photo: Craig Whitehead, Unsplash
Growing up as a child, I was extremely healthy. My younger sister had frequent tonsillitis and otitis, but not me. Apart from the usual scratches and bruises, I was a perfectly healthy and happy skinny girl. When I was 18, however, things started to change. I had an injury in my foot, a ligament rupture after a seemingly harmless fall in my first school day as high school senior. It took me 9 months of physiotherapy and a surgery to recover, meaning that I spent my whole senior year at home – no parties, minimum going out. As an 18-year-old this was tough! Nobody understood why it took me so long to recover (including doctors and myself!) so many of my colleges and teachers just thought I was making it all up. And again, as an 18 years old this seemed really unfair, to say the least. So I focused on the studies and in getting into college – the year eventually passed by and I was accepted.
My “healthy” years
After few months into college, I had a depression. I didn’t really understand why, but I blamed the damn incident with my foot, which totally isolated me from my friends and from a normal high school life. I ended up changing to a different education and things went back to normal for the next couple of years (even though I still needed my antidepressants). After changing to a new university, in a new city, I started to suffer from extreme insomnia. I couldn't sleep, I had anxiety, my hair started falling out like crazy and I felt always tired. At some point, I stayed a whole week without sleeping more than a few hours (in the whole week!). I was exhausted, angry and couldn't keep up with the classes so I searched for help in a psychiatrist specialist in sleep disorders. I was given more pills, which definitely helped, but never completely resolved the problem. So I went on, going through phases of anxiety, insomnia, and fatigue, which eventually became normal to me.
One day, when I woke up, I was unable to see from one eye. This was a really scary experience! I went to the hospital, was given some drops and within a couple of days, my vision was back to normal. The doctor said everything was fine and I had nothing to worry, so I put it behind my back and moved on. (Later on, though, I came to know that what I had was a uveitis, a common first sign of ankylosing spondylitis.) These were also years of intense work and stress at the university - I was working until late almost every night to keep up with my projects and the high expectations I imposed on myself. Nevertheless, they were good years – I was happy with my studies and the results I was getting, with the environment at the university and I was busy pursuing my dream of going to study abroad.
I was accepted as an exchange student in Aalborg, Denmark and a new exciting phase of my life started. In general, I was working less and having more time to enjoy life. I traveled, met new persons and had fun getting to know this new culture, and apart from the tiredness from the lack of sun, I was feeling great. And I was healthy - despite having a long and painful episode with kidney stones, everything else was under control. But then, I started having a row of different infections that would come and go. I had everything possible – urinary tract infections, conjunctivitis, GYN infections, I even had my mouth full of painful canker sores - and as soon as one problem disappeared, another would start. This became even worse when the crazy stressful months of my master thesis began. By this time, I also started having crazy migraines that would last for a week and my insomnia became worse again. So I decided to subscribe myself to a yoga class to help me cope with the stress. It was actually starting to work, when after a few weeks doing yoga I made an injury in what, at the time I thought was my hip. I gave it time to recover and focused on finishing my master thesis. I graduated with top grade and despite exhausted, I was really excited to the next step, to enter the labour market.
Onset of my disease
During that summer, my "hip injury" seemed to get better. I and my boyfriend moved to Aarhus and I started with intensive Danish classes while looking for a job. But as the winter came, so did the pain. At the beginning the pain was manageable and it seemed to improve with physiotherapy, but as the months passed by it just got worse and worse. Now it was not just my hip, but also my lower back and it was starting to be unbearable. I went to the doctor, made x-rays, was seen by back specialists, but there was nothing. They all just said that there was nothing and it would go away. But it didn’t. It kept growing until I was unable to bike and to bend my back. So I had to stop going to Danish classes: I couldn't get there and I couldn't endure the four hours sited in the chair.
I kept trying new and expensive physiotherapists, new exercises, more massages, but nothing seemed to work. Meanwhile, I was still having weird infections one after the other, so I was going to the doctor all the time. I believe he was as tired to see me as I was of going there. But what could I do? So he started to suggest that my problem was in my head and wanted to send me to a psychiatrist. I got completely chocked with this insinuation and the lack of help and refused. I find it quite remarkable that instead of sending me to a specialist, let’s say a rheumatologist, I was sent to a psychiatrist. But my boyfriend got a job in Copenhagen, and I had the hope that I could find a better doctor there.
