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Sunday, November, 22, 2009
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My neurologist says Fibromyalgia is not real

arlene
arlene
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 Im a Homemaker, with a 2 year old, 13 year old, a 3 year old...

09/17/08
arlene
Topics:FibromyalgiaDoctors

So after a 3 month wait, finally I had my appointment w/ the neurologist and he says "what is Fibromyalgia?" He says 'fibro' meaning fiberous tissue and 'myalgia' meaning muscle. So then he says I could get it here, in the arm and could call it Fibromyalgia. I almost knocked him into tomarrow. He says nobody knows anything about this and was so negative.

 

So now after my last hope has disregarded me and my pain- WHAT DO I DO NOW????

Doctors have given up on me, and now the last hope I had.

 

I'm in the middle of potty training my 2 year old daughter and by the time I make it to the bathroom, it's to late. So I will have to give up, just like these so called Doctors/speacialist/medical profession.

 

The only thing that has helped is upper cervical and i can no longer do the drive of 1hour and 1/2. Pain meds can help for up to 2 hours. Then start all over.

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Answers (60)
Scooter
Scooter
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Scooter is in lots of pain

I've had chronic pain since 1999. I've had five low back surgeries...

Wednesday, September 17, 2008

I don't know what kind of neurologist you went to. I mean it is really sad that he doesn't even know medical terminology.He got part of it right. Fibro does mean fibrous tissue. My means muscle. Algia means pain. So fibromyalgia means pain in the fibrous tissues and muscle. He must have graduated at the bottom of his class. Don't give up. There really are good caring doctors out there. Have you tried a pain management doctor? Usually you have to be referred. Do you have a regular doctor that can refer you? Don't give up. Nobody deserves to hurt.

Cort
Cort
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Runs the Phoenix RIsing website (phoenix-cfs.org) on CFS/FM and p

I have had CFS/FM for over twenty years. I have a BA in philosophy...

Wednesday, September 17, 2008

Are you with a health management plan? If so if you have the energy and werewithal you should find a way to complain. (This is really unacceptable behavior; complaining may have your health management plan send you to someone who does know about FM). Besides knowing that fibromyalgia means fiberous muscle tissue pain your neurologist also surely knows many other illnesses which were named incorrectly before technology determined their cause.  What a cheap way to put a patient down. 

 

While many physicians are ignorant about FM more and more know are learning about it. You might try the National Fibromyalgia Association for a list of knowledgeable doctors or FM support groups in your area that could guide you in your search. You may or may not have FM but you'll never find out by going to someone who doesn't believe it exists. 

 

http://www.fmaware.org/site/PageServer

 

Keep going - take some relief from the fact that you're not alone. This has happened many times to people all over the country. 

 

Good luck. 

Morgan
Morgan
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Morgan is finally "living". My RND is in remission!
I have RND (reflex neurovascular dystrophy)

My journey through pain began in September of 2007. I went for...

Friday, September 19, 2008

 I'm so, so sorry. Your situation seems horrible. I have had my fair share of rude doctors too. Don't give up. Keep on moving forward. Good luck!

                                      Wishes of good health,

                                             Morgan

Karen Lee Richards
Karen Lee Richards
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Co-Founder of the National Fibromyalgia Assn.

Karen Lee Richards’ career as a writer and patient advocate grew...

Sunday, September 21, 2008

I'm so sorry to hear you had to go through that.  Unfortunately there are still some ignorant (and rude) doctors out there who have not kept up with new research on fibromyalgia.  The good news is there are a lot fewer of them than there were 10 years ago.  The FDA approval of two medications to treat FM has given it a new-found legitimacy in the minds of many health care professionals. 

 

Have you seen a rheumatologist yet?  Although research in the past few years has shown that FM is a neurological problem, it has been historically treated by rheumatologists and many will still treat FM patients.  The field of neurology has been slow to accept us, so much effort has been aimed at educating family physicians to treat fibromyalgia.

 

If you can find a doctor who cares but just doesn't know much about FM, there is a new resource that can help them.  The National Fibromyalgia Association has developed a new Web site specifically for healthcare professionals. It's a new site and they have plans to expand it, but there's already a significant amount of good information there.  You can find it at: www.fibromyalgiaHCP.org 

 

I know how frustrating and exhausting it can be trying to find a doctor who will listen and understand, but please don't give up.  There are good caring doctors out there and you deserve one, so keep trying.

minnow
minnow
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I am married, have 1 child and a grandchild. I have been in pain for...

