my ex-doc told me fibro does not even exist. he says it is a made-up "condition" used by women to get opiates. he was gleeful when they came out recently with lyrica, says it derails all the opiate-seekers using the fibro complaint. I wouldn't doubt he feels the same way about migraine sufferers. he even devised a 30-question sheet to ask migraine patients to determine if they really have migraines or are drug-seeking.

he has no problem rx'ing benzo's though. ask for a narcotic or just go in nervous, shaking and wring your hands - he couldn't rx benzo's fast enough, just wanted you out of there!

despite having all the classic symptoms, (dark urine, abnormal test, intense itching from bile backing up in the blood, yellow eyes) it took hom 3 months to finally order an mri that showed a cancerous growth on the pancreas was blocking her bile duct. at 87, she had to have the whipple procedure, the most invasive surgery there is other than a liver transplant.

also, every time I'd ask a question or he needed to rx a med, he had to mess around on the computer to find an answer.

and all this takes 10 minutes. if you need longer, the only thing you can do is block the door, stand in front of it till you are thru with your questions and concerns. then bills the ins co for $165!

are doc's all like this? I fired him obviously, but mom still goes to him. I feel like I really have to research all symptoms now and tell the doc what's wrong. shouldn't be that way.

luckily my sub doc is a regular doc - she's my pcp now. charges $98 for a once-a-month visit and spends the full hour chatting. you can get out all your questions out and get intelligent, unhurried answers. no computer in sight. almost like a welcome therapy session.

i was told fibro is a mental condition also,basically it is in our heads.
and that someone claiming to have fibro,is just a drug seeker,who needs couseling for their addiction problem.

i dare this doctor or anyone of them,walk in my body for a few days and then tell me my pain is fake and in my brain and i am drug seeking!!
please!

scruf,your pain is real and you deserve real compassion from a reaL doctor!
thank goodness you have the common sense to drop him!

now,where do you go?
back to the drawing board!
good luck to you!

What a real piece of work that doctor mentioned above is. He(I'm assuming he is male) just doesn't know everything like he wants us meek patients to think he does. That just makes me sick how insensitive and uncompassionate another human being(let alone a physician) can be to others. Don't get me wrong, I have gone to some real "winners" in the medical fields that were WOMEN, who didn't sound much different, so no sexism on that at all. Just depends on who you wind up with, I guess.

As another Fibro sufferer as well, who was OFFICIALLY diagnosed less than 5 years ago, but suffered WAY longer than that, I totally empathize.

Also, Fibro may have psychological ramifications, but only due to the chemical imbalances that usually go along with it as well. Those same chemicals can also cause people to be predisposed to SLE, RA, MS, just to mention a few. Yes, good ole' Serotonin, Melatonin, and the like can have a direct effect on this stuff, to be sure, as well as 5-HTP and many others.

I think they think since there isn't a specific blood test or x-ray or other diagnostic tool that cinches it, then it doesn't exist. Oh, but if there were an equal amount of men that suffered from it(no offense to you swell guys-not your fault the medical profession is somewhat of a crock sometimes:), then...well...I don't want to speak out of turn, because my best friend who suffers from a VERY detectable and blood test confirmed chronic disease also has Fibro and yes....he is a GUY! As to not hurt our fellow DB FELLOWS on here...that's not my intent AT ALL!

It is sort of like when women have hormonal imbalances. I know personally, my docs have never just said, oh well here honey....lets inject you up with some Estrogen, Progesterone, etc. and that will fix you right up. But, my guy friend who has an imbalance...his doc gives him Testosterone injections any time he is feeling lethargic or weak, along with B-12 and some other things. Granted, I know that some of their issues are different and if they get an imbalance, it can cause other problems that we ladies may not have to deal with too. Just one of those things I have never understood I guess, but trying.

Then, he goes through much of the same trials and tribs that we ladies do with his docs for some of the same reasons...just different aspects, so I DON'T really think it is all about sexism here...not completely anyway. Doctors have a lot of prejudices toward their patients that have nothing to do with that. Then, NOT all doctors are like that either, so to the kind, compassionate and understanding ones out there....good for you, thank God we have you and KUDOS!

So, just wanted to vent and tell you others to hang in there. I know how hard just living with this is, let alone dealing with jerks who have no idea what they are treating.....or NOT treating as these cases seem to be.

Pain-free as possible days to you all, as well as WUV! That sounded corny, didn't it? lol

V

My doc also thinks fibro is a tool to obtain pain meds, he was on the Lyrica bandwagon before the TV ads, if a patient want's an opiate for fibro he simply sends them to another doc that does script large dose opiates for fibro so everyone is happy.