In that spring we then moved to Copenhagen. We had lived there already while doing our internships during the studies, so we were both excited to go back. My excitement though didn't last long, as my back pain continued getting worse and my physical limitations kept increasing. By this time I was in so much pain that I could barely walk or even dress myself. I couldn't meet my friends, travel around the country or go for a stroll in the city centre, while my friends were traveling around the world or getting exciting new jobs. Life became boring. I had a couple of temporary jobs during that year, but my health condition was so poor that I couldn't keep them. I was depressed and frustrated. But in the autumn, I was finally sent to a rheumatologist, and with that came the hope that the hell that my life had been for that last one and a half year would finally end.
I did more x-rays, MR scannings, and blood samples but still nothing. I was told, one more time, that I didn't have anything and I should just keep doing physiotherapy. By this time, I had already tried all possible physiotherapists and chiropractors for one and a half year. If that would have really been the solution, I should be getting better already! Besides the terrible, debilitating pain I had 24 hours per day, I was feeling weak, constantly tired and losing a lot of weight. I was starting to look seriously sick and was in desperate need of help. So when in that December, I stopped being able to get out of the apartment because I couldn't walk, I decided to search for help in Portugal.
After a few months in Portugal, and after repeating all the exams, I finally got to know what was wrong with me. I had ankylosing spondylitis, a rheumatic disease that affects mostly the spine and sacroiliac joints, and that typically starts by giving inflammation in the sacroiliac joints, just like I was having for the past years. If knowing that brought me some relief, it was soon replaced by a sense of fear and hopelessness, as I slowly started to realise that not only I didn´t have big chances of improving, as this was a disease for the rest of my life. There is no cure for these type of diseases, I was told. And you have to learn to live with it.
I spent that year in Portugal, going to the hospital every month, repeating blood samples and exams, trying all sorts of medication, all with the hope that the doctor would give me something to bring me some relief. The medication I was given was getting stronger and stronger just to reduce my pain a little bit and to the cost of severer side effects. One of the pills I was taking – methotrexate, is actually an anti-cancer drug, so you can imagine how awful it made me feel (or perhaps you were also given this drug). I started to have gastrointestinal problems, headaches, dizziness, not to mention that I was depressed. I wasn’t feeling better at all, as I expected. Maybe I had a little less pain in general, but not even close to what I hoped. I still couldn’t bend my back to reach my feet and cut my nails or put my socks, nor even to pick something that had fallen to the floor. At this time, I was taking 15 different pills per day (!), just to survive to the end of it. My life quality at the age of 28 (and since I was 26) was unimaginable. It was like I had jumped over all the fun years in life and landed directly on my 80s.
So there I was, living in Portugal with my parents, while my boyfriend was in Denmark working, both hoping that a magic pill would come to fix me. It was tough in every possible way. I was doing intensive physiotherapy every day, trying to gain some mobility in my totally stiff spine and attempting to recover from a severe muscle atrophy in the left side of my back, and which was already making my back sheered - a result from suffering for almost two years without any treatment. But I still had hope – my rheumatologist told me about a new drug, the biologic medicine, which promised good results to finally control my inflammation, relieve my pain and recover my life quality back. After several months of fight and many others of treatments with antibiotics (in some cases a preventive requisite to take this medication), and after changing to another rheumatologist, I was finally given the biologic medicine, Simponi. (Despite what the name suggests these drugs aren't natural and they weaken so much the immune system, making you at risk to get serious infections and even cancer!) I had to take this injection once a month, and possibly for the rest of my life and should start to see improvements after 1 - 2 months and up to 6 months.
The months passed and with them the hope I had to become good again. It did give a reduction in my back pain, but not even close to being enough to recover my life quality back. I still couldn't walk much more than half an hour without having insane pain that would block my movements. I still couldn't bend my back to put the socks or reach the floor. I couldn't be sited or laying down for long periods of time. And I still had to take a lot of other pills to control the pain. And these were the good days, in moments of “crisis”, which would last for a month, I could barely walk. I guess I was “unlucky” that my case was so severe, as there are many persons that do get better from this type of medication. But not me (and unfortunately, I'm not the only one) - I not only had severe pain and physical limitations, as my gastrointestinal problems were getting worse and my anemia (iron deficiency) did not improve even though my doctor said it should with the medication. Despite everything, I manage to have a part-time job that made me think in something else and reawaken my passion for architecture. I was full of pain and exhausted, but as long as I kept it under a few hours per day, I could work. With no hope of getting better than this, I decided that it was time to go back to my home, my boyfriend and the life I had built in Denmark.
