A Family’s Journey with Fibromyalgia
Today’s blog is close to my heart. Erin has shared her families personal struggles with Fibromyalgia and I am blessed to have captured two milestones for their family on this journey. Erin fought for a diagnosis, and I was inspired by her strength. I hope their families story can inspire you, and maybe help someone suffering from the same symptoms and feelings Erin and her family went through. Without further ado, here is her story.
Hello everyone, and thank you Megan for the opportunity to share our family’s story about living with fibromyalgia! We are the Woods family, my husband Josh, myself Erin, and our two boys, Armen and Elias. We have known Megan since she was a young girl, and have loved getting to watch her grow up with our little sister Jennifer, and especially watch her photography business grow. We know that Megan truly cares about each client she works with and she has been such a encouragement to us as we have shared our story with her. She has celebrated and documented some important milestones with us, and along the way has helped to spread awareness about fibromyalgia through her photography work with us, and also graciously giving us this opportunity here!
Our story with fibromyalgia really started about 6 years ago…
I injured my arms and the pain just stayed. Both arms burned and ached from my shoulders to my fingertips and I could no longer do housework, wash my hair, or brush my teeth without pain. I could no longer carry Elias, then only about 18 months, without my arms and neck aching and burning. I also had to give up things I loved like working out and even photography, as I had a small photography business at the time. The loss of these things brought times of depression and apathy.
The hardest part was that I looked fine on the outside.
Other symptoms began popping up. I began having hip pain a few years later, brain fog and fatigue. I stopped running because my hip ached so bad. People would tell me this was all just simply a part of aging but I didn’t think so! In the summer of 2015, my neck went into spasm for no apparent reason, and soon after I passed out when I got up in the middle of the night. After that I really went downhill. All of a sudden I had panic attacks, anxiety, heart palpitations, non-stop heartburn, GERD, and IBS.
I saw my primary care physician, a cardiologist, gastroenterologist, physical therapist, rheumatologist, neurologist and endocrinologist.
I had an ER visit, countless blood tests, multiple X-rays and ultrasounds, an MRI, nerve conduction testing, physical therapy, chiropractor visits, massage therapy, and I’m sure more that I can’t remember. We were chasing down every lead and it was all such a blur in my state of fear and anxiety. Test after test came back normal, as it usually does with fibromyalgia, and each doctor wanted to treat each symptom individually with pharmaceuticals. I began to suspect all my symptoms were connected and I so desperately wanted an answer and to feel better. I did my best to appear normal to family and friends, and on the days that I couldn’t fake it, I stayed at home. I felt alone, misunderstood, and crazy.
My husband Josh was also having issues of his own at the time, though I was in such a bad state that he was just trying to hang in there, desperately trying to keep me afloat and figure out what was wrong with me. My declining health wasn’t just affecting me, it was also exacerbating his symptoms from the stress of trying to figure out what was wrong with me. Through it all he was my biggest champion, insisting with each doctor we saw that something was in fact wrong with me. When we finally began asking about fibromyalgia, not really understanding it ourselves, I was referred to a rheumatologist, who basically laughed at me when I asked about the possibility of having it.
He put me on a medication for a month that did nothing and then told me I simply had tennis elbow. I never went back to see him.
After 6 years of getting worse and trying to figure out what was wrong with me, the Lord answered my prayers through a friend who shared with me about a book called What Your Doctor May Not Tell You About Fibromyalgia by Dr. R. Paul St. Amand and Claudia Craig Marek. This was an absolute answer to all my prayers! As I read the book I realized that I had had fibromyalgia symptoms my whole life, off and on, different ones, and with varying intensities. As I read further I learned that it was also hereditary! As I kept reading there was no denying Josh also had many of the symptoms, and his mother had been diagnosed with it 20 years before. We also started to realize that both our boys had some of the symptoms we had had as children ourselves.
This book was explaining what had been going on with not just me, but Josh and our boys, and even better, it had HOPE for us!
