They call it fibromyalgia. What is it you ask? Fibromyalgia is widespread pain throughout the body with very tender points. Women are more likely to get fibromyalgia than men at a rate of 9:1.
I experienced fibromyalgia for 20+ years where I would have what I would refer to as episodes. It was extremely frustrating as when a flare up happened it was absolutely debilitating. I would have minor episodes and I would have major episodes. The minor ones, when I felt them come on, would mean that life turned into go to work, take it easy, absolutely no overtime and head straight home at the end of the day and rest the remainder of the day, no cooking, no housework, no nothing until things let up.
Although many times when an episode would come on, the above was not sufficient and I would go into what I called a full-blown episode. When that happened, the pain was so intense that it would get to a point of not being able to cope or function with it and up to emergency I would go. I remember sitting in emergency and being so completely frustrated with the ER doctor when he asked me “What would you like me to do?” Excuse me, I am not the doctor, and I sure would not be here if I was able to cope. Needless to say, when I ended up in the hospital, they would try one drug and then come back a while later and ask if that helped, most of the time the answer was no. Then they would inject me with Demerol and then leave and come back and ask if that helped. Sometimes I was so drowsy from the dosage that I would then be sent home and have to sleep it off for the duration until the symptoms let up. Other times, the pain was still so intense that it was like they gave me nothing for pain. Usually, at that point, I was admitted to the hospital, and they would hook me up to an IV and give me morphine. Yes, that is right, morphine. I do not know if the morphine actually helped with the pain, but a person is so drugged out, you literally sleep for days. Then usually after 4-5 days, the symptoms would let up and they would release me, and I would get back to my life. I would leave the hospital and each doctor appointment so frustrated as there were no answers.
To experience the pain, to live in pain 24/7 was so frustrating. Even when there was no episode, you are in constant pain but that becomes your normal. The doctors would just send you from one specialist to another. I was made to feel it was in my head, that I was crazy many times and one specialist even walked into the room, did not ask me one thing, did not verify any symptoms (which that trip I was so hopeful because I was in a full-blown episode and I couldn’t even walk into the clinic without assistance) and just wrote me a prescription. I was so mad that I literally ripped it up in front of him and left. I pretty much gave up on the Canadian health care system that day as it was a total joke. I was not there because I was lazy or did not want to have a life, I was there because the pain was so intense that I had to stop life when things got that bad and that was not what I wanted for myself.
Then I lost my son in 2013, my work changed significantly in 2015 and life became stressful 24/7. By 2018, I was just surviving, and then I had my warning flare up in May of that year and ended up off work for a week. Though, I ended up laying in my bed and answering the work emails and handling things regardless because the expectation was there, things eventually let up and I went right back to the long hours and attempting to balance work and life. Well, in July of 2018, I had the worst episode I have ever had. This time was nothing like the previous experiences. This time, I ended up on bed rest for almost two years.
My days now became 90% of the day in bed. I forced myself to go out here and there, but the pain was so intense, simply standing up involved breaking out in a sweat. I purchased a mobility scooter as that allowed me to get out a little more than what I would have otherwise been able to. It now became a chore to turn the tv on some days as the pain in my hands was so intense. This time, there was not one inch of my whole body that was not in constant pain. This time, instead of things getting better, I continued to deteriorate. By February of 2020, I was having some major stomach issues that made it difficult to eat or drink most days. I was on so many different medications from the doctor that it was hard to keep track of it all. The most frustrating was that in the over half dozen medications I was on, the pain was still so intense that I was unable to function. I was living on jello most days. Some days I was scared to drink any water because just taking a couple swallows turned into me curled in the fetal position in bed in tears trying to cope with the pain. I honestly did not see any end in site.
The reality is that I needed to take my life back. There was so much going on around me and the stress continued to feed the fibromyalgia pain. My family had given up on me and expected to be burying me as well by the summer. The day finally came where I needed to make a choice. No one could make that choice for me. I had to find it within myself to choose me. It was time to really start dealing with everything in my life from birth to present. It was time to start dealing with my reality of losing my son and everything that transpired from then on. It was time to choose me and take my life back.
That deep, deep internal choice I made is what has opened my eyes about all the suffering and pain I have experienced in my life and how I feel like I will never have another fibro flare up as long as I choose ME!!!!
