Remission? Wow. Remission!
Honestly, I feel great. I don’t (nor does any doctor I’ve met) know why or what to credit (that’s why I’m detailing everything here in case it matters to someone), but I do feel great. No flares, no pain, no impairments to my body or mind. I've been enjoying it for 9 months and every day I am still so grateful for my health. AxSpa was the worst 4 months of my life and I tried everything all at once to fix it, and something made the difference so now I'm in "remission”. I didn’t even know that was possible as “remission” is so infrequently talked about when you have the disease and are on this journey. (so I link to the studies regarding remission too).
At my worst
In the weeks following my diagnosis, I found myself feeling alone and depressed. Admittedly I was socially distancing myself during COVID, in a brand new country, with no activities, or friends but to top it off I had no desire to get out of bed. All of that alone was stressful enough and, upon reflection, it should have been reason enough to seek therapy because there is scientific evidence that stress and physical health are interrelated. But at the time I couldn’t get that sort of perspective; I couldn’t see past the end of my nose. I wanted to attend counseling because I was unable to articulate to my satisfaction why I was crying when I was discussing my day with doctors or family back home. I thought of it as a purely physical issue and couldn’t see how counseling could help relieve physical pain, in those moments. Then I came to realize that I was grieving for the loss of my sense of self, for my identity, for the life I had pictured for myself. I didn’t know how to be a husband, a father, or an everyday athlete, if I couldn’t move.
I sought help from new doctors in my new country, and I asked them all to explain to me what my disease meant, but none could. Unable to get anything concrete, I contacted other medical professionals I knew or had seen before in other countries and told them that I had this new diagnosis (two days after migrating countries) and that I didn’t understand it and my outlook at all.
All I knew was that I was always angry and wanted to stay still for fear of debilitating spasms wreaking havoc across my body. I couldn’t sleep for the pain, even with several, carefully selected pillows propping me up to stay in a neutral position without pressure on any one point. If I did sleep, I woke up frequently without blood flow to parts of my body because I was staying immobile all night, and if I moved in my sleep I’d wake up with more spasms. My sex life dwindled and disappeared not just as a potential side-effect of NSAIDs, but because I was constantly distracted with pain, stress, and grief.
Coming to terms with the path forward
As I came to understand it, I should be anticipating that I would have a life full of pain and medication, that I had a lifelong, chronic disease that qualified me (me!), for disability payments, and that there was no known cause or cure. I thought that I might never be able to work again because, my sad and sorry self assumed no one would want an employee that regularly couldn’t get out of bed, let alone get to work on time, let alone hold a toothbrush or otherwise clean and groom themselves, whom didn’t want to talk or think, was frequently short-tempered, and rarely smiled without wincing, simply because they were always distracted and frequently engulfed in pain. I couldn’t play with, lift up, or carry my three little children, not because I was weak (I was still strong, for now, in my early stages of the disease), but the enigmatic, non-muscular-skeletal pain could overcome me and I might lose control. I lost the use of my right thumb for pain there so I was holding tools like a baby might, and my right heel didn’t like any pressure either so walking became hobbling.
I was a wreck but that’s not to say that my life was awful. I knew full well my life was blessed and that I was still luckier than 99% of people in the world, it was just, well… except for my health this year. I knew all that cognitively, but it was hard to emotionally feel happy even if I was grateful. The grief and the distraction from the pain, and even just the fear of pain, was just too great to enjoy many things in the moment. I was genuinely grateful later in the day though, after the event, when I was still, inside, and resting. I was grateful for the days I held a conversation, or got dressed by myself, or played with my kids instead of declining their requests all the time.
