There’s this thought, from research and observation, that a diagnosis of fibromyalgia can be genetic. In my case, as far as I know, there is no one on either side of my family that has/had fibromyalgia or any other chronic illnesses or autoimmune disorders. However, some of my symptoms of fibromyalgia, unbeknownst to me until recently, have been present since early childhood.
When do you first remember certain fibromyalgia symptoms starting? Because fibromyalgia is still a “new” diagnosis (and I put this in quotations as it’s been around as a diagnosis for nearly half a decade), it takes some people several years before the diagnosis is even addressed. I recognize that fibromyalgia is considered an exclusionary disorder and everything else that shares symptoms with the disorder should be ruled out first; however, why it is still taking so long even after everything is ruled out is beyond me and many others.
So, what does “chronically genetic” mean? I should first state by saying that I took this title from an article written in the National Pain Report by a woman whose adult daughter was just diagnosed with rheumatoid arthritis and fibromyalgia. The author feels guilty knowing the component of the role that genetics play in these diagnoses. She talks about how while she always wanted kids and despite the diagnoses she would still have but her fear of passing down these genetic traits was strong. As someone myself, who doesn’t have children (yet), it’s something I think about because there are other genetic traits that I have, that other family members share as well, that I would rather not pass down to the next generation. But, seeing as how I am living with these disorders, I’m not going to let them keep me from the dream of having children - one that I’ve had since childhood.
As you struggle with fibromyalgia and other possible co-morbid diagnoses, do you wonder what would have happened if...
Many people were not diagnosed with these disorders until adulthood and many of you have had children already. In talking to my friends who have fibromyalgia and have children, I understand their fear of passing it on. Fibromyalgia is a hard diagnosis and a struggle to bear sometimes for me, often for others. Who would want to pass that on?
I know this sounds strange but in many ways, I consider my fibromyalgia diagnosis a blessing. Do I go through severe bouts of pain, fatigue and fog? Absolutely. However, it opened up an avenue for me that I never would have gotten to had I not been diagnosed. I have a new support group of friends that KNOW what it’s like to live with a chronic pain disorder. I have learned how to (mostly) manage my symptoms and still be able to help, by coaching, others who are struggling with how to live with this difficult disorder. I enjoy being able to take a disease that literally swept me off my feet (and not in a good way) to help others learn how to manage their symptoms and provide the support that they need. The support that I can provide versus that of a therapist or a doctor makes a big difference because unlike most of those medical professionals, I live with the disorder so I can identify with people and literally understand how they are feeling. I can reassure people that they are not alone in this world with fibromyalgia and that you can live a full life with it.
In bringing up being chronically genetic again, while my version of my fibromyalgia story doesn’t stem from another family member struggling with the disorder, growing up my genetics were trying to tell me a story by displaying many of my fibromyalgia symptoms early on. I wonder, too, if maybe there were more distant relatives, or even relatives that didn’t think to follow up on their symptoms, that may have had the diagnosis had they gone to the doctor.
You know your body best. And, if you are reading this, you have most likely already been diagnosed with fibromyalgia. If you see family members who are struggling with the same symptoms that you are, it may be worth prodding gently to see if they have seen a doctor to determine the reason for their symptoms. You can do what I did. I took a disease that at one time knocked me down to help support others to live life to the fullest. Just because you have a chronic illness DOES NOT mean your life is over. It just means that the path that you thought you were heading down might not be the one that was meant to be. I still live with fibromyalgia but I am no longer regularly confined to my bed or recliner. My average pain is a two versus a seven that I lived with for a while before and after my initial diagnosis. I’ve taken my training as an educator to research and help coach others struggling with the same issues.
Are you struggling and need support around your fibromyalgia and other chronic illnesses? I can help! Thanks to the International Fibromyalgia Coaching Institute, I have been coaching for a couple of years now. I have learned as much as I have offered, if not more. I am constantly keeping up on the research and newest ideas of how to treat fibromyalgia, PLUS, I have my own experience of living with the disorder for over five years. Have you ever considered giving coaching a try? Now’s your chance. I can guarantee that it’s worth it. Click here for more information. I look forward to hearing from you soon. =)
I’m Kate Straus and I’m a Certified Fibromyalgia Advisor. I help Jewish women feel confident in their ability to practice their faith while navigating the ups and downs of fibromyalgia. I’m using the disease that at one time knocked me down, to help support others live life to their fullest.