Since I’ve been neglecting PubMed and recent medical research into fibro, I decided to do a general search: fibromyalgia cure (articles published in 2021-present). A few came up:

Fibromyalgia Pain and Depression: An Update on the Role of Repetitive Transcranial Magnetic Stimulation. Abdul Haque Ansari, et al. ACS Chemical Neuroscience (2021). 12: 256-270. “While there is no permanent cure for fibromyalgia, some interventions are available with multiple side effects” (emphasis added).

Influence of Multidisciplinary Therapeutic Approach on Fibromyalgia Patients. Simona Patru, et al. Experimental and Therapeutic Medicine (2021). 21: 528. “There is no specific cure for fibromyalgia (FM), but combined non‑pharmacologic and pharmacologic treatments may mitigate symptoms and improve quality of life in patients.”

Pioglitazone Improves Skeletal Muscle Functions in Reserpine-Induced Fibromyalgia Rat Model. Fatma E. Hassan, et al. Annals of Medicine (2021). 53: 1033-1041. “There is no definitive cure yet for FM-related health problems.” (But, there is hope for rats!)

Effects of Resistance Training on the Mental Health of Patients with Fibromyalgia: A Systemic Review. Guilherme Torres Vilarino, et al. Clinical Rheumatology 2021. 40: 4417-4425. “As there is no cure, several treatment alternatives have been investigated, including the practice of resistance training.”

There was one other, but it turned out the keyword “cure” actually hit on one of the authors, Dr. Cure, apparently. But what a great name for a doctor, huh?

Reading through these abstracts is definitely not studying the current research, but it does give an idea of where research is going. Mental health of fibro patients – they’re working on that. Mitigating symptoms… things like that. Except for the Pioglitazone stuff – that looks like a new potential medical management. Something to watch for in the future. Of course, I have to stand by not taking meds, at least for me for now. We’re all different, we all know that. Taking meds is tricky. So often my body gets used to them and their effectiveness runs out or my body just out-and-out rejects them. When the side effects are worse than the condition, then go slow.

But here you are – 2021 PubMed articles that reference a cure for fibromyalgia. Still none. But that’s okay. We got this.

Recently a friend contacted me about her daughter, who is nearing 18 years old and who has been having chronic pain for “a couple years now.” Since my chronic pain started at about 15 years old, hearing about her daughter took me back. Way back. Like 45 years back! I don’t remember a lot of things about my childhood. I know people who can remember elementary school friends. I remember the two boys I had crushes on in elementary school. And two teachers. And taking a chicken gizzard to school for show-and-tell. It was ill-advised and stuck in my core memories. But I do remember when the doctor visits started, and I remember the doctor visits before the chronic pain started. I remember asking a nurse why I had to worry if I bumped my breast and got a bump. I remember getting my finger poked for a blood sample when I was so sick it didn’t even hurt. I remember being surrounded by a “gang” of doctors all staring down at me and terrifying me. Other childhood memories… not so much. Except dodgeball. And beating a couple boys up.

When my friend asked for advice about which specialist to take her daughter to, I was torn. I’m not a doctor, nurse, or any sort of healthcare professional. I wanted to just say, no I can’t help you. Chronic pain is so different for everybody, how could I possibly help? And what if chronic pain was actually something bad that no one had found yet? I didn’t want to be responsible for her not getting appropriate care. At the same time, however, as I thought back on the genesis of my chronic pain, I’ve always wondered, if I had been treated differently as a child with pain, would I have had a different experience? Would I be in a different place right now? Is there a window of opportunity to train a young, flexible brain away from chronic pain?

Before anyone yells at me – fibromyalgia is not “all in your head” except that it is. Our brains process pain differently, as has been shown by very specific brain studies (see the library which has been woefully neglected). If our brains process pain differently, can the brain be trained not to do that before pain becomes sort of set in its ways? I’m not saying I can’t learn things now – my brain is semi-nimble – but it’s not like it was when it was a sponge. It’s not sponge-like anymore.

