Early AS Signs I Wish I Picked Up On

By James Hollens

5 min read

I am often asked if there were early warning signs prior to my AS diagnosis. I used to believe that there weren’t any and it all happened suddenly. I’ve spoken before about my road to AS diagnosis; I woke up one morning in agony and unable to move. I had always thought that this was the first indication that my body was malfunctioning.

However, as I continue my journey with AS and speak with others with the condition, more memories have unlocked. I realize now that there were early signs something was wrong. Being a typical male, I did very little at the time to act on these warnings; I opted to ignore them and push on with my life.

I have since remembered things that happened in the months leading up to that painful morning which I now consider to be warning signs.

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Back pain

Okay, there was one obvious sign that I have always known was linked. After years of working as a kindergarten teacher, I had got myself a new job in an office. I started experiencing back pain which I assumed was due to my new sedentary role; I had previously been running after kids all day.

I figured I must have been sitting awkwardly so I made an effort to correct my posture going forward. However, this did nothing and the pain was getting worse so I decided it was time to see a doctor. After examining me, he concluded that it was a muscular issue and I had pulled something at the gym. I took this a compliment and evidence that my working out had indeed resulted in some muscles growing.

I was given muscle relaxants and even did a few sessions of acupuncture to try and clear this up. The pills did absolutely nothing but I did enjoy the excitement of having needles flicked into my joints and found that it gave me some short term relief.

In hindsight, I should have pushed the doctors more to find out what was wrong with my back before I woke up that morning, but my toxic masculine side kept telling me to grin and bear it.

Walking funny

I was having some issues with one of my co-workers and we really did not get on. Unfortunately, we lived very close by so I would often find myself walking with her on my commutes to and from the office. One day where I was forced into this less-than-ideal social situation she made a comment to me that annoyed me.

"Why do you walk like that?" she asked me. I raised my eyebrows and replied "like what?" "You walk really funny, your feet are all over the place." I looked down at my feet and couldn’t see what on earth she was talking about. Everything looked regular to me so I simply kissed my teeth and said "OK then..." hoping that this trip home would soon be over so. I assumed she was just finding something to poke fun at to be nasty, such was the nature of our relationship.

Physio confirmation

Fast forward many months and I was experiencing a very intense flare up and having a huge problems walking unassisted. I managed to get an appointment with a physio to try and help me get back on my feet. Before we got started on any exercises, he wanted to assess my mobility by watching me attempting to walk. After a brief catwalk using my crutches, he stopped me and instantly commented on the position of my feet. He pointed out that both of my feet were pointing to the side. I didn’t see what the issue was.

I guess this had been going on for so long and I was so used to seeing my feet behave in that manner that it did not strike me as unusual. I’m still not certain what aspect of AS was causing this (would love to hear from anyone that does know in the comments) but after receiving my medication and starting my physio exercises this was soon corrected.

The physio’s comments gave me an instant flashback to the conversation with my co- worker and I realized it was definitely something I should have acted upon. Nevertheless, I still don’t want to give that nasty co-worker any credit for picking up on this!

Fatigue

I was really battling with my mental health at this time. A number of things had happened in my personal life that had led to me feeling very down and lacking motivation. I couldn’t find the energy to go to the gym or socialize with my friends as much as I used to. Instead, I felt as though all I could do was stay in bed and order in meals. I just didn’t have the energy to think about whipping something up in the kitchen.

At the time I thought these feelings were linked to the depression and anxiety. However, since receiving my AS diagnosis, I have experienced periods of fatigue that are very similar. Looking back, I think that although my mindset at the time was probably partially to blame, I was probably experiencing some AS-related fatigue as even during the times my mood was lifted, I still struggled to find any energy.

This won’t change anything

It’s too little too late to do anything with this information now. Even if I did act at the time, it wouldn’t have prevented me from getting AS, but it may have helped diagnose it earlier. I could then have received treatment to stop such an intense and prolonged flare.

I thought I’d share this in order to stress the importance of seeing a doctor at the first sign of something changing in your body.

It is so important to address any health problems as early as possible. I regret how I put off visiting the doctor. I could have saved myself months of pain and misery if I wasn’t so stubborn. If you think you may have AS, another condition or are experiencing any unusual symptoms, do please get yourself checked out as soon as possible. There is no harm in going – you will either have the relief of knowing there is nothing wrong or be able to receive treatment to get things sorted or under control nice and early.

