I’ve been living in my mind awhile on this subject. How to clearly describe to you what the fibro bucket is, specifically what mine is. The fact of the matter is I’m not a medical professional, I can’t prescribe care I can only share with you my experiences, challenges and what I have done in response. As I dive into this subject please remember that I am not a doctor and I am not laying down what you should do and how you should diagnose, I’m simply sharing what I have done and the conclusions I have come to.
It was a night in 2016 after youth group that I went to step off the curb and noticed that the simple action of lifting my foot and stepping down was incredibly difficult. The next day I had to use my cane, I thought I retired it but well it was time for a comeback. I already had an appointment with a pain management doctor to discuss the treatment plan for the herniated discs in my neck, naturally I figured my odd symptom was attributable to the discs. As the days went by I noticed that I couldn’t open things with my left hand without difficulty, I’m a strange breed, I write with my right but do other tasks with my left. It was weird, I kept dropping the curling iron and burning myself, I was having difficulty buttoning my shirts. Then the sharp stabbing pains started. The worst was when they hit as I was driving, I would cry out and just grin and bear it to avoid an accident. Then one night my hands were on fire, I kid you not fire, well they felt like it at least. The next morning my daughter had to help me get out of the car and walk to our church service, I was barely able to lift my feet, I was a sight, it was a very humbling experience.
The day finally came I was going to see the pain management specialist, these crazy symptoms must be related to the herniated discs in my neck. He did not think so. He was perplexed with all of my symptoms, they lined up with several different conditions, Multiple Sclerosis, Muscular Dystrophy and various auto immune disorders to name a few. He also began tapping and pressing in different places on my body, my God they hurt and I found myself incredibly fatigued afterwards. After what felt like torture he said that I more than likely had Fibromyalgia and potentially something else but he wasn’t sure which one, if nothing showed he would diagnose me with Fibromyalgia and presume that these other symptoms were likely stress induced. If you missed it by chance there was literally no talk of my herniated discs, the only talk was that there was no relation. My neck, that’s a talk for another day, today eventually will lead to the bucket, my fibro bucket.
Have you ever heard of Flylady.net? Well it’s this great online resource that helps you organize your life and keep your home running smoothly. One helpful activity assists you when you’re cleaning out a closet. You get three containers and you designate one for trash, one for donations, and one for things are keeping. For my purposes they will be buckets. One for conditions it was found I didn’t have, one for diagnoses, and one for all the head scratchers. Can you guess where the head scratchers went? My fibro bucket.
I could give you the story of all the doctors I went to and the tests that were run, I could share the highs the lows, I could share the doctors’ bafflement with the lack of direction this round of testing gave me, but that’s not the direction I’m going today. Did I have Multiple Sclerosis? No. Muscular Dystrophy? No. Was there nerve damage from the herniated discs or anything else for that matter? No and No. Were there any autoimmune disorders? No…
Amazingly all these tests were done in a month. I have my amazing health coverage to thank for that and wonderful people at each clinic that worked tirelessly to take care of me. The prayers of family and friends and sometimes extra money to help cover the higher copays for these tests. To which I am thankful to each and every person that I encountered on this path.
Now the moment you’ve been waiting for, my buckets. For the sake of completeness I will include my new diagnoses and previously confirmed as well. Take note that the scary symptoms I was having had no real diagnosis, so somehow they were attributable to my fibromyalgia.
|Diagnoses Bucket||My Fibro Bucket|
Anxiety & Depression
Vitamin D Deficiency
Irritable Bowel Syndrome (IBS)
Multiple Chemical Sensitivity (MCS)
|Leg & Hand weakness
Numbness & tingling
Did you notice that my fibro bucket isn’t terribly long, even though it is a bit scary? You are getting the revised version. I’ve learned a lot these past few years and was able to identify that some of my crazy symptoms were already categorized in the MCS diagnosis. Also take note that the list of diagnoses is cumulative to date not just at the point in time I was diagnosed with fibromyalgia. Another item to consider is that these conditions often come hand in hand with fibromyalgia.
What I have found is that the list on the right lengthens and shortens regularly until I find a connection and when I see my doctor for a regular checkup it often times gets confirmed. What I have never gotten confirmation on is those items currently listed on the right. There has been no other way to diagnose them but they still happen, not as often due to various lifestyle changes but they still happen. The biggest take away I can see from this is how important it is to be your biggest advocate. No one knows the way you feel, how you experience your life better than you. Be confident in what you are experiencing, do not let anyone dim your light. Shine bright and know your truth. My truth is I am very complex in terms of my medical conditions and no one is going to care for my health or my success as much as I am. Be your greatest advocate.
Stay tuned my friend I’ve only shared the tip of the iceberg.
Side note: picture on the left is me when I was diagnosed 2.5 years ago. On the right is me today.