“My life was that of a 47-year-old single, who went out from Thursday to Sunday with childhood friends who were still single or separated. I went to clubs, to cabins, walked in high heels all the time. always happy to help everyone. I was already a makeup teacher. It was the life of my dreams. I didn’t feel a thing about age until fibromyalgia came along.
The pain came a year later, when I was 48. I traveled with some friends at Carnival, in February 2018. I was in a lot of pain and I thought it was from PMS. I was taking longer to get things done, I was the last person in the group to take a shower. When I went downstairs, my friends joked that I was late and I was rude to one of them. ‘Look, I have pain all over my arm, I can’t stand it, you don’t know how my life is going,’ he said, out of the blue. I didn’t have that kind of reaction. When I look back today, I think it must have been fibromyalgia. The disease worsens in PMS.
Then, in April, I was sleeping and I thought they had broken into my house, that they were hitting me with a stick and razors. I woke up scared, my heart was pounding, I looked around and saw nothing or anyone. The pain didn’t go away. The feeling I had was similar to the scene where they put the blades in the arms and legs of Wolverine, a Marvel character. Fibromyalgia is exactly that: it cuts you from the bone to the flesh and it throbs. Besides, it always seems like they’re hitting you. I woke up very scared, I didn’t know what to do. I sat up in bed and started to cry. I thought: ‘What is this nightmare?’
The other day I went to the doctor, who gave me some injections for the pain and referred me to rheumatology. I scheduled the exams, although they were not super-conclusive, and I consulted with two rheumatologists. The oldest one came with a lot of tests, while the youngest, who was about 35 years old, has already started treatment for fibromyalgia.
I started taking an antidepressant, which is also good for pain. Even though I’m not in a depressed state, it’s the treatment that exists today. I was taking another very strong medicine for my stomach and one more to protect it. I couldn’t sleep at night, so I had to take another medicine to get to sleep. When you have fibromyalgia, it feels like lightning passes through your body when you lie in bed. You’re frying there. Finally there was the anti-inflammatory. It improved little and it all left me in a groggy state.
I still didn’t feel good. One day, I was coming home from school where I taught. I was a block away, on foot, and suddenly I forgot the way. I sat. I stayed calm. Thinking, good Aquarian that I am, and reasoning that I knew my way back, that I would remember. After a while I remembered and returned home.
I had lost the ability to drive. Fibromyalgia takes some of the strength out of my legs and I couldn’t squeeze the car’s clutch. I practically didn’t drive anymore. I depended on my 72-year-old mother, who helped me by getting me from place to place, or on transportation apps.
After a year or so, I said: ‘I’m going to stop everything’. The pain and sleep remedies I kept for a while. The others stopped taking it or took it from time to time. I saw that traditional medications were not giving me quality of life.
After a year of this, I started to get very tired, I lost expectations. Putting on a chain or an earring hurt. Shoes too, I could only walk in slippers. Shoes hurt on the sole of the foot and between the toes; the pain goes up to the calves and in the front of the femur (in the posterior part I had no pain), until it comes to the fingers.
I got gross motor coordination and started dropping things. Suddenly things start flying out of my hand. I didn’t even pick up a baby, for example, because I was afraid to let it fall. To wash a pan, you had to put it at the bottom of the sink and scrub. Taking a shower was horrible, because I had already slept badly and the pain wouldn’t stop. Washing your hair hurts your scalp, fingers and arms.
People don’t want to listen. People ask if you are in pain and the answer is ‘I’m having a good day’. Until the time you start to stop going out or making appointments. You go to a wonderful wedding party and, if you were the last to leave before, now you are one of the first to leave because you are starting to not stand people anymore.
People still have a lot of disbelief about fibromyalgia, they can’t understand that someone supports this pain. I didn’t complain about going to work and stood up for eight hours. I went to work and it was over. In this situation, the person looks at you and says, ‘Are you in pain? But look at your face all made up’. I wore makeup to work because I work with it, but it got to the point where I couldn’t even put on false eyelashes.
And then people say it’s lazy people’s disease, as if we wanted to use it to retire. But of course it crosses your mind! The person cannot get treatment, they live with pain all the time. A person who needs to work with a high concentration load loses it. There are worse days and bad days, no good days.
