Chronic Fatigue Syndrome, Chronic Pain, Depression, Fibromyalgia, Fibromyalgia Blog, Health, Spoonie

I Don’t Look Sick, But I Am, by Luciana Cardoso

Fibromyalgia warrior, Luciana Cardoso, suffers from Fibromyalgia. Luciana has added her face and story to Faces & Stories of Fibromyalgia. I am so grateful that Luciana has shared this, as each story told raises awareness and helps fellow sufferers.

You can connect with Luciana by following her on Instagram.

I Don't Look Sick, But I Am by Luciana Cardoso
Luciana Cardoso

I’m 20 years old and was diagnosed with Fibromyalgia when I was 18 years old.

The pain started as simple back pain while I was in Australia for my school exchange. My host parents took me to a doctor, and he diagnosed me for the second time with scoliosis, which I have had since I was 12. The pain wouldn’t go away but it was manageable. I could handle it after resting for a couple of hours and thereafter I was able to forget about it for the rest of the day, every day for 5 months.

I came back in July and the next day I left for a trip to Spain for the Way of St. James with my parents. The plane was late, we had to change flights, and we had to run to arrive at our flight. I had a bunch of things in my hands, we were running, and the floor was wet, so I slipped. As I had millions of things in my hands, I couldn’t put the weight of the fall on them, so all the blow was on my back, from the coccyx to the cervical. I couldn’t breathe for 2 minutes because of the trauma and everything hurt so badly. After 10 minutes I was able to stand up and we had to keep moving to reach our flight. Everything felt awful: sitting, standing up, resting, and breathing. It was as if I felt all the air go out of my lungs.

The Way of St. James follows the routes of Northern Spain and is about 200 km long. We would walk in 8 days for 14 hours a day, give or take. With the pain, it made it so hard to do but my doctor prescribed ketorolac to manage the pain. I was able to do it but when I came back to Mexico City, I had to go to the orthopedist. I had no idea it could be Fibromyalgia, I just thought all the pain came from the fall. He sent me to 10 physiotherapy sessions, but the pain would only get worse. He decided that it was a good idea for me to attend another ten sessions, but I couldn’t manage the pain anymore, so he asked me for an MRI, which only showed that all of my back and neck was contracted. He wasn’t sure why the physiotherapy wasn’t working, but he could only send me anti-inflammatories and muscle relaxants.

One month later and the pain wouldn’t go away so I went to an Internist. After looking at my scans and asking about my symptoms, which were then back and neck muscle and bone pain, headaches, fatigue, and pain sensitivity, he diagnosed me in September 2018, with Fibromyalgia. He prescribed 75mg of pregabalin and diclofenac, and told me I had to wait for about one month for them to start working. It didn’t work, but besides the pain, I wasn’t starting to feel desperate. I was just trying to manage the pain.

I started my last high school semester in an International Baccalaureate (IB) programme, which was as stressful as it could be. I had about 4 hours of homework each day, plus 8 hours of school, and the pain started to get worse and worse. It was just stronger and harder to manage. I spoke with my parents and told them that I wanted to go back to therapy and start college in January 2020, instead of August 2019 as I knew I was starting to reach my stress limit which worsened the pain. They told me it was fine, but after 3 weeks the college offered me the possibility of a scholarship, which my parents told me I had to take because they wouldn’t offer it again. Besides doing a total of 7 4000-word IB essays and 14 exams of the past 3 years of high school, I also had to prepare for the college exam and interview all in the same month. They accepted me in Tecnológico de Monterrey in medicine and I was able to pass all my exams with good grades, but they told me they wouldn’t give me the scholarship. My parents told me that I had to start college even without the scholarship. That was when things started to get even harder.

I didn’t even know that someone could be in such physical and mental pain. I started school, and as you may know, medicine is not an easy career, everything was exhausting. I couldn’t and didn’t want to get up in the morning. Putting my clothes on would hurt more and more every day. The pain started to get worse, now it wasn’t only in the back and neck, it was also in my hands, abdomen, knees, foot, skull, hips, legs, and arms. The pain was everywhere, and no one understood it. I just looked tired, they would say I wasn’t in that amount of pain, or if one day I didn’t complain, they would say that it wasn’t hurting every single day. Now it wasn’t only in the muscles and bones, but in the joints too. Emotionally it started getting worse. I was tired all the time, I was losing all my focus on school, I had a migraine every day, and I was starting to forget things as my memory got worse each day.

