Is Fibromayalga Real?

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urb1

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There was a guy in ER when one of my parents was dying who somehow cut off two fingers making his kid’s Pinewood Derby car. His entourage was loud and took up most of the surgical waiting area. 1. It’s the kid’s project; 2. Nothing about it requires tools that sharp. Still boggles my mind.
To lighten up things: this post triggered a memory. One of the times I was in the ER with my wife, a nurse was drawing her blood. The nurse told us there was a guy a few rooms down who was tattooed from neck to waist and both arms. But was causing all sorts of problems getting blood, because he was AFRAID OF NEEDLES!
 

khardbored

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Oct 20, 2012
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The other thing I'd recommend for anyone with a major health condition is this: push hard when it comes to interacting with the medical community. If you are passive, things won't get done. Tell you doctors what you need. Follow up aggressively. Just assume the front-office staff won't do their jobs correctly, and call them every 3 days until they do what they're supposed to do.

Examples:
  • Doc says you need a CT scan and will refer you for one? Just assume someone will mess up the referral. Follow up aggressively. Call until it's in place.
  • Need a form completed for disability/Social Security/FMLA, etc? Don't rely on the receptionist to send it back. Until you have a copy of the form in your hand and look at it, and send it in yourself, and then make sure it was received, it probably hasn't been.
  • Ask for referrals. Don't just settle for "come back in 10 weeks if it still hurts" if it doesn't seem quite right to you. Trust your gut.
  • If you don't feel right about what your doc is saying, it's 100% OK to get a new doctor or a 2nd opinion!
This comes in part from my work and also from caring for incapacitated elderly parents.
 

t-noah

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Feb 2, 2007
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It's real in the sense that doctors often don't know what's really going on and they have to call it "something".

The human nervous system is extremely complex and poorly understood at the localized level. I've been dealing with a variant of trigeminal neuralgia/trigeminal neuropathic pain for close to 3 decades. I didn't even realize how bad it was, and how long I had been living with it until I had my wisdom teeth taken out when I was 20. Prior to removal I had issues with nasal breathing, headaches, difficulties smiling and neck/head posture...basically a bunch of things I didn't think were related. Three days post removal it was like this vice that was constantly on my head released. I could breath nasally without impedance, felt comfortable standing (no neck and shoulder tightness), and could smile without it being physically awkward. Unfortunately this was short lived and was followed by complications/reaction in my upper left tooth socket that yielded a cystic mass. It didn't take a medical degree to know it wasn't right as it formed within a matter of minutes while waiting for CyRide. It was accompanied with extreme localized pain, impaired nasal breathing,

At the time I had no idea what was going on but I apparently have issues with my trigeminal nerve on the left side of my face. The oral surgeon at the time didn't have a clue, was reluctant to remove the mass, and didn't even take my complaints seriously. It's hard to say for sure but I'm pretty sure there was an exposed nerve which triggered the formation of a neuroma/fibroma, then healed/scarred. I've been to several oral surgeons (before I knew it was nerve), ENTs, pain specialists, neurologists, and neurosurgeons. It wasn't until I got to the neurosurgeons where I felt anyone even had the slightest clue as to what they were dealing with but even then they really didn't know.

Long story short is that modern medicine sucks when there isn't a test, scan, or clear cut symptomatic presentation that leads to a definitive diagnosis. In my case the only thing that showed on scans was an inflamed left trigeminal nerve on the MRN. Well, I already knew it was ****** up but what EXACTLY is causing it? Is the nerve scarred? Is there an impingement further back that caused inflammation and for the nerve to be easily irritated? Is there a form of CRPS or something similar causing a local reaction? Nobody can tell me and all of the "treatments" have been shot in the dark stabs, from medicine to brain surgery, in hopes of alleviating the issue. But throwing **** at a wall hoping it sticks is a more way to address a problem. You have to have better diagnostics to understand it first, something that's lacking due to multiple factors.

So, getting back to the original question, I think fibromyalgia is a diagnosis made in the absense of truly knowing what is going on. In some cases it may be psychosomatic. In others it's some kind of inflammatory or autoimmune issue. In others it could be a nerve issue, as some kind of myelination disorder. But I can tell you with a large percentage of certainty your friend isn't crazy. The medical field sucks at diagnosing the not so obvious. Trust me, I've lived it for over 20 years.
And unfortunately, for the more difficult (and not clearcut) medical conditions and pain syndromes, the pathway to recovery (if there is one) can be very complicated. Not only from being able to find the right specialist, but with insurance, bills, etc.

