Pet Peeve - "Idiopathic" and "Fibromyalgia"

Sorry, gotta rant this morning, and I have references to back it up.

Idiopathic and Fibromyalgia. Apologies to anyone with these diagnoses, but I think you guys in particular should know what those words actually mean.

Both of those words mean virtually the same thing. "We're not sure either".

Fibromyalgia comes from the Latin fibra (fiber) and Greek myalgia (muscle + pain) and means "pain in muscles and underlying tissues". It states nothing about the cause or the actual disease, it's a description of the symptoms. But it has an underlying cause. It's just a lot of work to find it, and a lot of docs won't or don't take the time or resources.

Idiopathic literally means "disease of unknown cause" "or more literally "unknown pathology" (pathology from the french "pathologie" meaning the study of diseases) and is usually attached to another term, like "idiopathic neuropathy" - Which would mean by definition, "unknown nerve disease", like when a nerve hurts or doesn't work properly. This is also just a symptom, not a diagnosis.

But since those two words are accepted in the medical community as actual diagnoses in the ICD9 (diagnosis codebook - Fibromyalgia 729.1 and Idiopathic Neuropathy 356.9) instead of just symptoms, doctors don't have the onus on them to find the root causes and can get away with just "treating" the symptoms. The patient gets no real relief or possibility of a cure, as those two words can let a doctor be lazy and file those codes on the insurance forms.

My medical background - studied as an Emergency Medical Technician (family issues came up before I could take state board exams, then I found out how much EMT's really made, and got a job that actually paid money), worked as a physical therapy assistant, mom's a retired RN(Drs offices and hospitals, from ICU to ER), dad was a combat Navy corpsman in Vietnam, now a retired respiratory therapist, I've got half a dozen cousins who are nurses or are otherwise involved in patient care. I used to sit on the can as a kid and read my mom's Grey's Anatomy and nursing books. Hospitals and doctor's offices have been the family business for a couple of generations now.

/rant complete

My condition in my abdomen causes many different symptoms while right now they have nothing to call it.. But if they didn't treat my symptoms, I'd be miserable! :(
Just because they created a name for all the symptoms and are treating them, I wouldn't necessarily declare they are not doing anything to cure fibromyalgia. As with whatevers going on with me, some things take time and research to figure out..

Again, I didn't mean to offend anyone with those issues. Or any other issues. But it's a sign - to me - of a lazy doctor who will not search for the root cause, and only put the symptoms as the diagnosis.

He offers no cure. He offers only treatment of the symptoms, which is a big help. But wouldn't a cure be much better?

A most offensive posts, these illness are real, even if the codes might not be. A lot of illness/diseases can have bad classifications, but it does not mean they are fake! Look at how many people here with degenative back pain have it classified as lumber radiculopathy.
Whats your point here? And where you coming at for this? As it does sound arguementative.

The reasoning behind it is what I perceive to be physician laziness. And yes, it has to do with my condition. I have said before, the worst thing a patient can do is diagnose himself. But in thoroughly researching my conditions, I have found something that may possibly fit, and has genetic markers, which can be tested for, instead of just "pain". Not that there is a cure for it, but the doctor won't even run the genetic testing. It's Ehlers-Danlos Syndrome, and every one of my signs and symptoms, from nearsightedness, hypertrophic skin (scars and tattoos are raised, but not to the extent of keloid skin), early onset osteoarthritis, and frequent diverticulitis are on that list, along with many others. Except for the ones about getting pregnant. I have the wrong equipment for that. What's really scary is that it also carries a risk of sudden aortic aneurism or rupture. I'd kind of like to know if that could happen to me. But again, the genetic testing won't be done. This syndrome was discovered in the late 1800's and is rare, but not unknown in the medical community. There are different forms, and not all symptoms fit all forms. That's why genetic testing is the only real way to diagnose it. It has to do with the quality of the collagen the body produces.

The American Medical Association and insurance companies lobbied to have these called diagnoses vs symptoms, because it's easier to treat symptomatically, putting bandaids on everything as they pop up, rather than than be an actual physician and find the root cause, I think because the root cause of many chronic diseases, they don't know how to fix, and either will not admit it, or can't get the research to work. But now, with chronic pain, the options for pain management are becoming harder to come by, so the cure or root cause is becoming more important to find. That is the root of my argument here.