The same applies to people who have already been diagnosed with a chronic illness like AS. Not only do these conditions often like turning up inside our bodies in groups, but there are other health conditions that can be linked. So the second you notice something don’t be afraid to ask a doctor about it - it’s always better to be safe than sorry!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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MikkiDaFish Member
I don't want to generalize but, since I've been in the US I've noticed that my PCP and other doctors in general practice have a reluctance to label any ailment. I've had Fibromyalgia for many years (albeit only formally diagnosed in 2000 - in England). As the symtoms and effects are similar to other bodily ailments, such as AS, nobody thought to go further. Fast forward to 2023 - and many flareups of my back later - I asked my PCP what could be the issue. Muscle strain and spasm (which I've also had for more years than I can recall), the latest arriving with a vengence New Year 2023. I decided to do my own investigation, three months into the ongoing problem, using the Web. Lo and behold! Most of my symptoms pointed to AS. Asked my PCP - response, "Oh, I doubt it." Another doctor got my own diagnosis and decided to ride with it, and get my blood tested. Shazam! I had the marker for AS - and that's hereditary (although I'd never heard of it until I did my own research). Upshot? Now going to visit with a Rheumatologist in October. I have done further research and have found that I have symtoms and effects of two other linked conditions (which I won't go into here). In the meantime I've had corticosteroid shots into my SI joints, Osteomanipulation treatment and regular PT, all of which have gone some what towards helping me get regular movement back. Next step? Loosen up the stiffness my my back and legs with visits to the gym. SOOO my advice would be to do your own research. Doctors here in America seem to be largely resistant to that idea, some even get irritated, but stand by what you find and ask them to follow through with tests if need be. And be overtly stubborn if they pooh-pooh your own self-diagnosis. Strongly insist on further tests if you think that's needed.
1. Rebecca C Moderator & Contributor
 Thanks so much for your view and experience, <inline-mention username="MikkiDaFish" user-id="6906533"/>. Being your own advocate is crucial when dealing with spondyloarthritis or any chronic health condition. It empowers you to make informed decisions about your health. And, effective communication helps ensure that you receive the best possible care and treatment options. If you feel uncertain about your diagnosis or treatment plan, don't hesitate to seek a second opinion. Or, i
2. James Hollens Moderator & Contributor
 Hi <inline-mention username="MikkiDaFish" user-id="6906533"/> , As a Brit myself, I'm not too familiar with the practices over in the States. But I think doing our own research is always a good idea, so I am glad that you have pushed on and done some of your own. Sorry to hear that it went under the radar for so long, but I hope that your appointment with the rheumatologist goes well and you are able to get some answers and a good treatment plan to help manage whatever the results show. I think movement is such a great idea, I met with a physiotherapist who help me come up with a personalised stretch routine that targets the areas that I struggle with the most. It has helped me reduce my pain and stiffness immensely. Have you been to see a physio too? Sending love and positive vibes, James (Community Member)
Jvernice Member
I should have gone to the doctor when I noticed during my periodic CPR course I could not comfortably lean over the dummy like i used to. I was in my mid-forties at the time. I did not know about AS until diagnoses and it took many years to finally find a doctor who looked at my entire body instead of the specialties that doctors look at through their blinders. I did not get diagnosed until I was 61 years old. Lots of damage occurred during that time to the point of no return. I have been in stage 3 of the disease since diagnoses (more than 80% of my spine is permanently fused).
1. Rebecca C Moderator & Contributor
 <inline-mention username="Jvernice" user-id="4232099"/> - early signs are hard to see, thinking they are simple sprains and strains at the time. It's difficult to discern that one backache or pulled tendon is really a full-on progressive disease. I, too, never knew about spondyloarthritis until diagnosis, after years of suffering back and neck pain and tendon and joint injury. What a journey it's been for many suffering through specialists wearing those blinders, where so much damage is done and the puzzle pieces were not put together. Hoping you are managing as well as possible and the pain is at a minimum. Thanks for sharing your story with us in the community - wishing you well. Rebecca (comm advc)
JMHusker Member
