I have struggled with chronic pain and fatigue since 2005. I have received various diagnosis – periphereal nerapathy, myofascial pain, and fibromyalgia from various doctors. In 2015 I had a concussion that has created additional issues such as migraines, memory problems and visual sensitivity.
I live in the Northwest with my two daughters and two cats. I enjoy reading, writing, researching, yoga, and spending time with family and friends. I work part time as a compliance assistant and a professional visitation supervisor.
Many of my physical problems began in 2005. I had a cold virus that expanded into other symptoms. The cold turned into bronchitis, Asthma like symptoms, and general fatigue. I then began noticing tingling sensations in my arms and legs. A few months later the tingling sensations went throughout my body and a chronic flu like pain was more evident. In addition, I felt a burning sensation down my spine that intensified with a light touch, and pain in my knees. I probably had the low grade fevers, but didn’t notice this until a later date.
My physical symptoms impacted many of my activities. I found that it was difficult to sit or stand. I had less energy to be around crowds of people, and any amount of stress would make my pain higher. I spent a great deal of time laying around, and had to find extra care for my young children. My husband and I had to put our plans on hold, and I had to cancel a trip to London to visit family. Though it was discouraging, I still had hope that a doctor would find the cause and make me well.
Over the years I became very involved with the medical world. I saw more than 17 doctors, tried at least 13 medications, had a variety of exams, and used numerous natural remedies to attempt to ease or take away the pain. Some of the potential causes, were extremely frightening, the uncertainty made me vulnerable to many possibilities from greater disability, to a shorten life span. On the other hand, hearing the words “normal” felt like a curse that provided no answers. I was used to being able to solve problems, and this was a problem I couldn’t fix. I felt helpless and alone.
In the beginning, I felt like my body was falling apart, and I had no control to stop it. I had been in top condition before my illness, recently completing a 13 mile run. As the weeks went by without recovery, my ability to be physical was decreasing. I became more sporadic in my activity, and more depressed in my mental state. The little energy I had was spent caring for my young children, and even that was difficult to do. I found some relief laying in our baby pool, resting while the children played.
I was overwhelmed by the pain, the uncertainty and limitations. I questioned my own actions, and whether I was the cause of my illness. Some insensitive people reflected that it was mental, or doubted my pain existed. I continued to see doctors, and do research, but found there were so many suggestions on healing, and they often contradicted each other. I hoped that time would heal my body, if I only did the right thing. I found myself going back and forth like a tree in the wind, between optimism and spirituality to being self focused and self destructive. More and more issues came to the surface with so much down time of reflection in which I kept attempting to escape.
I found myself gradually making a shift in my understanding and beliefs about myself and my body. I sought to accept the possibility that I may never physically heal. I looked at my values and my relationships, and saw how the quietness brought many blessings along with the struggles. I was becoming more compassionate, honest, and humble than I ever had before. I learned to work more with others, as I couldn’t do everything myself. I created new goals, such as writing and researching, that fit better with my changing body. I have learned to be more flexible with activities, substituting more yoga, walking and soccer than running or aerobics. I found myself more engaged with the people around me as I slowed down, and appreciated the good days. Though the struggles were still there, it was also balanced by many positive experiences and new directions that opened up to me because of my illness.
I am extremely grateful that my life is filled with so much blessing, in spite of my pain and fatigue. I hope that my journals will help others find fullness in a whole new way. Though I wish I didn’t have the pain and fatigue, I also am aware that I would be a different person without it.
I wrote this intro before I had the post concussion syndrome. This has added to my challenges, but also made me aware of how my brain continues to rewire itself, often create strengths at a different level. I see how with each struggle, I can relearn things in different ways, making me see things I might not have before. I like the person I am today, and those that walk this journey with me.
Have you been tested for Lyme by Igenex lab or been seen by a Lyme literate doctor? Your symptoms are identical to Lyme and coinfections. Unfortunately most people rule it out early on and have a “mystery illness” because the tests are so poor. That is why it takes a clinical diagnosis. Lyme should always be considered in a Lyme endemic area. Good luck!
Yes, I have had several Lyme’s test done and been seen by a doctor who specialized in Lyme’s disease. The symptoms are similiar so it was something I considered. I spent a lot of time researching various conditions to understand my own condition and to see what might be helpful in managing my symptoms and potentially curing myself. I think it is always helpful to keep an open mind of what could be the cause, as new symptoms may lead to a new direction of causes. Thank you for sharing.
Thank you for sharing your story. I am truly sorry to hear of your suffering. I can completely empathize, for i have lived with chronic pain for 11 years now. I had to leave an amazing life in SF and move in with my mother in Oregon. As beautiful as it is here, my situation is very humbling. I love my mother so much and am truly blessed to be able to have connected with her again after so many years apart, but to live at home at 45? Really? This is not what i planned. So yes, we must be flexible and reconsider our goals within our situation. Oh so much to share about this subject. I just want you to know you have a pain sister in your home state.
My best to you and your family.
As you can see, I didn’t see this comment before, and haven’t posted awhile. Wow, that is really tough to have to move in with your mother, and to lose your independence. Would love to hear more of your story. If you are interested can send me an e-mail at firstname.lastname@example.org.