Does anyone have a doctor who is comming here to read our posts? We here seem to have so much more information than our doctors do on this horrible and insensitive condition. We talk about every nuance of what it is like to have Fibro, and yet no one seems to be hearing anything from the doctors that are supposed to be helping us. Most seem to be ignoring the cause of this, and will only treat the symptoms... that's not going to help us win our fight to get rid of this thing. I will gladly state that there are a scant few who are mentioned here who seem to be interesting in helping, but there are so many more who just throw a pill at us and say go home.... it's so sad. Why wont they take the time to try to understand the fibro sufferer as a whole and vibrant being who needs some help to live painlessly like everyone else out there who doesn't have this disease? Why aren't all doctors scouring the net for sites like this one and reading everything they can to try to find a cure for this? Grrrr.

I hurt sooo bad tonight.... just had a big thunderstorm sneak in on me, and I was not at all prepared... oouch!

Some doctors just do not get it!!! when one of my doctors heard I had fibro, she no longer wanted to treat me and told me to go see a psych doc; and then added, " I don't mean for a month or two, you need to see one for a year or two."

Vic

i feel very fortunate. all my helpers in the medical field are very aware of fibro and take it into account when treating me for anything. they are willing to listen to me and accept that i know my body best.
not all doctors are insensitive to our journey. there are many to choose from. i shopped around till i found the right ones for me. i have 8 doctors and 2 physical therapists. i did alot of shopping to find them. i totally understand when they look at me with that sad, i don't know what to do look. it is hard to treat fibro since so little is known about how it manifests within our bodies and how it got there to begin with. i know they feel helpless.
remember this is your body and it is your responsibility to find the right care givers to assist you in your journey.
peace,
bluelakelady

This is how I feel about it:
They are concerned when we first start seeing them, they believe we are in pain and wish to find the reason so that they can eliminate it.:angel:
Then they run every test known to man and can't find a known cause that can stare them in the face (a positive this or a high count that) so they are clueless.:confused:
This is where the majority of them will start their personal theory into what is going on (none of course are based on fact but guesses in the dark). We are then subjected to a string of drugs that fit their particular shot in the dark.:(
Then when we start getting more symptoms and side effects that cause us to be worse off than when we started they mark us as a difficult patient and either don't want to see us anymore or they treat us as children. :(:(:(
Then when you get to where I am (after five years of this I refuse to take another pill for this, I will look for alternative treatments that don't cause more problems even if they don't help either) they call you uncooperative and place forms in your file that state you have decided to act against doctors advise. Give me a brake! :mad:

This is how I feel about it:
They are concerned when we first start seeing them, they believe we are in pain and wish to find the reason so that they can eliminate it.:angel:
Then they run every test known to man and can't find a known cause that can stare them in the face (a positive this or a high count that) so they are clueless.:confused:
This is where the majority of them will start their personal theory into what is going on (none of course are based on fact but guesses in the dark). We are then subjected to a string of drugs that fit their particular shot in the dark.:(
Then when we start getting more symptoms and side effects that cause us to be worse off than when we started they mark us as a difficult patient and either don't want to see us anymore or they treat us as children. :(:(:(
Then when you get to where I am (after five years of this I refuse to take another pill for this, I will look for alternative treatments that don't cause more problems even if they don't help either) they call you uncooperative and place forms in your file that state you have decided to act against doctors advise. Give me a brake! :mad:


I have wondered the same thing as your original post. I can totally relate to this post too ... "a positive this or a high count that" ... "clueless". My perception is they just don't much care - or don't want to take the time to listen or help unless they can just write you a prescription.

I am currently on a "time-out" from doctors. It's only been 2 years for me, but I'm completely frustrated - and I'm too scared to even think about what I'll be like in five years.

Donna your so right!