With every new tidbit I gathered about AxSpa, be it from doctor’s advice, googling, or support groups and apps, I’d find my emotional and physical state flipping between lying on the couch, doubled over in pain, unmotivated to get even a glass of water for fear or pain, still hoping this was an injury or a nutritional deficiency I could conquer, or, I’d be taking far more NSAID pharmaceuticals than I’d ever seen before, stressing about my liver and kidneys’ health, lacking some vitality, being distractible, and feeling barely being functional but reassuring myself that at least I appeared on the outside as sociable and relatively normal. I was depressed, so I felt like I had no one to turn to who could help, no answers, no understanding of what the future held, and in COVID times, just not enough hugs.
A little background
My wife (an Olympian) and I are both experienced athletes, used to a life full of daily training regimes, familiar with many injuries and successful rehabilitation programs, with a strong network of fitness-related professionals, and I’m also a yoga and fitness coach myself. We know good pain from bad pain, we understand sports psychology, we can self-diagnose a lot of familiar injuries, and we spend a lot of time and energy on self and health care, and eating well. I’m also mindful that with each of my three children’s arrival, as a full time dad, I was spending less and less time on myself or exercising. I have always eaten what I considered a healthy diet. As I learnt more, I changed my diet, and after cutting beef in 2011, I went plant-based overnight in 2016, not only for health reasons but to help the planet. For 3 years before I experienced any AxSpA symptoms I was happily eating exclusively plant based meals, mainly consisting of Italian pizzas and pastas, Asian stir-fries and curries with rice, Mexican burritos, and breakfasts of oatmeal and fruit. I was also using intermittent fasting. At a glance, my time-restricted eating and diet was a relatively low inflammatory diet (meat and dairy contain saturated fats that are linked to in vitro inflammation and bacteria found in dairy and meat may trigger rheumatoid arthritis). Yet here I was.
My dietary routine nowadays
Now in remission, I eat loosely what could be referred to as a keto-vegan diet without nightshades. It would be quite restrictive if I didn't cheat so often but it doesn't feel like that any more. I quickly (after 2-3 frustrating weeks) came to love the food and I now I allow myself plenty of cheat days so I’m perfectly happy with my staples most days and most meals. If you are interested, I'm always happy to help detail my meals, and I liked some of the Facebook groups I joined, but if you're after a premium online support group, I discovered that the Paddison Program was in line with what I was reading about AxSpa and the Anti-Inflammatory Protocol diet too, but I personally felt I didn’t need to pay for support and reinforcement of my plant-based ideals. I had support elsewhere, not least from my wife to cure her husband, so I didn't continue with support groups once I was in remission.
For breakfast I cut up about 20 types of fruits, nuts, and seeds, and cover them with almond milk to replicate the experience of cereal and cold milk I grew up with. Usually I have bigger serves of stir-fries, curries, salads but I skip entirely the pasta, noodles, rice, corn and wheat (grains) and potatoes (a nightshade). I usually skip the nightshades (even though the science is out on whether their absence is beneficial) because my favorite vegetables (potato, capsicum, zucchini, chilli, eggplant) are anecdotally inflammatory. I just have different vegetables like sweet potato, radishes, squashes and pumpkin, and instead of red chillis. I usually go for peppercorns or ginger for some kick. I have sweet potato chips regularly, and I mix that with some hummus and that’s my comfort food. Once a week I have a vegetarian pizza with everything I’m not supposed to have (nightshades, wheat, and cheese). Looking back, (if diet has anything to do with AxSpa) my cheat days might have caused a few flares early on, but within 6 weeks, this diet or the NSAIDs I was taking, cleared up the pain, and within 3 months, all symptoms disappeared entirely. Now, I happily enjoy a few grains and nightshades, not just on my pizza, but whenever I eat out probably, but I stick the above breakfast and dinner combo 5-7 days a week as the sum total of my caloric intake, and I personally think that’s doing the job.
How did I get to remission?
