Just like the above photo my journey to diagnosis was long and full of ups and downs. Like many patients, it took me a long time, 10 years to be exact, to receive the official diagnosis. My Fibromyalgia diagnosis story is probably very similar to every other Fibro Warrior. However, I thought I should share it for reference and validity to this blog.
The Beginning
I remember the very first time I had a symptom and being scared out of my mind. 2 months after I had a full hysterectomy and I was cleared to exercise. I lived in the country and had started a couch to 5K exercise program. I was walking on a rocky road and hadn’t gone that far, and my feet started going numb. As I am walking, I was having the pins and needles sensation you have from sitting on your feet for too long. They felt as if they were falling asleep as I was walking. My calves were getting very tight and heavy. (I have since learned to describe this feeling as concrete being poured into my legs.) Being far from my house, I had to sit down on the side of the road. After I rested for a while it went away and I got up and went home. As I neared my house it started again.
I immediately did a google search and discovered my shoes were too tight or too small. That week I bought new expensive larger tennis shoes and guess what …. my feet and legs did the same thing every time I tried to walk. Of course, my mind went everywhere; did they do something wrong during my surgery, do I have a spinal injury, do I need new shoes again, am I that out of shape, etc.
First Doctor Appointment for a Fibromyalgia Diagnosis
I called my gynecologist that had just preformed my surgery. She is an amazing person and advocate for women’s health. She had me immediately come in because I had been a medical problem leading up to the surgery, so she was also concerned. Tests among more tests along with scans and x-rays and there were only two discoveries; Vitamin D deficiency and I had a liver enzyme that was showing strange numbers. Neither of which explained my leg situation. Months went by treating those two along with the surgically induced menopause. I started swimming and felt great with no symptoms.
Two Years Later
I started walking again after I moved into a neighborhood. Since I wasn’t living in the country any longer, so I didn’t have that rocky road to blame if my feet gave me problems. I seemed to be fine while walking and felt a sense of elation. I would walk the dogs every night. However, I started to notice my right arm would have the pins and needles sensation periodically. I noticed I was exhausted all the time. And not the kind of exhausted from staying out all night partying, the kind of exhausted where you feel like an 18-wheeler has run over you. My muscles were hurting so I started having regular massages.
On a Sunday afternoon while doing laundry in my house, I was walking from the master bedroom to the laundry room and IT happened again. My feet started doing the numb thing again. In my house! I was heartbroken and started putting all these things together. Of course, I went back to that amazing doctor who ended up referring me to an Internist who referred me to a Cardiologist who referred me to a Neurologist who referred me to a Rheumatologist who referred me to a Therapist and so on. I had tons of medications, I had a spinal tap (that leaked and left me flat for 2 weeks straight), I had MRIs, I had nerve testing, pretty much you name it, I had it done! And guess what they all said…
You are Healthy. Your tests came back NEGATIVE.
When you are in constant pain and exhaustion and you are spending thousands of hours and dollars at every doctor under the sun to be told “You are healthy. You passed every test with flying colors. Everything came back as we had hoped” it is the worst feeling in the world.
Am I Insane?
You start to doubt yourself after hearing all the doctors say you are healthy. Your family starts to think you are a hypochondriac and you realize the differences in yourself:
Beginning to retreat from the world.
Sitting in front of the TV more and more.
Not engaging with my family and friends.
Staying behind when the family would go on weekend trips.
I was not living my life! I was doing my own research and determined that I should have received a Fibromyalgia diagnosis a long time ago.
Frustration
Six months into this process I was done. I stopped every medicine cold turkey (DO NOT do this!), I stopped seeing every doctor, and I gave up on the medical world. Obviously, I had some side effects from stopping the medications without tapering off but over time I started to feel better. I realized I was beginning to live my life again.
Stress
My life has always been stressful. It especially was during the early years. I owned a business with fifty employees to worry about, my best friend and mother-in-law had stage 4 cancer and I was her caretaker, I was a mother and a wife, and we were in denial about our debt. About a year after I had stopped everything my husband came home and announced that he was leaving my daughter and I. More stress! Three months later, I had sold everything, and my daughter and I were living in an apartment that had one of those man-made lakes. I realized I was walking 8 miles a day, was stress free, was happy, pain free and was walking! I felt elation that maybe this condition was behind me.
Over the next 4 years I built a new house, found a new job that I loved, and my daughter was doing well in high school. With my new job, the stress was increasing every year. The first signs that IT was back were the pins and needles were back in my right arm. I noticed I was more tired than before, but I also wasn’t exercising or taking care of myself and working crazy hours. Then I went to Boston on a work trip. Walking from the gate to baggage claim, I had to sit down IT was back in my legs. IT was back with a vengeance and has progressively gotten worse since but so has my stress. I have now been officially diagnosed by two different doctors.
IT officially has a name: Fibromyalgia.
That is how I received a Fibromyalgia diagnosis!
Please remember that this is my Fibromyalgia diagnosis story and my story alone. I am not in the medical field and I encourage you to seek help to make your decisions.
