosis” but that doesn’t mean that you don’t have AS or another arthritis.
My biggest tip, look at a low/no starch diet and ad vitamins like MCT Oil, probiotics like Braggs Apple Cider Vinegar (1 tablespoon a day) 2000mg of vitamin D, turmeric 500mg, Omega 3.
It sounds like a lot of super healthy nutty info, but I am pain free from 23 years of agonizing back pain, and have been so for 10 years. Once I got over the hump which took 3 months to see results from a starch free diet, I started living. After that I began eating a gluten free diet and have not looked back. If you get a flair up on this path, I ease off on and go back to low starch diet for a little bit and can even take nsaids to help the change happen faster.
I swear by the diet and it is making strides on the internet. Doctors tend not to accept it. I have a great GP and once I educated him on the process, he has helped others change their life too.
Best of luck – feel free to email me if you want. Jake
Diagnosed with as when I was 23 , 2 vertebrae in upper back fused so doctors said I had it very young. Been on arthritis meds 40 years now , still working , but some days are really hard. Tired all the time and pain and stiffness all the time. My fourth bone scan when I was 28 , it spread through my entire body ,even my nose and ears.
I had it since I was 14 I am lucky mild case I still have back pain yours sound a lot worse
Very important info and insightful ♥️