My grandmother had it. Her pain was definitely real. She didn't drug seek at all. I do not think that in her case a psychological origin would be even mildly surprising.
I think it's sort of like IBS - you have a set of very real symptoms and there's no way to pinpoint the cause specifically, so a doctor slaps a label on it. It seems to me like there's infinite number of possibilities but we have to call it something.
My mom was diagnosed with it by an actual doctor. She was in a really bad car accident 15ish years ago that required surgery and PT and cost her her job, she suffers from migraines, and she hasn't exactly had an easy life. I do think in her case there is actual physical pain... but I also think its partly psychosomatic. She's not really a drug seeker, but she does have medications.
I think for people in daily pain they want a diagnosis or a reason for the cause of their pain. It does make you feel crazy to be in pain and not know why.
I was terrified of getting the Fibromyalgia label, since I know the connotations associated it with. Thankfully for me (I guess) they think they've found the source of my pain.
I've been experimenting with pain in my ankle for years now. I've felt everything. Muscle pain feels different than ligament pain. Bone pain is different from those. Fascia pain is something different too. But nerve pain. Nerve pain did something to me that, even years later, is hard for me to remember and discuss. I had felt all these other pains, for a long time. It wasn't like pain was something new. But there was some fundamental difference in the nerve pain. It created depression where the other pains hadn't. And the pain definitely came before the depression. I had thoughts, almost daily, of ripping my own skin off to make the pain stop. Often I'd reach down and dig my nails in, just because that pain was a relief from the nerve pain. I thought about some other things. My diagnosis wasn't fibromyalgia, it was CRPS. But I often wonder if fibromyalgia people feel in their whole bodies what I felt in one limb. That horrifies me.
I was so lucky that my doctors believed me. They never thought I just wanted painkillers. They never thought I wanted to quit working and live off disability. And my doctors understood nerve pain better than most. I don't think some people get that lucky.
all this to say that i think (and i know) that fibro and chronic fatigue syndrome are two diseases that are wayyy overdiagnosed and often used as what i like to call 'placeholder diagnoses' until often the real problem is discovered.
When I see patients who say they have it, they often have a bunch of other diagnoses with it. So I wonder if there are other disease processes that present with similar pain? I just rarely see someone who just has that. They usually have everything.
I think it's sort of like IBS - you have a set of very real symptoms and there's no way to pinpoint the cause specifically, so a doctor slaps a label on it. It seems to me like there's infinite number of possibilities but we have to call it something.
my sister has IBS. she uses this as a reason not to eat almost every food out there. (re: ED). my H and i laugh about this all the time b/c we think that SHE THINKS that any sort of loose poop is ZOMG IBS! when really? sometimes you just have a loose poop. lol
/sorry tangent
I don't think that the DX's of fibro or IBS make the symptoms less real (in not ED, not drug seeking people). They're sort of "cop out" diseases IMO.
Patient: I have gas, bloating, and diarrhea. Doctor: You have irritable bowel. Patient: That's what I just said.
You know, it's so strange. When I had PPA, my anxiety was completely focused on my health and I was certain I had all of these diseases. I was certainly not well to say the least. Anyway, it's amazing how I actually started developing symptoms of whatever current disease I thought that I had. It taught me that the mind is a very powerful thing. It was pretty fucking freaky.
I think they gave me the diagnosis because they did not know what else it could be. I have been doing physical therapy and taking drugs and it has helped to some extent, but not really. I just have constant pain in my shoulders, neck, and back. It is deep pain that only feels temporarily better when I push on it as hard as I can. It is definitely real pain. Sometimes I cannot move, sometimes it hurts so bad that I cry. I am going to keep with the physical therapy (had to stop the drug now that I am pregnant), but push harder for more results if I do not feel better soon.
I think they gave me the diagnosis because they did not know what else it could be. I have been doing physical therapy and taking drugs and it has helped to some extent, but not really. I just have constant pain in my shoulders, neck, and back. It is deep pain that only feels temporarily better when I push on it as hard as I can. It is definitely real pain. Sometimes I cannot move, sometimes it hurts so bad that I cry. I am going to keep with the physical therapy (had to stop the drug now that I am pregnant), but push harder for more results if I do not feel better soon.
You're expecting again! CONGRATS!
Yep. We started trying last month thinking that it would take some time (I had trouble in the past with my XH), but it happened RIGHT AWAY. EEEKKK. They will be 17 months apart.
I think it's sort of like IBS - you have a set of very real symptoms and there's no way to pinpoint the cause specifically, so a doctor slaps a label on it. It seems to me like there's infinite number of possibilities but we have to call it something.
My sister has been "diagnosed" with this. Except it isn't really a diagnosis. It's a "you have unexplained pain, so we'll label it as Fibromyalgia". She has the highest pain tolerance of anyone I know; I'm pretty sure the pain isn't in her head. She has ribs that keep popping out of place because her body is messed up right now.