Hi <inline-mention username="James Hollens" user-id="2107776"/> , Oh my land, it’s so easy to just think all the symptoms are something else! I remember in my early 20s having back pain and a horribly stiff neck and chalking it up to cheap mattresses and cheap furniture as a broke grad student. Then at 30, I chalked all the pains up to the months spent training for and then running the Chicago marathon. A doctor at that time actually told me it was AS but then I had 4 doctors after him tell me he was crazy and that it “absolutely” wasn’t because its something mainly men have. So I believed them and never really thought more about it. Then after I had my son at 39, I found myself unable to walk 3-4 times a year for weeks on end and chalked that up to having a child at a late age and a car accident. Finally at 48 I found an amazing rheumatologist who confirmed the AS and then at 50 she convinced me to start Humira and Meloxicam and it’s like a whole new world!! It only took about 25 years! 😂
1. JMHusker Member
 <inline-mention username="James Hollens" user-id="2107776"/> I have ZERO idea how I ever did that marathon! Haha! All I can say is that I was young, had no kids and didn't have a lot of responsibilities so I had a lot of time to recover! I feel like I'm doing pretty well at the moment although I know things can change over time. Starting those meds a year ago made me feel SO much better and gave me back a lot of energy. Once I felt better and because I'm a nerd, I started slowly looking into everything I could find about AS and joined some Facebook groups and started to understand the many issues it causes. It really helped me to begin to let go of the guilt and shame I've had for a long time for feeling lousy and exhausted and not feeling like I could be the mom I wanted to be. Then recently, I started working with a doctor for weight loss because my rheumatologist mentioned that we are at a higher risk for cardiovascular issues and even higher if we're "fluffy" (that just sounds nicer than obese...haha). I'm finding that, for me, eating mainly protein and veggies and cutting out sugar and wheat has helped even more with my AS and some other health issues. And while I'm saddened to know that Cadbury Dairy Milk shouldn't be my breakfast/lunch/dinner, I'm going to keep doing what I'm doing so I can keep feeling like this as long as my body allows! Thank you for sharing your story...it's enlightening and strangely comforting to hear others' experiences. This concludes my "novel"...haha! 
2. James Hollens Moderator & Contributor
 <inline-mention username="JMHusker" user-id="4165083"/> Haha wow that is very impressive indeed! I was half hoping to do some kind of charity run this year but it is already October and I haven't even managed to go jogging once haha. Glad to hear that you are doing well for the most part at the moment! I hear you this condition loves switching things up with no notice but fingers crossed things continue to go well for you for the foreseeable! Haha there is nothing nerdy about putting your body first and looking up ways to stay as healthy as possible! It sounds like your research has really paid off and you have found a lot of ways of improving things! It is a tragedy that a chocolate diet is not practical for us! I did a bit of trial and error with my diet and realised that avoiding gluten and dairy really reduces my inflammation and pain. I try to dodge it when I can but I might treat myself to a pizza when things are going well! And thank you so much for being open and sharing your experiences too, I find reading things like this very comforting as well! Wishing you well, James (Community Member)
onlylight210 Member
Thank you for always sharing and being an advocate in our community. Personally I had multiple signs for years, more so when I'm lived out of the USA. Agonizing lower back pain, days I could barely walk, and fatigue since I was in my teens. Always thought I'd partied to hard, hiked up too many mountains, etc.. Never saw a doctor, hey I was young and invincible fueled by cocktails. 
1. onlylight210 Member
 <inline-mention username="James Hollens" user-id="2107776"/> My heavy party days happened when I left my hometown of Detroit for college in Miami. Just saying Miami you know it was full tilt all the time 😂. From Miami I moved back north to Chicago, another "fun"city, but total opposite weather. I left Chicago for Mexico City and the later the state of Chiapas, where I lived and wore my joints out for almost 10 years. Currently living with AS complications, neurological and mental health issues. The last year has been truly my "dark night of the soul", but somehow I just keep riding it. 
2. James Hollens Moderator & Contributor
 <inline-mention username="onlylight210" user-id="4132029"/> Haha I can imagine that the partying turned up a notch when you made it down to Miami! Did you notice the weather in Mexico helping at all? I spent a few weeks there this summer and feel like my body was coping a whole lot better than it does in the gloomy conditions of London! But I suppose it was only a snippet compared to spending a decade there! Sorry to hear that you have been going through this issues as of late, I hope you are able to find the help and relief that you need soon. Glad to hear that you have not given up though, keep riding it - you got this! Sending love, James (Community Member)
Julie Vallortigara Moderator & Contributor