My first rheumatologist conducted all my tests and then I flew away to a new country so they had to email me my diagnosis. Unfortunately, there were no rheumatologists in my new country and my first rheumy was unable to continue to treat me if I wasn’t returning. I then was declined tele-health consultations from two other countries before I found my US-trained, Thailand-based, tele-health rheumatologist. I have to do some more blood tests and meet with them this month for the first time this year. They told me that no one knows why AxSpa starts, that similar to Multiple Sclerosis, there are genetic factors in play, but also environmental factors and triggers and we don’t know what the combination is. That only 10% of people with the HLA-B27 genetic marker ever have symptoms, and some people with an AxSpa diagnosis don’t have this genetic marker. We don’t know why some people have success holding back progression, or why some people go into remission. There simply isn’t enough statistically significant data available to point the finger at any one thing, and no silver bullet, I'm told.
They did say, when I brought it up in our meetings last year however, that areas of research include different diets, include faecal transfers, include the microbiome health and probiotics, and other areas like exercise and stress, but these are not yet in clinical practice because every one responds differently. My rheumy was very transparent in these discussions with me and made lots of notes to detail the changes I was making to my lifestyle, invited me to send him any research papers I was reading, and was okay with my conducting these experiments on myself, but made it clear that he simply wasn’t able to recommend the dietary and other lifestyle changes outside of available clinical practice data.
Could stress or diet have strained my symptoms?
If there was something else in my diet or lifestyle that caused my AxSpa, then speculatively, it could be stress, oil in cooking (which increases triglyceride levels, which are linked to plaque and inflammation of blood vessels), too many grains (which are speculated to have a role in inflammation), or one particular kind, or other issues with my microbiome bacteria, leaky gut, acid, mucusal lining, or enzymes. I'm 186cm and my weight had dropped from 84kg under 80kg, same as when I was in high school, so it was a concern, but not a risk factor. We just don’t know enough about the disease. As an aside, I mention inflammatory risk factors of cardiovascular disease because axSpA patients have increased risk of / correlation with CVD.
My rheumy said stress may be an underlying factor and that a deficit of exercise could also be in play (I knew with the arrival of each child my exercise volume had progressively decreased). He recommended I continued my yoga, cut out meat and dairy and try fasting (all of which I was already doing), he wanted me to pick up some swimming, meditation, low-intensity exercise, have extended (20-45min) hot showers and baths and massages regularly, and to continue the prescribed NSAID medication. Except for the ridiculously long showers, meditation, and massages (that weren’t really my thing), I followed the advice closely.
By this point I had read through the rheumatology practice documents of HK and the UK best practice care pathways and it reflected my experience: if this [treatment/symptoms/blood tests/side effects] then try that, else... if then, else ...if then else... and these documents described how patients are often frustrated and scared. It feels like our doctors are experimenting on us because the outcomes aren’t known, and they aren’t in the individual or collective clinical practices.
Regarding medication: May 2020
In my ignorance, I started mixing ibuprofen with diclofenac, incorrectly thinking they were the same thing. Counter to advice I've since been given, I generally tried at the time, to minimize my consumption of the drugs because I was inherently against medicine unless necessary and it seemed symptomatic treatment that I equated with being useless. Contrary to my naive perspective, I now understand that medicating inflammation for those with AxSpa is not just to minimize pain and be functional, but is important to slow disease progression and calcification of joints etc.. By switching medicines and minimizing its use, all I demonstrated to my rheumy was that I wasn’t functional when I wasn’t medicated. I was also told about the half life of the NSAIDs and how I really needed to take them consistently to stifle any flares.
But, still thinking that ibuprofen and diclofenac were identical, I took a very high dose of NSAIDs for a few weeks without realizing my error. This apparently demonstrated that my disease wasn’t an injury or viral to my rheumy, as the pain (a proxy for the inflammation) was persistent and consistently returned when the medicine in my body waned (meaning that even with adequate time of low inflammation in the body, it still hadn't been able to heal itself).
I stopped my time-restricted fasting because I was asked to take omeprazole an hour before eating, and then my NSAIDs after food and fasting didn’t allow for pain management. It was hard fitting medicine around my fasting so sometimes I'd just go hungry and without medicine and that just made me suffer more.