I agree with Blue you really have to become a medical consumer, you wouldn't go back to a mechanic that didn't fix your car right. I have shopped around and left many of those who really did not have a clue on what or how to treat me.
I have found a pretty decent team now and they are mostly women, I tend to get a little sexist at this point but I find the women docs to be more sensitive to my needs. I currently have quite a team going I am fortunate to live near a major medical university so they can all access my test results without having to retake or forward. I currently have a primary who specializes in fibro, a rheumy,a pain management specialist, pt, neurologist, and ent and sleep specialist. I have had less but more intense flares lately. I also was very relieved to find this board and realize I am not alone in this long strange trip... I am grateful for the pain free days . I do think that the docs would really benefit from reading this forum I have posted something to that affect before myself. A special shot of energy being sent to Blue for dealing with her Goodbye Girl. I wish you luck on your quest to find a good doc

It's been a journey for me as well....I had to kick several doctors to the curb before finding my current ones. So many are arrogant, uncaring, impatient, etc., and quick to point the finger at you as being responsible for contracting your own illness(es). I took it for a long time, but I finally got mad enough at the poor care I was receiving (and the decline my health was experiencing) and just kept looking until I found a good fit. It has made a difference, although I wish I could say I was "cured." It is quite evident that I am a long way off from achieving that, if ever, but at least we are working on it.

We must be our own best advocates. If we aren't, you can bet your bippy (for younger posters, look up the TV show "Laugh-In" on a search engine) that no one else will be. You have to be persistent and not waste your time or money on doctors who really don't care about helping you. Find one who listens when you talk, is willing to try different treatments and monitors your progress (or lack thereof). No one else will fight for you as much as you can yourself. See if there are online reviews on doctors in your area. Make up a list of questions for a doctor so you can make a fair evaluation of whether it's a good fit for you.

In the 17 years since I've started my battle with my health, I have encountered many more doctors who are either too busy to care, too arrogant, too ignorant, too careless....you name it. It really gets you to thinking you're either crazy or hopeless. But persistence pays off eventually...and you can find someone who can help give you some relief to your suffering.

Don't give up. Be informed. Be persistent. Be unwilling to deal with any health care professional who doesn't give you their full attention and concern. It is hard, but worth it in the long run.

Blessings to all,
TexMom

:D TexMom, you're giving away our ages! haha Yes, I am driven to get the care I want from the doctors... my current doc gives me everything I ask for, and any referal I request. He can't really do much besides help me maintain, but I thank the powers that be that I found him. I have a lead on a new doctor fairly close who I am very interested in getting to see. She has a fairly large following, all here in my weee little burg, so I'm really curious to go and check her out soon. I try to avoid having to drive far to see a doctor because it's so difficult for me to drive in a way I feel safe, therefore I don't get into the large cities like Fort Worth or Dallas... they are terrifying to me to drive in, and my hubby would take me, but we can't really afford for him to take a day off work just to drive me around. I am going to use that economic stimulus check we all are supposed to get to get myself some glasses. Maybe after I can actually see what I'm doing, driving won't be such a trouble. I can't wait to be called 4-eyes... snicker... cause I want to see!!:cool:


Oh yeah.... I started this post because I was curious about wether or not any "Doctors" were reading here to get a real idea what their patients are actually feeling and dealing with day to day... they could help us so much better if they did.

Ishla,

I was laughing at your comment about driving...I think there are maniacs loose on the freeways in DFW--speed limits are a joke. I don't like being out among them, either, especially at night. It helps contribute to my hermit-like existence. I go out for doctor's appointments, and an occasional pedicure (the massage feels so good!) or haircut. I am lucky to have a friend in my next-door neighbor, who is quite a bit younger than me but is caring and seems to empathize with me. Her children even call to check on me, which is just a blessing to me.

I agree that if many doctors took the time to read forums like this, they'd learn so much about how their patients suffer. I wonder if the doctors who do pure research (the ones who don't see patients) ever check us out. Of course, even if they do, they probably don't talk to the doctors who treat us. Typical: the right hand doesn't know what the left hand is doing. The medical community is so varied in its methods, knowledge, attitudes, etc., it's a crapshoot when you get treated.

As for my age....I am celebrating the anniversary of my 29th birthday every year....;) but suffice it to say I am a child of the 70's...

Blessings,
Tex

I had not even thought about those research doctors. Let's hope they are looking. I just hope there is a cure for Fibro in MY lifetime. I'm beginning to wonder if there will be at the rate it's seeming to be going.

