How can we begin to heal if we do not understand why we are ill?
Healing from chronic illness is so much more complicated than just treating the symptoms. Prescription meds may help us cope, but they do not correct the original imbalances that led to dis-ease. And with difficult-to-understand illnesses like fibromyalgia and chronic fatigue syndrome, it is not always possible to pinpoint just one specific cause. Often it is a series of causes like a traumatic event experienced while in the midsts of some other type of recurring life stressors. There are many different types of traumas that can lead to chronic illness – physical, emotional, viral, environmental. With so many possible factors, it is easy to see why treatment is so difficult.
Knowing your trigger.
When putting together my blueprint, it was easy for me to pinpoint the exact moment when my trigger was switched – the day I broke the porcelain toilet with my head. Yes, I would definitely say that qualifies as a trigger. And the immediate downward spiral of my health from that day on is a clear indicator that the physical trauma opened the door to chronic illness. So I can with confidence say that my trigger was physical. That is the easy part. But what I must also consider is how my lifestyle leading up to the trauma left me predisposed to developing chronic illness.
Not everyone who suffers a debilitation head trauma ends up with fibromyalgia.
The concussion and brain trauma that resulted were expected outcomes to the physical trauma, but the pain and fatigue that increased daily were not. So why did I end up with fibromyalgia after the head trauma? Was I genetically predisposed to it? Did my lifestyle leading up to the accident leave me vulnerable to chronic illness? In both cases I believe the answer to be yes. But I am not a medical professional, and I cannot change or debate my genetics, so I am only going to focus on my lifestyle leading up to the event.
Busier is not always better.
I had what I thought at the time to be a very healthy and active lifestyle. I had a great job, a fun and active social life, I exercised regularly, ate well, was in a healthy relationship – sounds pretty perfect, right? Well upon reflection it was not so perfect after all. In reality I was wound so tight that I was just waiting to snap. I never said no to anything. I was always on the go, never really taking the time to relax and enjoy my life. I was simply pushing through one experience to get to the next, like a small child who won’t drift off to sleep for fear of missing out on something. I had to be engaged and involved in everything because it was how I defined myself – “I am Dannette, the girl with the most active and full life ever!” With or without the head trauma, my lifestyle was eventually going to catch up with me. A crash was inevitable.
So while I can easily state that my trigger was physical, the depleted state of my being leading up to the physical trauma likely left me vulnerable to the prolonged crash of chronic illness.
Why is it so important to understand all of this? Again, I am not a medical professional, so this is all theory on my part based on living many years with chronic illness, and my current experience with improved health. The reason I think it is so important to understand the trigger is because I believe it will best inform how we should approach our own unique blueprints for healing.
My trauma was physical and so is my treatment.
Unless this is your first time reading my blog, you know that I directly attribute the healing I am experiencing to my regular practice of yoga. I was very athletic leading up to my accident, and tried many times over the course of the first 13 years of my illness to return to my former athletic ways, only to fail and end up in miserable pain. When I discovered the healing powers of gentle and restorative yoga, my body responded immediately. I found movement without pain! And because of the neurological nature of FM, yoga is an excellent mindful movement to practice as it regulates and balances the central nervous system.
I did not have any viral issues to address, like so many people with FM and CFS do, so in a way I am fortunate. My blueprint is pretty direct. I have seen tremendous improvements by incorporating gentle movement back into my life, and by addressing several other contributing issues like food allergies (eliminating gluten), and toxicity (heavy metals).
Of course this is a simplified explanation of the many years of trial and error it took me to piece my blueprint together, but I believe if each of us take the steps to really address and acknowledge our triggers, we can begin to piece together a blueprint for healing. Take a long and truthful glance back on your life before the trigger. Were there other factors of your lifestyle that may have left you vulnerable? A difficult marriage or childhood? This would require adding an emotional healing component to your blueprint. Do you see where I am going with this?
I am no longer the girl who thinks I need to say yes to everyone and everything. In fact I try very hard to participate in only things that nourish me, and eliminate people and activities from my life that do not. Healing requires effort, and sometimes we have to make hard choices. It also requires us to be able to honestly reflect on how we, unknowingly or not, contribute to our own illness. It is only with awareness that we can make progress. So if you are ready to begin you blueprint, start here: What’s your trigger?
What a great post! I, too, think it’s important to consider all the factors leading up to Fibromyalgia or CFS. My Fibromyalgia started with a traumatic childbirth experience. I think I probably suffered from PTSD for awhile and had no time to recover from that because then I had a colicky baby that never slept. The final straw was a move to a house that I realized (too late) that I hated. That really sent me spiraling into pain and depression. Looking back, I would have to say anxiety was the real underlying cause of it all. Reminding myself of that helps me stay committed (or try to stay committed) to my practices of yoga and meditation.
