"Me vs. Fibromyalgia" is a biweekly, one-of-a-kind series designed to give readers and warriors affected by Fibromyalgia a comprehensive look into the facts of the disease and the story of a driven, high-achieving business woman who wouldn't take no for an answer. I've chronicled eight years of experience with Fibro including chronic pain and fatigue, low energy, doctors, relationships and more, and hope to offer answers and support to those who seek them.
There are few things more frustrating than trying so many different Fibro treatments and not getting results. I cannot tell you the amount of hours and years my husband and I have spent looking for something or someone that can give me relief. It's exhausting to begin anew with each doctor, trying to explain all of my symptoms, being poked and prodded and just getting to the appointment itself.
There have been times when I have suffered more than I should've because I was discouraged by the doctors and treatments I had already tried. Being so excited to finally get word back from a doc, I used to do whatever they said. I thought, "Doctors orders..." But guess what? Doctors are humans too. You have to be your own best advocate.
It Takes Work
After eight years, when it comes to communicating my condition to doctors, nurses and pharmacists, my husband and I have experienced more than our fair share of symptoms to figure out how to relay: chronic pain and fatigue draining my body, not to mention skin issues, or that I couldn't dye my hair for seven of the eight years after being diagnosed with Fibro (and was rushed to the ER) and sensitivity to light, sound, smell & temperature shifts. At last, we've mastered the art of explanation.
When we first started seeing Dr. K., referenced in my previous blog, all I would do was sit on the patient table and cry. When he touched my tender points and the nurse came in to take my blood, the cries turned to sobs.
I watched as my husband explained every symptom including nausea, extreme pain, exhaustion, and my inability to get dressed on my own (which all led to frustration and hopelessness). And in turn, I watched Dr. K. listen intently to all of my symptoms.
My husband became my voice. In eight years he has never missed a doctor appointment and has taught me how to become my own best advocate.
I'll Try Anything Twice
Over the years, my husband and I have become somewhat of a "testing" ground for Dr. K. He believes that I'm able to maintain my schedule of running a multi million dollar business, traveling and just beating the odds because my will outweighs my condition.
But it hasn't been easy. At first, we loved being the guinea pig. Trying new cutting edge treatments and different vitamin combinations really worked and made me feel better. But over the last year or so of "testing" with Dr. K., researching on my own and trying homeopathic treatments, some of these new treatments were having an adverse effect.
Right around the same time, I took many people's advice and decided to try acupuncture. It took me some time to find Dr. A., but thankfully I was referred to her by my good friend.
Dr. A. and I spoke at length about my Fibromyalgia before my first treatment and I was feeling pretty good about my first appointment. Until after the appointment.
Dr. A. put 18 pins in my tender points, and every single one hurt like hell. Then she put an electric stimulator on my hands and legs all for a total of 20 minutes.
After the appointment I felt woozy, but the worst was yet to come. About three hours after the appointment, I felt like I was dying. Literally.
Every part of my body was in extreme flare mode. I called Dr. A. and asked her if this was a normal response, she said no! Oh boy...
Subsequently. I was forced to stay in bed for eight days with one of the worst Fibro flares I had had in the last three months.
It was then that I knew I had to find my own voice. Part of finding my own voice with doctors, ER visits, acupuncture and pharmacists came with finally accepting my truth. I have Fibromyalgia, a chronic, meaning with-you-forever, condition.
With acceptance came the ability to communicate more effectively. I learned how to ask question after question when Dr. K. was recommending a new experimental treatment. If I felt comfortable initially, I also learned how to say, "I'll try this for a week" and see how my body reacts. I also learned how to straight up say no if I didn't like the answers Dr. K. was providing.
As far as Dr. A. and acupuncture, we went from 18 pins to 8, no stimulator and the pins are in for 12 minutes. She always playfully tries to negotiate more pins and leaving them in longer, but I know what's best for me and my Fibro.
ER visits (which are the occasional norm for Fibro patients) and pharmacists have become much easier to deal with. My thought is that the medical world will always be evolving, if I don't open myself up to change, how can I expect my condition to improve?
I had to go outside of the norm, color outside of the lines. As long as it took to finally find the best treatments for myself, the hours and years of research and appointments that didn't end well-were worth it.
If you aren't getting the results you're looking for, I encourage you to keep fighting. Keep looking, keep an open mind and don't compromise. If you know you can do more, do it. This condition can be managed and you can live a better life.
Based on your feedback from Part 2 -- Your Rheumatologist... The Secret Sauce, here is the recipe for my personal secret sauce:
Next up: Flare Up, Now What??
Part of my mission is to bring the Fibromyalgia Survivor community together to offer real support and encouragement to one another. You can be part of this movement by sharing your story too. Tell us about a time when you have been your own best advocate in the conversation below.
Disclaimer: I am not a doctor. All information presented should be regarded as friendly advice and opinions based on my own experience and research. I am not making an attempt to prescribe any medical treatment and the information contained in this blog is not intended to replace a one-on-one relationship with a doctor or qualified health practitioner.
Click here to read my last post, Me vs. Fibromyalgia: Part 2 -- Your Rheumatologist... The Secret Sauce