Thread by @kazweida

I spent 2019 struggling with health issues that confounded diagnosis. In early 2020 I became convinced I had fibromyalgia & began exploring triggers & treatments.

Here's what I've learned after a year of living with fibromyalgia that might help others who are suffering.
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(2) FIBRO CAN FEEL DIFFERENT FOR EVERYONE

For the longest time, I got hung up on the fact that I didn't have spots that were sore to the touch that followed those trigger point diagrams. Those diagrams are a VERY outdated way of diagnosing fibro.

(3) The light bulb went off when I went to see an ortho specialist who could manipulate trigger points in my neck to produce symptoms in various parts of my body.
I started to put the pieces together.

(4) Those occasional sore spots on my scalp or above my knees that defied explanation and seemed to come and go. It was so obvious in retrospect.

Now that I'm paying attention, I have more of the trigger points than I think I do. And I've had far longer than the last two years.

(5) FIBRO IS A SHAPESHIFTER

My fibro symptoms were always changing and it was part of what kept me chasing a different diagnosis every few weeks. One month it was excruciating facial pain and a metallic taste in my mouth. The next month shooting pains down my legs and IBS.

(6) I discovered my fibro was like a feedback loop. If I was sore in a specific spot or if I happened to indulge in a trigger at the right time, the pain would settle in that area.

Once I understood what was happening, it became easier to head off flares before they got started.

(7) For instance, my nine-year-old daughter, who also has fibro, found that if she allowed herself to get hungry, those rumblings would snowball into a bout of IBS.

She eats small meals now to avoid getting those muscles contracting and starting the fibro feedback loop.

(8) FIBRO RESPONDS TO CHANGING LEVELS OF HORMONES

I certainly can't speak for everyone, but this is perhaps the most consistent thing about fibro for me. My flares follow my monthly cycle like clockwork. Right as I head into the end of my follicular cycle, symptoms spike.

(9) I get 2 weeks a month mostly symptom-free and these days always align with my luteal phase. The most reliable indication that my period is approaching is that my symptoms start to creep back just a few days before. My worst flares always happen the week after my period ends.

(10) FIBRO IS POSITIONAL

This is the other piece of my fibromyalgia that is the most consistent. My flares are usually related to sitting for long periods of time, especially in cars or situations where my neck might get tweaked.

My daughter's always happen when she lies down.

(11) We've both found relief in simply changing positions. For my daughter, something about switching onto her stomach can quiet the flare and disengage the stomach muscles that are so often a source of pain for her.

I usually feel better getting up and walking around.

(12) FIBRO DOES RESPOND TO DIET

I've read several things on this and while there is no conclusive evidence, my experience has been there are definitely fibro triggers hidden in my diet. Eating a non-inflammatory diet helps. Tomatoes and wine consistently produce flares for me.

My daughter has more IBS symptoms than I do so her food triggers involve anything with high levels of fiber like chicory or inulin or guar gum or even some fruits such as grapes.

Sadly these ingredients hide everywhere in our food so I do a lot of label reading.

(13) FIBRO IS REAL
There's some very weird stuff surrounding the diagnosis of fibro as a neurological disorder that makes folks believe it's "in your head." That's utter bullshit.

Medical science doesn't understand fibro very well but the pain you're experiencing is real.

(14) In fact, there is a test for fibro now because researchers discovered a while ago that people with fibro have a specific metabolic signature that has deficiencies in certain cytokines.

Fibro has begun to be framed as a problem of the neurological immune system.

(15) These are the basic things I've learned about fibro in the last year. Or at least about what fibro looks like for me. Now we get to the good stuff.

Here's what has worked to help me manage my fibro symptoms and what hasn't worked.

(16) HEAT WORKS

My fibro headaches feel like a band tightening around my forehead. Because my fibro is positional and much of my trigger points reside in my neck, I find that a simple heating pad applied to my neck and shoulders can loosen the hold of a fibro headache.

(17) ACUPUNCTURE WORKS

I have an acupuncture mat that looks like a torture device but it works well for my daughter & I to provide temporary relief from a flare. I find the relief doesn't last as long as the heating pad for me but the acupuncture works better for my daughter.

(18) YOGA WORKS
The biggest change I made last year was to do yoga every day and it made an almost immediate and profound difference. I do a pretty short daily practice-about 15-20 minutes most mornings. My daughter does it at night. We both get significant relief from the poses.

(19) MEDITATION WORKS
I've gotten into this more recently but it's made a pretty big difference not in heading off flares or relieving them but in managing pain.

Meditation allows you to observe the pain and let go of the anxiety you have surrounding it.

(20) EXERCISE WORKS
Getting out every day and moving reduced the severity and frequency of flares for both my daughter and I but it has some caveats. For me, the exercise needed to be non-impact and not induce muscle soreness and tension. I walk or hike daily.

(21) A few other things that worked but less definitively...
-Vitamin D (I noticed a slight difference with a modest supplement)
-Occasional magnesium (helps with muscle soreness but can induce IBS)
-Vegan or vegetarian (removing meat as an inflammatory trigger seemed to help)

(22) Another thing that made a big difference to me was getting a yoga ball as a desk chair. That sounds totally dumb, but it really helped with my general soreness.

I also found that taking frequent breaks and walking around (every hour) was critical.

(23) MEDS DIDN'T WORK
I'm not saying meds won't work for you, but it wasn't an effective treatment for me. I tried nerve drugs and serotonin boosters but found they caused problems instead of solving them.

Meloxicam helped but took too long.
Ibuprofen had too much bounce back.

(24) SPECIALIZED DIETS DIDN'T WORK
While elimination diets helped me find some triggers, some of the more specialized diets on their own didn't really help much.
I also didn't get many benefits from other specialized supplements or vitamins like MSM.

(25) WORRYING ABOUT IT DIDN'T HELP
I know. You're probably like- duh, Kaz. Of course. But I found my fibro was feeding my anxiety. I'd notice I'd have a twinge of pain and then I'd suddenly feel crippling existential dread. Or I'd get anxious and it would feed a flare.

(26) My anxiety is ALWAYS worse at the same time every month, usually coinciding with a flare. That's not a coincidence. And it's hard to tell which comes first- the chicken or the egg. In the end, it doesn't really matter.

This is why mediation has really helped me.

(27) A year into my fibro diagnosis, I feel like I have SOME answers and some measure of control over the quality of my life. I have a couple of shitty days every month. I deal.

And in some ways, it's made me so much more grateful for the good days.

(END) Medical science doesn't know much about fibro, so in some ways, you'll be on your own. Listen to yourself. Trust yourself. Invest in the journey of finding what will work for you.

I don't have all the answers. Nobody does.
But it does get better.

Thanks for stopping by for my Tuesday thread. Come back Thursday and we'll do this again.

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Gah! I forgot one very important thing in this thread.

CBD helps. For me it only helps on specific things like carpal tunnel pain but my daughter actually gets some limited benefit from it for stomach pain.

The caveat is it only works for a little while- maybe an hour or less.