Welcome to Focus On The Fight, a series of interviews that will be posted weekly, focusing on a blogger/advocate, their health and their advocacy work.
This week we meet Melissa, and we will highlight: Fibromyalgia .
Before we dive into the heavy stuff, please tell us all a little about yourself outside of your health! About your family or your hobbies !!
I started to grow my own food as a hobby. I enjoy playing with my dog Toby, watching TV and reading science related books.
What Chronic Illness (en) have you been diagnosed with? Which one will you focus on today? Fibromyalgia
Let’s take just a second to look at Fibromyalgia before we jump into Melissa’s Interview.
What is Fibromyalgia
Fibromyalgia is a condition that is very common these days. In fact it is so common that there are more that 3 million cases seen every year in the US. According to the American College of Rheumatology Fibromyalgia is a neurological health issues that causes widespread pain and tenderness, and is most often seen in women. The pain and tenderness often come and go and may move around the body. Many who fibromyalgia also have extreme fatigue and may have trouble sleeping. This condition most often starts in middle adulthood, but can occur in teen years or in older age. Those who have any kind of rheumatic condition like osteoporosis, lupus or RA are at a higher risk for developing Fibromyalgia.
How is Fibromyalgia Diagnosed?
In order to diagnose Fibromyalgia there is no blood test or imaging study that can be done. Instead a physical exam will be required. To be diagnosed with Fibromyalgia a person must have a required number of tender points, must wake feeling unrefreshed, and report cognitive issues like foggyness! They must also report that the symptoms have lasted at least three months at a consistent level. And report a number of other general symptoms. Below you will see general symptoms of Fibromyalgia.
Symptoms of Fibromyalgia
-Pain and tender points
-Concentration and memory problems, known as “fibro fog”
-Anxiety or depression
-Numbness, and tingling in hands, arms, feet, and legs
-Irritable bowel syndrome
-Problems with peeing
-Painful menstrual cramps
Now Let’s Jump Into The Interview.
Please share briefly what led you to the decision to become a blogger who focuses on chronic illness and also patient advocate if that applies to you.
My chronic pain journey started at 14 yrs old and I would like to help others to avoid similar struggles and be able to help them along the way.
Diagnosing a Chronic Illness can sadly be a VERY long process! For you, how long did it take for an official diagnosis? And did you have to act your own advocate to get a doctor to take what was going on in your life seriously and look for a diagnosis?
They did not know what was going on with me so I got the fibromyalgia diagnosis. I have a laundry list of diagnosis. Even on my charts it says “something autoimmune” but nothing is conclusive.
Chronic illness is just that, chronic. Please share with us how your illness (s) impacts your daily life!
It took its toll for a very long time. I was bed bound, struggling with mental health, had trouble with school, could not go to work and lost relationships. Now that I’m stronger there is still the stress of it all but advocacy helps.
Being chronically ill can take a toll on all kinds of relationships. Have you noticed this in your life? If so how has your health impacted the relationships in your life?
It’s had an awful effect. My family struggled to understand, thankfully that has improved. I’ve lost a lot of friends.
Sadly, living with chronic illness can be live changing. Have you found that your life has changed significantly over the years of living with your condition? If so, in what ways has it changed?
I never thought that I would feel better. It took a devastating blow. I was so young and ambitious early on, it’s hard to think about the course I would have had. I’m just glad I can put my energy towards advocacy and helping others in the community.
All diseases have different kinds of flare ups, and every one will exhibit different signs of flare ups. For you what signs do you know to watch when a flare is coming your way?
Lots of pain in the upper part of my shoulders, more fatigued, soreness, stomach issues.
What do you do to treat your flares? Or to make your bad days better?
I make sure I’m doing things that help with my care. Taking more breaks, proper nutrition, breathing exercises.
Being diagnosed with a chronic illness can be very overwhelming. If you could give one piece of advice to someone who is going through the diagnosis process, or is newly diagnosed, what would it be?
You have the power to change your health. Do not give that power up to anyone else as scary as that sounds. You can gather information from providers, but ultimately you have the choice to decide.
Living with a chronic condition is hard, it just is! Especially because for the most part there are no outward symptoms that can be seen by others. If you could share one thing with the public about living with a chronic illness what would you want them to know?
Everyone is living with something. Please show compassion and take a moment to think before reacting.
Where You Can Follow Melissa