Once they become a diagnosis, there is nothing further for the doctor to do. He has a code to put on an insurance form and he can move to the next patient. A symptom and a diagnosis are different.

Bleeding and pain are symptoms, not a diagnosis. You have to treat the symptoms, but you also have to make make a diagnosis, or find out what caused the bleeding and pain. The spoon sticking out of his leg may be an indication. By deduction, we can call that a stab wound. That's a diagnosis. Call the surgeon.

And Chartreaux, I am not saying that the illnesses aren't real. I am saying that doctors are not finding the cause of them. It continues to elude them. There are lots of examples of this. MS, Muscular dystrophy (in all it's forms), cancer (in it's different forms), HIV/AIDS, Lou Gehrig's. Plenty of examples.

I picked on those two in particular because they are so widely used, and seem to be the "we give up" diagnoses, just treat the symptoms, maybe it'll get better.

Osteoarthritis, bursitis and the like at least show up on xrays and other tests and pictures, and can show swelling. RA is an autoimmune disease and can be found in a blood test. Bipolar disorder is due to serotonin imbalance. There isn't a real test for that, other than the outer manifestations of behavior. But even that can be observed by someone other than the patient.

I understand the research is being done. And it is critical. And sometimes wheels turn slow. Understood. They have been working on cancer forever.

I wish I could get another doctor, sjkly. I am in the LSU hospital system (which really isn't a bad medical school to tell the truth), because of being on disability and what the state of Louisiana lovingly calls "indigent care" (I'm broke). I can ask for a referral to another doctor in the clinic, but they are all residents and answer to the same attending, and it would be 3 months before another appointment is set with anyone, unless I start barking up the ladder. Then I run the risk of becoming a troublemaker. Do I rock the boat? And lose the only doctor I get to see? I can't afford anyone in private practice, and have no medicaid or medicare (until Jan of 2014). That pesky 2 year waiting period between getting disability and qualifying for medicare, yet getting just a little too much for medicaid.

Do you sense a little of my frustration now?

I haven't even seen the "doctor" (3rd yr resident) yet. That appointment is on Thursday. I called and spoke to his nurse, and laid out everything I had researched, and asked, since I have to go Tuesday for bloodwork, if that test could be included. Emailed over my research. She checked. And the answer was no. Hence, my rant.

Again, my apologies if I offended or upset anyone, I know everyone here is trying to get by, and we all have our own set of issues. Mea culpa.

I must have strange doctors. My GP encourages me to tell her when I need treatment different from what her other patients might need due to my autoimmunce condition. For example if I go in with bronchitis I tell her I need to treated aggressively with antibiotics even though bronchitis is usually viral or allergic.
My rhuematologist responds positively when I tell her things like, most of my symptoms right now are being caused by lack of sleep, or, my family has this history so I may need to be tested for...

However, if you are in a position where you can't change doctors that stinks. I am sorry you are having to go through all of this.

Thanks for clairfing that. I get confused sometimes. Sorry.

Well LivingColor we all are entitled to our own oppinions, but at least with fribro being listed or identified as a legitiment diagnosis, (whether one agrees with it or not) they are at least being treated for it, and that is whole lot better than just a few years ago, when people were treated like malingerers and psych cases when they did not have the fibro diangnosis. Those patients were treated terribly, and you talk about frustration!!!!!

 I would hope people with fibro understand that this discussion is not about their having a legitiment condition, as we all know that it is officially recognized as such, and the research has proved it as such. It seems from what I understand this discussion to be, is that some people feel that doctors are using that diagnosis to often, instead of doing further tests and research, to find out what really might be wrong with the person. Especially if the person feels that they think there is something else going on.

Some of us of the people here are lucky and have established a good relationship with their doctors and their doctors are receptive to their pataients request. I my self had, had doctors like that, and they are a blessing, how ever, not everyone is fortunate to have a doctor like that, or have developed that type of relationship with their doctor. One does have to stand up for themselves and be their own advocate, but with that said, one also should be (how do I want to say this?) cautious, and use candor? especially if they are in a situation where all the doctors work under the same umbrella so to speak. Like it or not, patients can and are labled by doctors and that can affect their treatment with other doctors. It is just something that does exist in some places and one should be aware that it can happen.