Wednesday, September 24, 2008

Have you tried a Pain Management Doctor Yet? If you haven't, try one. The Doctor you went to isn't much of a Doctor if he/she said that to you. There are a lot of Doctors out there that do not know about Fibro nor do they want to. You need to find a Doc that will understand you. There are lots of sites online that will direct you to a Fibromyalgia Doctor and Pain Management Doctors. Just do a Web Search. You do not have to take that from any doctor. I went through so many its unreal. I finally got the best you can get. Also when you do see a doctor make sure you get checked for Rheumatoid Arthritis as they go hand in hand. Good Luck.

SHEILA
Thursday, September 25, 2008

ARLENE : I AM SORRY YOU HAVE HAD THIS EXPERIENCE, I HAVE BEEN IN YOUR POSITION. SOMETIMES YOU HAVE TO BECOME DEMANDING WHEN YOUR THE TYPE OF PERSON WHO DOSN'T LIKE MAKING WAVES AND PHYSICALLY YOU JUST DON'T HAVE IT IN YOU TO FIGHT. IT HAS TAKEN ME YEARS BUT I HAVE FINALLY FOUND AN EXCELLENT PAIN SPECIALIST. I DON'T KNOW IF I COULD HAVE TAKEN MUCH MORE. MY THOUGHTS AND PRAYERS ARE WITH YOU. PLEASE HANG IN THERE.EmbarassedSHEILA

blastmom
Thursday, September 25, 2008

I see a rheumatologist for my fibro.  Maybe you should try a different kind of specialist. Don't give up.  Just keep trying until someone helps you.

Angela
Thursday, September 25, 2008

Find a new neurologist ASAP!!!  I understand what you are living with.  I have had to "audition" many Dr.s that fail miserably.  Keep trying you will eventually find one that understands and believes.

Susan
Susan
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Susan is Not too bad today!

Thursday, September 25, 2008

Well hon, your story is all too frequent.  You mention 'he' and that is a give away to me.  Because men are a small group of fibro patients, male doctors tend to not want to understand the real dis-ease of fibromyalgia.  I have had the best luck with women doctors.  That being said, you really just need to get recommendations from others in your area who also have fibro, or call the arthritis assc. and get the name of a specialist from them.  A neurologist isn't the type of doctor you need, you need a rheumetologist.  Ask you primary care doc for a referral if you need one.  And tell your neurologist from me:

myalgia

  (mī-ăl'jē-ə, -jə) pronunciation


Muscular pain or tenderness, especially when diffuse and nonspecific.

myalgic my·al'gic (-jĭk) adj.

nkeehner
nkeehner
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nkeehner is Nina

I am a 46 yr. young women that lives with a cat named Moo. I have...

Thursday, September 25, 2008

Yes, it is real for many especially women in childbearing age. I have RA with it, so it's a double treat, being very sarcassticly put. You need to seek other MD's advice and get the real scoop or even go to to a medical library alot of cities have them in thier clinics.

 

Obviously, you where sent to a barbaric, narrcisstic Dr. who has NO clue on the subject. Your OB/gyn could be a good source too. Good luck to you and i would have felt the same as you with that neurologist.  NinaSmile

Brenda
Thursday, September 25, 2008

After knocking him into tomorrow, you should have asked him, if there is no such thing as Fibro why then are over 2 million people in the US diagnoised with it and 98% are women?  Trust me when I say that those of us who are suffering 24/7 is definitely not what we would choose to stop our active life with work, family, friends and attending church services because we are in too much severe pain to barely have the strength to brush our teeth.......Of course it would be a man that would say such a thing!  This illness that ruins our life....I hope you feel better.  We have to stick together.

 

God Bless,

 

Brenda

missy
Thursday, September 25, 2008

i suffer from fybromagia, besides other chronic conditions and it is a real thing , some of these drs dont understand what real pain is . becouse they dont have it, as for this dr i would go to a different one that understands good luck

revvin
Thursday, September 25, 2008

Go see a rheumatologist. The first one I went to, said there was nothing that could be done for fibro. That he could prescribe me something for the pain, but...At the time, I worked around machinery, so I declined any of it. He had the same attitude as your neurologist. Then, I heard of a rheumatoligist that has fibro, and he even lectures on it, being a 'real' affliction.

sqgoodwin
sqgoodwin
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I am a mother of 2 and Grandmother of 3. I've had Fibromyalgia and...

Thursday, September 25, 2008

For many of us it's an all too common occurrance.  You just have to find the right doctor.  Then, you will have to work with the doctor on finding the right combination of things to treat your Fibro.  There's a lot of trial and error before you find something that works.

