After living with Fibromyalgia for over 10 years, I’ve come to realize that I could have and should have done certain things, right from the beginning of my diagnosis. It would have made my life so much easier. Unfortunately I learnt this the hard way, but at least I’m able to share this advice with you and hope that it will make your life a little easier.
One symptom that we suffer from is Fibro Fog. This is bad enough but eventually you will lose much of your short term memory. I think Fibromyalgia itself affects your memory, but a lot of the medications we take do so too. I am at the stage where I can barely remember what I did the day before. It’s bizarre! You very quickly learn to write everything down.
For this reason, one of the things that I really wish I had done, was keep a Daily Fibromyalgia Tracker. This can be done manually (I will provide you with templates) or it can be done with an App on your phone. Which ever method you chose, this is an absolute must!
Keep everything written down. This includes your daily pain levels, possible triggers, how bad your fatigue is, are you experiencing a flare, and how bad is your fibro fog. Along with this, always note all medications that you are taking. This includes medication that you were taking and have now stopped and the reason why. List new medications and when you started them. Trust me you will be grateful that you did. Early in the diagnosis stage, doctors tend to use you as a ‘Guinea Pig’ when it comes to medication. This is because what might work for one person, may not work for the other. Your medication will possibly be tweaked numerous times.
After 10 years, my medication is still sometimes changed here and there. My doctor will ask me whether I have tried a certain medication and unfortunately, I just cannot remember. I will also have tried and stopped a medication due to experiencing side effects, but as I never wrote it down, I cannot remember what side effects I experienced. So you may end up trying the same medication again unnecessarily.
Keep a lists of all treatments you have tried, whether it be Trigger Point Injections, Homeopaths or Acupuncture. Write it down and note whether it was effective or not.
Keep all results of any tests that you have done. This will basically be your ‘medical go to book’. Keeping a record of your pain levels is so important as you can track them and perhaps match them up to a trigger, whether that be stress or anything else. Track your mood and depression. Keep track of which doctors you have seen and for what?
It may sound like a lot to do but once you get into the habit of doing it, you will be very glad you did. This ‘medical book’ of yours will be kept for the entire duration of your illness. You will be able to refer to it often.
Under the Resources section, I have included 2 separate templates. One is a 1 pager which will track the basics on a day to day basis. The 2nd is a 2 page document which you can print double sided. This contains the basics and then a few more items to track.
If you chose to use an App, make sure that it keeps your records properly. I am currently trying out an App called ‘Pain Tracker LITE’. This is the free version and if I find that it does what I want it to do, then I will pay for the ‘Pro’ version. I like this app as you are able to print reports from all the information tracked. You can even print comparison reports which is quite nice.
I hope that you take my advice and it turns into a beneficial document for you.