The part of life with fibromyalgia that I have not talked about

I am a very open person when it comes to physical and mental illnesses, but I can also be very reserved, especially about my chronic pain and my 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 an “addict” or “attention seeker”. I am not one of those things. In fact, I’m the opposite.

Many people know that I have fibromyalgia. What they do not know is the reality of what I deal with. They see a young, positive and silly 25-year-old woman on the outside, but they do not realize how much pain I am suffering or how badly my anxiety is affecting me. I do not think that people really understand the intensity of my conditions. I admit that part of this is my fault, to show only the good parts of my life in social networks, but showing the not so good parts can sometimes result in a search for attention. I do not want attention, I want my conditions to stop being stigmatized. I do not want compassion, I want people to understand these diseases.

Here is the reality of someone with fibromyalgia:

1. pain

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When you tell someone that you are in pain, they do not take it very seriously. Usually, they think you have a typical headache or back pain. They do not realize that their whole body is experiencing pain, throbbing pain, needles, numbness or, often, a burning sensation. He also does not realize that the clothes he is wearing or the cloth chair he sits on may be causing him pain as well. People with fibromyalgia are sensitive to certain tissues and materials. Some of us (including myself) feel pain in their organs. I have had ovarian pain for years and did not know what it was until I was diagnosed with fibromyalgia.

Our pain is often unbearable and can cause difficulties in everyday situations. When I’m going through bad buds, sometimes I’m late for work. It seems that 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 blocked and my hands hurt. Carrying a basket from the grocery store can tighten my hands and elbows, sometimes it is impossible to open the jars, domestic chores can take away everything and the list could continue.

2. Fatigue

Speaking of being late for work, fatigue is another reason why it is so difficult to get out of bed. I could have had the best dream of my life, but it will feel like I have not slept at all. For me, chronic fatigue is one of the most difficult symptoms. There have been days when I’m nervous about driving long distances because the sun causes really serious fatigue. I work a desk job, but at noon, I feel like I’ve been doing heavy work, and all I want to do is go home and sit on the couch. And good luck trying to schedule something with me after work. I will be too tired to do something. If you can make her go out with you on weekdays, it’s probably because no matter how tired she is, I really need your company.

3. Brain fog

This is the last symptom I will touch. Brain fog is a bitch to say the least. Forgetting completely a conversation he had yesterday, having to pause in the middle of the sentence because he forgot what he was saying or stop a conversation altogether because he can not think of the right words to use.

This is the most shameful symptom of fibromyalgia. Feeling incompetent is incredibly frustrating and heartbreaking. I often wonder if people are judging me for this. Sometimes, I can not remember how to spell a word when I’m writing. I check my text messages, emails and social media posts several times before pressing the “send” or “send” button. The shame of brain fog causes me a lot of anxiety. I just want people to know that they can not control the way my brain works sometimes.

Here are some other common things that fibro warriors struggle with

1. Mental illnesses that include, among others, 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 hot 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 struggle with different symptoms than others. All the symptoms are different for each person, so it is difficult to explain to the doctors what their symptoms are. Patients with chronic diseases 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 the support and understanding of the people and loved ones in our lives.

I hope that this sheds some light on this terrible disease. If you know someone who lives with fibromyalgia, give him a hug (soft) and ask what you can do to help him. Just being there to listen could mean the world!


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