It is almost as if you are describing the perfect storm Trisha. All the stressors, injuries, and debilitating factors come together at the perfect moment and the result is chronic illness. That is why I think it so important that we all map out our own unique factors that led to our illness because I think it will inform our unique treatment. And you are doing so many things right! Yoga and meditation are great!
I love your post, especially the description of your pre-fibro life. I, too, was the one who would take on anything, always trying to please everyone. I had a job I loved (!), but I defined myself by the job. I was a primary school teacher–French and music, so no down time–always active, highly energetic. I was an athlete, always.
To make a long story short, I don’t know exactly what my trigger was, but I think it was a combination of things. I had mono when I was first married. I never fully recovered from that. I overextended myself physically and emotionally for many years, never charging my batteries. I caught every virus going around at work–my nickname was the “virus queen”. I kept working when I should have taken time off to heal and let my immune system recover. Finally, I collapsed at work, literally.
So…..I guess my trigger was a combination of the things you mentioned and it had been at work for many, many years. I did not listen to my body or make time for myself. I have the most wonderful husband in the world and a daughter and grandson I adore. I am so grateful for that. The problem is, since there were so many things at work, I don’t know how to make myself well. I have not worked for 7 years and I fully expected to be back at work after a year off. I try to keep stress out of my life (but it is the little, daily things that drive me nuts), I have tried many medications, but have not found anything that works for me. I continue to try different things, hoping that I will find the magic bullet. In the meanwhile, I enjoy reading these posts and communicating with people who are in the same boat.
Judi my head was whirling just reading your description of your busy life. Yes, I would suspect all those factors contributed to you developing chronic illness. Sometimes when we don’t know how to slow down, don’t know how to say no, our bodies force us too. So maybe even though you are being forced to slow down, you are not able to improve how you feel because you are still holding onto your conditioned behaviors (and expectations of yourself) from the past. I would say start simply with learning how to embrace the silence, embrace the slower quality of your life, embrace the messages your body is sending you. Acceptance is a critical part of healing.
Also if your body does not respond to medications I say that is a blessing because unfortunately there really is no magic bullet. Meds only mask or decrease our symptoms. They do nothing to address or improve the causing factors. Have you tried meditation, yoga, tai chi, qigong, or any other types of mindful therapy – art therapy, music therapy? I would say find something in that arena that you love. That would be a great first step. It took me 13 years to find yoga, which if there ever was a magic bullet for me, yoga is it. Wishing you the best of luck in finding what works for you!
Thanks so much for your response. I like that word, “embrace”. I will try harder to embrace the silence and the slower quality of my life. Some days it is really easy to do that. I believed that I had “accepted” (interesting word) my situation, and I have–to a certain extent. Baby steps.
I would have to say that my FM started after falling halfway through my roof. I was always active, even with being a mother. I not only took my kids roller skating, I skated with them. When it was time to play ball, I was out there teaching my son how to throw a baseball, or football. Also taught my kids how to ride bikes. I stayed on the go with my kids and my life, never thinking I would one day not be able to do even the simple things that I had always taken for granted.
It took years for me to be diagnosed with FM along with several other major medical problems. Along with that ending up confined to bed for almost 2 years ago. This really did not help my FM or my depression. I lost almost all of my friends since I could not get out and socialize any more. At the time I didn’t even have a computer with which to talk to others. Just my phone and my family.
I am still struggling to find a healing way of life for myself. I will not give up and with God’s help and the help of others I will find it.
Rene I can hear your pain in the words you wrote. So much of how we think and feel about ourselves is attached to our abilities and our actions. You went from being a thriving, active woman, to someone struggling to connect and heal. The depression that is associated with that is normal. Your spirit is the thing that is going to help you make the adjustments. In truth, you may never again know the health you once did, but you can still live a fulfilling life. I learned once I stopped trying to get back to my old life, and accepted that I could be complete and whole in my new life, things began to change for me. Acceptance is key. But I also think a period of mourning is necessary and helpful. We are not who we once were. The mental and spiritual adjustment to this can be as painful as the physical symptoms we experience. Keep making connections, keep reaching out, and keep treating yourself with loving kindness. My Best to You!
Wonderful post and I’m so glad I found your blog. I believe that I have had fibro since early childhood. It was not diagnosed until 1995 and I am 62 years old now. I’ve always had great pain (as a child the doctor said “growing pains”) plus IBS, severe menstruel pain and many other symptoms. My childhood was tramatic. I was an only child living with my mother who was schizophrenic and an alcoholic. There is not genetic history in my family of anyone else having fibro or chronic fatigue.