She has continued to pursue other medical opinions. Her current doctor is pretty sure that she had Ehrlichiosis for years which has gone untreated and wreaked havoc on her body. Fucking tick-borne diseases. They are treating now, but she is going to be on antibiotics for almost a year. They have done 3 rounds already and she is still testing positive for the disease.
I think that for some people it can absolutely be all in their heads, but I do think that there are frequently underlying medical issues that cause the pain.
She is completely, 100% batshit crazy (it's a long, crazy story). She is also probably clinically depressed, has migraines all the time, seizures, etc.
In her case, I think it's a psychosomatic issue. She just wants to make everything about her alllllll the time. If it's not about her, she does what she can to make it about her.
Interestingly, I was getting a massage recently and talking to the therapist and she said that she'd never met a person who had been diagnosed with fibro who hadn't had some kind of mental/emotional trauma or depression. Now, per what MWOS said, pain can do a lot to your mental health and I completely understand that. But the massage therapist said that the mental/emotional trauma usually happened first with these people, and then they were diagnosed with fibro later.
Not that she's an authoritative figure on the subject, I just thought it was an interesting perspective.
ETA: DH and I fully believe that in the case of my MIL, if she were to seek out some therapy and anti-depressants, she'd probably feel like a new person. However, she's completely in denial that there's anything wrong with her mentally.
Post by fivechickens on May 23, 2014 9:27:47 GMT -5
A friend of mine was diagnoised with Fibro. She teeters on the scale of reliable/unreliable. I believe she feels her pain was real and I know she was miserable but....I don't know. She wouldn't take the medicine to help ease the pain and decided on a holistic type approach which I think helped. She doesn't really like the diagnoises because many feel its a bullshit diagnoises so she doesn't talk about it.
The only person I know who has it is a completely mentally unstable anti-vaxxer, Tea Partier, gun nut. Although, she recently decided that it's not fibromyalgia, it'a s pinched nerve in her neck. Mind you, she went to Harvard and is brilliant, and hasn't worked in about 10 years because of the fibro. She lives off disability and a hefty divorce settlement.
Her FB is the most insane thing I've ever seen. I actually find it all terribly sad.
I don't know. The only person I know with fibromyalgia is my mom, and she's not exactly reliable. She's always seeking some kind of health issue for attention, so yeah. It's people like my mom who give those who are really suffering a bad name, and it sucks. I wish she would just knock it off.
Post by Booze Raccoon on May 23, 2014 9:34:55 GMT -5
My mother was diagnosed with fibromyalgia last year. She is not a pill or attention seeker.
HOWEVER, it was discovered that she had a hole in her heart and never knew it. She was also in congestive heart failure and was carrying around 34lbs worth of fluid. Since her heart surgery and subsequent weight loss (upwards of 50lbs so far) her fibro symptoms have vanished. She is also no longer diabetic.
I have no idea if these things are linked but I feel like it is more than a coincidence.
I've been experimenting with pain in my ankle for years now. I've felt everything. Muscle pain feels different than ligament pain. Bone pain is different from those. Fascia pain is something different too. But nerve pain. Nerve pain did something to me that, even years later, is hard for me to remember and discuss. I had felt all these other pains, for a long time. It wasn't like pain was something new. But there was some fundamental difference in the nerve pain. It created depression where the other pains hadn't. And the pain definitely came before the depression. I had thoughts, almost daily, of ripping my own skin off to make the pain stop. Often I'd reach down and dig my nails in, just because that pain was a relief from the nerve pain. I thought about some other things. My diagnosis wasn't fibromyalgia, it was CRPS. But I often wonder if fibromyalgia people feel in their whole bodies what I felt in one limb. That horrifies me.
I was so lucky that my doctors believed me. They never thought I just wanted painkillers. They never thought I wanted to quit working and live off disability. And my doctors understood nerve pain better than most. I don't think some people get that lucky.
I didn't realize that you had CRPS. My BFF has it as well. Unfortunately it took a long time to find a doctor that believed her and to give her the correct diagnosis. The pain spread from one arm to both and her legs. She still has rough days of course, but now has what she needs to be functional again.
Post by indianchica on May 23, 2014 10:05:40 GMT -5
I was diagnosed in 2001 (age 20). I feel that it was the "we don't know what else it could be" sort of thing. My pain was very real and intense. I was prescribed muscle relaxers but they made me so sleepy I couldn't function. I haven't taken them in years. I think I have gotten used to having back pain all the time now, so it really doesn't even register with me. One research lab I worked in was trying to find a test for Fibro. I took the test as a normal student lab assistant and the guy's eyes got really big and he looked freaked out. He said to me in this whisper, "Uhh, you react JUST like someone with Fibro." I told him I had been diagnosed 5 years prior.
