I thank Susana Gutiérrez ( Flor de Abril ) for allowing me to share the beautiful and explicit text that you will see below and that reflects what it is like to live with fibromyalgia , narrated in the first person, by someone who suffers from it.
I am 52 years old.
I am quite an open person when it comes to physical and mental illness, but I can also be reserved, especially about my chronic pain and fatigue .
It is not because I do not want to share what is happening with me, but because I do not want people to think that I am a ” crybaby ” or that I seek attention “.
I am neither of those things. In fact, I am the opposite.
Many people know that I have FIBROMYALGIA . What they do not know is the reality of what I am dealing with.
They see a woman , hardworking, cheerful, positive but they do not realize how much pain I feel or how bad it is affecting me anxiety . I don’t think people really understand the intensity of my conditions .
I’ll admit that part of this is my fault, for showing only the good parts of my life on social media, but showing the not-so-good parts can sometimes feel like attention-seeking.
I don’t want attention, I want my conditions to stop being stigmatized . I don’t want pity, I want people to understand these diseases.
Here’s the reality of someone with fibromyalgia:
Pain
When you tell someone that you are hurting , they don’t really take it very seriously.
They usually think you have a typical headache or back pain. They don’t realize that their entire body experiences pain , stabbing, needles, numbness, or often a burning sensation.
They also don’t realize that the clothes you are wearing or the cloth chair you are sitting in could also be causing your pain .
The individuals with fibromyalgia have sensitivity to certain fabrics and materials. Our pain is often excruciating and can cause difficulties in everyday situations.
When I’m going through severe flare- ups, sometimes when I have to go to work it seems like no matter how early I get up, it takes me 30 minutes to an hour to get out of bed because my body is stiff, my hips are locked, and my hands are locked. sore.
Carrying a bag of groceries can make my hands and elbows tense, opening jars is sometimes impossible, housework can take everything away, and the list could go on and on.
Fatigue
The fatigue is another reason why it is so difficult to get out of bed.
I could have had the best sleep of my life, but it will feel like I don’t sleep.
For me, chronic fatigue is one of the most difficult symptoms .
There have been days when it is very tiring to travel long distances because everything causes me really bad fatigue .
I enjoy my job , but by noon I feel like I’ve been working hard, and all I want to do is go home and take a shower and lie on the bed trying to schedule anything with me after work .
I am too exhausted to do anything.
I may go out on the weekends and it’s not because it doesn’t matter how tired I am, but I really need to.
Brain Fog
The brain fog is something that scares me. Sometimes I completely forget a conversation I had yesterday. Either I have to pause a sentence halfway because he forgot what he was saying or stop a conversation entirely because he can’t think of the correct words to use.
This is the worst symptom of fibromyalgia . Feeling incompetent is incredibly frustrating and heartbreaking.
I often wonder if people are judging me for this.
Sometimes I can’t remember how to spell a word when I type. I check my text messages, emails, and social media posts multiple times before hitting the “send” button.
Read more on Living with fibromyalgia
The shame of brain fog causes me so much anxiety . I just want people to know that I can’t control the way my brain works sometimes.
Here are some other common things.
1. Mental illness that includes, but is not limited to, depression and anxiety .
2. Sensitive to temperature . Summers, and especially winters, are often unbearable.
3. Irritable bowel syndrome (IBS).
4. Night sweats / hot and cold flashes.
5. Insomnia .
6. Painful and irregular menstrual cycles.
7. Problems with balance .
8. Tinnitus (ringing in the ears).
9. Restless legs syndrome .
10. Rashes and skin disorders .
It is very common for people with fibromyalgia to have different symptoms . All symptoms are different for everyone, so it is difficult to explain to doctors what your symptoms are.
Chronic disease patients seem to know their disease more than professionals, and that can be difficult when it comes to medications and treatments .
We are all in this together, and we need support and understanding from the people and loved ones in our lives.
I hope this sheds some light on this terrible disease .
If you know someone living with fibromyalgia, give them a (gentle) hug and ask what you can do to help them .
Just being there to listen could mean the world!
Susana Gutiérrez (Flor de Abril) – Mexico, Ensenada Baja California