Concetta
Concetta
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I am Maltesse Canadian and I have run a Fibromyalgia Group

I am Maltese Canadian. and I live with Fibromyalgia. I also run a...

Thursday, September 25, 2008

     Tell your Neurologist to go back to school. It has come to my attention that you non beleivers get with the program.

Fibromyalgia has been around for decaides maybe even hundreds of years. and the known last name prior to what it was known for was Fibrosities. if he/her needs help with this tell them to get on the internet and get reading. it's every where on the internet.

     Sorry to hear that he/her said that to you. Pay no attention to him/her. We know what we have and you must remember know that you went through this. When seeing your dr's never mention you have it until your confident you can because they also blame every thing that gose wrong with you on Fibromyalgia too.

I'm giving you the heads up on how these guys operate.

PAMELA SIRVENT
PAMELA SIRVENT
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I AM LIVING WITH CRONIC PAIN. I HAVE A DEGENERITIVE SPINE, THREE

I HAVE ALOT OF PAIN ALL THE TIME. I HAVE BEEN ON ALL SORTS OF MEDS,...

Thursday, September 25, 2008

I WOULD TELL HIM TO READ THIS SITE, THEN FINA ANOTHER DOCTOR. HE WILL NEVER TREAT YOUR ILLNESS RIGHT SINCE HE ALREADY THINKS IT DOES NOT EXIST!

melgus
melgus
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melgus is Melanie
Have CRPS/RSD since Oct 03. Central Sensitization now fully body.

With my CRPS I have been there tried that, including prescribed drugs...

Thursday, September 25, 2008

Hi there,

 

I feel your frustration. Firstly it sounds like this Neurologist is behind the times and needs to go back to school!!

 

Ignorance is not bliss!! Don't beat yourself up or waste your energy getting angry with these types of doctors because it is just not worth the stress and the added pain!!

 

I suffer the same type of thing with my CRPS/RSD. Luckily I have a very good specialist and an understanding GP.

 

You need a new specialist!! Unfortunately.

 

take care

 

Mel x

Pat
Thursday, September 25, 2008

arlene.....

 

Go find yrself another Dr. I was dx w/fibro in 2000 and I can tell you it is very real.

I went to a chiropractor and he is the one who thought I had it...so he told me to find a rheumtologist and he dxed me with 14 points out of 18.

Sorry but yr doc needs to be educated...Good Luck!!!

Heidi
Thursday, September 25, 2008

What a waste of time! It's time for you to find a new doctor! I have had the best success with a Pain Medicine Specialist and Rehabilitation doctor. I felt my Rheum. doctor just didn't know enough about FM to treat me properly.

heidelue
heidelue
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heidelue is heidelue@yahoo.com
bulging discs c3,c4,c5

47 yr old widow. work full time have had the some job for 22 years....

Thursday, September 25, 2008

time to see a new neurologist.

LINDA
Thursday, September 25, 2008

YOU NEED A NEW DOCTOR.  I HAD A SHRINK TELL ME ONCE THAT MY FIBROMYALGIA WAS ALL IN MY INTERNAL MEDICINE DR'S MIND.  I WAS FURIOUS.  BUT, I GOT OVER IT, NEVER SAW HIM AGAIN AND MY DR. AND I HAD A GOOD LAUGH OVER HIS (THE SHRINK'S) IGNORANCE.   IT TOOK ME QUITE A FEW YEARS TO FIND A GOOD DOCTOR TO TREAT MY FIBRO.  KEEP LOOKING, DON'T STRESS OVER WHAT YOUR NEURO. SAID AND GOOD LUCK AND GOD BLESS.

1grnthmb
Thursday, September 25, 2008

I would say that it is time for a new Doctor. The first Rheumatoligist I saw said he thought I had FM but I was so sensitive that he could not confer the pressure points. He retired and I started seeing a new Rheumatoligist he said the FM did not exist. He also could not get my arthritis straight. The first doctor had diagnosed me with both ankylosing spondylitis and rheumatoid arthritis. The new doctor, when I told hime what the first doctor had told me said I did not have RA. Then the next time I saw him he said I had it then the third time I saw hime he said I did not have it. Between the denial that FM exists and the confusion as to whether or not I have RA I stopped going to him and am seeking a new doctor.

1grnthmb
Thursday, September 25, 2008

Also I have found that most Neurologist are in denial that FM exists at all. I have had two tell ne that it is not a disease and a third tell me that it is just a symptom of another disease. You heed to see a Rheumatoligist who knows about FM to understand and diagnose you.

angelaamy
angelaamy
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cat lady, still don't know what I want to be when I grow up

had fibro all my life,finally diagnosed at 48yo, now arthritis bad...