He also indicated that Fibro is a real condition but only about 1 in 100,000 people suffer from it (mostly women).

My 2 cents

My PMP also thinks that Lyrica is a wonder drug. She keeps saying "if you only had insurance we could put you on Lyrica and your Fibro symptoms would go away." If she would have looked back a little, she would have seen that she already had me on Lyrica for PHN and it did nothing to help my Fibro.

Is there any sort of test that can confirm a diagnosis of (or absence of) fibro?

Right now diagnosis is based on patient symptoms.If a patient has x number of symptoms than they presume it is fibro. There is no blood test or xray etc that can be performed to define it. Like strep, either it is there or it isn't in a blood sample. You can definitely say someone does have strep by the presence of it in the blood sample. Not so with fibro.

What Is Fibromyalgia?
Deborah A. Barrett


Fibromyalgia is not a new syndrome; evidence for its existence dates back centuries. Until recently, however, the cluster of symptoms that comprise fibromyalgia, or fibrositis one of its former names, were largely considered psychogenic. It is the case that doctors who lack a physiological explanation for symptoms are prone to attribute complaints to mental problems or malingering. This has been the case for fibromyalgia because it lacks a clear test to verify its existence, its sufferers "look fine," and are predominantly female, a group less likely believed. This skepticism began to change in the late 1970s and early 1980s when more research became available about sleep abnormalities and reproducible tender spots in fibromyalgia. An important group of rheumatologists (the specialty of physicians that treat arthritis) realized that this group of patients did not fit the profile of hypochondriacs. Rheumatologists started to pay more serious attention to the suffering described by these patients, who continue to make up 20% of a rheumatologist's practice.

I believe fibro is a real condition. Unfortunately there are many, many docs out there who don't believe in it. mmyp

I don't think there is any test at all that can confirm the condition. Thats why it is so hard to get a doctor to listen to all of your pains and symptoms, and give you something. There are of course, some doctors that are more willing to listen to you.

I think the lack of a test is the reason so many people that try to file a disability claim, fail to get accecped.

I thought I read that they are coming out with a test for fibro.

Hey Scruf, sorry to say there is not any specific way to diagnosis it for sure. If researchers would find a test via blood or something then alot of people would finally at least get diagnosed. There is only the classic symptoms which consist of several things but the main being pain and discomfort in 18 trigger points. Many doctors still refuse to believe it does exsist but I know of a lady who finally was able to get on regular disability for fibro and it alone which before was about unheard of without some other diaknosis to go with it. I would think if social security finally recognizes it as a valid condition that presents enough adverse problems or requires pain medications which do effect you ability to work then some progress has been made. Only a little though because probably 91% of the docs, don't believe in it still and that is said for those of you suffering! There are some clinical trials stil being conducted on it and can be loked up at clinicaltrials.com and those studies do help to bring the evidence to the light

seems alot of us were answering at the same time! Sorry peeps, your responses were not there or rather seen by ne until I submitted mine.

Was it the blood pressure test?




While such fibromyalgia tests as a tender point count physical exam have been useful in the diagnosis of fibromyalgia syndrome, a new fibromyalgia test is being used to identify whether an individual experiencing fibromyalgia symptoms such as fatigue and cognitive impairment truly has fibromyalgia. The test is based in part on the most common of the symptoms of fibromyalgia: pain. A recent study that tested blood pressure (BP) discovered that participants with fibromyalgia were 69% more likely to experience pain during a routine BP test than those who did not have fibromyalgia.


Using A Blood Pressure Test to Diagnose FMS
The study found that while fibromyalgia patients experienced discomfort while undergoing a blood pressure test (or a sphygmomanometry), only 20% of the study participants that did not have the condition did so. Therefore, experts believe that a blood pressure test can be a useful tool in fibromyalgia diagnosis.

Allodynia is the term given to the condition in which an individual experiences pain and discomfort in reaction to a stimulus that typically does not result in such responses.

The study participants with fms experienced pains at levels less than 210 Hg. Pressure was sustained for a maximum time of 30 seconds or less.

Participants were tested on their dominant arm, although participants reported that pain was experienced on both arms.

In addition, findings have shown that a BP test is more reliable than a tender point count that is part of a typical physical exam in the diagnosis of fibromyalgia. In such a test, a variety of areas sensitive to pain (known as fibromyalgia tender points or fibromyalgia pressure points) are examined for their response to pain.

