Anonymous wrote:OP again. Lots of interesting posts here, thanks. As I said, my friend doesn't really fit the profile; she's 31 and very thin, probably too thin.

The other big thing that makes me wonder, probably the main thing, is that she has/had ALL (a form of leukemia). She went through lots of brutal treatment and is in remission, so I tend to think that is more likely to be the cause of her symptoms.

I don't want to waste time going in a potentially bogus direction and wanted to get a feel for the validity of fibromyalgia as a diagnosis. It sounds like the jury is still out. Good luck to all of you that are suffering though.

I don't look like I 'fit the mold' either. My fibro started when I was 27. I am very young looking, fit on the skinny side, never been diagnosed with any mental health issues, don't have any pets (why that matters is beyond me), and I've always been big into nutrition and "whole" foods since even before it became a movement.

Fibro is tricky because it can hit anyone at any time. It took a very long time for me to get a diagnosis. Docs kept brushing me off as being just a tired new mom, then as my kids got older they decided I had depression because I just didn't "look", to them, like I was in pain. One doctor even ordered an AIDS test, because that seemed more likely than fibro to him! Didn't matter that I've been married to my non-cheating husband for over decade. Never mind the fact that I've always been active and now I had to give myself a pep talk just to take a walk or that I have certain areas that on my body that are alway knotted up no matter what therapy I'd tried.

Also once you have this diagnosis, any problem you have in the future will automatically get lumped into the "well, it's your fibro" category. I had a torn ligament in my knee, that the docs kept ignoring because they said it was my fibro. I had to demand an MRI to prove otherwise. When you have fibro, you know the difference between your fibro pain and other pains. But it's really hard to get docs to understand that.

Anonymous wrote:If men were the main sufferers of fibromyalgia, do you think people would say it was a made-up disease?

A friend's husband argued that only women get illnesses that can't be proven and therefore are certainly mental illness. I used this to shut him up: Koro (the vanishing penis) http://www.vice.com/read/penis-panic-v15n2

Anonymous wrote:
Generally speaking, being in the ER for any reason = drug seeking. Healthy people don't usually hang out in the ER.

Wow.

I know those car crash victims, heart attack sufferers and those with compound fractures are only in the ER because they are drug seeking.

Funny, I don't know of anyone who went to an ER for car crashes, heart attacks, or compounded fractures who were not given drugs of some sort. I didn't say it was the only reason they were in the ER, nor did I say they were there for narcotics. But then, neither did PP.

If men were the main sufferers of fibromyalgia, do you think people would say it was a made-up disease?

Generally speaking, being in the ER for any reason = drug seeking. Healthy people don't usually hang out in the ER.

Wow.

I know those car crash victims, heart attack sufferers and those with compound fractures are only in the ER because they are drug seeking.

Chronic pain is a horrible thing to experience. For many people, fibro patients look perfectly normal and that leaves others wondering how could they be in pain. Medical personnel often hesitate to diagnose fibro because there aren't any definitive, quantitative blood tests (or any other tests -- CT scan, MRI) that say "Yes, this is Fibro!" The fibro tender spots test doesn't seem too reliable to me. Different doctors, different pressure levels has never seemed all that reliable to me, although my rheumatologist has done the test and I had lots of tender points.

I'm not sure I believed fibro was really until I started experiencing pain. One day on a plane, I starting experiencing pain in my legs, out of nowhere. It continued on from there. I am not overweight nor have I been diagnosed with any psychiatric disease. I do have a cat, but I don't wear a wrist brace. I can't take Lyrica or Neurontin -- I am so dizzy and sick I can't stand up. I tried Cymbalta which was a lot like taking amphetamines must feel like. Tramadol (a friend of opiate pain meds) did nothing for me and it is frequently prescribed for fibro. It is supposed to be less addicting than other opiates. The research seems to be out on that. I manage my disease by trying to eat well, exercise and generally monitor my fatigue levels. I take Advil or Aleve or Tylenol for pain and it doesn't always work. I have a prescription for Vicodin for extreme pain. I think I have taken it maybe three times in the last four years. I don't go to the ED for pain management; I go to the rheumatologist.

Fibro is real, but no one can convince you of that. For all the non-believers out there, I would hope you can respect the people (I mean people you know well, IRL) who have pain, even if you think it is BS.