Thursday, September 25, 2008

find a different doctor!!! I was first examined for unexplained pain at the ripe old age of 2 1/2, fibromyalgia finally dignosed at age 48, by a rhuemetologist. funny how puberty turned "we can't find anything must have pulled a muscle playing" into " she's just trying to get attention" into " all in her head, this woman is a hypochondriac". I would start with the closest arthritis foundation office to you to find a dr who treats fibro, they may have printed info and documentation you can take to that idiot dr if you must stay with him he needs educating about fibro obviously.

Dorie
Thursday, September 25, 2008

BULL! TELL THAT TO THOSE WHO SUFFER FROM IT!

Debi
Thursday, September 25, 2008

Hey, sweetie - Don't give up.  Get yourself a second opinion.  Seek out a doctor that understands and specializes in Fibromyalgia.  Start with your PCP.  He/She should be able to direct you to a doctor that can help you.  You can also contact the American Arthitis Foundation.  They recognize that Fibromyalgia is not "all in your head".  More and more doctors are realizing that Fibrmyalgia is a real disorder. 

Rosella
Rosella
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Rosella is ROSELLA

Have several health conditions besides these three. (Had breast...

Thursday, September 25, 2008

THEY CAN CALL IT BY ANY OTHER NAME AND IT WOULD STILL BE SEVERE PAIN IN THE MUSCLES, FIBROUS TISSUE. MY RHEUMATOLOGIST TOLD ME THAT IT IS ANOTHER FORM OF ARTHRITIS, AS THERE ARE OVER 100 FORMS, AND IT IS CRIPPLING. GET YOURSELF A RHEUMATOLOGIST. THEY "KNOW THE SCORE" AND CAN TREAT YOU MUCH, MUCH BETTER.

Myra Richardson
Thursday, September 25, 2008

It is very real if it were not why do they have clinics especially for Fibro and how to deal with it and Chronic Fatigue?  It is painful when the wheather changes and other triggers.  I think that the Doctors that say it doesn't exist should go back to school.

Myra 

Soreallover
Thursday, September 25, 2008

I would say knocking him into tomorrow is only a temporary solution (even though I agree with you completely).  First I pray that he comes down with fibro himself and have another neurologist tell him he's crazy.  Next, Post in as many web sites as possible the name of this neurologist and what a lousy doctor he is and paying him money to insult you is a huge insult and a waste on money.  Finally, I would focus only on people who are supportive of your pain and find doctors who believe in you.  Since fibromyalgia was given a name since only in 1990, find doctors who are younger than 50 years old.  The older doctors, you would think have more experience, but if they have not kept up with continuing education, those older doctors are dinosaurs and are left in the old school mind set.  I hope you will feel better soon.  I've had it for ten years and have finally got it under control in the past 4 years.  For the prior six years, I had so much pain I wanted to die.  The only thing  that kept me living was my two very young kids, 4 + 5 yrs when I was first diagnosed.  I have to admit, I still have some very bad days and on those days I wish for death to arrive soon.  My kids are older now and can take care of themselve.  I would die without feeling they couldn't take care of themselves.  Good luck and dump that ignorant neurologist.

Ky_Pam1960
Ky_Pam1960
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Ky_Pam1960 is Savella

I`m 48 and I`ve had fibro since 1996 but I think I`ve had it all my...

Thursday, September 25, 2008

He`s nuts!!! Find a new doctor hun i`ve been to a 100 over 14 years.It`s real if only he could get this he would eat his words.Hugsss keep researching and tell the ones that don`t believe you to kiss it lol.Try to laugh it helps.Ever need someone to talk to let me know.BTW just came from my family doc he told me i`d never feel good again cause fo fibro.

                                                   Pam

Linda
Thursday, September 25, 2008

Find another doctor. I saw 2 doctors who said it was all in my head. I then went to a rheumatologist who told me about Fibromyalgia. They are out there (doctors who believe in fibromyalgia.) It is all too real. Do a search online for fibromyalgia and you'll be happily surprised at how many sites you'll find.  There are plenty of doctors and other medical personel who understand the baffling pain and fatigue we go through. Your neurologist is stuck in the stone age.  My aunt is a physical therapist who recently had to take a class on Fibromyalgia.  We who have FM have nervous systems that are stuck in overdrive. My doctor told me it may be a chemical imbalance.  We have too many neuro transmitters. These little buggers transmit signals to the brain. What should feel like pressure is felt as pain. It's exhausting being in pain all the time. But, there are things we can do to take better care of ourselves. There are treatments that work to help us manage pain. Please don't give up.  Check with your local hospital for a referral to someone who will believe you.  Fibromyalgia is very, very real.  Good luck,  Linda 

peapod76
Thursday, September 25, 2008

find a new neurologist!