To keep a typical 37-hours-per-week job in these conditions was tough. But I didn't have any other option. With all that had happened in the past 3 years since my graduation, I only reached to work for less than a year in total. So I was not in the place to make demands about reduced working hours – I just had to hold up to it. I also had to go to Portugal frequently, to pick up more Simponi, as the rheumatologist in Denmark (the 3rd already) kept saying that I wasn't bad enough to receive this type of medication. It was exhausting, everything. The working hours, the pain, the fight with the doctors. I got even more depressed. But I eventually got Simponi in Denmark and somehow, I managed to keep working on that year, and despite all the pain and limitations, I learned to find pleasure in other things in life, rather than traveling, having a successful carrier or starting a family, as all my friends were doing and which used to be my dreams too.
I was starting to learn how to live with my disease when my gastrointestinal problems worsened significantly. I started having stomach pain after eating, felt bloated all the time and started to have diarrhoeas that would last for several weeks and wouldn't go away even with diet and medication. When the diarrhoea would finally stop, I would start with periods of severe constipation. I had to avoid spicy foods, as I started to notice that these foods would provoke the diarrhoeas; but still, there wasn't enough. My iron deficiency was also getting worse and I began having low vitamin B12 as well and eventually needed some vitamin B12 injections. After months of pain and GI problems that the doctor couldn't solve, I decided to try a gluten-free diet, after talking with my physiotherapist. With the diet, I got definitely better but it didn't fully solve the problem. (I wasn't strict at all with it and didn't know that just a small contamination can be enough to keep the problem!) When I told my doctor that I was making a gluten-free diet, he told me to stop it, as there wasn't any reason to be doing it. I was told that this diet idea wasn't really good and it was provoking all these problems. But after a lot of requests, I was sent to a gastroenterologist.
Despite what the doctor said, I decided to keep my not so strict gluten-free diet, as it did improve my GI symptoms, although I became even less strict about it. Meanwhile, my back pain seemed to improve. I got all happy about it and assumed that the Simponi that I was taking for the past 8 months was finally starting to make an effect. I was far from good but had less pain, could stand the work better and, in good days I could even put my socks and shoes alone! (I had no suspicion on that time that it could be from the gluten-free diet, as the idea that food could give pain in my back was a completely abstract concept for me, as it is for most persons!) So life was starting to get a little less hard, finally! I just had to solve these annoying stomach pains and vitamin deficiencies and if I was lucky, Simponi would keep making me better.
After doing some testing, the gastroenterologist told me that everything was fine (seriously, again?), that I didn’t have any problems with gluten and I should stop with this diet. It was not that the diet had solved totally the problem, so I started to think that maybe they were right and eventually stopped with it. I was given some iron pills and psyllium husk to see if it would improve my symptoms. But the iron deficiency didn't improve and my constipation didn't get better. Plus, my back was worse again (still didn't make the connection with gluten) - I assumed it was from the winter cold (isn't that what everybody makes you think?) and renewed my hope in Simponi making me better.
From bad to worse
With the start of the New Year, so began my tragic fall. I started having long-lasting diarrhoeas one more time. My vitamin B12 levels were low again and, once more, I had to take several injections. My iron deficiency was also getting worse and I was starting to feel really weak. I also started having folate deficiency. What is more, within the period of Christmas vacation, the office where I was working closed down the department in Copenhagen and everybody was sent to the other office in Lyngby, a small town north of Copenhagen. So I had to commute every day for more than an hour in bus and train to get to work. With the pain in my back getting worse, the diarrhoea that would last for two consecutive months (!) and really low iron levels that made me weak and constantly dizzy, this was an unbearable task. So I started to look for new jobs while attempting to keep myself going through this crazy cycle every day. But I was feeling awful. I could barely eat because everything made the diarrhoea worse, so I started to lose weight again. I was so weak and my blood pressure was so low that I couldn't take all the traveling and felt sick. As the days passed, I started to feel worse and worse and could barely rise from the couch, and my iron deficiency became so severe that I needed an iron infusion. And although I got slightly better in the week after the infusion, I was still week and dizzy. But the doctor told it could take longer time for me to feel the effect, so I waited.