Figuring out medication had its challenges
Through all these ignorant, accidental experiments I was conducting on myself, the rheumy was quite satisfied that my original diagnostics were accurate and they said they wanted to prescribe me DMARDs but none were available domestically. If I wasn’t able to manage my pain, they encouraged me several times (during a period of international border closures and facing down 4 weeks in quarantine away from, or stuck with, my 3 young children and amazing wife), to make my way to his clinic overseas for thorough testing and long term medication supplies.
In lieu of DMARDs, was tasked with moving away from Diclofenac (August 2020) and put on to Naproxen (for various stomach, intestinal, heart and kidney risk factors attributed to long term use). I didn’t like Naproxen because it wasn’t eradicating the pain for me like Diclofenac did. I was barely functional. I asked if I could increase my dose but it was declined, so I switched back to Diclofenac. Naproxen was again promoted to me, and through a miscommunication over email, I started taking double the recommended daily maximum dose of Naproxen for a month. I was a little worried about my liver and kidneys because my doctor had originally declined my request, but boy did I feel good. I still had little libido (a possible but controversial side effect of NSAIDs or just the underlying condition) but I was happy and pain-free for the first time in months. When the dosage was discovered however, my rheumy was shocked, and ordered a series of my all too familiar blood tests. He wanted to confirm my liver and kidneys were not permanently damaged, and asked me to stop taking the medication for 3 days, then do another blood test once the medication was out of my system. It ended up being three blood tests that week because my potassium was so high so I was asked to take a potassium-binding agent and retest.
As an aside, my potassium was high because I’d taken a supplement when I’d read online that AxSpa sufferers often had low potassium, but I’ve subsequently learned it is one of the easiest ways to cause kidney damage and that I should have been tested first instead of supplementing it. That was dangerous and an unnecessary supplement anyway.
Therapy was definitely in order
On one hand I liked the idea of getting a benchmark blood test before and after the medication change, but I was absolutely terrified of the pain returning. I had vivid memories from just a few weeks ago of the crippling, torturous spasms, the grief, fear of moving, and loss of identity caused by this disease, and it filled me with dread. It seemed that every few weeks, as we experimented with different drugs (working, not working, take more, take a different one), as I learnt more about this disease (“I can beat this”, “this is lifelong”, “this is a nutritional deficiency”, “there’s no known cure”), as doctors and google told me different aspects and risks (“symptoms might not progress”, “this may end your life prematurely”), that my outlook and their goals for me kept being changed. For various reasons I hadn’t yet started counseling but when I was struggling to come to terms with my own expectations for my future and whether I was meant to be optimistic, or not, I knew I could have benefitted from some, even just for stability - just in lieu of friends, just to chat.
It felt like, just when I thought I had found a dose of medication that let me be me, that I could see a light at the end of the tunnel and I honestly felt that I was nearly myself again, that they were taking it away. For that relatively blissful month, with manageable symptoms, I had decided that if I was going to be dependent on taking 8 pills a day to get my relief, I felt like I didn’t need therapy, and everything was going to be ok. And then, with a single word, my rheumatologist called me back after our consultation having changed their mind after the call, and said “stop”. I was horrified. How could I go back?
The pain didn’t come back though. 3 days passed (October 2020), and my rheumy and I met online for a brief call, and then again at 6 days, then 10, then 2 weeks after stopping. Each time we ended a call I expected to go downhill. Some pain was always there over the next 2-3 months, but the spasms racking my body never came back, and slowly my thumb and heel pain subsided and eventually disappeared (December 2020). I continued my diet, but my motivation to religiously continue my supplements and my new exercise regime diminished, likewise, the pain slowly disappeared too - and regular blood tests documented this. Family asked me if I should try an elimination diet to isolate flares and triggers, but, given the science had been unable to even say AxSpa was diet related, and given that I was enjoying my diet and cheat days and cheat snacks and meals anyway, given that my symptoms were so much better and more manageable than they had been, there was no compulsion to try and introduce the rigour and stress of an elimination diet to only potentially gain further insight.
