I recently read a post on twitter by My Name is Fibromyalgia that says that fibromyalgia is progressive. And goes into details of the 6 Stages. It is a good article and quite dire.
It makes me sad when I read posts like this as it projects a negative future for “most” cases of fibromyalgia. It makes me sad because I know many people with fibromyalgia, maybe even most, will go down this path.
Because I know there are options that can change the trajectory. It makes me sad that so many men and women with fibromyalgia are suffering and can’t, don’t or won’t believe that the possibility of improving their health exists. Or don’t even consider it as a possibility.
It is a bit scary to write and share this, as sometimes people with fibromyalgia will be offended by my belief that we can improve. And I truly don’t like to offend people. One of my worst fears is offending others.
Yet, I have written and posted this because I need to share my experience and hopefully plant some seeds of hope that you can improve. You don’t have to go down the road of progressively getting worse. You can turn around your health and improve.
I know there are options
My fibromyalgia symptoms began in my early childhood. I was told the pain I was experiencing was normal, so nothing was done. It also created the belief in me that being in pain was the norm.
It wasn’t until after I graduated from college that I realized that what I experienced wasn’t the norm. I had taken a backpacking class and the final session was to backpack up the side of a mountain and camp overnight. Halfway up the mountain, I had to stop because my shoulder was in such severe pain. I was carrying a camera on that shoulder. I stopped and watched the other people continue up the trail. In that moment, I knew that there was something very different about me. That the pain I was experiencing was not normal. No one else on that trail with me was in severe pain.
My fibromyalgia started in childhood and slowly but progressively got worse. By three years out of college, I was in severe pain, depressed, anxious, severe IBS, fatigued and had severe interstitial cystitis and suffered from insomnia. It was so bad that I ended my job as a CPA to find solutions to my health.
Over the next 40 years, I studied and immersed myself in holistic health and spirituality.
I was really sick. For 14 years, from age 34-48, I lived with my parents as I couldn’t work enough to support myself.
And I have improved. Greatly.
Many of my fibro symptoms are gone completely. Others are mild. Some I am still working on. Here is a summary:
Mild: Pain, depression, anxiety – comes and goes.
Rarely: Brain fog
Gone: Insomnia, fatigue, interstitial cystitis
Some symptoms that came on later: itching and burning skin was very severe for a while-now rarely occurs and if so, very mild.
Right now, the IBS is the greatest challenge, but improving.
I have come so far since those torturous years when I was living with my parents. That is when the pain, fatigue, insomnia, depression, and anxiety were at their worst. I literally wanted to die. I didn’t want to continue living in so much pain.
I am not completely free of fibromyalgia. It still limits me. But I am soooooo much healthier. One of my biggest problems is that now that I can do more, sometimes I push myself too much, which can flare up old symptoms. But, as I balance my work with play and rest, I don’t flare up as often.
All this is a result of what I learned and experienced in my studies of holistic health and spirituality. They go hand in hand.
It is Your Choice
You get to choose. With a strong intention and commitment, you can improve your health. It can be a challenge, but it is worth the effort.
5 Stages of Moving Beyond Fibromyalgia
Below is an article that I wrote several years ago and re-posted last year. I am including it here as a reminder of what is possible. If anything, I invite you to consider the possibility that you can improve your health with some guidance, intention, and commitment.
5 Stages of Moving Beyond Fibromyalgia
My goal in life was to move beyond the experience of fibromyalgia.
As I moved through my experience of living with fibromyalgia, with that as my goal, I noticed 5 distinct phases that I went through. They were, in essence, 5 steps of empowering myself in relationship to fibromyalgia. These steps are:
- Understanding Fibromyalgia
- Living with Fibromyalgia
- Managing Fibromyalgia
- Rebuilding your Health
- Life beyond Fibromyalgia.
Understanding Fibromyalgia
In the simplest of terms, fibromyalgia is an experience of multiple physical, emotional and cognitive symptoms including (but not exclusive) to widespread pain, heightened and painful response to pressure, fatigue, sleep disturbance, joint stiffness, difficulty swallowing, constipation and irritable bowel syndrome, bladder abnormalities, numbness and tingling, brain fog, depression, and anxiety. The exact symptoms and severity of symptoms vary from individual to individual. Fibromyalgia is estimated to affect 2-4% of the population and effects 9 women for every man. The term “fibromyalgia” literally means “muscle and connective tissue pain”.
It is said that there is no cure for fibromyalgia. Fibromyalgia is not fatal. My experience is that the symptoms do increase over time if not managed and addressed properly. Diagnosis can be difficult and even after diagnosis, finding a practitioner that truly understands fibromyalgia is rare.
Treatment for Fibromyalgia
Generally medical treatment for fibromyalgia is management of symptoms via medications and lifestyle management. In the holistic arena you will find acupuncture, herbal treatments, “miracle cures”, chiropractic treatments, diet and exercise recommendations galore, and many countless modalities. All of these have their place.
