The Fibrochondriac

Self-managing fibromyalgia is not something a doctor will normally explain to you, but it’s one of the best things you can do for yourself. This is one the tools that I found to be very helpful. I hope some of you might find this useful.

In looking back over the past several years I’ve noticed three distinct stages of my “fibromyalgia experience” (ummm…how else do I phrase that?!). The build up; I had, what was for me, a very stressful job, with lots of drama. The stress just kept building up, with no relief. Then the crisis; I had a traumatic event. A honeymoon cruise triggered the Mother of All Flares. Even good stress will getcha, I guess. I survived that, barely, and recovered, somewhat.

 After the Mother of All Flares backed off a bit the maintenance stage began. I got the bright idea (finally) that my actions and thoughts had a direct impact on my symptoms. Once I came to terms that I was chronically ill, I was amazed  that I could be actively involved in the care and treatment of my fibromyalgia. Not only could I be an active participant with my medical decisions (as long as health care providers were listening!) but I could also live my life in a way that would lessen the pain and the flares…or in medical-speak; practice good self-management of my fibromyalgia.

 I started getting the big picture of self-management while taking an online “self-help” course through CFIDS and Fibromyalgia Self-Help program.The creator and director of the program, Bruce Campbell, Ph.D.,developed Chronic Fatigue in 1997 but has since recovered by using the self-management tools he describes in these classes and his book “The Patient’s Guide to Chronic Fatigue Syndrome and Fibromyalgia” I don’t know that recovery is a reasonable expectation, but the things I learned in this class gave me tools to use to help me feel better.

 How does a person self-manage fibromyalgia? You need a lot of tools in the toolbox! The goal of self-management is to reduce severity of fibrofog, pain, anxiety and reduce the number of overall flares. In order to do that, it’s necessary to find out what causes the symptoms to worsen.

 One of the tools in the toolbox is tracking (also called charting or logging). For me, that meant keeping track of what was happening in my life. Not just tracking symptoms, but what I was doing, feeling and eating. Who I was with, where I was at, and when. Who, what, why, where and when. Did I cover them all? Getting the answer for those questions is one of the basic tools of journalism. So I was journalist covering the story of me. Cute.

 There are sooo many ways to track this stuff. If you do a search online you can find many tracking methods; forms to download, online programs and more. The simplest way for me was to find a clean notebook, write the date on the top, along with the words, “doing–eating–symptoms” to remind myself what I was going to be writing.

 Each time I made an entry I would write the time on the left hand side of the paper. I found a way to set an alarm to go off every hour on my cell phone (and most of the time I remembered to turn it off when I went to bed). When that alarm went off I’d write down everything that had gone on during that hour. What I was doing, where I was at, who I was with, what I ate, what symptoms I was having and the level of symptoms I was experiencing in that time period. I’d also track my sleep quality and hours.

 Tedious, no? You betcha! And it made me feel like such a hypochondriac (yeah, that’s where I got the name Fibrochondriac) for being so, what I felt was, overly involved in myself. Kinda like checking out the tissue after you sneeze. Icky!

 Before I started tracking all that important information, I felt like my flares were random and my fibrofog would just come out of nowhere. After tracking all my who what why where and whens, it made more sense.

To be honest, I didn’t keep faithfully tracking on paper like that for that long. But I did begin to see a lot of patterns after I had enough data to analyze. For instance, I learned that I was the most coherent between noon and 4pm. I learned that just being around certain people would consistently cause a flare. I learned that being in a crowd wore me out for several days and if I didn’t take breaks I was going to have a flare.

 And whenever I have odd symptoms (like the swelling on the left side of my rib cage…or the Reynaud’s syndrome? That one really caught me off guard, I’d never even heard of it.) I’d go back to tracking to pay attention to what was going on, tracking it, and seeing if something I was doing might have caused the flare.

 I had to start tracking again after I first moved down to San Diego. I was feeling good so I’d do too much and flare up. Tracking helps me “measure” what I can reasonably do without causing a flare. It’s an imprecise tool in my hands…I can’t always tell and sometimes I’m really wrong, but it is better than feeling at the mercy of the flare!

 This is only one tool in the toolkit, but it’s a biggie. It’s a pain in the tail to have to write so much detail down, but when you take the time to analyze it…it’s amazing almost like a big lightbulb appears overhead!

 Questions? Did I leave anything unclear? If you’d like to tell me about it in the comment section I’ll be happy to answer.