Maybe it was all stress related anyway
Symptoms started in December 2019 while I was planning a big road trip with my young family of six, our first ever, and I wasn't confident in our contingency plans. I had a niggling pain in my lower back, mainly on the left crest of my hip, and on deep inhales my sternum hurt uncomfortably. The trip was a success, but due to my pain and the driving exacerbating it, I was more short-tempered, antisocial, and inactive than I'd have liked to have been. I put it down to the stress of an international family holiday, and fatigue from driving. I put off getting treatment until we came home because it didn't seem severe, and I hoped that a visit to the chiropractor would set me straight in a jiffy again (even if the pain was surreal and unlike my previous experiences with pain, I was at least hopeful there was a quick fix). I am lucky enough to be a stay at home dad, so aside from being unable to teach yoga, the pain for the first half of 2020 wasn’t cramping my style much at all. Until the cramps started in earnest.
All of a sudden in April, the pain flared. I knew I had to get help so sought out my chiro and osteopath. My osteo been an official Olympic team osteo and sees me a couple of times a year to treat my psoas usually, or a little back or neck pain. This pain however, was indescribable to me. It wasn’t a muscle or ligament that I’d hurt, dislocated or broken this time. I couldn’t satisfactorily describe my symptoms to others the way I have always been able to do so in the past. The pain moved around and affected me differently minute by minute and day by day. I simply couldn’t move. I hobbled into Aaron’s osteopathic practice and crudely made my way on to his treatment table. We chatted away, and he was fascinated that my blood was not moving back into the places he massaged, like most people, and instead the area just stayed pink and blotchy. In fact, he said he had only seen this in 2 or 3 people in his career and he said, out of nowhere, "I think you have all the symptoms of AxSpa and if I were you I would be doing everything I could to be getting diagnosed straight away". He spoke to the doctor next door and, based on Aaron’s description of my symptoms and pain levels alone, got me some Diclofenac, and asked that I get my HLA-B27 and CRP levels tests, and a referral to see a rheumatologist.
I was quite busy with pain, the possibility that we might be relocating overseas, and COVID-related social distancing and home schooling, and local regular public protests, discouraged me from getting my appointment and testing done immediately with a trip to the city, so for a time I spoke to Aaron and my chiro about what I could do until I was better (still thinking that this was temporary). They suggested things I was already doing. Weeks slipped by and the whole family did some medical screening, including inflammation tests and suddently the possibility of our international move being cancelled due to my health came up. There was no more hiding the fact that I needed help, and a pathway out of my predicament, right now.
Trying a path to remission
In July 2020 I saw a local rheumatologist, whom gave me an MRI (which showed/didn’t show non-radiographic growth), and blood tests for HLA-B27 (positive), ESR (70), CRP (40), and my diagnosis a few days later. Unfortunately, during those few days, I was also relocating my family to our new country. Here, there are no rheumatologists, no DMARDs, no clinics capable of MRIs, and I was stuck in quarantine in the middle of the COVID-19 pandemic with 3 kids and my wonderful wife who was worried about me, starting a new job, and trying to work in our compulsory hotel-quarantine. I was probably still quite stressed, still quite short tempered, but we managed. It was here in quarantine that I reluctantly stopped fasting. Trying to minimise my dose and my reliance on them just made me harder to get along with, and I know now, that even the quacks recommend keeping the pain and inflammation low with AxSpa, else your condition can permanently deteriorate. My wife spent a lot of her spare time, after working long hours in her new job, researching everything she could about my condition because I, distracted by the pain, just didn’t have the focus to do so myself.