Thankfully there are some very bright practitioners out there, who can effectively treat many of these difficult conditions. Some of the treatments are not maistream either. Finding them, and getting insurance to pay for coverage, another story many times.
 

Proton

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There are many astonishing things about this thread. Lots of good advice and insights. I’ve just assumed the vast majority of people here are office schlubs like me. Can’t believe all the medical professionals. Is FriendlySpartan a Mich State fan and Er Doc who comes here for conversation? If so, that’s freaking bananas.
 

carvers4math

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Mar 15, 2012
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I did PT after both pregnancies and I just think it's magic now. I went with a private clinic so she bypassed much of the BS and could focus on patients. Such an interesting field of work, imo.
I wish I had known about such magic after the nine and a half pounder. I weighed 141 at the OB visit that morning and 123 after the birth 6 hours later, probably 10 pounds less than I weighed when I got pregnant. Doctor comes in when I am sitting in the sitz bath that night and says, “I think you could have had a bigger one.” I felt like I had been hit internally by a train. I did for weeks afterwards. The rest were pretty easy but if there was something that would have made me feel better like PT I wish I had known. The sitz just helped with fact that doctor got there too late for an episiotomy. Do you know if PT is helpful for vaginal birth recovery or aimed at C-section recovery?
 
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3TrueFans

Just a Happily Married Man
Sep 10, 2009
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Did you just try to tell an Emergency Physician what type of laceration is easier to treat? Clean cuts are eaiser to suture/staple, leave minimum scaring, and heal quicker. In the example above with the fingers being severed a clean cut makes it much easier to reattach, a jagged cut is extremely difficult if not impossible to put back on.
Now the question is does @Acylum just dip out of the thread or does he double down super hard, I think those are the only two options.
 

carvers4math

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Mar 15, 2012
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To lighten up things: this post triggered a memory. One of the times I was in the ER with my wife, a nurse was drawing her blood. The nurse told us there was a guy a few rooms down who was tattooed from neck to waist and both arms. But was causing all sorts of problems getting blood, because he was AFRAID OF NEEDLES!
Lol I have a friend tatted up the wazoo who works in hospital administration who won’t donate blood cause she’s scared of needles and yeah the tats are all from legit places so she is eligible
 
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deadeyededric

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There are many astonishing things about this thread. Lots of good advice and insights. I’ve just assumed the vast majority of people here are office schlubs like me. Can’t believe all the medical professionals. Is FriendlySpartan a Mich State fan and Er Doc who comes here for conversation? If so, that’s freaking bananas.
We have world leaders on this site!!!
 

cowgirl836

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Sep 3, 2009
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I wish I had known about such magic after the nine and a half pounder. I weighed 141 at the OB visit that morning and 123 after the birth 6 hours later, probably 10 pounds less than I weighed when I got pregnant. Doctor comes in when I am sitting in the sitz bath that night and says, “I think you could have had a bigger one.” I felt like I had been hit internally by a train. I did for weeks afterwards. The rest were pretty easy but if there was something that would have made me feel better like PT I wish I had known. The sitz just helped with fact that doctor got there too late for an episiotomy. Do you know if PT is helpful for vaginal birth recovery or aimed at C-section recovery?

Both and it's never too late. The one I follow on insta works with women decades after their pregnancy years. So does the one I went to. Happy to DM if you want!
 
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FriendlySpartan

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There are many astonishing things about this thread. Lots of good advice and insights. I’ve just assumed the vast majority of people here are office schlubs like me. Can’t believe all the medical professionals. Is FriendlySpartan a Mich State fan and Er Doc who comes here for conversation? If so, that’s freaking bananas.
Michigan state/Michigan fan but yeah. Came over for the realignment chatter but this is one of the better boards I had ever interacted with.
 

FriendlySpartan

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The other thing I'd recommend for anyone with a major health condition is this: push hard when it comes to interacting with the medical community. If you are passive, things won't get done. Tell you doctors what you need. Follow up aggressively. Just assume the front-office staff won't do their jobs correctly, and call them every 3 days until they do what they're supposed to do.