Personally I think that rather than focusing on treating or healing fibromyalgia, we need to focus on healing the individual. I believe that the underlying cause of fibromyalgia is different for each person so the idea of healing or treating fibromyalgia or the individual symptoms may bring some temporary relief, but do nothing to create permanent or lasting change. Treating symptoms only can detract the attention from identifying the underlying cause and thereby making real progress.
Living with Fibromyalgia
Living with fibromyalgia is a difficult endeavor. In my experience, the symptoms can change radically from day to day, leaving me unsure of what I would be capable of accomplishing on any given day. Fibromyalgia can impact every area of your life including career, family, relationships, hobbies, finances, and self-esteem.
It is difficult if not impossible for someone who does not have fibromyalgia to understand what you are experiencing. Many times I heard, “it is all in your head”, “everyone experiences pain”, “you’re just too sensitive”, or “just get over it”.
People rarely understood why I couldn’t keep up with everyone else or often had to say, “I am just going to stay home” simply because I needed to rest. Many times, I would push myself to do more than my body could handle, and end up in extreme pain and miserable.
Truthfully, it took me years of suffering before I understood how to live with fibromyalgia. Trying to push through isn’t helpful. In the years that I did that, I did more damage to my health and paid dearly for it.
Managing Fibromyalgia
Slowly, I began to listen to my body and understand the limitations that it imposed on me. When I fought the limitations, I suffered. As I learned to respect my body and the messages it sent me, I began to be able to manage my symptoms so that they were tolerable and that I could maintain a consistent level of functionality.
By listening to my body, I found foods that were more supportive and exercise routines that worked for me. I discovered how much sleep I needed and what would disturb or enhance my sleep. I found the kind of regular schedule that would support me in keeping the symptoms at a tolerable level. I discovered what kinds of activities I could engage in and others that I needed to avoid. I could tell when my emotions and anxiety were spiraling out of control and learned ways to pull back to take care of myself. I found tools that helped my body to relax and release pain and tension.
As I listened, I began to hear more. I became aware of unresolved emotional experiences and how to release them. I learned to listen to my mind and become aware of the kinds of thoughts I fed to myself and then began to slowly re-script my inner dialogue. I learned to how to take care of myself the times that I was severely depressed. I learned how to take my power back and communicate effectively with others.
I think I have learned more from listening to my body than from any book I have ever read. Although, the outside information was valuable and if I asked for it, I would receive information that was helpful to me. I found that most medications did not work for me so I chose a more holistic approach.
(This doesn’t mean that you can’t or shouldn’t take medications. Sometimes they are helpful in managing symptoms while releasing underlying causes.)
Rebuilding Your Health
Once I accepted the limitations that fibromyalgia imposed on me and learned to manage my experience, I was in a more stable position. From there I could begin to research and experiment and look for the underlying cause of my symptoms.
I had the belief that I could heal myself and I needed/wanted to do that. With this approach, I have been able to root out the underlying causes of my fibromyalgia and put myself on the road to healing. Finding the underlying cause was one step, applying the needed protocols to my life a second step and then re-balancing, detoxing and rebuilding my body was the third step.
Out of my own experiences, I have pulled together the tools and methods that work most effectively as well as an understanding of how to evaluate others as to how to guide and support their exploration.
Life Beyond Fibromyalgia
Fibromyalgia can be an all-encompassing experience. It can become the center point of our life. While dealing with fibromyalgia, it can be helpful to remember that it isn’t the whole of our life or the whole of who you are. We need to find outlets for ourselves and our expression that bring love, peace and enjoyment into our lives while on the journey to healing. We also can look beyond the experience of Fibromyalgia and see or envision ourselves whole, healthy and fulfilled.
As a result of having fibromyalgia I explored areas of myself and experiences in my life that have brought me great peace, contentment, empowerment and inner strength. I am a more whole and complete person as a result of my illness. I have learned a great deal about human behavior, health, wellness and spirituality. I have found my own unique voice and each day give way to my authentic self. This is a result of the inner work that I did along the way.
I am grateful for this and love the person who I have become. Healing all parts of myself, physical, emotional, mental, expression and spiritual, became the journey. That journey will continue as I grow and evolve.
My wish for you
When I talk with women who have fibromyalgia, I can fully relate to their pain and their experience of fibromyalgia. I have no doubt of the real pain, physical, emotional or mental that they experience. I was there. While I didn’t experience exactly where you are and what you experience, I know what it is like to be in massive pain and suffering on all levels.
My wish for you is that you find your unique path to the experience of Beyond Fibromyalgia. My commitment to you is to share my experience and what I have learned in my long and agonizing journey with fibromyalgia. I often think that if I knew then what I know today, I could have saved many years of pain and suffering.
I will continue to offer free information and reasonably priced offerings to assist you on your journey to wellness.
Feel free to ask for assistance. You can reach out through my contact form.
May you be on a journey to beyond fibromyalgia,
❤️Bindu