Hey <inline-mention username="James Hollens" user-id="2107776"/> I hope you are well. Just to answer your question about past experiences and potential link with AxSpa / AS : I had a bad tennis elbow and also inflammation of the Achille's tendon. Both were hard to control, and I have kept a sensitivity in these joints since. So yes you do wonder if these were early signs... Take care, Julie.
Rebecca C Moderator & Contributor
<inline-mention username="James Hollens" user-id="2107776"/> - thx for getting the word out about spondyloarthritis and the awareness of how recvg an earlier diagnosis can benefit the patient better by getting treatment. Earlier diagnosis equals - going through less pain and agony with inflammatory arthritis. I hope you've got your disease under good control and that your fatigue is minimum. I need to get myself moving - I'll definitely begin to feel better. Rebecca (comm advc)
1. James Hollens Moderator & Contributor
 Hi <inline-mention username="Rebecca C" user-id="2106882"/> , Thank you for the kind words and for doing amazing things for raising awareness yourself! Yeah I think it is so important for people to pick up on these things as early as possible so they can avoid things getting bad as they were for me when I finally started chasing my diagnosis! I hope you are able to get a bit of movement in today and that it works some wonders to get your body feeling better so you can enjoy the upcoming weekend! Best wishes, James (Community Member)
VickyB Member
Long before my diagnosis, and way after being misdiagnosed for years, I also woke up one morning with intense pain in my back. It took 20 minutes to get up and every step hurt like my bones were breaking. My rheumatologists still continued claiming my “mild” RA was the problem. A Mayo Clinic dog finally diagnosed me a few weeks ago. As for past clues, I had plenty, but I had never heard of spondyloarthritis so I did like you, just bested it and went on with life. 
1. VickyB Member
 <inline-mention username="James Hollens" user-id="2107776"/> hi! Yes, I had already been on Humira a few months and it is really helping! I also take Lortab as needed, but mostly just take one at night to help the “wake you up” pain. He feels I never had RA, although like you I do have a prior inflammatory arthritis. I have Sjogren’s, which he confirmed. I’m doing ok, but am having some issues that I think may be kidney or anemia. Trying to get in to have them seen about. So (sigh) we shall see.
2. James Hollens Moderator & Contributor
 <inline-mention username="VickyB" user-id="4770052"/> So pleased to hear that the Humira is helping a lot already! That's a pretty smart move with the night time painkillers, have you found it helps you sleep a bit better? That's pretty interesting that they undiagnosed the RA after! I wonder what it is they look for to decide whether the original one was wrong or its a double dose of arthritis! Sorry to hear about the kidney issues, I really hope you can get that addressed and sorted as soon as possible! Wishing you all the best, James (Community Member)
Julie Vallortigara Moderator & Contributor
Hello <inline-mention username="James Hollens" user-id="2107776"/> That is such an interesting article, thanks for sharing! Yes I agree, looking back now we can probably find some signs, some hints, some unusual physicalities that we could have picked up. I don't know about you, but somehow finding these signals in my backstory kind of helped me to make some sense about my diagnosis and accept it eventually. I also had back pain at early days, and some flares in different joints before being diagnosed with AxSpa. Now what you mention about your feet raised my curiosity, as I do find myself a bit clumsy with my legs / feet sometimes. Do you remember what was the link between the position of your feet, how your moved your legs, and AS diagnosis? Like you I could have saved myself some time and pain. And yet, unfortunately as you know in the UK on average it takes 8.5 years to diagnose people with AS. So that means that even with the best intention, there are clearly things to changes in the healthcare system to diagnose people quicker. Now I am aware about long term conditions, diagnosis and treatment, I surely don't leave any new symptom unchecked and I really advocate for myself to the healthcare professionals I see in order to get to the bottom of it and get answers! I hope you are keeping well and keeping cool these 😉 Take care, Julie. 
1. James Hollens Moderator & Contributor
 Hi <inline-mention username="Julie Vallortigara" user-id="2107984"/> , Thank you for reading my article and sharing those kind words! Yes I think you are absolutely right about that, I find myself remembering something from the past and thinking 'ooh that was why!'. What things do you remember from your past like that? To tell the truth I can't remember the exact link but I do have a phone appointment with my GP tomorrow so if I manage to remember I shall ask them! Wow is it really 8 and a half years? I guess I am kind of grateful that mine was a lot quicker than that I suppose! I think that is certainly the best thing to do, I have definitely stopped being a classic male putting off doctors appointments since my diagnosis - any change I notice in my body I am off to get checked asap! Haha I am making the most of the sun while it is here! I hope you are enjoying the sunshine too! Best wishes, James (Community Member)