Scruf, I am so sorry you are dealing with yukky doctors.

Fibro is such a 'shunned' disease by the medical community.

Back in the 90's, I had a great rheumatologist that diagnosed me with fibro. He took great care of me. He 100% understood the condition.

I moved, and not a doctor here believes in fibro. I've been told it's a 'trash can diagnosis', a 'elimination diagnosis', etc...I have every single one of those symptoms and have for 16 years.
I also have rheumatoid arthritis and that gets ignored too as I don't have the 'nodules' on my hands/feet joints yet.

but, fibro is such a tricky thing. Once you find a doctor that believes it,and knows about it, stick with him/her.

I'm so sorry for everyone going through this.

Maybe I have been brainwashed, but my understanding is that Fibro (as a medical condition) does not exist.

The thyroid condition is more likely the culpret but I know from my ex-girlfriend that Oxy helps the pain but most docs wont script it for Fibro....

YIKES! I don't know if I would have said that! EDinNC I know you didn't mean anything, but you might get jumped on for saying that!!

I'd have to agree with carolined on this one. Definitely do some more research on Fibro. I don't think Ed meant any harm whatsoever as I've always seen his posts as having good intentions. Definitely look more into Fibro though and how serious is truly is. Peace.

-MARLEY

I think what he is trying to say is that Fibromyalgia is a description of symptoms (literally fibrous muscle pain) - which are very real - but we don't know the cause. Compare this to pneumonia, for example, where the cause is known.

I know 2 folks with Fibro and trust me it's real. The one girl poor thing you can NOT touch her at all anywhere when she's flaring up - her HAIR hurts even, has to wear very loose clothing, etc. She also has rheumatoid arthritis, don't know if those go hand in hand or not. She is prescribed alternately vicoden and darvocet for it but never anything as strong as oxycodone. I wonder if fibro is some kind of autoimmune issue like rheumatism?

I think it is faerie. I know when I was going to the doctor that did diagnose me with it, he said it did go hand in hand with rheumatoid arthritis and lupus a lot of times.
I've been tested for lupus I don't even know how many times.


One doctor I recently spoke with said that he diagnoses it only after eliminating every thing else. Thus, his 'elimination diagnosis' thing.
He said it's pretty rare that he diagnoses it. I think he's one that doesn't think it exists.

When I have an especially bad time, EVERYTHING hurts. EVERYTHING.

Is there a website or anything that identifies where the 18 trigger points are? I have a friend who "hurts all time" and I wonder if she might have fibro?

Hi lori, click this.
http://adam.about.com/encyclopedia/Fibromyalgia.htm

It is considered an automimmune disease.


Get this, my ex-husband's doctor told him that Fibro was an excuse for middle-aged women to get narcotics. He said women, age 35-45 were the worst. He went on to say that he would NEVER give them (narcotics) to a woman with Fibro, but a man, with pain and presenting fibro symptoms he would, because men are less likely to lie about their symptoms and that he believes men feel pain worse than women.

The nerve of that doc! Yeah live in my body one day, buddy!

What a misogynistic a-hole! Sorry, I guess I'd better say something else that relates to the topic... but I can't, what a misogynistic a-hole!

Thanks, nico. I'll forward this website to my friend. The past few times I've seen her, she has complained about constant all-over body pain. She's in really good shape, exercises all the time, and is not really a complainer, so I know it must really be bad. I don't think she's been to a doctor about it yet. At first she said she thought she was getting the body aches from the flu, but the flu never came, and the pain is still there months later.

OMG! What an butt head doctor that is!!

Ok...well, I will say that I have all the symptoms for fibro, have for about ten years, and I have multiple other medical problems. I am in the medical field and still cannot get treatment....PRN..no insurance, and no time for dr appts between work, school, and internships...

But there is a theory that fibro is caused due to immunocompromises....thus leading to multiple forms of depression and weakened immune systems causing physical symptoms. The symptoms are real, though there is a theory that the symptoms are psychosymatic somataform disorders...

The truth is that though this does make lots of sense is that there is simply still not alot of clear cut knowledge about fibro and what causes these symptoms.

Does she warm down from her exercising? I suffer really bad with post-exercise pain and stiffness, and proper warming down does help. Stretches before bed can make the following morning more bearable.