Examples:
  • Doc says you need a CT scan and will refer you for one? Just assume someone will mess up the referral. Follow up aggressively. Call until it's in place.
  • Need a form completed for disability/Social Security/FMLA, etc? Don't rely on the receptionist to send it back. Until you have a copy of the form in your hand and look at it, and send it in yourself, and then make sure it was received, it probably hasn't been.
  • Ask for referrals. Don't just settle for "come back in 10 weeks if it still hurts" if it doesn't seem quite right to you. Trust your gut.
  • If you don't feel right about what your doc is saying, it's 100% OK to get a new doctor or a 2nd opinion!
This comes in part from my work and also from caring for incapacitated elderly parents.
Most of this is fine, just when you’re being aggressive calling back, remember that the people you will be talking to have almost zero control over most issues you are calling for.

Also sometimes ask a doctor if they think you should get a second opinion even if you do feel comfortable with what they are saying
 
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carvers4math

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Both and it's never too late. The one I follow on insta works with women decades after their pregnancy years. So does the one I went to. Happy to DM if you want!
Thanks I just never knew! I have a friend whose daughter is a PT so I will inquire but let you know if I need more resources. I think that baby did a number on my bladder and now that I’m old it is only going to get worse. I think there must be stuff I can do besides what Dr. Google has advised.
 
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cowgirl836

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Thanks I just never knew! I have a friend whose daughter is a PT so I will inquire but let you know if I need more resources. I think that baby did a number on my bladder and now that I’m old it is only going to get worse. I think there must be stuff I can do besides what Dr. Google has advised.

Pt friend will know but just in case, you specifically want PFPT as the specialty. Many countries include as part of postpartum care. And yes, that's very fixable and don't just do kegels because they can make it worse!
 
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TwinCitiesCy

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If you are being sarcastic, shame on you (or disrespectful). Likewise, if you are blaming the OP for even asking, or bringing up a subject, shame on you as well. JMO.

It doesn't hurt to ask a question, or voice your opinion, respectfully. Others can respond and do the same. That's how we learn, or try to learn anyway.
deadeyededric said:

I have a friend that continually goes to the hospital only to be told there is nothing wrong with her. They won't even prescribe her pain pills. “Why does this condition only affect middle-aged women who are lonely and need attention?”

Shame on me for calling out the statement in quotes as being disrespectful?

Interesting stance.
 

ImJustKCClone

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Thanks I just never knew! I have a friend whose daughter is a PT so I will inquire but let you know if I need more resources. I think that baby did a number on my bladder and now that I’m old it is only going to get worse. I think there must be stuff I can do besides what Dr. Google has advised.
Can confirm there is PT directed toward that issue. It's kind of like Kegels on steroids...
 

carvers4math

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Mar 15, 2012
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deadeyededric said:

I have a friend that continually goes to the hospital only to be told there is nothing wrong with her. They won't even prescribe her pain pills. “Why does this condition only affect middle-aged women who are lonely and need attention?”

Shame on me for calling out the statement in quotes as being disrespectful?

Interesting stance.
I think hating on women of a certain age is so popular and accepted that people no longer recognize it for what it is or have the courage to call it what it is. But at least you make me feel less alone by being appalled by it.
 

t-noah

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If you are being sarcastic, shame on you (or disrespectful). Likewise, if you are blaming the OP for even asking, or bringing up a subject, shame on you as well. JMO.

It doesn't hurt to ask a question, or voice your opinion, respectfully. Others can respond and do the same. That's how we learn, or try to learn anyway.
deadeyededric said:
I have a friend that continually goes to the hospital only to be told there is nothing wrong with her. They won't even prescribe her pain pills. “Why does this condition only affect middle-aged women who are lonely and need attention?”

Shame on me for calling out the statement in quotes as being disrespectful?

Interesting stance.
Friend, I think you and I are on the same page. From your post I wasn't sure if you were being sarcastic with OP, (maybe saying that you didn't think Fibro pain was real). Or, I thought you might be dismissing his statement entirely. Both kind of hit me wrong. Thus, I responded how I did, right or wrong.

I do not mean to call the intent of your post disrespectful or shameful, at all. And, I don't think the OP meant his post to be disrespectful either. Perhaps not worded quite right?

Maybe we can leave it at that. Peace.
 
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