Meanwhile, I was so lucky to get a job closer to my home. With the smaller commuting time and the iron infusion that should start to take effect, I believed that everything would get better soon. However, the weeks were passing by and it didn’t - I wasn't getting better. I was still dizzy all the time and felt really weak. My poor condition mixed with the stress of a new job where making the dizziness too severe and I felt sick one more time. I stayed home the next weeks, recovering, waiting for my iron levels to get back to normal. But the weeks were passing and I was getting worse, not better. I was also starting to have constant tingling in my fingers and on parts of my face. I had horrible dizziness and brain fog and I was so weak that I could barely raise to go to the bathroom. I had to lay on the couch all day, convinced that I was dying. The doctors didn't know why I still felt so bad and what to do with me. I was on my own and I was scared.
One day, after coming from the doctor, I was so dizzy that I lost my balance and hit my head on the door of the car. I didn't feel worse from the fall, as I was very dizzy already, so I forgot all about it. A couple of days later though, I started to feel really bad. First I got really big headaches and then I started to see the dining table tilting to one side and the walls of my living room inclined. I knew something was terribly wrong with me and went to the hospital. On top of everything, I now also had a concussion. I needed to prolong my stay at home to recover, but the weeks passed by and I wasn't getting better, so I lost my job, letting us under great financial pressure.
I also still had diarrhoea, which by this time lasted for two full consecutive months already. I couldn't understand why the diarrhoea wouldn't stop. I was only eating chicken soup and toasted bread but it was still the same. And all the medicine for diarrhoea didn't work either. So I started thinking that maybe the problem was the bread, that after all, it could still be the gluten. I switched to gluten-free bread one more time, and the diarrhoeas finally stopped. I was finally able to eat and my diet went slowly back to normal. The tingling in my fingers and face also got better, although it would still come back sometimes. I went back to my doctor, who was now suspecting about Crohn's disease, since my blood tests for Celiac disease came out negative, and beg them to make further tests for Celiac disease. They didn't want to but ended up agreeing in doing an endoscopy, for which I had to wait a few months more. As I re-introduced normal foods into my diet, however, the diarrhoea came back. This time, though, it was pretty evident that the problem was in the yogurt, so I switched to lactose-free yogurt and butter (I had stopped drinking milk years ago because it gave me stomach pain), and the diarrhoea improved again.
But I was still weak and dizzy, despite the iron infusion. And I wasn't getting any help from the doctors. My gastroenterologist said that the problem was the concussion, even though I was already dizzy and weak before falling. The neurologist said the concussion wasn't bad enough to make me have all these symptoms, and would definitely be from my anemia. (?!) (Although the concussion was definitely not making things better, it can't explain my iron, vitamin B12, and folate deficiency!) I was left on my own one more time. Nothing seemed to help and I was getting really desperate. I had suffered for 4 years with a debilitating ankylosing spondylitis that I could barely cope with alone and now I was slowly languishing from either Crohn’s disease or Celiac disease, another autoimmune condition, and whose damage had made me fall and get a concussion! In an act of desperation, I went scouring the internet for answers. I refused to think that there was nothing that could be done to help me and take me out of the misery that my life had become.
To my surprise, I did find something on the internet, but not at all what I expected. I was hoping to find a better diagnose for my problem so that I could fix it and start recover again. But I kept on reading about autoimmune disease and diet. I couldn't really comprehend how food could help my back, but I figured that since I had all the gastrointestinal problems, a diet could be a good idea. So I ordered a book on the subject, “The immune system recovery plan” by Dr. Susan Blum and turned off the computer since my concussion was still giving me terrible headaches and the computer was really disturbing. I went back to the couch where I would spend my days languishing with my weakness from the vitamin deficiencies and the terrible symptoms of the concussion that wouldn't go away, this time with a small taste of hope. Although not at all enough to heal myself, as I would find out later, it was through this book that I began seeing the light in the end of the tunnel and started my long uphill battle back to health.
Stay tuned for the second part of my story, detailing my battle to recover my health in My story: epic fight for health.