Good Afternoon Peers,
I had my endoscope two days ago and the first finding is probable Gastroparesis. My attacks since July have been severe, landing me in the ER 3 times, requiring every test they could do of my abdomen, epigastric cocktails and injections of morphine to calm the pain that screamed through my upper back from my sternum. A pain chart taken during these attacks was a 10+. I have also had four additional attacks where I managed to stay at home during this time frame. Additionally, I am waiting for results of seven biopsies, thankfully I have learned to take scary medical problems one day at a time. A quote I am reminded of here is, “Suffering is optional”. I am not able to keep up this attitude every day but, I try very hard to do so.
After getting this initial diagnosis, another test will be performed in hospital in a month. Being a self advocate, and advocate for chronic pain/illnesses in general, as soon as I recovered to a state of medium flaring, I began researching about what this new development in my stomach was. As I moved along through the empirical research, I was shocked to discover that it is correlated to Fibromyalgia! This does not mean that if you have one you will have the other, so don’t panic. However, it raises yet another huge issue in our invisible illness world of medical care.
As there is empirical evidence that the two are related why are our doctors not describing the symptoms to us; isn’t it better to be forewarned in order to be forearmed? I am a Peer who has always advocated for myself with doctors. When I began having the painful symptoms of Fibromyalgia, my self advocating ramped way up. I found every forum, book and Peer I could in order to understand what I was dealing with. I asked my doctors more questions than they liked, without caring if I took five minutes longer than my appointment time. Yet never in the 16 years of living life as fully as I can each day, with health, hope and wellness, has a doctor discussed this relationship of diseases and what potential symptomology I should know. This would then allow me to discuss them at my next appointment.
I am bringing it to your attention. I have no idea that it I had known about this relationship that I could have changed anything, but, then I never knew about Fibromyalgia before my chronic pain began. Knowing there was perhaps more medical relationships involved with my pain should be my right. I am not pleased to share this with you, but firmly believe that the more knowledge we have of our syndromes and dis-ease, the more empowered we are to create a Well lifestyle, filling our toolkit with every item potentially needed; in this case nutritional (I actually have very good nutrition but Gastroparesis requires a different approach than what I though was healthy). Understanding the nutritional needs might have assisted me earlier on, or perhaps caused a less severe outcome over the years.
Again, please note that this is not a common correlation to chronic pain. The information is being given so you can be informed about the possibility. Please don’t panic and rush into your doctors office; just research and keep the information in your binder in case you develop symptoms.
Lucinda Tart, Fibromyalgia Peer Advocate/Life Skills Coach