If you’re a fibromyalgia pro or a newbie to the world of chronic pain and illness, you’ll soon discover that you visit doctor’s offices a lot. As in, I know more about my primary care doctor’s grandchildren than I do my about my own family. When you walk into their offices, you’ll feel like it’s become your second, third, or fourth home (considering how many doctors treat you). We visit the primary care doctor (PCP), rheumatologist, neurologist, cardiologist, pain management, chiropractor, massage therapist, yoga instructor, nutritionist and any other doctor or alternative medicine approach that you think may help.
I’m fortunate in that my doctor list is quite small, but that’s mostly because I fight going to new doctors. If I don’t have to, then I don’t want to. But that’s just me being stubborn. In reality, I have to start seeing a new rheumatologist and potentially a neurologist. My PCP doesn’t feel comfortable enough with fibromyalgia to manage my treatment. She a wonderful doctor who sits with me, takes her time, and truly listens to me, but she doesn’t know enough about fibromyalgia in particular (her words-at least she is honest).
Now that I have to branch out to other doctors, again, I’m finding it hard to keep track of everywhere I’ve been, my treatments, moods, pain levels, medications, and more. Roll out the carpet for the symptom journal!
Fibromyalgia is different for everyone. This is one of the things that makes treating it so difficult. The symptoms are many and they can fluctuate like crazy — one day you feel pretty good, the next you can barely walk, the next you’re OK physically but just can’t concentrate or communicate effectively. How can you and your doctor figure out what is going on with you?
What is a symptom journal?
A symptom journal is a journal where you record your symptoms from fibromyalgia. Why symptoms? Because fibromyalgia is much more than just chronic pain. It’s important to track all the symptoms, not just the pain.
A symptom journal is like a personal diary, but you are recording your pain and symptoms on a scale from 0 – 10 when they occurred, what body part of the body did you feel pain or your increased pain, the activity your were doing at the time, what you did to relieve your pain or symptoms by taking medications or other therapies, and then rating your symptoms in another hour to see if the they were relieved by your medication or therapy.
By keeping daily track of how you felt and what you did, you may be able to find patterns or identify triggers. Maybe you’re most tired the day after you go to the grocery store, or perhaps your flare-ups regularly start 14 days into your menstrual cycle. A journal can help you and your doctor spot these kinds of things when you might otherwise miss them.
Keeping a symptom journal.
The most important thing to keep in mind when starting a symptom journal is to keep it simple. If it only takes a few minutes to fill out you’re more likely to stick with it when you’re feeling your worst. Also, while a ton of different forms and styles are out there, you should tailor the records to your own situation and keep the information relevant to you.
Right now, I have a basic one subject notebook, and each day, I record what medications I take, food I ate and what time I ate it, rate my pain and fatigue on a scale of 0-10 (with 10 being the worst), time I wake up and go to bed, activities, weather, and mood. I also use the same notebook to take notes and remember questions at doctor’s appointments.
Guess what? I’m designing a fibromyalgia symptom journal!
It’s a work-in-progress right now, but when it’s finished, it will be posted here for your use! But it means that I need your help.
What do you think is important for a fibromyalgia symptom journal? What should we record in our symptom journal?
What do you think it should look like?
How big would you want it to be? Pocket size? Notebook size? Or something different?
If you have a symptom journal, what type of journal do you use? What’s your system?