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What is wrong with me?!

Fibromyalgia | Last Active: Sep 28 12:20pm | Replies (16)

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@ripley

I was told by a PT at the Mayo in Rochester that Mayo does not prescribe pain meds for fibromyalgia (which is the same approach as other doctors I've seen). I don't know how to self-manage to calm my brain from being on "high alert". I haven't tried any of the meds approved for Fibro, as I've heard the side effects usually outweigh the benefits and even the Mayo doesn't recommend them. I don't understand why Drs won't prescribe pain meds for the really bad days. I've also read that Drs dismiss women complaining of pain more often than men. Since fibro primarily affects women, I sometimes wonder if treatment might differ if the condition primarily affected men.

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Replies to "I was told by a PT at the Mayo in Rochester that Mayo does not prescribe..."

Usually, a PCP is willing to prescribe chronic pain medications, but it doesn't sound like you're very interested in them (I'm too worried about the side effects).

I recommend finding a PT experienced in central sensitization, chronic pain, and/or fibromyalgia if you're interested in pain neuroscience. There are also numerous books on the topic, and the app I mentioned above called Curable. It is a subscription, but as with most things there's a free trial. I haven't tried the subscription, though I'm considering it. However, their blog and podcast does an excellent job explaining how and why turning down the volume on pain messaging works: https://www.curablehealth.com/infographic/path-out-of-chronic-pain

That's only part of it, but it's not something I've found is taught often despite it being evidence-based.

I can't really comment on the pain medications because I haven't tried them. My understanding is that opioids over time can sometimes make pain worse (though I know some are successful with it when it's managed carefully), and the other medications that are out there (gabapentin/Lyrica, Cymbalta, amitriptyline, etc.), they're not really a "one and done" type of medication--they take weeks to take effect, it wouldn't really work to take it on a "bad day." In my case, I have central sensitization and fibromyalgia, which is a problem with pain messaging, and I also have POTS, which has to do with blood flow so pain medication as a rescue medication wouldn't really work for me.

But I do agree, these pain syndromes tend to impact women primarily, so I think systemic sexism plays a roll. And the medical system isn't set up to support people with these types of conditions. It's more transactional with things people can see that have a more direct fix, i.e.: You have a broken arm, okay let's fix it. It's not set up to deal with the person who potentially develops chronic regional pain syndrome and/or central sensitization as a response to that broken arm because it's (a) Not something they can see (b) Involves the central nervous system/brain, which is much harder to treat, and (c) The interventions we do have take time, trial and error, and practice. Neither doctors have the training or time, and most patients (including myself) want a quick solution.

I wish I could just pop a pill, but I know it wouldn't work. At least, not the options we have right now. The neuromodulators; they may work, but to your original point...I'm very sensitive to medications and don't want to take the risks.

Alas, that is how I landed on pain neuroscience. Thankfully I was persistent and found a PT who could help me.

Have you ever been tested for ADD? Do you know a lot of people with FIBRO have ADD. Including me. I have a terribly long story to explain this but the short of it is that prior to adderall, I was depressed and anxious. 20 years ago myGP tried adderall with me. It changed my life. Recently my GO Suddenly closed his office with no warning. No more adderall unless I find a psychiatrist willing to give it to me. I’ve been untreated for 2 years. My FIBRO sumptoms worsened
Faught with anxiety and depression
During this flare my neurologist was more than happy to put me back in it. Now instead of racing thoughts anxiety and depression, I feel calm. And again my symptoms are now improving.
Just a thought.