I do take some medication but also realize that I have to manage my body to the best of my ability. I am a type A personality who always said “yes” and was involved in everything. I still work full time in a stressful sales job. I have learned to say “no” and be careful of the “energy” I have available. Reading the bible and listening to music is very helpful. For exercise, I walk and do some tai chi. I have tried yoga but was unable to hold the poses for very long so it was too hard. I’ll read more of your experience with yoga and possibly try again. I take alot of vitamins and high doses of Omega 3, malic acid, l-trytophan and calcium which I think helps with the pain.
Thanks for your posting. You have a beautiful way of expressing yourself. FM does not have a quick fix and we must mind and spirit to help deal with the pain and fatigue.
Thanks for the articles you’ve been posting. They’re helping me refocus my energy back on my own “blueprint.” In 2009, I was able to participate in a 4-week pain management clinic run by a large hospital nearby. The clinic was a multi-disciplinary approach to treating chronic pain,with a focus on fibromyalgia.
Every day we had a minimum of 1 hour of physical therapy (including pool exercise twice a week), 1/2 hour of occupational therapy (SO helpful), 1 hour learning about and practicing intentional relaxation (the abolute best, and hardest, factor in the relief of my own chronic pain), at least 1 hour of class to study fibro and its management, plus weekly meetings with a psychologist, a pharmacist, and the pain management doctor. We also met with an addiction counsellor, a job counsellor, and others who could help shed light on dealing effectively with fibromyalgia.
For me, the clinic was a Godsend.
After 4 weeks of participation, I discovered that, for the first time, I was hopeful that I could really live out the remainder of my life in a way that was fulfilling and meaningful despite constant pain. Hope was the key.
Now, to be gut-level honest with you, I found the transition to “real life” very difficult after the protective environment of the clinic. Intentional relaxation in a life with an overloaded “to do” list? Not easy by any stretch of the imagination. I’ve been “off the wagon” for a while, and suffering more because of it.
Your articles have been another Godsend, arriving at a time when I find myself ready to begin again. Not from scratch, but again nonetheless.
I believe my original trigger was a compound one of physical trauma (head injury), emotional abuse (in my first marriage), and spiritual pain (from not nurturing that part of myself).
So the first step in my blueprint is to spend at least 15 minutes each day practicing intentional relaxation. It helped me once, and I know it will help me again.
The second step will be to set up visits with the physical therapist who was most helpful to me. My aim will be to have her “retune” my body so that it moves easier. Once that happens, I can begin step three, incorporating more movement in my day.
Again, thanks so much for the inspiration!
Excellent information on the blog that will bring the chronic pain of persons suffering from this disease. Thanks for the blog.
Medical-rights.com
I really enjoyed your article — particularly the part about accepting the pace and flow of our lives as they ARE and need to be for healing right now…not as they may have once been or as we imagine they should be. I struggle with this daily — even after over 10 years of living with a debilitating condition. Although I live with a different illness than FM, I meet many of the same daily challenges (as I imagine most people living with a chronic condition do) and am particularly vulnerable to stresses. I feel strongly that I must continue to challenge myself all the same – to know just what I am capable of. But I do frequently over-extend even after all this “practice” at living with limitation!
Meditation and a newly begun yoga practice are help me to change those expectations.
Thank you for voicing what so many struggle with…I look forward to reading more of your posts 🙂
In some ways my problems with Fibro started a bit slower. I had the signs: mitral valve prolapse, unspecified allergies, odd pains that lasted longer than they should have, my then boyfriend (now fiance) was diagnosed with psoriatic arthritis, multiple surgeries, and I would get mutiple sinus infections. Then I stopped getting sick, after that my wrist started to hurt, then my arm, ect.
I do take some medications (including Enbrel), but I have a diagnosis of Fibro and Psoriatic Arthritis. I have found that painting (miniature figurines), was my artistic release. I am very lucky to have a rheumatologist who is supportive of my painting.
Its very difficult: my fiance is on disability and I’m a full time college student. It is good to find others who understand.
So much of this is like looking in a mirror and hearing my innermost thoughts and suspicions read aloud.
I was diagnosed at 28 – after YEARS of irregular, seemingly unconnected symptoms – and within months, totally disabled. So many of us become Nancy Drews when we’re diagnosed with FM, whether from sheer obessive curiosity, desperation, or just finally becoming our own health advocates, demanding we be heard because we know our bodies better than anyone; and that we have an illness so “mysterious,” no doctor can tell us we have it without testing us for everything else under the sun first; no doctor knows what causes it or how to treat it, but they throw medication at us anyway.
