Severe asthmatic cystic respiratory fibromyalgia distress disorder

Severe Asthmatic Cystic Respiratory Fibromyalgia Distress Disorder (SACRFDD) is NOT a real disease yet. It is the name my son and I call what he was diagnosed with. Our doctor calls it Condition X but we created a real name that describes it fully.
To anyone who is reading this: if you or someone you know has the majority or all of these symptoms, please show this article to a doctor.
Symptoms:
- Coughing
- Wheezing
- Sinus Infection (sometimes backing up to ears causing ear problems)
- Respiratory Infections (mostly colds)
- Shortness of Breath
- Laboured Breathing
- Chest Pain (while breathing pain is sharper)
- Feeling of Something Blocking Tubes in Lungs
- Feeling of Mucous Build-Up in Lungs (but when coughing, nothing comes up)
- Chest Heaviness and Pressure
- Coughing and Wheezing worsen at nighttime
- Inability to Do Activities without becoming Short of Breath (used to be fine doing said activities)
- Trouble Breathing in Very Hot and/or Very Cold Weather
- Lightheadedness/Dizziness (mostly after activities or breathing deeply for a period of time)
- Frequent Headaches without a fever
What is SACRFDD?
SACRFDD (or Condition X) is just a diagnosis my son's doctor made based on tests and treatments.
First, doctors thought my son just had a cold but since it stayed around so long, they tested him for asthma. Test showed he did not have asthma, but our doctor gave him an inhaler anyway. The inhaler seemed to help, but not to the point of satasfaction.
I still was not pleased with the diagnosis and switched to a different doctor who tested my son for cystic fibrosis. The tests showed he did not have CF. But the doctor said to try using a nebulizer and a broncidilator with my son because he knew something was wrong. I started my son on using the nebulizer and broncidilator along with his inhaler and his symptoms lessened, except for the lightheadedness/dizziness and the frequent headaches
I was starting to become more relieved but knew there was something more that was wrong. No doctor could really see his pain and discomfort, but I knew it was there.
I went to one last doctor and told him my son's story. He examined my son and told me to keep him on the inhaler, nebulizer, and broncidilator. He gave my son a diagnosis of Condition X and told him to sleep with oxygen tubes in his nose. After a month of doing this, his headaches and dizziness were completely gone.
It was like he was a whole different person. He was much happier and back to enjoying the activites he used to.
The doctor explained that the reason the pain and discomfort was not visible was because it was like fibromyalgia of the respiratory system. He also explained that the reason my son was suffering from headaches and such was because his brain was not getting enough oxygen, thus the fact that sleeping with the tubes helped. The inhaler, nebulizer, and broncidilator help with any problems in my son's lungs. Using them and the tubes changed his life.
I'm sure there are more people out there who fit the description of my son and have this "Condition X". We call it Severe Asthmatic Cystic Respiratory Fibromyalgia Distress Disorder because that name describes the disease much better than anything else.
Severe- because the disease could be severe and lead to death
Asthmatic- because the symptoms are those of asthma
Cystic- because the CF treatments of the nebulizer and broncidilaor help relieve symptoms
Respiratory- because that is the system effected
Fibromyalgia- because the pain and discomfort occuring in the patient's body resembles that of fibromyalgia
Distress- because the disease causes distress
Disorder- because it can not be cured but can be treated to an almost cure, making it worthy of being called a disorder
I hope this article is helpful to anyone.
In all care,
Marie Javares and her son Hunter
SOURCES:
Everything from this article comes from my knowledge and experiences, my son's experiences and knowledge, and the information our doctors provided.

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