Blood pressure tests are typically used to evaluate cardiovascular health. A blood pressure test includes wrapping a cuff around the arm. The cuff is then inflated, causing a large artery in the arm to compress and blood in the arm to stop flowing.

When the cuff is released, blood flows once more, producing sound. Your doctor listens to this sound in order to check that your blood pressure is healthy.


Blood Pressure Tests: A New Fibromyalgia Diagnosis and How It Affects Treating Fibromyalgia



These findings suggest a new ray of hope for fibromyalgia sufferers. Because of the believed accuracy of a blood pressure test in fibromyalgia diagnosis, those whose lives are being affected by common fibromyalgia symptoms, such as chest discomfort, anxiety and vision problems, can be directed to fibromyalgia treatment sooner by their health care providers.

Typical treatment options for fibromyalgia can include physiotherapy, chiropractic care and cognitive behavior therapy.

Wow,, I was reading this and I have SEVERAL of the Fibro. symptoms.

I personally have the following:

~headaches - daily

~ for the past year or do, it seems I can't remember things, the way I use to could. (I use to have an awesome memory and it has gotten bad, lately)

~abdominal cramps (a few times per month)

~ waking up feeling more tired than when going to bed (this has also been going on approx. 1 year)

~ my hands will get "shaky" for no reason......(happens 3-4 times a week)

~nausea (all of a sudden, I will feel nauseated and then be okay a few minutes later) (this has went on a few months)

~ stay tired

~ vision has changed (can't drive as well at night)

~ anxiety (I do take Xanax for my anxiety)

Coinceidence???? or could I have Fibro.? Very strange feeling when reading the articles and researching on the web. I have over half of the things!


Should I let my dr. know about these....wow, too strange.

What do you guys think? I just figured it was the "growing old" thing.......

I hope this page works it is a cme from a website where I do online training.

Is anyone able to read the document I put up? since my computer has cookies I am unsure if it is downloading the doc.

no wonder fibro is so hard to diagnose! I think most women have these feelings, but just figure it's because we are getting older, didn't get enough sleep, too much stress or responsibiity, etc.

that's why I was wondering if there is a clear diagnosis tool for fibro - a definite yes or no finding.

Sure why not? I think though that the symptoms are general and relate to many kinds of illness that you may or may not get much help for it. Never hurts to ask if the doc has time. Don't be surprised if you get The Look from your pcp as "oh no another person read this on the internet and thinks they have the disease" Some docs absolutely hate this kind of discussion and others are ok with it. Good luck.

No yes or no test.

couldn't read link - it went thru a bunch of stuff to adobe reader, then told me my version of something couldn't support it, with an offer to update, then crashed altogether! wish I knew more about computers.

I sometimes think the doctors hate the internet because we can educate ourselves with an intense interest (it is OUR body) to the point that we know more than they do, and it is threatening to them.

with no "yes or no" test, how could they think they have come up with the perfect med (lyrica) for it? they probably just saw the potential for a big money-maker, since fibromyalgia is such a common diagnosis.

scruf, you are right....alot of people have quite a few of those things wrong.....

Does the blood pressure play a part, as far as detecting the pain level, at that time?

Maybe alot of women have Fibro.!?!?

Who knows?

Having fibro is scary. I was diagnosed when I was barely 20. I spent the whole day at the doctor's, at the end of which he said "You have Fibromyalgia", and he handed me a pamplet. Oh and a script for Elavil. I had to do all the research on my own. The tremors were the scariest thing. I still get them often and they are pretty noticable. I don't know if I have fibro or not. I know I have something. I think that the doctors just give up after awhile and throw you a diagnosis so you will just go away. I recently had an ANA panel done and the results were "elevated", so I guess that means I could (might) have something more along the lines of Lupus or RA. The last few times I was at the doctor the nurse commented on my increased heart-rate. I finally asked her if it might indicate the fact that I was in pain (duh)? She just looked at me and said "oh, you are probably right."

I have all those symptoms too. I have daily headaches that urn into Migraines, my sleep pattern is all messed up - I am exhausted in the am wide awke at night. (I never had this problem until about 2 years ago) a lot of anxiety, I have had PMS like cramps everyday for 1 month but no. yet, & tight muscles

I do have Lupus. I saw a different Rheumy than my regular just for a 2nd opinion. He said I also have Fibro. I haven't brought this up to my actual Rheuemy yet because I feel like I cheated on her lol! I have been seeing her for 7 yrs, but felt it was important to get a 2nd opinion since I seemed to be getting worse not better.

All I know is it is real and it is painful.

I also get pains that seem like they are in my nerve endings all over my body. Does anyone else get this? That is the worst pain imaginable, even more so than the Migraines - and they are awful!