Eventually, many of us anyway, tire of the same old B.S. and we become experts of necessity, be it through research, having an open-mind to seek out the advice and council of “alternative” (hate that label) health practitioners who give us insight we may never have heard before (like adrenal failure or copper toxicity, the symptoms of which, for me, are like reading my expanded astrological sign write up for me). As part of that journey, I was forced to take a good hard look at the actual chronological physical and emotional traumas experienced from childhood to adult hood, which I ignored, or joked my way through from a reasonably younge age up to this point in my life. No violins, but I’ve had a lifetime’s worth of stress – enough to put an addition on a therapist’s house – as well as physical injuries.
Looking at the time-line, comparing it to my medical records? Like deciperhing a code. It’s been so, so important and valuable, because it forces you to face those demons, learn how to keep them from interfering with your recovery, as well as the rest of your life, because, as you say, you identify your triggers and learn what to stay away from.
My life and relationships have changed dramatically in the last three years. They barely resemble what they were before, but I’ve learned to start saying to no to small things like lunches I don’t want to attend, especially with people who don’t lift me up like I do them, but also big stuff like family gathering with people who love me, and whom I hate to disappoint and not spend time with, but also some who just don’t get it, who I’m tired of explaining myself to.
I’ve learned to stop letting people who stress me out get away with it, because the little upfront confrontation is far less stressful than a passive agressive death-match with mom. I found a treatment team of MD, NDs, osteopaths, RMT, nutritionists, private restorative and strengthening yoga – a team of people who don’t work together normally, but do it for me, because they “get it” and they care, and they know I’m going to share with them what I learn, so they can share it with their other clients.
I’m not going to be “better” tomorrow. I may never get my “old” life back, but no one does. Life is always changing. I don’t know where my mine is going to end up, but I know that because of my own research, willingness to share, and the fact that so many others are doing the same, means that my progonsis and outlook on life is much stronger than it would be had I just left everything in the hands of a bunch of different pill-pushers who barely knew me.
I’m sure we can all relate to the years of trial and error and relapses to comfort foods and habits, but it’s so much easier when you can find something to anchor yourself and your illness to. It’s empowerment. Something we can control. And something we can share with others like us who know ourselves really well, and, sometimes, that also means we know each other in ways that not even our very closest loved ones can, no matter how much they wish they could.
Thanks for this great and thoughtful post, and all else that you do.
Mine was during school and much of the harsh abuse from others. Then it continued on through my first marriage through mental abuse. Had to deal with my 3 month old son having a hole in his heart after a divorce. Then the loss of both my parents to cancer and having to care for them.
I was told 10yrs ago that I had RA and Fibro–have been trying to keep myself going.
I have a great many suspicions of contributing triggers however I have no defining moment of when my fibro started. I wasn’t even looking for an answer when I got my diagnosis the pain had just been part of my life. I set it aside so often, it didn’t have a name. I wasn’t “allowed” to bring it up in my marriage so I didn’t. Now, in a sense I am embracing the facts of knowing I have a chronic illness and trying to understand all the ins and outs of it. At the same time I am working on changing lifestyles and healthier living and exercising. I love to meditate and do yoga but still seem to let things get in the way of being consistent. As was talked about in your earlier post it is a work in progress. 1st acknowledging myself, then my illness, now the process of healing!!
This has made my day to find this blog and read the articles and comments, my pain has been a life long ordeal and not one person ever believed me. I would always get that tired old response “oh you are just faking so you don’t have to do anything”. I could not handle PE in school I would be in pain and winded, if someone was to poke me in the side or my arms it would bring tears.
I had my daughter 26 years ago and they told me she should be my last I ignored them and had my son 19 years ago.
About 23 years ago I slipped on some oil at work and herniated the disc L-4 and L-5, nothing done except therapy. In 2006 I fell off some bleachers at my sons baseball game and ruptured the same disc, the local hospital doctors told me it was not serious enough, after a year of being in and out of the hospital they finally sent me to Tucson and it was there that a doctor determined that my disc had not only ruptured but had dissolved completely. The back fusion was a success and I was able to move again, I worked my way up to 2hours a day of Wii Fit ….yoga, aerobics, strength, and balance but that was not to last. I had a bladder infection and they gave me Levaquin, now I have a hard time getting around because the tendons have been damaged and my feet feel like all the bones separate when I am on them for over 15 minutes.
In the summer I do have a pool that helps a lot but now the water is too cold for me to use it, I am trying to do the Wii Fit again for 15 min in the morning and again in the evening.
Thankfully I go to school on line at the University of Phoenix to keep my mind active and the disability office at the school has made arrangements for my “fibro-fog” with my work.
Thank you for reading and providing an outlet, my family is helpful and supportive but there are times we need a shoulder from someone who knows what we are dealing with. I have to laugh at my husband (diabetes type 2) complain about how sore he is or how tired…..they really have no clue what it is to live in constant pain.
Thank you and God Bless