My mom was diagnosed with it (or self-diagnosed). She has attention seeking tendencies when it comes to health issues. I do think she has pain and feels like crap, but I think it's either caused by or at least exacerbated by a very poor diet, lots of extra weight, and a sedentary lifestyle.
I think finding a label was easier than making lifestyle changes, and that's equally sad and aggravating.
I've been experimenting with pain in my ankle for years now. I've felt everything. Muscle pain feels different than ligament pain. Bone pain is different from those. Fascia pain is something different too. But nerve pain. Nerve pain did something to me that, even years later, is hard for me to remember and discuss. I had felt all these other pains, for a long time. It wasn't like pain was something new. But there was some fundamental difference in the nerve pain. It created depression where the other pains hadn't. And the pain definitely came before the depression. I had thoughts, almost daily, of ripping my own skin off to make the pain stop. Often I'd reach down and dig my nails in, just because that pain was a relief from the nerve pain. I thought about some other things. My diagnosis wasn't fibromyalgia, it was CRPS. But I often wonder if fibromyalgia people feel in their whole bodies what I felt in one limb. That horrifies me.
I was so lucky that my doctors believed me. They never thought I just wanted painkillers. They never thought I wanted to quit working and live off disability. And my doctors understood nerve pain better than most. I don't think some people get that lucky.
I didn't realize that you had CRPS. My BFF has it as well. Unfortunately it took a long time to find a doctor that believed her and to give her the correct diagnosis. The pain spread from one arm to both and her legs. She still has rough days of course, but now has what she needs to be functional again.
I got mine diagnosed and treated within a month of it starting. It has not spread at all, and my pain is under control 99% of the time with supplements and occasionally a TENS unit. Of course, I still do stupid things and have it flair up from time to time. Monday I wore a tight sock for 4 hours and was left bruised and swollen and had a hard time walking for about 36 hours. The pain has been going away over the course of this week, which is good. It was stupid of me to wear that particular sock. I should have known better. I'm sure there are some people who are like, omg, MWOS, what a delicate flower with her special sock on her special foot. Or maybe they think I was a nut to begin with. (idea)
Post by fuckyourcouch on May 23, 2014 10:24:18 GMT -5
My mom has been diagnosed and her suffering is quite real. However, I think it's a placeholder diagnosis because they don't know what is really wrong. She is not a pill seeker, she does not get MMJ, she basically gets a pill for joint pain and physical therapy. She also has a therapist for other things who I'm sure would speak to her doctor if she was a crazy pill seeker. I think there is something else wrong that hasn't been diagnosed yet. I feel terrible for her, I know what it is like for doctors to tell you you're wrong. Until one of them runs just the right test and you get the correct diagnosis.
I think I'm in the side of something else being wrong, but doctors see fibromyalgia as the "easy" diagnosis.
The friend that recently died of Lyme disease? She was diagnosed with fibro and chronic fatigue syndrome for years.
I keep telling my mom to get tested for Lyme. I feel like her symptoms match. I seriously have no idea where she would have been around a tick though, she's not outdoorsy.
I do agree that doctors tend to slap the label on someone when they don't really know what the problem is. The only person I know who has the diagnosis was basically told "we ruled everything else out, so it's fibro." I think it stinks for people who are in constant pain to basically be told "sorry, there's no known cause and no proven treatment." That's scary. That said, I do judge the people who refuse to follow doctor's orders. If a doctor tells you to take an antidepressant and try exercise, and you say no because you don't like exercise and don't believe in antidepressants, then are you even trying to help yourself?
My mother was diagnosed with fibromyalgia last year. She is not a pill or attention seeker.
HOWEVER, it was discovered that she had a hole in her heart and never knew it. She was also in congestive heart failure and was carrying around 34lbs worth of fluid. Since her heart surgery and subsequent weight loss (upwards of 50lbs so far) her fibro symptoms have vanished. She is also no longer diabetic.
I have no idea if these things are linked but I feel like it is more than a coincidence.
My mom was diagnosed with fibro until her sleep study came in and it was found she had sleep apnea. Almost no issues since her cpap machine came.
I have at least two friends (one old HS friend and one good acquaintance) who have it. Both of them are reliable types, so I feel like I can't dismiss it outright, but I do give it some shade in general.
Yep. We started trying last month thinking that it would take some time (I had trouble in the past with my XH), but it happened RIGHT AWAY. EEEKKK. They will be 17 months apart.
My mom has fibromyalgia. When we were little, she would go outside and scream because the pain was so bad. She was unable to work for a couple of years. It's much better now, but she's on a lot of medications that have to be adjusted and she sees her neurologist regularly.
I believe the it's muscular in origin. My mom is otherwise a very stable and healthy person.