The single most valuable piece of advice I have for how to survive life with fibromyalgia is this: Keep good records. Document everything!
No matter how convinced you are that you’ll never forget the horror of some medical nightmare you endured, the mind has a way of blurring the details over time. You will forget the name of the drug that made you vomit, the name of the doctor who was rude and nasty, the name of the physical therapist whose exercises worked like a miracle.
Occasionally, I question the wisdom of this practice. As a follower of Deepak Chopra, I firmly believe in the Law of Attraction. It says that you attract into your life whatever you dwell upon. Just as you can draw positive things into your life by using focused attention, you can easily encourage negative things. My concern was that spending time writing about my illness each day was the equivalent of dwelling on it. Perhaps my record-keeping practice was having a negative effect?
Last year, I suffered for many weeks with occipital neuralgia before it was almost miraculously cured with an extremely painful injection. Within an hour my pain was reduced from a 9.5 out of 10 to a five. Within eight hours, the pain was completely gone. I wrote all of these facts down in my daily medical journal.
When my head began to ache last week, I consulted last year’s journal. It reminded me that I had been required to see a physical therapist before my physiatrist would consider administering a trigger point injection. I was also reminded that a third attempt to tolerate even a tiny dose of gabapentin for nerve pain resulted in severe nausea.
In addition, I saw how much time it took to get each of the referrals that were needed. Most importantly, I saw that my pain level (recorded each day on a scale from one to 10) had quickly spiked to a nine after hovering between a six and a seven for nearly two weeks. Given this information, I’ll be on the phone first thing to begin scheduling the necessary appointments.
Because of my journal, I’ll know who to call, how long of a wait to expect for an appointment, and what the next step will be. No surprises. I was also reminded that heat and exercise were helpful, ibuprofen was useless, and that a stronger pain medication was definitely needed.
It only takes a minute to scribble a few notes in a journal every night before going to bed. I’ve decided that any risk of danger from dwelling on my symptoms is well worth the repeated helpfulness of the information I’ve recorded.
My newest book, “More Than Tender Points: A Fibromyalgia Memoir,” has an entire chapter devoted to the different kinds of information that are helpful to record as well as suggestions on how to record it. (It also includes the data that are absolutely essential for filing a disability claim in the future.)
We all know how fibro fog limits our memories — even under the best of conditions. However, when in the midst of a medical crisis, anything more than my own name is difficult to remember. That’s when having a daily medical journal is especially important.
It gives me peace of mind to know that the important stuff is written down. If it is, then it’s OK to forget it. I have referred to my journals many times. Any amount of effort it took to create them was definitely worthwhile. After decades of living with fibromyalgia, my motto has become “document everything.”
Note: Fibromyalgia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fibromyalgia News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to fibromyalgia.