Anyway, I hope that the folks here have not been offended by my postings on this thread, and nor by anything that anybody else has posted I have read over everything, and I think if people take this as it was intended they won't like me see anything offensive in this thread. If that is not the case please let me know and I will take another look at it.

White Beard

Just to add my "two cents"....I have fibro and extreme idiopathic reactive hypoglycemia...both words used in the original post and I am not offended in the slightest.

I see a member who is frustrated, upset, and very nervous right now.  He/She has to face a new DR (which is difficult for most of us because of the judgements we receive) and really wants answers.  I think we can all understand wanting answers too.

Now I don't have a problem with the diagnoses I have been given.  Depending on the Dr...some believe in them...some say they are just buzz words to cover what cannot be diagnosed as something else.  I have doctors of both lines on my treatment team.  It makes no difference to me what they call it.  I get my disability and I got my medical retirement.  My symptoms and pain are real.  I have had every test imaginable (including some genetic testing) and nothing concrete can be found in what the doctors "think" I have (beyond the million and one diagnoses that fit their particular speciality).  That's OK too.  Mine are doing their best.  Some doctors do and some don't.  Believe me.....I have had both!!!!!

A lot of emotions came out in the posters on this thread because many of us have the diagnoses that were named in the original post.  We fought hard to get a diagnosis at all and don't want that taken away from us.  Without a diagnosis, we can't receive treatment.   Our friend is only looking for the same, however, he wants a deeper diagnosis....the bottom line problem for himself (or herself)...I do not pretend to know and apologize if I have used him/her inappropriately.

I think this is the perfect place to voice frustration and vent.  I know I use the board when I need a safe place to vent and i feel we should give the same to others.  LivingColor has apologized multiple times.  Can we not stand behind our member and give him/her support when he/she needs it?  This person is suffering and scared right now of having to do all of the test again and starting over with a new young doctor *this info is from a previous post*.  Let's give him/her a break.  This is our member and our member needs us.

 

LivingColor you were not off the mark at all about Fibro. Many people are give the dx because the dr is tired of listening to the patient come in with the same complaints and he cannot find anything wrong with the few tests he has done. We all know that Fibro is a real medical condition, even though there are some hard heads out there that refuse to believe it no matter what. But, its true, a good number of people are given the Fibro dx wrongly, only because the dr will not do his job and investigate and listen to his patient. I was reading about this in an article written by a dr. Its is exactly as this dr said, give the patient a dx and that shuts them up!!!

I have a friend in Louisiana, Bossier City, seeing a PM dr there, I can try to get a name for you if you like and if you are close to there......Susie

I was diagnosed with fibro 9 years ago. I should've kept digging at my doctors for some other diagnosis. I kept having symptoms and each one got shafted into the "fibro can cause that" theme. Well, no... not really.. can fibro cause every single thing.

I have no doubt that fibro is real. Too many people have it and too many docs believe in it. But I do agree that way too many docs hit on fibro and just stop right there.

If my original docs had been more like my current one, I would (probably) have a better quality of life than I do now. When you have serious spinal issues (cervical and lumbar) and all your muscles get cranky and spasm and pull and pinch... there is not an accurant "pressure point" test. That was one big criteria the docs used for my fibro dx.. well duh.. I hurt all over, don't care where you push on my body.. it hurts.

My current doc is a crusty older man who speaks his mind, and not always that nicely. He could not BELIEVE that 9 years ago I complained of neck and upper back pain and these docs didn't order an MRI. He said fibro is a dx that is made after every other option/test has been done, ordered, ruled out..etc.

But is sure is good that the dx is there. Otherwise a lot of people would go thru a lot of needless pain, while docs try to figure out why.

I went through that while i was waiting on my disability. The wait was so long that when I did win I got the medicare retro by three months.

Unfortunately there's not much you can do as far as specialists go until you have the medicare. My primary care is a clinic that has a sliding fee (something to look into they are everywhere).

I was diagnosed years ago with Fibromyalgia. For a long time I seriously thought it meant 'I have no idea what is wrong with you, here take these pills'. Apparently I meet all the criteria for Fibro so I've finally accepted that it really is my dx as far as the Fibro symptoms go.

I have other problems that far overshadow any Fibro pain, so I don't actually think about it much anymore.
I do agree that doctors need to look harder than they do instead of slapping the Fibro label on everyone. I had to go through a lot of testing before I was diagnosed.