A little over a month after learning about the book, on May 1, 2017, I went to see Dr. Melissa Congdon, who herself has fibromyalgia and treats fibromyalgia patients using the Guaifenesin Protocol outlined in the book What Your Doctor May Not Tell You About Fibromyalgia. I was diagnosed with fibromyalgia and hypoglycemia, an often co-occurring condition which simply requires a diet change, and Josh was also diagnosed with fibromyalgia at my appointment.
Dr. Congdon told us that if you have a relative with fibromyalgia, you are 8.5 times more likely to have it, and if both parents have it, then all the children will as well. Our boys came back later that month and both were diagnosed as well.
We finally had a diagnosis, and even more reassuring, a way to feel BETTER!
We all started the Guaifenesin Protocol in June 2017, using a safe, over-the-counter medication with no side effects and no drug interactions, called guaifenesin.
Dr. St. Amand believes that those with fibromyalgia have a faulty kidney enzyme which causes us to not excrete phosphates properly. Your kidneys function fine otherwise, and any kidney tests you have will likely show everything is working properly. I had my kidney function tested multiple times and even had an ultrasound on my kidneys and was told that everything was fine. What happens because of this faulty enzyme is that the kidneys can’t excrete the phosphates normally and they get backed up and stored in all the different cells in our bodies. Our body then sends fluid in to dilute the concentration of phosphates and you end up with swollen bumps, or nodules as he calls them, all over your body that press on the underlying nerves, causing all the symptoms of fibromyalgia. The guaifenesin simply works in the kidneys where this faulty enzyme is not working properly, allowing our bodies to excrete phosphates normally, and then over time our fibromyalgia symptoms begin to reverse as the phosphates are excreted and the swellings, or nodules, decrease in size. It is not a cure but it is the only thing that actually addresses the root cause, instead of masking all the symptoms separately with hard pharmaceuticals, which is currently the standard treatment for fibromyalgia.
So, a year later, June 2018, we are all feeling so much BETTER!!!
My panic attacks, anxiety, daily headaches, heart palpitations, heartburn, GERD and IBS are gone! My arm and hip pain has improved so much I am able to do things again, and I will continue to improve the longer I am on the protocol. We all sleep better, have less pain and our cognitive symptoms are better! We are so thankful for how much better we are feeling and we know it’s going to keep getting better. Our favorite thing to do as a family is ride bikes.
With our increased energy and better health, we are enjoying riding our bikes all the time, and all over, too! We couldn’t think of a better way to capture our joy and hope at the one year mark than a photo shoot with Megan and our vintage Schwinn bicycles! Our prayer is to use all that we have learned to reach out and help others who are suffering as we have. There is so much more to fibromyalgia that I can’t cover in this post. There are so many symptoms I haven’t mentioned and it is so different for everyone who has it. The common misconceptions about this chronic illness are so wrong and we hope to educate others about what fibromyalgia really looks like and how others can also feel better as well.
Megan, we can’t thank you enough for this opportunity to share a little bit of our story, of struggle but more importantly, HOPE! Thank you for loving us, celebrating with us, and capturing our one year mark celebration with beautiful, joyful, and hope-filled photographs!
With love AND hope,
Josh, Erin, Armen and Elias Woods
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in our affliction, so that we may be able to comfort those who are in any affliction, with the comfort which we ourselves are comforted by God.
2 Corinthians 1:3-4
If you or someone you know has fibromyalgia, here are some helpful resources we’d like to share:
What Your Doctor May Not Tell You About Fibromyalgia by Dr. R. Paul St. Amand and Claudia Craig Marek
Dr. St. Amand’s website www.fibromyalgiatreatment.com
Dr. Melissa Congdon’s website www.melissacongdonmd.com
Dr. Congdon’s fibromyalgia documentary on YouTube – Fibromyalgia: Getting Our Lives Back–Success Stories on the Guaifenesin Protocol
Our local support group on Facebook – CVFOG
Fresno – Kings – Tulare Counties
Online support and in-person monthly meetings: firstname.lastname@example.org
*polaroid images courtesy of Erin Woods