OP again. Lots of interesting posts here, thanks. As I said, my friend doesn't really fit the profile; she's 31 and very thin, probably too thin.

The other big thing that makes me wonder, probably the main thing, is that she has/had ALL (a form of leukemia). She went through lots of brutal treatment and is in remission, so I tend to think that is more likely to be the cause of her symptoms.

I don't want to waste time going in a potentially bogus direction and wanted to get a feel for the validity of fibromyalgia as a diagnosis. It sounds like the jury is still out. Good luck to all of you that are suffering though.

Anonymous wrote:I didn't read all the comments, so sorry if I repeat someone else. I had a very close friend who developed schizophrenia in her mid-fifties ... an odd time for it to show up. On the lead-up to figuring out this is what is wrong with her, she had many bizarre symptoms and complaints. At some point along the way, fribromyalgia was suggested.

The point I want to make to OP is that whether the pain is a product of a physical or mental cause, it is very real. A mental cause means that it is a hallucination, yes, but a hallucination of pain is PAINFUL. Think of amputees who can still feel pain in the limb that is not there. And if it is mentally caused, the sufferer does not have the ability to just "get over it" or think happy thoughts and make it go away. Hallucinations are caused by very complex chemical issues in the brain ... they are not controlled by force of will and they are very difficult to diagnose not to mention treat.

So the bottom line is that you owe your friend sympathy regardless of the pain's cause and if you can't manage that then you are not a friend, just an acquaintance.

+1

Also, the only person I know who has fibromyalgia is a former farmwife, diagnosed twenty years ago when she was forty. Not wealthy, not overweight, not self-involved at all, worked very hard with the pigs, sheep and cattle while they still had the farm. She takes some vitamins for her pain. Some of you are very weird with your stereotypes.

Anonymous wrote:

Anonymous wrote:No - Fibromyalgia, strep throat and paper cuts are all made up conditions in a wild ploy for attention....

You can see strep throat and paper cuts, in fact you can test for strep... Bad examples

Oh yeah? Clearly was a joke.

Anonymous wrote:No - Fibromyalgia, strep throat and paper cuts are all made up conditions in a wild ploy for attention....

You can see strep throat and paper cuts, in fact you can test for strep... Bad examples

No - Fibromyalgia, strep throat and paper cuts are all made up conditions in a wild ploy for attention....

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:"I was just cleared for fibro yesterday".

OP again. So when you say "cleared", what do you mean? Is there a test for it?

My doctor probed a number of points on my body that are typically extremely tender in fibro patients. It is usually bilateral. My tender spots were unilateral (except for the base of skull). He thinks that I wrenched my neck, shoulder, and back when I was knocked down (an object fell on my head from above).

These are the spots he was looking for

So there is no way to independelty verify these tender spots? Basically you take the patient's word? The only other medical issue that can't be independently verified is mental disorders but scan can validate them. I think this is a mental disease.

I can't say what else a doctor would look for. In my case, I've been seeing a doctor following a concussion. Because I have lingering pain, a couple visits ago, I was handed a fibro questionnaire (which made me worried that my doctor thought I had it). On Monday, my doctor went over the results of the questionnaire and then probed the spots shown on the diagram. I was only tender in about 4 of them and was greatly relieved when he said that he didn't think it was fibro just muscle strains. I don't know what further testing might have been done if I had been tender in all of the spots.

I don't think that any reputable doctor is handing out narcotics on the basis of a patient saying they are sore in these spots.

Anonymous wrote:Why wouldn't you believe it is real OP? Of course it is real. People are suffering from it every day. Is IBS real? Give me a break.

Lots of doctors don't think it is real. Or they think it is a mental illness, not a physical one.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:"I was just cleared for fibro yesterday".

OP again. So when you say "cleared", what do you mean? Is there a test for it?

My doctor probed a number of points on my body that are typically extremely tender in fibro patients. It is usually bilateral. My tender spots were unilateral (except for the base of skull). He thinks that I wrenched my neck, shoulder, and back when I was knocked down (an object fell on my head from above).

These are the spots he was looking for

So there is no way to independelty verify these tender spots? Basically you take the patient's word? The only other medical issue that can't be independently verified is mental disorders but scan can validate them. I think this is a mental disease.

Anonymous wrote:Generally speaking, being in the ER for any reason = drug seeking. Healthy people don't usually hang out in the ER.