Also, what kind of exercise are we talking about? Strictly aerobic or is she doing strength training? If she's doing something anabolic like strength training then that will certainly make you sore all over, and the stretching will make some difference but not a whole lot if you're making micro-tears in your muscle fibers (which is the idea with bodybuilding - injure them slightly then build 'em up bigger). I was certified as a Personal Trainer so I have quite a bit of experience with that.

Ran out of Edit time... She also may not be allowing enough rest days between workouts. Do you know if she's a "workoutaholic"?

What everyone seems to be missing is that by allowing the prescribing of Lyrica for Fibromyalgia, the FDA has established, legally and for the standard of care, that Fibromyalgia does exist and is a legitimate medical condition and complaint that requires legitimate, complete, ongoing and appropriate treatment based on the new standard of care established by FDA's ruling on Lyrica, including the existing use of alternative and existing treatments including opiate analgesics as well as other modalities. FDA, I don't think anyway, meant to say that only Lyrica may be used to treat Fibromyalgia, but that it can specifically be used to treat it as well as using other established possible treatment therapies, particularly opiates - the point being Fibromyalgia exists and a physician should be reminded of this if and when they equate Fibromyalgia with drug seeking behavior (unless a person, as in an above post, actually is engaged in drug seeking).

I would really appreciate knowing what chemsynth and the other docs and nurses on the Board think of this. What do you think Ed, et al? Am I on track with this or is there still room to debate Fibromyalgia's existence? Seems like FDA approving a medication to treat a condition seems to establish once and for all the actual existence of that condition.

Or am I way off base on this?

Thanks for your responses nephro and faeriewitch. I'm not sure of her exact routine, but I know she does aerobic, treadmill, bicycle, yoga, and tai chi. She works out about three times a week and alternates what she does. She's been doing the same thing for years, but the pain just started a few months ago. She's definitely not a "workoutaholic", just enough to stay in shape, be healthy, and feel good.

Ahh, another proud graduate of the International Neanderthal University, in the division of the Medical College of the Vacuous Chauvinist Valley.

well, thank goodness that doctor probably wont be around if and when medical science makes it possible for a man to give birth,because if men feel pain worse than women, they're gonn have one heck of a time with that one. Probably a team of ten or 12 anesthesiologists............




What a jerk.

MoodyBlue makes a very good point. I agree completely. besides, for several years now there have been established "trigger points" on physical exam that are normally used to diagnose fibromyalgia.

Many doctors I've seen have said that if I only had the trigger points,they would NOT diagnose as FM.Here are a few symptoms I have that are common to FM and were diagnosed a long time before the FM diagnosis.
Trigeminal Neuralgia
Headaches/migraines
TMJ problems
Teeth cavity issues(unexplainable)
Chronic Fatigue
Hyper-glycemic type symptoms
Anxiety
Insomnia
And this is just the main ones.Pain alone really isn't FM.Or at best it may be the mild onset of FM.

okay,i know this thread is for fibro and am so glad to see that we help eachother out. it is so nice to see the info shared within this thread.
fibro patients unite!!!!


thyroid problems can cause fast and slow metabolism. real skinny people usually have an underlying thyroid problem,beleive it or not.
and the same holds true for a slow metabolism or being overwieght.

when they take the blood test to test for uneven thyroid hormones, they compare your results to the human average.
gosh, i cant make this make sense.

but, when you look at your test results,you see your levels,and then in the next row,you see the average levels.

just because your levels fall into the normal range,does not mean that they are normal for you.
every body is different.

also, when getting the test,you have to make sure they ,check for thyroid antiboties,t3,t4,tsh,and one other thing.

usually the test the standard doctor gives is not covering all of they hormones created by this gland. they only check for the thyroid stimulating hormone,and t3.
but the test is missing out on all of the hormones.

does this make sense

there is a wonderful and informative book out by dr sholomon(spelling?)
it is called 'the thyroid diet'. she has a few books out all about this gland that gives a good percentage of the human population,so many problmes that go undiagnosed because the proper tests were not given.

even though my levels of the hormones seemed normal and came up in the normal range, i still had thyroid problems.

they found 3 lumps on the gland,benign, but those lumps were forming and creating negative hormones. it is called thyrotoxicosis.
i now take synthroid every day,for the rest of my life.