The career was only pressuring me because I could see how everything was getting lost. From my excitement to go out with my friends, to my interest in different activities that I used to like in school. I had panic attacks twice a week, it was irrelevant if I slept 2 or 15 hours, or even none because I would be as tired every day. The internist kept changing meds from pregabalin, amitriptyline, quetiapine, duloxetine, paracetamol, ibuprofen, naproxen sodium, tramadol and even cannabidiol, to millions of blood tests to analyse and discard lupus, arthritis, hypothyroidism, chronic fatigue syndrome, temporomandibular disorder, deficiencies of magnesium, iron, vitamin B, vitamin D, tests such as PET scans, MRIs, and tried everything from physiotherapies, osteopathy, yoga, meditations, and acupuncture.

NOTHING WORKED!

I wasn’t responding to any treatment, I had 5 urinary tract infections, 2 gastrointestinal infections, and 4 throat infections within a year. I also had alterations in bladder emptying, and they had to put a tube in because I was unable to pee for 2 weeks. They made millions of studies more and nothing was conclusive. On paper, I was the healthiest person ever. I also constantly had tremors in the hands and legs, the contractures would not disappear. I lost 10 kg in one year without changing my diet and 8 more in 4 months.

In September I went to a Rheumatologist specializing in Fibromyalgia. He prescribed pregabalin in higher doses and told me to go to cognitive behavioral therapy. None of the past treatments were working and in February 2020 I went back to my childhood psychologist, who sent me to a psychiatrist. She diagnosed me with severe depression and anxiety. She prescribed 30 mg fluoxetine, 5 drops of clonazepam, 150 mg of pregabalin, 6 mg of melatonin, and tramadol. I was sleeping 4 hours a day, and each time it took me about 3 hours to fall asleep. I would come back from school and try to sleep for 3 hours more. I had no appetite, 4 panic attacks per week, I was falling asleep in each one of my classes. The pain was unbearable. No medication was working, no treatment, no therapy, nothing worked!

I was frustrated, fed up, tired, stressed, and depressed, I wanted to spend all day in my bed. On the 21st of May I took 50 pills because I didn’t want to feel anymore, 40 minutes later I obviously started to feel awful and I reached for my academic adviser, who knew all about my medical information. She contacted my parents and they immediately took me to the hospital. Each minute that passed by, I felt how my life was literally slipping out of my hands, every breath I took was harder and harder. We reached the emergency room and they had me in intermediate therapy for 5 days. The day I arrived the doctors were worried that I would stop breathing at any moment. I was hallucinating. I had to have a gastric lavage, so they put a tube through my nose into to my stomach. At that time, I was already unconscious and woke up 24 hours later. I remained for in hospital for 5 days. I had an endoscopy because after all the pills I had ulcers all through my esophagus and stomach. When I came out of the hospital they told me for the third time in 4 years that I have chronic gastritis and colitis, and sent me to do dysautonomia tests, as my blood pressure, although between the ranges, was very low and that could also be causing the fatigue and migraines.

In that moment, I started realizing the only treatment that would work for me was going to be a change in the way I viewed my condition and the support of my closest friends. I realized how many people really supported and cared for me, how many people tried to understand me. The school was super supportive and told me to focus on my wellbeing for a couple of weeks instead of school. They checked up on me every day and tried to help me in every way they could.

I’ve figured out that Fibromyalgia is a condition that I will forever live with, and even though no medication or therapy has worked for me, the people around me have been the ones that have actually helped. Once you let people see how you really feel, you’ll find out who cares and loves you. At 18 years old I never thought I would be told that I will be in severe pain for the rest of my life, but that’s what it is, and I can’t change it. Perhaps one day there will be a treatment that helps me. Of course, it could be worse, but for me the pain I have every day is the worst I’ve ever experienced.

You eventually learn how to distract yourself at times of the day. Chronic illness is permanent and cannot be eased with simple things. You must just understand that it’s okay to take a break once in a while, the to-do list will still be there tomorrow, and other people have to understand that you do not need to look sick in order to actually be sick. Some people are simply better at hiding it and being able to walk without showing the pain. This eventually turns into a skill. People must understand that you are not looking for sympathy, asking for judgement or seeking attention, we just need relief occasionally. If only people could see what happens behind the scenes, they would acknowledge chronic illnesses.

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