I usually travel abroad and I once visited the Epcot Center, one of the Walt Disney World parks in Florida, and had to rent one of those motorized carts because I couldn’t walk. It was a very cold day and the sole of my foot hurt even with sneakers. It’s a level of pain that hinders your leisure time too. And people say: ‘Wow, but how can you not be happy in a place like this?’ Pain does not choose time or place.
Treatment with medical cannabis
I had a lot of nocturnal crises, at least three or four a month, and after one of them I wrote on my Facebook: ‘You can’t imagine what it’s like to wake up at night with a scare because you think someone’s hitting you’. And Natalia Cerri, a former student of mine who is a doctor specializing in the treatment of chronic diseases, commented in the post that she was successfully treating patients with medical cannabis.
It still took two months for me to be able to schedule an appointment. I knew Natalia’s family, but we hadn’t seen each other for over 20 years. I had already heard about the treatment, except that I never tried any drugs. I can’t even smell like marijuana or cigarettes. Obviously I had a resistance and a prejudice, that’s why I read about it and understand. Then you start to see that it’s not something that’s going to get you addicted or hurt you.
I trusted Natalia. I faced it because I had nothing else to do: it was either that or it was waking up with no prospect of not having pain. When I went, she answered my doubts and stated that the medication was approved by Anvisa, which was super reliable. She prescribed me a tablet of CBD and some THC to take during the day and, later, an oil. At first I tasted the oil as if it were the smell of marijuana burning, but then I got used to it, the doctor told me to mix it in the yogurt.
The only reaction I had was a little sleep for four days after taking the medicine. At the same time, I started feeling super energy on the second day. I even remember that I needed to sort things out on my cell phone at the mall and I walked all over the place, something I didn’t do, and with an energy as if I was ready for anything. I was happy, playing with people. It was recognizing me as I was before the pain.
I had some relief, especially on the soles of my feet. The pain went away, but I started to feel an internal tingling and it was kind of like that. It was magical. That day I remember getting home, going to bed, getting some sleep. The other day, I even restored a piece of furniture. I did a crazy cleaning too, because when you have fibromyalgia you clean, but you can’t do a heavy cleaning without taking a couple of days.
Fifteen to twenty days after starting treatment, the pain disappeared. I realized that I slept at night. Today I don’t take any more medication except these two. It was like I was happy again. After 2 months of treatment, I went back to wearing heels, my necklaces big. I comb and move my hair several times. I even went shopping for clothes because before I used only comfortable pieces. I started taking walks because before the exercise it hurt so much that I even cried while trying to take spinning classes.
Another thing that helped me not give up and get thrown into bed was my volunteering doing makeup and doing beauty procedures on women with cancer, something I’ve been doing for 10 years.
I saw women with bone cancer or other very painful cancers and they don’t give up. They have pain too, it shouldn’t be less pain than I had, and they don’t have the perspective of time. Yet they enjoy each day regardless of what is happening.
I see that people with fibromyalgia give up on making plans, and it’s something I’ve never given up on because I got this lesson from them. So it was a giant payback for what I gave. They returned to me much more because I was able to get on with life thanks to what they taught me. It gave me strength.
Even in the midst of these problems and thanks to the strength these women give me to plan for the future, I had the courage to expand my business, which deals with women’s self-esteem. So, even with all this pain, I knew I had to make plans. It was clear in my head that because I wasn’t born with this pain, I was going to find a way to end it.
lesson for people
People should give this new medication a try. I see that they are curious, but they don’t want to make the investment. Before, I spent R$400 a month on five medications and now I spend R$350 on two and I don’t have pain. People don’t want to open their minds.
I want people to have the courage to try the new and I also want the government to stop this madness of saying that a treatment with cannabis costs R$ 70 thousand per year for a patient in the SUS. We know this is not true. I spend R$3,000 per year myself. Medicinal planting must be allowed. None of this is being done out of pure prejudice. People who are against it ask how this would be enforced, but they do not even enforce illegal marijuana.
After I started the treatment with medical cannabis, I came back to believe that I will live my 50 years happy, that I have a lot to do. With fibromyalgia, there are days when you lose strength, but there are others that wake up and say: ‘God, why?’
It is not easy to live with this disease. I’ve seen marriages fall apart because of this. I see a lot of people saying they don’t want to live, but I’ve regained energy and a productive life after cannabis. I still have my will to love, to communicate, my joy. I wake up singing every day. It’s all worth it! I’m almost 52 years old with the soul of 30 and that’s what’s cool about life: when you can keep your spirit young to face the world. I think now I’m shining again.”