The part of life with fibromyalgia that I have not told you

By Tiana Ells    
, I am a fairly open person in regards to physical and mental illnesses, but I can also be very reserved, especially about my chronic pain and fatigue. It’s not because I do not want to share what happens to me, but because I do not want people to think I’m a “crybaby” or a “point-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 am doing. They see a positive, silly, young woman of 25 years abroad, but they do not realize how much pain I feel or how much fear affects me. I do not think that people really understand the intensity of my circumstances. I must admit that part of this is my fault, because I only show the best parts of my life in social networks, but showing the less good parts can sometimes seem like a search for attention. I do not want attention, I do not want my conditions to be stigmatized any longer. I do not want compassion, I want people to understand these diseases.
Here is the reality of someone with fibromyalgia:


1. Pain
When you tell someone you are suffering, 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 experiences pain, stitches, needles, numbness or, often, a burning sensation. They also do not realize that the clothes they wear or the cloth chair they are sitting on can also cause pain. People with fibromyalgia are sensitive to certain substances 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. If I suffer serious outbreaks, sometimes I arrive too late for my 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 stuck and my hands are aching. Carrying a basket of groceries can tighten my hands and elbows, opening pots is sometimes impossible, household chores can remove everything and the list can continue.

A woman in pain in bed.
2. Fatigue
When we talk about working late, 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 been asleep. 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 really causes bad fatigue. I work at a desk, but at noon I feel like I’ve worked a lot and all I want to do is go home and sit on the couch. And good luck if I want to plan something with me after work. I will be too exhausted to do anything. If you let it happen on weekdays, it’s probably because I, no matter how tired I am, really need your company.
3. Brain Mist
This is the last symptom I’m going to touch. Brain fog is to say the least bitch. Forget a conversation you had completely yesterday, to stop a half sentence because you had forgotten what you were saying or a conversation completely stopped because you could not think of the right words to use. This is the most embarrassing symptom of fibromyalgia. Feeling incompetent is incredibly frustrating and heartbreaking. I often wonder if people condemn me for this. Sometimes I can not remember how a word is written when I write. I have checked my text messages, emails and social media messages several times before pressing the “send” or “send” button. The shame of the brain fog causes me so much fear.

Here are some other common things that warriors of warriors benefit from:
1. Psychological disorders 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 sweating / 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. Eruptions and skin conditions.
It is very common for people with fibromyalgia to have different symptoms than others. All symptoms are different for everyone, so it is difficult to explain to doctors what their symptoms are. Patients with chronic diseases seem to know more about their disease than professionals, and that can be difficult when it comes to medications and treatments. We are all here together and we need support and understanding of the people and loved ones in our lives.
I hope this sheds some light on this terrible disease. If you know someone who lives with fibromyalgia, give him a hug (not Jewish) and ask him what you can do to help him. Just to listen, the world could mean!

 

 

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