 

Tongue out

 

-k-

janet
janet
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janet is depressed & unemployed
looking for work,been depressed, cry a lot,

i have back pain.i have a deteriorating disc,pinched nerves in each...

Thursday, September 25, 2008

it's time to fire the dr. he's not the only dr. in town! drs. are everywhere just like lawyers! Surprised the dr. works for you & should be HELPING you. please remember that! Wink

Anniemetalgirl
Anniemetalgirl
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Christian, married, love dogs.  I love to get to know others...

Thursday, September 25, 2008

I am so sorry you neurologist is so stupid.  See a rheumatologist.  They diagnose and treat fibromyalgia. 

 

Hugs,

annie

RUTH
Thursday, September 25, 2008

YES, FIBROMYALGIA IS REAL!!!  TO CORRECT ONE OF THE RESPONDERS THOUGH TO YOUR QUESTION....FIBROMYALGIA IS NOT A DISEASE....IT IS A SYNDROME!!  THERE ARE NO TESTS SUCH AS BLOOD, URINE, ECT. THAT CAN DIAG. FIBRO.  IT CAN ONLY BE DIAG. BY SYMPTOMS AND THE PRESSURE POINTS.  I HAVE BEEN "BLESSED" WITH FIBRO FOR 20 YRS. AND IT WAS MY MEDICAL DR. WHO FINALLY DIAG. ME AS SUCH.  HIS WIFE HAS LUPUS SO HE WAS SYMPATHIC TO MY COMPLAINTS. I DID GO SEE A RHEUMOLOGIST WHO IS THE ONE WHO HAS BEEN TREATING ME OVER THESE PAST YRS. I HAD A PAIN DR. TELL ME THAT EVERYONE HAS PAIN AND THAT I DID NOT HAVE FIBRO...FUNNY!! I DID NOT HAVE THIS PAIN BEFORE!!!  I DID NOT SEE A NEUROLOGIST AS I WAS 10MINS LATE FOR THE INITIAL APPT. AFTER TRAVELING 25 MILES TO SEE HIM ACROSS OUR LARGE METRO CITY AND THE MIRACLE WAS THAT HE WAS ON TIME!!!  FIRST FOR A DR. I MUST SAY!!!  SO, MY LUCK HAS BEEN WITH A RHEUMTOLOGIST AS THIS IS AN AUTO IMMUNE DISORDER LIKE ARTHRITIS, LUPUS, ECT. BE PERSISTANT IN YOUR QUEST FOR TREATMENT!!!  I AM AN EX NURSE WHO LOVED MY CHOOSEN CAREER BUT I WAS GETTING FORGETFUL, FATIGUED, GRUMPY, AND HURT SO BAD TO WALK MOSTLY. AT TIMES I WOULD BE WALKING DOWN THE HALL AND IT FELT LIKE MY SHIN WAS FOLDING IN HALF!! THAT IS IMPOSSIBLE UNLESS IT WAS BROKEN!!!  BEST OF LUCK TO YOU!!!

kayD
kayD
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kayD is just a simple lady
I live with pain from Fm and back trouble

I enjoy sewing, crochet, reading, games, nature, fishin, fanily and...

Friday, September 26, 2008

If you continue with this doctor take in documents proof from the web from other doctors.........but the best bet would be to search for a doctor that understands and accepts FibroM as an ilness.

My neurogist accepts it.........but really didn't have anything to offer in the way of help but tested me for a sleep study and put me on a Cpap machine.

KayD

mikeyd
Friday, September 26, 2008

Arlene,
I am sorry that you had to endure that from anybody, especially a doctor.  While I don't have fibro, I suffer from chronic pain caused my nerve damage.  I have been in so much pain that I went to the emergency room.  The ER docs just looked at me like I was trying to con them into a prescription. 
I would tell your primary care doctor about the experience, and ask for a referral.  I've found that a referral helps get an appointment much more quickly. 

AmericanLadybug
AmericanLadybug
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I have Fibromyalgia, Chronic Fatigue Syndrome and MDD

I was misdiagnosed with Osteo-Arthritis for about ten years. I was...

Friday, September 26, 2008

Find a new doctor. This doctor is living in the dark ages.