Because I’ve wondered about that, I went ahead and gave my friend my thoughts (not advice):

1. Start with a general physician. Run tests for all the “bad stuff” (lupus, rheumatoid arthritis, muscular sclerosis, diabetes, etc). If the physician wants to do a referral to a specialist, follow those leads.
2. Stop. Don’t keep dragging your daughter from doctor to doctor after the tests have been run. If she has fibromyalgia, she will do better taking a nap and then going out in the evening with friends than spending hours in a doctor’s office.
3. Clean up her diet. Try cutting processed foods and sugar. Reduce carbs because they become sugar in the system. Try a really restricted diet for three or so weeks and see if it changes the character of her pain or reduces/eliminates it. If so, keep on that diet, create some new food habits. She doesn’t need to be diagnosed for an intolerance to gluten or sugar or dairy if by cutting those things she feels better.
4. Encourage exercise, even mild exercise. Keep moving.

If a child is taught that pain is bad and they must do all they can to eliminate that pain by spending years in a doctor’s office, does that destine the future adult to constantly put pain first? As a parent, I understand the need to fix things for your kids, but is this one thing that the attempts to “fix” are actually damaging? It’s a thought.

I’m a fan of the #TryGuys – they’re adorable. I suppose that’s not the reaction they’re looking for, but they are. This last week the Try Guys raided Zach Kornfelder’s closet and dressed like Zach: “Zach’s perfect style would be just like wearing a blanket.” Zach deals with chronic pain, so yes, Zach’s perfect style IS dressing like a blanket. It’s a fun episode (https://www.youtube.com/watch?v=Rj_4XAzS6uw) where Ned, Keith, and Eugene go through Zach’s clothes and discover… they’re different. These guys who look quite a bit bigger than Zach can put his clothes on over the top of their clothes. Hmmm, baggy clothes? And suddenly they realize how SOFT Zach’s clothes are. Baggy and soft. The wardrobe of people with chronic pain.

Zach’s lucky. He’s adorable, so he can dress any way he wants and people still smile at him. He can put on any crazy pattern or color or style and look fantastic. He’s very comfortable in his own skin. He’s the person I would aspire to. The funny thing is, they (including Zach) really don’t recognize what could be at the core of his fashion decisions. Ned gets a “new appreciation for comfort clothes,” but why are they comfort clothes? Pain. I walk around in oversized, super-soft clothes, and I’m pretty sure people just think, well, she’s trying to cover her fat. Nope. I’m making comfort, not adding to stress and pain.

#ComfortClothes

At least 4 times a week I find myself laying in bed in the morning, explaining to both myself and my dog why I’m going to get up and get to work. This is usually followed by a deep conversation with myself about why it’s important to get out of the shower before I use up all the hot water. There are later discussions regarding remembering to eat, remembering to go to the bathroom, remembering to take meds, remembering to go to bed, remembering to close my eyes. It’s a full gamut of discussions. As I worked through therapy, I learned it’s important to talk to myself like I would a good friend. I no longer yell at myself to get out of bed, I have a discussion. I encourage myself. I often lose negotiations with myself regarding chocolate or alcohol, but that’s another story, and either way I’m very civil with myself.

But there’s another voice deep in my inner self that jumps out at inconvenient times to be negative, hateful, sarcastic, abusive. When I make a mistake, it’s the voice that tells me I’m stupid, fat, ugly. In short, it’s an angry little voice with a bad attitude. It’s connected to the part of my psyche that’s been disappointed. And it’s there to reassure me my disappointments are all my fault, thank you very much. Instead of pushing that voice away or yelling back at it, I’ve learned to engage it, sort of start a think tank with the angry little voice.

There’s another voice – and now you’re wondering about dissociative personality disorder, which would be far more interesting, but no, I’m just your ordinary chatterbox. The third voice is the one that reminds me that my body hurts. It’s a very quiet voice, but persistent. I’ve always said, the best thing you can do about chronic pain is to simply not think about it. When you think about it, it magnifies. Your attention and energy should be focused on something productive, something you want to do, not on how you feel trying to do it. This voice tells you how you feel, all the time. It will often join the discussions I have with the other voices. It sits in the corner to nod in a superior way and encourage negativity. It’s insidious. It’s the voice that is arguably the most important to silence. Even as I sit here typing, it’s in the back of my head (hiding behind the tinnitus), taunting me. When it speaks, I stop working. It’s a Svengali – it hypnotizes me into inaction. I once worked in a nursing home where we had people bedbound and unresponsive. I’ve often wondered if they had that insidious voice too, telling them they hurt and to just lie still. To that voice, I say “Shhh.” I say it quietly yet firmly. “Shhhhh.” And then I stand up anyway.