There is in the body something that is called substance P. It is a neuropeptide and neurotransmitter. This substance P has something to do with the pain pathways. Lyrica works on this substance P. I think this is why some docs think it might be helpful. The module I posted explains some of this. It should be noted that the three docs giving this lecture have some financial ties back to the company that produces lyrica.

From Wiki: In neuroscience, Substance P is a neuropeptide: a short-chain polypeptide that functions as a neurotransmitter and as a neuromodulator. It belongs to the tachykinin neuropeptide family.Functions
In the central nervous system, substance P has been associated in the regulation of mood disorders, anxiety, stress, reinforcement, neurogenesis, respiratory rhythm, neurotoxicity, nausea / emesis and pain.
The vomiting center in the brainstem contains high concentrations of substance P and its receptor, in addition to other neurotransmitters such as choline, histamine, dopamine, serotonin, and opioids. Their activation stimulates the vomiting reflex. Different emetic pathways exist, and substance P/NK1R appears to be within the final common pathway to regulate vomiting. [1]

Substance P antagonist (SPA) aprepitant is available in the market in the treatment of chemotherapy-induced nausea / emesis.


[edit] Pain
Substance P is involved in the transmission of pain impulses from peripheral receptors to the central nervous system. It has been theorized that it plays a part in fibromyalgia. Capsaicin has been shown to reduce the levels of Substance P probably by reducing the number of C-fibre nerves or causing these nerves to be more tolerant. Thus Capsaicin is clinically used as an analgesic and anti-inflammatory agent to relieve pain associated with arthritis and many types of neuralgia.

There are a number of tests that will show abnormalities,but it doesn't mean it is Fibro.The tests are just too expensive and most doctors don't know about them.
MRI's will show the extra sensitivity to pain.
Sleep Lab studies will show brain wave abnormalities.
Plus there are others.New ways of showing REAL physical symptoms are being discovered all the time.Probably because the drug companies and medical industry can smell a LARGE new market and are spending money on more research.

mentoramy, have you had your thyroid checked?

from the symptoms you listed, it sounds like your thyroid is not making adequate hormones.
thyroid disease is a immune disorder,just like fibro,and can have some of the same charectoristics..

before you look into fibro,mbecause it is much harder to diagnose,please look into the thyroid test.
it is a simple blood test that measures the amount of thyroid hormones your body makes.
a complete thyroid test will include testing the following hormones:
t3,t4, thyroiglobin, thyroid antiboties,and i forgot the other one.

years ago, i had these symptoms you mentioned,and the doc tested my thyroid.
the results showed that my thyroid was making negative hormones. it is called 'thyroitoxicosis'.
my thyroid gland was making negative thyroid hormones which was attacking my body and mind,litteraly.

the gland itself,also formed 3 goiters(small lumps) on my gland and i had to get a biopsy done to make sure these lumos were not cancerous.

once detremined these lumps were benign(spelling???) and the blood test came back with uneven levels of thyroid hormones, they were able to get me back on track.

everything is fine now,even with having fibro and hypothyroidism, i am fine.

both of these are auto immune disorders,and often get mistaken for eachother,if you are not seeing a specialist.


obviously, fibro pain is not the same as thyroid problems,but it would be the best thing any woman can do at anytime in their lives when they are having weird symptoms,is to have their thyroid tested.
it is amazing how such a little gland can have such a huge impact on your mind and body.


whatever you decide to do,or what you look into, i hope these pains and woes will take a break and let you relax and take a break.

man, am i stuck in a flare right now and the last few days.
cant remeber nothing, my body is sore,my eye balls hurt,and i have no energy.

and they say fibro is a made up disease!!
bull honky!

Did you mean the lumps were over where your thyroid gland is?


DITTO.

Joker /The thyroid gland grows uneven sometimes producing little bumps and nodules on the gland from its own glandular tissue. Sometimes it is benign sometimes it is cancerous. Can't tell without further studies and biopsy. Either way it can affect every metabolic process until fixed.

My 85 year-old grandmother swears that I have a thyroid problem. She says that she had all the same problems and since she has been on thyroid meds they have all gone away. She said it is also why I have to fight my weight everyday of my life when every other female in my family is stick thin. I have had my thyroid checked maybe twice in my life and both times the results were fine. Who knows. With no insurance right now I don't have a whole lot of options when it comes to medical diagnosis/treatments.

Thanks so much for the info. Rose. It is MUCH appreciated!

I am the opposite, nitemoon, I am small and can eat and eat and eat and not gain I am not complaining though