1. < Fibromyalgia

What is wrong with me?!

Posted by ehope @ehope, Sep 23 8:29am

Month 9 of unexplained and undiagnosed NON-STOP pain. It started in my foot, shooting pain and purple color, moved to include other foot making walking SO hard. Started in the middle of the night out of nowhere. Was walking 5 miles a day and well. Now my whole body hurts. my hair is thinning and I do not have any remission from this. After finding MANY doctors in many disciplines and waiting, tests all look good. Neurology tomorrow for EMG. NO one has said Fibromyalgia. Nothing helps. Grateful to connect. I do not have fatigue. Just tired of the pain and debilitation. Thank you ALL!

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emo | @emo | Sep 27 1:56pm
In reply to @ripley "I was told by a PT at the Mayo in Rochester that Mayo does not prescribe..." + (show)
@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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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.

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heatonpatti5 | @heatonpatti5 | Sep 27 3:15pm
In reply to @ripley "I was told by a PT at the Mayo in Rochester that Mayo does not prescribe..." + (show)
@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.

Jump to this post

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.

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2 replies
emo | @emo | Sep 27 3:52pm
In reply to @heatonpatti5 "Have you ever been tested for ADD? Do you know a lot of people with FIBRO..." + (show)
@heatonpatti5

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.

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Thanks for sharing. Would a new GP be willing to prescribe the adderall since there's a record of your original GP prescribing it, along with the diagnoses?

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1 reply
heatonpatti5 | @heatonpatti5 | Sep 27 5:23pm
In reply to @emo "Thanks for sharing. Would a new GP be willing to prescribe the adderall since there's a..." + (show)
@emo

Thanks for sharing. Would a new GP be willing to prescribe the adderall since there's a record of your original GP prescribing it, along with the diagnoses?

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My GP of 30 years is who prescribed it to me. He suddenly closed his office. I requested my records from Jefferson but it excluded the medications. I called. They simply said they don’t provide that. I never followed up. I am however perfectly happy with my neurologist ordering it because he’s familiar with the effects of ADD in FIBRO my GP def is not. I’m not exactly thrilled with new GP. Think I’ll start looking for another after I get all my tests and PT set up and going. Hope YOUR doing well and thx for the input for sure!!

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heatonpatti5 | @heatonpatti5 | Sep 27 5:25pm
In reply to @loriesco "I'm going on 30 years of various nerve maladies. Finally a supplement came thru which is..." + (show)
@loriesco

I'm going on 30 years of various nerve maladies. Finally a supplement came thru which is helping whole body inflammation caused by high uric acid levels (gouty arthritis).
Just keep pushing for nerve tests and try various doctors until you will get one to work with you for the long haul. One who will "learn your body."
Sounds like nerves being crushed from L3-L5. So make sure an orthopedic surgeon is in the mix of your doctors. It also sounds like diabetes and neuropathy.
nerves being squished cause me "on fire" and "feet in pain" and numbness.
Right now I have an onfire ache in a leg area which has been numb for 14 years! It COULD BE the nerves dysfunctionally growing back after relief from lumbar surgery in 2018. It takes 10 years sometimes for nerves to regenerate. When they do - maybe I wish they didn't?! Try topicals. Try nerve meds. Try acupuncture and MFR (section here on it) Try massage and symptom relief in the meantime. good luck!

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Ty so much. All good points and great coping ideas!! I’m open to trying everything!!!

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ripley | @ripley | Sep 28 12:20pm
In reply to @heatonpatti5 "Have you ever been tested for ADD? Do you know a lot of people with FIBRO..." + (show)
@heatonpatti5

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.

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Thank you for your reply. I don't believe I have ADD though.

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