So what does that mean?
Well, I experienced a lot of trauma growing up which included sexual abuse before the age of 5. The beliefs that I gave myself from that trauma as well as other things that had transpired in my life made me spend my teenage years contemplating suicide every single day. I put on the façade of looking like I was tough and strong but inside I was a completely broken little girl.
At 17, I met and fell in love with my husband. We got married, had two kids, but, at the end of the day, I was still so broken. At 32, I had a minor stroke, and my body was just a mess. I walked like I was 80 years old for a very long time after that. I had extreme migraines that were absolutely debilitating. I could not stand loud music, I could not walk in a straight line and even just putting my shoes on became a chore as I could not bend over without falling over. This, for me, was when fibromyalgia first kicked in, though I was not diagnosed yet at that time. Over the years, I just accepted the episodes and just felt like that was meant to be part of my story, part of my journey.
Then the day came where I chose myself. I chose myself that day at a soul level and knew that it was time to awaken and wake up. Upon that decision, the fibro flare up shifted quite quickly but I knew that I never ever wanted to experience something like that again in my life. I was finally listening to my body.
I started my healing journey at that time. I started doing affirmations and meditation to begin with. I don’t know why that is where I started but that is what I suddenly, was drawn to. Then I started to notice little changes. The best one was learning to sleep again with no medication. I faithfully turned my sleep meditation on every night. Sometimes I had to listen to it two or three times. I even started cutting back on the sleeping pills. It got to a point where I was able to fall asleep with meditation and no medications. That felt amazing.
I also started working on facing the trauma I had not only experienced in the past but also the trauma I was experiencing now. It took time and I was scared sometimes as I worked through my trauma, as it would bring up so many emotions. I learned to put myself first. I learned to stand in my power and most importantly I learned to love myself and trust in myself as to what I needed at any given moment.
The more I did that, the more I continue to do my trauma work, the more I am absolutely 100% positive that a fibro flare up is not something I will ever experience again. What I have learned is that every trauma I experienced in my life, I allowed myself to feel the emotions only at a surface level. I took the rest of the emotions and stress and tucked it down inside me and closed the door not ever wanting to look at it again.
What happened over the years was that I had stuffed so much down that my body was so full of closed doors that it started using pain as the go to. I could deal and feel through pain, but I could not feel the deep emotions. Well, each time I was traumatized, or I had a lot of stress, I pushed emotions down and thus the pain would return at a whole new level. Because there were so many closed doors, the amount of pain I felt on a daily basis just became my normal. My body spoke to me all the time, but I just plain refused to listen.
The minor stroke I had at 32 should have been my wake-up call for the work I needed but I chose to somewhat listen but not truly listen to everything my body was telling me. So then, I had flare ups over time but still I buried my head in the sand and just dealt with the surface emotions but not the emotions to the core of me that I should have focused on. Then, after losing Devin and finding my life in total chaos 24/7 and still not wanting to look at everything or handle everything, my body said, “this is your final chance.” It took me two years to listen to that and really open my eyes for the first time in my life.
The healing and revealing has given me so much more than my life back. The fact that I feel, for myself, that I will never struggle with chronic pain or fibromyalgia again to that level pushes me every day to continue on this healing journey. I am not at 100% but every day I work very hard to get closer to that as I refuse to let any dis-ease rule my life again. I look deep every day within myself and choose my healing. As those doors pop up in my healing journey, I embrace them, open them wide open and feel it all. That is what is going to give me my life back. The emotions from trauma that have been stored within me for so long must be neutralized.
I have made a conscious choice to choose me each and every day!!!!
My intention this week is to offer hope to the thousands of people out there that are suffering from fibromyalgia and chronic pain. I know it feels hopeless at times but if you want to try and move beyond that and try a natural way to heal your body, please please please reach out to me at mseguin@peacefulconnections.ca and see where we can go from there.
I’m going through same stuff. The pain I continue to feel is undescribable yet tests done by doctors come back normal. I refuse to live on pain meds. I’m diabetic and have fatty liver. I’m learning to take care of myself as I have gone through alot of stress and trauma. I know there is hope 🥰 Thank you for sharing. I have kept my pain from friends and family for several years.