when i was sick,the symptoms i had were as follows:

mood swings,weightloss(20pnds in 30 days),depression,blurred vision at times, abnormal menstal cycles, hair loss, loss of appetite, eneven pupil dialation, and the list goes on.
bot was i fun to live with at the time! god bless my husband!
it bugs me when i hear all these symptoms coming from a person,and the doctor says theres nothing worng,and he/she bases that off the average results given by the health care industry.

when results comes back looking normal,but you still ahve all these symptoms,it can be quite un nerving. you know somethins wrong,and now they want to start giving you tests for other areas of your body.
do not fall for this, demand another test that incluides all of the funcitons of the thyroid gland.

also, if you do alot of research, you will find that fibro patiients usually have an underlying thyroid probelm.

and when getting diagnosed with fibro,the symptoms at first can be similar to thyroid. therefor,you get diagnosed with fibro, instead of thyroid disease.

like i said earlier,fibro has pain,but thyroid can cause pain from being lethargic and having no energy.

these are 2 different diseases,but have similar qualities.
please,look into thyroid problems,wether you have all the symptoms or not.
if you have fibro, get your thyroid checked.

since these are autoimmune disorders, they function hand in hand.


please let me know if this all makes senses and if i should start a new subject about thyroid problems.
i hope i am n ot harping but this thyroid problem people have,i am very passionate about.
it is the most mis diagnosed,un diagnosed,un detected problem people have.
even people with depression,anxiety,bipolar,manic depression, panic attacks, and other mental illness,usually have an underlying problem.
once the thyroid funciotning properly, alot of folks can lower,if not completely get off their antidepressants.!!


im done preaching,please call on me if i can give any help or info!

back to the fibro subject at hand!
cheers!!!!

Sounds like she's not overdoing it, those are all aerobic. Stretching would be sufficient for those types of exercise. It's something else then for sure. She should get it checked out. Just make sure she's eating well - i.e. a balanced diet - protein, carbs (veggies & fruit too), fat, AND WATER - not just carbs like most women do. Nutrient deficiencies can manifest as all kinds of weird stuff. Potassium deficiencies in particular can mess with muscles/joints.

And ROSE22, thanks for that info. I've lost 10 lbs in the last 6 months or so (10 lbs that I didn't really have to spare to begin with) and had my thyroid checked twice, once it showed T4 messed up, 2nd time all came up normal. Not sure what to make of it as I'm still losing weight. (The only benefit to it is that at 41 years old I have almost no cellulite!) Does hypothyroid make you lose your appetite?

It made perfect sense and was a great post ROSE22.

I've also heard that you can have both FM and thyroid problems at the same time.Do you have any info on that?

Joker, my friend with fibro also has hypERthyroidism (along with rheumatism...)

Of course you can have two things at the same time. Comorbid conditions exist all the time. You can have allergies and the flu. You can have melanoma and heart disease. Having one thing does not preclude you from having 1 or more things going on at the same time. The older you get the more likely you have more than 1 thing going on.

Enjoyed your post. Just wanted to expand a little more on why there is little acceptance among the medical community. Mayo Clinic updated their info on fibro Nov. 07. One of the leading medical groups is still not very definitive about this illness. The info has a lot of subjective type of wording. There is better consensus from the Rheumatology and Chronic Pain docs for signs, symptoms, and treatment. Many docs out there were trained back when fibro was thought "mostly in the head" so there will be a long time before they will change their thought processes concerning symp,dx, and tx. I posted earlier on page 3 of this thread a current continuing ed lecture for credit for the medical community which has some of the latest thoughts on FM. If the docs are just getting updated it will be awhile for these thought changes to take place. I am not saying I disagree with all your thoughts. I totallly agree. I'm just saying it will be hard still to find a sympathetic doc for this. Your best bests would be a rheumatologist or chronic pain doc for the most current treatment.

Rose,

Excellent post! I went through the same symptoms which took over a year to be properly diagnosed. My husband deserves sainthood for putting up with my moodswings alone. It took a tenacious internal medicine doc to finally make the diagnosis and then get me the proper treatment. It was 10 years ago but I will never forget that doctor or her dedication in finding what was wrong with me. Five previous "specialists" gave up and said it was all in my head.

KG

It's every time someone replies to a post where the title is different - the new title keeps getting on top. The best way to avoid this is if nobody changes the original titles (unless perhaps they contain an error).