It was late September when she came across a doctor that prompted me get me on an AIP (anti-inflammatory protocol) diet, and a Level 2 version that was supposedly for AxSpa (rather than a Level 4 version which is a complete elimination diet, with phases for complete restoration of gut health). We didn’t see any changes immediately. I was even more unhappy and stressed for the first 2 weeks - adjusting to a strict new diet is very challenging. But I was highly motivated for change so I fasted instead of cheated. Then I found some sweet potato chips and hummus and I ate loads of it every day for snacks. We experimented with and found new recipes and tweaked them and after those first 2-3 weeks I started to enjoy the diet(!). It was another 2-5 weeks before I started to notice a change in my pain and blood tests (but some people don’t start to see changes for 4-6 months if they’re at this supposed level 4 of gut health degradation). The following month, after my extra-high NSAID doses for all of October, my doctor instructed me to completely withdrawal from my medication. The drugs that I thought were keeping my pain at tolerable levels were taken away, and the pain didn’t come back. In November with more blood tests and his pain patterns questionnaire, the doctor said I was in remission. As I said, it took another 3 months to disappear entirely, and it was all documented with blood tests, but by January 2021, my rheumatologist was happy not to see me for another 6 months because I was doing so well in remission.
He also warned me that people lose discipline in remission and tasked me to keep doing what I was doing, but to give myself space for cheat days and keep the baseline meal plan in place. If it’s easy and enjoyable, don’t stop, he said. I remember that advice every week.
Today I am feeling better
My rheumatologist and I don't know specifically what made the change in my body, why the disease came or why it stopped, but I never ever want to feel like that again; like staying on the couch all day, or spasms wreaking havoc throughout my core, or worried I was killing my liver and kidneys on drugs. I hope that the diet changed it. Between my terror of coming off the meds in October, to steady decline until December/January 2021 (matched my monthly or weekly blood tests), AxSpa was the worst 4 months of my life.
I wish everyone had as much support and success as I experienced. More blood tests in a few weeks will continue our monitoring of the condition, as we need to ensure the disease doesn’t progress and fuse bones or develop bone spurs etc. I have resumed 16:8 fasting and moved from 95% back to 99% plant based diet. I'm teaching yoga again and have regained some of the muscle mass I lost when immobile. I don’t think that dabbling with animal products (meat, eggs and dairy) changed anything for me during those 4 months. The doctor says if I stick to the diet and the exercise and problems don’t come back then it seems to have been the saviour rather than the drugs. Switching diets is a tough transition but there’s lots of meat, dairy, grain and nightshades alternatives available that many of us would all be familiar with. Once the mental change is there, then the foods and the shift comes easy.
Other questions I've asked or been asked
What reasons are there to avoid nightshades if you don’t have inflammation issues?
My plant-based nutritionist friend said: "Some people may have their one personal reasons / bias that they don’t like or want to eat night shades, but I have not seen any science or convincing evidence that they are unhealthy. In fact, the science would suggest they are VERY healthy and you should included them in your diet! If you had sensitivities to certain foods, then obviously you need to eat accordingly. But night shades are certainly a part of a healthy Whole Food Plant Based diet!! And there is evidence that they can also (among other health benefits) help prevent Parkinson’s Disease! I eat them every day, love them, and will continue to eat them forever." My rheumatologist said the same thing: "avoid nightshades only if you have a sensitivity. Evidence is anecdotal". But some people are so convinced and it’s made it’s way into AIP, so what I understand is that if you have problems, consider excluding them among a broader elimination diet plan.
Should I pursue a controlled elimination diet?
My rheumatologist said that he "Couldn’t clinically assist. To pursue an elimination diet one would seek out a dietician, allergy specialist, or other chronic disease specialist." Simply: Nutrition is not within the realm of rheumatology, and is not part of the clinical recommendations. I’ve learnt now that rheumatologists specialise in joints and if someone were to believe that AxSpa, Multiple Sclerosis (MS), Rheumatoid Arthritis (RA) and other autoimmune diseases, or their environmental triggers, were in fact digestive disorders (gut health, microbiome, leaky gut), that they aren't simply biology etc, they would need to seek the help of a digestive or other similar specialist.
I am living with....