Chris
Friday, September 26, 2008

Arlene:

You need to find a different doctor!  Fibromyalgia IS real and there are ways to help make you feel better, both with and without prescriptions needed from a doctor.

 

I was first diagnosed with Fibromyalgia over 20 years ago when it was VERY rarely know by any doctors.  I kept at it, and have been seeing a Pain Management doctor for that, and for my RSD (started with foot surgery in 1999) for treatment for years and was finally approved for Social Security Disability this month after trying for over 2 years.

 

The stress from the pain, both physically and emotionally is unbelievable, and when the doctor doesn't believe it if real you need to go elsewhere FAST.  Don't waste any more time with that specialist.

 

Good luck.

Chris

ski312000
Friday, September 26, 2008

Most doctor's do not believe in fibro pain. I have it and went through much of what you are running into. The best thing to do is to dump the jerk and see a rheumatologist or seek out a specialist in fibromyalgia and chronic pain. They are out there, you just need to do some research.

Sande
Friday, September 26, 2008

Find another doctor.   I go to a rhymetologist "didn't say I could spell".

My doctor is very understanding and my insurance company has been

great.  I am taking Lyrica, and it really makes a difference.  I also have

arthritis so I have pain from that.  Hope you find a doctor who is up on

Fibro.

deanna
deanna
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I am a single mom of 3 that suffers from chronic back and leg pain,...

Saturday, September 27, 2008

I wouldn't go back to this doctor again. Trust me, I live with the symptoms of fibromyalgia everyday and it is a struggle as a single mother with 3 children. The doctors I see are very aware of this condition and I am treated for it. You need to research and find a doctor who does believe your symptoms and is aware of the fact that there are people out here in this world that do have to live with this unbearable "disease" (if that's the right word to use) I would not be able to perform my daily duties if it wasnt for a doctor who was as educated and knew how to treat this. Good Luck!

Shauna
Shauna
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I would love to talk to someone who is dealing with Fibromyalgia and...

Saturday, September 27, 2008

You see, technically that is not correct.  #1- fibro means- fibrous tissue.  #2 my means- muscle.  #3 algia means- pain or painful.

So really he didn't give you the entire meaning.  If he doesn't believe in it, it usally means that he can't explain it.  But, just because he can't explain it, doesn't mean it

doesn't exist.

In the very beginning before I was diagnosed, I went to a neurologist who told me that it was all in my head.  He proceded to tell me that I was on to much pain medication and that he was going to see me in 2 weeks and if I had not got off the pain meds. that he was going to hospitalize me for detoxification.  I told him that my doctor had prosribed it and I was only taking it when I needed it, when there was no other alternative.  He reiterated, that in 2 weeks, I had better be off of it.  Needless to say, I didn't go back to him.

The point being that you , above all know when you're in pain.  And , unfortunated, there are still only a handful of M.D.'s that know that fibromyalgia is real. So, my advice would be to find a M.D. that does.  There are lots of directories of M.D.'s and even specialists.  Just find a crediable site on-line.  Maybe even through this site.

 

yours with HOPE,

Shauna

 

jerry hesch
jerry hesch
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I am on the other side of severe chronic pain in that I have...

Sunday, September 28, 2008

tell him he is not real, he is just an effigy of his world view. I will spare you the story of my neurologist-let's just say he got it-that i was profoundly disappointed in his ignorance, prejudice, etc.

jerry hesch

momearth
Sunday, September 28, 2008

I have suffered from fibromyalgia since I was I teenager and they had no idea what was wrong, but I never gave up I went from doctor to doctor till I found one willing to listen to me and not think I was "just depressed".  I educated myself on everything I could about the  disorder and that gave me the strength to keep looking for treatment I have found that acupuncture helps a lot as well as yoga(small movements), the pool is also and excellent way to strengthen your muscles without the effect of gravity which as you know is a fibromyalgia patient worst enemy. So stick to it ,don't give up and look for alternative treatments that will heal you body as well as your soul. keep the faith one last thing My neurologist finally put me on the new drug LYRICA . It is now approved by the FDA for treatment of this disorder. So take find someone knowledgeable to keep up with the medical journals ,the are always finding a new way to treat this disorder.

wolfpup160
Sunday, September 28, 2008

Hi my name is Kathy and Fibromyalgia is very real. I've had it since I was a teenager but just got diagnosed with it in 2002. All the Dr's I saw told me all the pain was in my head because they couldn't find anything physically wrong with me. Well, I finally got sent to a Rheumatologist who did a small test on me. There are 18 pts on your body they check for tenderness. If you have at least 11/18 tender spots then you have Fibro. Go see a Rheumatologist, they can help you. Hope this helps.

