Let’s just open up with the disclaimer that the thoughts and opinions expressed are my own and I’m not licensed to provide you with anything really, except maybe a ride in the car as I do have a driver’s licenses. Even still I can’t actually drive right now so I guess you’re out of luck there too. 😉
When I was first diagnosed with Chronic Fatigue Syndrome (CFS) by the Rheumatologist my original PCP said that he didn’t believe in CFS and that his school of thought was that it was all Fibromyalgia (FM). My gut response was ARE YOU KIDDING ME? Let me tell you after years of working in legal compliance I have the poker face to end all poker faces so I just sat there straight faced and listened. My gut reaction came from this: I was a fully functional, working, exercising, active adult for 10 years with FM and now I was none of those things.
Back in 2004 after a round of Cipro I came down with an odd flu, which ended up being diagnosed as FM. Come to find out from a nurse practioner, last year I think, that there is a higher than normal incidence of Cipro users and FM diagnoses, but that’s for another blog. Honestly, FM didn’t slow me down. I learned to live with the symptoms. I learned that stress, caffeine and sugar made the pain considerably worse. And I found that avoiding those things and walking really helped with the pain. I did experience a little fatigue but it was fatigue where you could rest for 20 to 30 minutes and then keep going. And that was it, beside the seemingly constant neck pain, which I’ve read is common for FM sufferers I didn’t miss a beat. Don’t get me wrong I knew it was there, I was in pain, but I’ve had pain on and off my whole life so I just kept chugging along.
Which takes us to July 2014, wherein I felt ill, like a flu, but like my body had been drained of energy and symptom after symptom started to appear. The Rheumatologist said it was textbook CFS. I had no idea what that even was. I went home to research and sure enough, I fit the bill. Here’s the thing though folks, this was not the same as the FM I’d previously experienced, not even close. The fatigue could not be fixed with a 30 minute nap, or any nap, or any amount of sleep. In fact I have never felt as good as I did pre-illness. And the pain, it’s not the same either, not even close. The pain with FM was in specific pressure points mixed with neck pain. The CFS pain travels around my body, and it throbs, burns, stabs, tingles…basically all of the above. As I’ve stated before the symptom list is too long to list, but with FM there were two things, pain and fatigue, but now with CFS there are literally 132. Yes, you read that correctly I have 132 symptoms that I did not have before I got sick with CFS. I’ve learned to dismiss, almost on a daily basis, things that would sendsome straight to the ER. I’m not bragging or trying to scare anyone. I’m just saying in my personal experience FM and CFS have not been the same.
I wish I had answers of what the differences are or what causes them or if they are even related. There is a lot of information on the internet of current research being conducted. I guess the best news is that even as you read this people are trying to figure out the answers we all are looking for. Although I strongly suspect some sort of EBV -> MONO -> FM -> MECFS relationship, I don’t honestly know. I’ve been diagnosed with them all, in that order. The EBV felt a lot like the MONO and the MONO felt a lot like CFS except it quickly, by comparison, tapered off. I know we all have different symptoms and experiences and I’m not trying to categorize or diagnose anyone. My whole point in writing this blog was because there are a lot of people on social media who say they have FM but they seem to have CFS symptoms and I can’t help but wonder if they have been misdiagnosed. This concerns me because with FM they tell you to exercise (because light exercise actually does help FM) and with CFS exercise may make you more ill. If you’ve been diagnosed with FM but you experience post exertional malaise, please be careful.
Chronic pain and fatigue are common symptoms of both fibromyalgia and chronic fatigue syndrome. The difference is that, in fibromyalgia, fatigue often takes a backseat to debilitating muscle pain. In chronic fatigue syndrome, people have an overwhelming lack of energy, but also can experience some pain.
I’ll close by saying that from where I’m sitting it’s not the name, EBV, MONO, FM, CFS, ME, that matters. I know people get all fluffy about the names and I understand that that is important but even more important, in my opinion, is that so many people are so very ill and so many of those people may or may not be receiving proper care instructions. I’ve read that the treatments for CFS and FM are virtually the same and I’ve experienced that first hand. This makes no sense to me as these are two very different illness or phases of an illness or something. All I can know for certain is what helped me with FM makes me desperately ill with CFS and it is deeply concerning to me that there are FM patients out there pushing themselves to exercise and be active when they could potentially have CFS. So please listen to your body, and do your research. Someday, hopefully sooner than later, we will all have the answers, the causes, the cures, and the tests to confirm we are in fact inflicted with one illness or another. Until then, take good care my fellow warriors, and always, always trust your instincts. You know what’s best for you.
Thank you for reading along and here are a few of my little watercolors from the past week as I continue to follow along with World Watercolor Groups daily prompt on Instagram. If you feel like sharing your thoughts or experiences with any of the above please feel free to comment or message me.