As most of you know, I’ve had quite the health journey in my life. After years of not knowing what I have, of desperation and not knowing how to cope anymore, I can finally see some light at the end of the tunnel. For all of those who asked, here is my story of getting diagnosed with Fibromyalgia.
Fibromyalgia is a condition that gives you widespread chronic pain.
If you ask me, I will tell you I cannot remember not having pain somewhere on my body. My mother recently told me I started complaining of pain in my legs when I was around 4 or 5. She took me to the doctor, who said I had nothing, after making some tests. She even took me to a doctor specialized in feet, to see if maybe there was something with my feet or posture and everything was ok.
The thing about the health system in Portugal is that you are assigned a family doctor and you’re either lucky and find someone who takes you seriously or you get someone who doesn’t give a damn. Unfortunately I got a row of doctors who were either too busy to care or just plain didn’t care about my complaints. So eventually, I stopped talking about it. After all, it was all in my head, right? I got used to hearing that I was lazy for not wanting to do much or for sitting on the couch or being in my room all the time. My Dad used to joke about how I’d get square eyes from watching so much TV. Truth is, most of the time I wasn’t even watching…I was just sitting there, trying not to hurt.
I was 21 the first time someone told me about fibromyalgia. It was a chiropractor who dated a friend of my ex boyfriend. We started talking and she said, from what I was describing, she thought it could be fibro and I should look into it. I talked to my doctor at the time, who did not take me seriously, once again. Going to a private doctor and paying 100€ per consultation was not an option at the time. Eventually I found ways to cope with it, found pain-killers that helped a lot and I kept living…or surviving.
Last year things got worse. Fibro is a lot more than just pain. It affects your thinking, your coordination and also your digestive track. In my particular case, I developed IBS without knowing it. I’ve probably been living with it for longer than I think, since I’ve always had a lot of problems with my stomach and intestines, even though they did get worse in the last few years. When the IBS got worse, my body stopped absorbing vitamins – they’re absorbed by the intestine, if it is not working well, you might not absorb your vitamins and minerals. I started having severe problems with understanding people. A doctor I went to in Linz, after making a ton of tests, told me I had Chronic Fatigue Syndrome. I was always against it, as CFS has no reason for the fatigue and my fatigue had a reason – me not being able to sleep due to pain and being under-nourished. I found a doctor “specialized” in it, who told me what I had was Myalgic Encephalomyelitis, which is the correct medical name for Chronic Fatigue Syndrome. But I still felt something wasn’t right.
She put me on vitamin infusions and those helped A LOT. But the pain persisted. The digestive track problems persisted. Yet the doctor always put it on ME. Finally at the beginning of this year I decided to go to a Rheumatologist, after spending an afternoon in the hospital in agonizing pain with my amazing friend Saskia. The doctor immediately said he does not believe in her diagnosis and on I went to do some more tests. On our last consultation he was very honest and very blunt. He basically told me the good news is that I have nothing on the rheumatic side. He also told me, based on all the tests I’ve done and all the things I told him, that he believes I have fibro. I decided to change GP’s and my very good friend Maria managed to get me an appointment with her doctor, who is very good. She told me to try out a medicine I’d been prescribed by the doctor in the ER, specific for fibromyalgia and see if it helped. And the thing is….it did!
A few days before my birthday I went back to see her. She is sure I have fibromyalgia. She also told me that I will have worse times and better times. But that now we know what it is and can control it the best we can. I must say I did not really know how to feel…I felt numb and relieved at the same time. Finally, after so many years I finally have an answer. And I feel mad, mad that no doctor in Portugal took me serious enough. Mad that I had to suffer for so long, that I was called lazy for so long, that I was so misunderstood….but I try not to dwell on it.
Having fibromyalgia sucks. It hurts. It’s always there, like a reminder. And if I happen to have a good, pain-free day and do too much, I pay for it the next day. It’s a learning process and I am taking baby steps, but I refuse to stop learning, refuse to stop trying and refuse to let this disease, this condition, illness or whatever you want to call it, control my life. I have good days and I have days when I want this all to stop. But for now the good days have been better than the bad ones. Working helps me a lot, because it gives me a purpose, a reason to get up every day. Probably also helps that I like my job, right?
If you guys want me to write more posts like these, let me know. And if you know someone who suffers from fibro or you suffer from it, reach out to me. We can support each other and help each other get through this everyday.