Marlene Sylvester
Marlene Sylvester
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Well, for right now I am not doing too much. I had been caring for...

Monday, September 29, 2008

Go looking for another one.

 

msylvester

Pat Reinsfelder
Monday, September 29, 2008

Get yourself a new neurologist!

Rachel Jones
Wednesday, October 01, 2008

I've had firbromyalgia for over 20 years.  I go to a rheumatologist who does not doubt my pain.  There is now a drug for this condition unforunately I cannot take it; I get thru the day with Advil and when it is really bad ultracet.  You have to keep moving.  This is not in your head and I truely believe if you go to a rheumatologist he may be able to help you.  The drug they are using now is Lyrica.  I hope all goes well for you.  Rachel Jones in Boynton Beach, Florida

Elizabeth M Tiffin
Sunday, October 05, 2008

A full mouth of non-sense.

shoniamay1126
Wednesday, October 08, 2008

You do need a new doctor, one that will know that you are in pain, After having my son 5 years ago i started having alot of pain, miagranes and all the gastro problems that it comes with, the fatigue and just about anything that could possibly cause you problems, i got it, anyway, after not being able to get several doctors to look at the list of problems with me i was sent to a specialist, i have seen her for a couple years now, yep "her" anyway, she has put me on cymbalta and lyrica and ambien cr for sleeping, we have tried alot of drugs and medication and after constant weight gain from the lyrica i decided to go off of it, also it makes me randomly fall asleep, it didn't make the fatigue any better.we are going to try some other things but i need to also find medicine for pain. but best of luck to you and i will update what my doctor gives me and tell you if it is working.

Valorietx
Saturday, October 11, 2008

RUN....and don't look back!  This ignorant doctor will not change his opinion and in the meantime you suffer with an illness that is very real.  So don't waste anymore of your time with this person and look for another doctor in your area that does understand fibromyalgia.  If there is a local support group in your area for fibromyalgia/chronic fatigue syndrome or even chronic pain, talk to some of the members about their experience with doctors.  Even you don't have any local support groups go to the different online support groups and post a message in the forums that you are seeking a doctor in your area that understands and treats patients with fibromyalgia, etc. and you will get replies.  Word of mouth is absolutely the best...you can be sure that you will get an honest opinion of services rendered. 

Good luck in your search...I have been blessed with a wonderful doctor that fully understands fibromyalgia from both a personal and professional view because is wife was also a victim.  He worked tirelessly to find ways to make her life more comfortable before losing her.  Now all the knowledge he gained during that time is used to make his patients lives more comfortable and therefore more productive.  I don't know what I would do without him.  I hope and pray that everyone suffering with fibromyalgia or any type of chronic pain finds a doctor that will work with them patiently until they find what works so that they can live a life worth living again.

Valorie

Don't give up right before the miracle happens...

FibroMom
Friday, October 17, 2008

I would love to see these doctors spend ONE week dealing with fibro!  Sounds like your neurologist needs to talk to a psychiatrist!!    Myalgia means " muscle pain"  I am in medical school.

It really burns me up when these so-called "Professionals" think they know what they're talking about!  Do yourself a good favor and see a pain management specialist

barbie59
Saturday, October 18, 2008

I have been a fibro patient since i was in my early twenties, After going to several doctors and being told it was in my head, but i was testing a false possitive for lupus. none of the horrible doctors ever followed through, until finally in my mid thirties i found a doctor who listened to me after running the same, plus blood work they all did he was the only one who found my inflamaton level was so astronomically high, at this time he sent me to a Ruhmatologist and he diagnosed me and belived me and perscribed a pain medication that worked for a little while.Today i have been strickened with many health problems not all related to fibro. I am 50 yrs old now and i have always suffered the worst on a scale of 1 to 10, i have passed out, fall asleep random and wake up feeling as though i was ran over by a tractor trailer!!Having fibro you have trigger points as well, and the pain can be so over whelming There are times i CANNOT walk. The other fibro symptoms are lower back pain and your lower extremities swell up (fluid retention) legs and feet.For years it was considered a so called syndrome, however it is now a real disease.Yes you can qualify for diffrent disabilities that are permanant. It all depends on how badly it affects your job!!For years they claimed that fibromyalgia does not run in families well we have proven that to be very very wrong, i have a 62yr old sister diagnosed in her late 40's and a 55 yr old brother diagnosed at age mid 40's, and a son who is 27 diagnosed at age 24, and God rest my Mother my best friend had it diagnosed in her late 70's. To anyone out there that reads this please just remember you will have good days and bad days with flare ups as there called, and no matter what PILL or MEDS they put you on you will ALWAYS have some pain you need to learn to live and deal with.There is no such thing called completly pain free!! Unless you abuse your medications then you only depriving yourself from the BULK of the pain that the meds work on.My doctor is the founder of the fibromyalgia network across the United States if your doctor is not helping you keep looking as i did and look i am able to sit here and type this without severe pain and i now have a few more good days!! oh and just a closing thought DEPRESSION is a big part of this disease in the beginning, however as the time goes by and you will except this you will see the depression getting better and better, turn it in to play the hand you were dealt you may lose in the start but only you can win that hand Keep a possitive attitude and a smile on your face as its def not the end of the world.alot of prayer for you all who suffer this mean disease, feel free to contact me.

