“So how long have you been dealing with this?”
“With fibro? A year.”
“Have they been able to figure out anything to help?”
“No, not really. I’m still trying to figure that out.”
Fibromyalgia has basically become a word synonymous with every day life. I forget that there are many who have never heard of it. I’m ready to share this story. I want to acknowledge all of the warriors who have persevered for many years with chronic illness. You give me hope to keep on going.
I cannot believe it has only been a year. I am currently at the point where I can’t imagine life without fibromyalgia.
To those who are not familiar with fibromyalgia, here’s a quick summary. Fibromyalgia is a chronic illness of the nervous system. There is no specific diagnosing test for fibromyalgia. Rather, it is diagnosed by ruling out every other possibility. The cause of fibromyalgia is unknown but theorized to be related to stress, trauma, hormonal imbalances, various allergies, digestive issues, etc. There is also no cure or determined treatment plan for fibromyalgia.
This time last year, I was dealing with the symptoms of fibromyalgia, but I had not been officially diagnosed. There were still months of blood tests, heart x-rays, back x-rays, and specialist visits ahead.
When I first received my diagnosis, I was so relieved that my pain had a name. It didn’t hit me till a few month later that I hadn’t grieved all the losses this illness has caused.
For me, fibromyalgia looks like varying full body aches and pains (ranging from a scale of 1 to 10), brain fog, trouble with memory, and constant fatigue. I also have been previously diagnosed with PTSD, OCD, and panic disorder. I’m learning that if you have one chronic illness, it seems you continue to collect more.
It has taken a while to grieve my losses. I used to be an avid hiker, but a ten minute walk can cause a flare-up. I’m used to generally being articulate with my words and having a spot-on memory. Now, I struggle mid-sentence to find the word I was going to use. In the past, I considered myself a motivated individual. Now, I fight fatigue to accomplish even the smallest of tasks.
I’ve also had to grieve the lack of resources and answers for fibromyalgia. There are only a few medications, and I have not responded to any of them. Most treatment or maintenance of fibromyalgia looks like avoiding certain foods, massage, yoga, acupuncture, regular exercise, mindfulness, meditation, and taking a heating pad everywhere. There are new things being tried like hypnosis and flotation therapy.
What is often most challenging is the actions that are most likely to help with fibromyalgia are the last thing I want to do. How do you do yoga when you are so tired? Who wants to exercise when their in pain? Most days, I just want to stay in bed with my heating pad, tens unit, and weighted blanket.
I say all of this to say- I’m still in the middle. I’m somewhere between acceptance and resilience. I know there are choices and changes I can make. I still need to learn how to get back up after I fall down.
Thinking back, I wish someone would have given me permission to grieve all of my present and future losses. The difficult journey ahead, in many ways, is still a loss. It is the grieving that has taught me the self-compassion I need for the journey ahead.