WHAT’S YOUR TOP FIBROMYALGIA QUESTION?
I had a strange thought the other day. I know that those with fibromyalgia and other overlapping conditions are “my tribe,” but … when it comes to the frustrations of healing from fibromyalgia, could I be out of the loop?
You see, I’ve been well for many years now – almost a decade – and maybe my memory is fading when it comes to the struggles I had to overcome chronic illness. I still have fibromyalgia, mind you. I’m subject to the familiar joint/muscle pain, digestive disturbances, cognitive dysfunction, etc. that comes with a syndrome such as fibromyalgia. I just don’t experience these symptoms every day. I also experience them to a lesser degree and oftentimes forget about them entirely. Of course, that type of forgetfulness is a good thing!
So … the other day I wondered about the hurdles I’d faced as I tried to get well. Are they the same for those dealing with fibromyalgia today?
In many ways, finding a diagnosis was the hardest part. It took me about 15 years (and, I had to figure it out myself). I suspect that while some patients may still struggle, at least most doctors are aware of the condition these days.
Here’s what I considered to be my burning questions when I was newly diagnosed. These are the things that no one seemed to be able to answer. I’ve listed them in no particular order.
1 – I see so much conflicting info! Who has the “real scoop” and how do I know who to trust?
2 – I know nutrition is important, but where do I start? It’s all so confusing!
3 – How can I make fitness work when I can’t even stand without a cane?
4 – How can I ever get well without a good night’s sleep and how do I “make” myself sleep?
5 – How can I get my family to understand what I’m dealing with?
6 – How can I continue to work and support my family?
7 – How come I feel “all jacked up” yet I have NO energy?
8 – What can I do about this horrific chest pain (or knee pain, or neck pain, etc.)?
9 – What can I do about my all over pain and joint/muscle pain?
10 – What do I say to people who tell me I look great when I feel like the walking dead?
11 – Does fibromyalgia (and/or other chronic illness) just keep getting worse?
12 – Why do some treatments work for others but not for me?
13 – How could wrist/knee pain, toothaches, headaches, IBS, and fibrofog all be symptoms of one condition? Am I missing something? Is there something else wrong with me?
14 – Is fibromyalgia a stepping stone to a “worse” disease?
15 – Is there such thing as a cure?
15 – I can’t stop stress, so how can I address that problem?
16 – If fibromyalgia isn’t an autoimmune condition, then why are they always talked about together? What’s the deal?
These questions represent most of the concerns that twirled around in my head as I first sought answers. I felt like a walking hurricane of worry (which made my symptoms worse, by the way). These were the bulk of my worries.
What do you think? Am I now out of the loop?
Are these your worries, too? Are these the same questions that newly diagnosed patients ask today? Let me know what YOUR top concern is! Is it #5, # 2, or #4? Or is your top concern not even listed above? Let me know!
I look forward to addressing these questions in the summer months ahead. Feel free to leave comments and I’ll incorporate YOUR questions into my future posts!