TactileVisions
Friday, November 21, 2008

I am so sorry that this happened to you.  I have been treated this way, and it would be difficult enough to be emotionally bullied, but add that to pain and desperate need for help so that you can function and raise children - It's cruel. Dr's who abuse patients in this way, any emotional abuse by Doctor's should be a punishable criminal offense. Not being held accountable and having an ego out of control is a dangerous combination in those who are offenders. These doctor's don't know if pain and the depression and desperation that may accompany it, has pushed a patient to the point of barely hanging on. As an "authority" figure, when someone is in such a fragile state, their harshness can be a trigger for reactions that in addition to being agonizing, may be dangerous or even fatal.

I hope you will find a Dr who will give you proper treatment.

 

Maria Rosa Julia
Wednesday, December 31, 2008

Definitely, change your doctor for a doctor who knows about fibromyalgia.

 

Many doctors still think this is not a disease.

 

 

Maria

mazinoz
Sunday, March 08, 2009

I am writing from Australia.  Because of governmental policies it can be hard to get a referral to a specialist and get past the general practictioner gatekeepers, here, even getting an x-ray can be a problem for me, "nothing is broken, but if your still in pain you can get an x-ray. X-ray result - fracture (this has happened to me three times now - us hypermobile types not surprisingly bend, bounce and break a bit differently to the rest of the population!).  You can see a specialist if you are lucky but you have to pay all their fees if you don't have a referral. Sucks if you have FMS or Hypermobility syndrome, which is what I have.  Even to see a specialist in a public hospital - again you need a referral.  Some won't even see you if you are prepared to pay!

 

However. I have found that some GP's here may have a special interest in muskuloskeletal problems and may mention it in patient brochures, or ask the receptionist or even look on the internet, and all of these I have seen in Brisbane Qld have had - you guessed it, FMS!

 

Coincidentally when a Rheumatology registrar diagnosed Hypermobility syndrome and I later saw the Professor of Rheumatology at Royal Prince Alfred Hospital, Dr John Yorke for a while, he revealed that he himself was hypermobile. Who better to see than someone wrestling with the problem themselves.

 

Seems you just need to know where to look sometimes.

 

Hope this gives you some helpful ideas.

 

tv
Monday, March 30, 2009

Who is your neuro?

catherine findlay
Monday, April 27, 2009

its not aneurologist you need to see it's a ruemotologist thats who diagnosed me with chronic fibromyalgia syndrome i know loads about it now so you need to ask your doctor to refer you to a ruemotologist you also get anxiety with this illness 8 points of pain out of 13 for them to diagnose it i scored13 you are entitled to highest rate disability as it is now recognised as it should be as a real illness you also get ibs and i have an underactive thyroid to it all goes hand in hand plus i have other illness to because of this dont believe people when they say ther is a cure coz thers not it can just go away on its own if you want more info email me at catherinefindlay1@yahoo.co.uk hope this has helped i know how much your suffering

BRKyle
BRKyle
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BRKyle is managing
Homemaker and mom of great 14 year old twins

I have fibromyalgia, a chronic back injury with sciatica (now on BOTH...

Thursday, June 18, 2009

Okay.  So, he's a jerk.  Find a RHEUMATOLOGIST if you can, and see whether he/she is better able to treat you both as a human being and treat your symptoms.  I refused the diagnosis of fibromyalgia for  years because I couldn't find enough evidence myself for its existence, let alone any treatments that were reliable, but this guy has obviously taken bedside manner lessons from Attilla the Hun.  Fire him, NOW, and find someone who can actually READ.

 

All the best to you and your family.  This my make you get up on your high horse and DO something, which is a heck of a lot better than doing nothing.  Prayers for you.

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