Age 29 huh... I've always just said I'm 18, with 29 years of experience. :D

Age 29 huh... I've always just said I'm 18, with 29 years of experience. :D

Love it! I might have to use that one!:wave:

Tex

My dear fibro friends, I've been on both sides of this ''fence''. Now I
feel sometimes like I'm paying for my attitude when the medical professions
were so ignorant of this disease. In school I was taught that fibromyalgia was an emotional and/or mental problem. When patients complained
of pain in several places, a red flag went up.......oh how I wish I could go
back and re-write my assesments and comments on charts. I can close
my eyes and see many of those people who I ,(an others) thought, ''here's
another person seeking pain medication.''
Little by little that thought began to change as newer doctors became
aware that fibro was and is a legitimate disease. Seminars were held for nurses to help change their attitudes. It's been a slow change as some of
you have stated about test, mri, xrays and all those other things that usually
show nothing. Then started the round of medications....samples were given
by pharmaceuticals and doctors passed them on just hoping they might help.
That hasen't solved the problem either.
Seven years ago after an arthroscopy on my knee, fibro began and has never
let up. Some days are almost unbearable, other days the pain lessens some.
I take Norco 10mg twice daily and AmbienCR for sleep. I stay active even
when it hurts. I am still bothered by those many years ago and pray God
has forgiven me for my ignorance and lack of compassion for the those who
needed it most. I hope this dosen't make you dislike me because this board
has been a wonderful blessing to me. I love to read the post of new friends
and look forward to the older ones too....we're all in this fight together.
An old retired lady who learned a valuable lesson the hard way,
Bilij

My dear fibro friends, I've been on both sides of this ''fence''. Now I
feel sometimes like I'm paying for my attitude when the medical professions
were so ignorant of this disease. In school I was taught that fibromyalgia was an emotional and/or mental problem. When patients complained
of pain in several places, a red flag went up.......oh how I wish I could go
back and re-write my assesments and comments on charts. I can close
my eyes and see many of those people who I ,(an others) thought, ''here's
another person seeking pain medication.''
Little by little that thought began to change as newer doctors became
aware that fibro was and is a legitimate disease. Seminars were held for nurses to help change their attitudes. It's been a slow change as some of
you have stated about test, mri, xrays and all those other things that usually
show nothing. Then started the round of medications....samples were given
by pharmaceuticals and doctors passed them on just hoping they might help.
That hasen't solved the problem either.
Seven years ago after an arthroscopy on my knee, fibro began and has never
let up. Some days are almost unbearable, other days the pain lessens some.
I take Norco 10mg twice daily and AmbienCR for sleep. I stay active even
when it hurts. I am still bothered by those many years ago and pray God
has forgiven me for my ignorance and lack of compassion for those who
needed it most. I hope this dosen't make you dislike me because this board
has been a wonderful blessing to me. I love to read the post of new friends
and look forward to the older ones too....we're all in this fight together.
An old retired lady who learned a valuable lesson the hard way,
Bilij

I am new here and don't know how to start a new thread but I am very interested in what you have written. This is my question and if anyone cares to begin a thread with this question that would be wonderful....
Do any of you have trouble with dental anesthesia not sufficiently blocking pain during dental procedures? I had a tooth pulled nine days ago and although the sharp pain was not there I did have a "nerve" sensation throughout the procedure. Please comment if you have had this happen. The tooth was not infected (which would have explained the inability to keep me pain free).

Hi Shay's mom, at the top of the page there's a place to type in
specific problems like ''dental work and fibro''. This will pull up
all the post connected to dental problems. This space is on the left
upper area. I hope this helps.
Bilij

Bilij my friend there is nothing to forgive. We all have learned so much over the years about compassion and understanding and not judging others because we don't walk in their shoes. The wonderful thing about you is that you were open to learning and understanding new information.

Oh if I could only go back to my younger days and take that young lady and make her see how things really are and not to be so judgemental. The best lesson I learned was when I had children. I use to say all the time, my children will never do that or my children will never wear that or be like that or whatever. Then I had children, 2 of them 17mo.s apart and BOY did I learn quickly. I had to eat a lot of words.....maybe that's where I gained all this weight.....how many calories are in that word never!?!

Glojer