Cort, Health Guide

9/17/08 7:52pm

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.

PhoenixWmn

11/28/09 11:57pm

I'm not really a message board poster, but was researching potential help for my own FM and happened across this board.

Don't want to burst your bubble Doc, but it sure seems there are many more negative nay-sayer Dr's out there as regards FM than there are pro-active, accepting and caring Dr's re: FM.

I am a disability retired RN with 25 + yrs in Critical Care; I don't take narcotics although my former Doc ( he retired a yr ago, sadly) did work with me closely to try & find something I could tolerate; unfortunately I just can't seem to take any opiates, not that I'm looking to. I have multiple herniated disks + FM + bilateral trochanteric bursitis + moderate arthritis. There are days I think it's an accomplishment to just get up.

Despite that, I'm not a whiner, I don't call my new Doc w/every ache and pain; in fact I rarely call her at all. My former Doc gave me parenterally-administered hydroxyzine ( IM) to give myself when it's really bad. I resort to that maybe two times a year, but it does help , relaxes skeletal muscle and at least I sleep. I also make heavy use of my TENS unit, which is a God-send. I walk when I'm not acute and take a ton of supplements to help. I'm not sitting around feeling sorry for myself, but FM does lay me up alot more often than I care to admit; sometimes it seems FM makes my decisions for me when it comes to activities, socializing etc. I've lied so much to family/friends ( ex: Sorry I can't come, the car is in the shop---REAL PROBLEM: severe pain that limits me in ways I just don't want to talk about) that I expect a Pinnochio nose in the mirror any day now.

I tell you all this because I want you to get how bad this whole indifferent physician thing is so many of us are talking about here.

So fast forward from all that to now; recently I went to the new Doc, was really tortured by the pain, felt like a truck ran over me and backed up and did it again. I was in tears in front of her, something my dignity very rarely allows to happen. I said there MUST be something I could take to help when it's really bad. She ( the new Doc) looks at me, hyper-clinical & cold-eyed as a fish and says " With chronic pain syndromes ( special emphasis on "chronic") it just isn't realistic to expect not to have pain".

Call me a jerk but in my world of bedside critical care Nursing, that just isn't an acceptable answer; it resolves nothing, addresses nothing and causes the patient ( myself, sadly) to feel the issue is diminished in the Dr's eyes, that I am a waste of her office time, she'd rather have something sexier to attend to, like H1N1 or paroxysmal HTN.

I have a few friends who have FM and they all have the same story; so many Docs just aren't on board with the new studies and abstracts. It is still being treated as a form of female hysteria and if we are just all given the right combo of sedatives and anti-depressants, maybe we'll go away. Incidentally, I was put on a trial of Cymbalta ( off-label use for FM pain) and it did exactly NADA for my pain and I packed on a frightening 21 lbs in the 14 wks I was on it. I wasn't willing to experiment any longer; I can ill-afford the weight. I never had a wt issue in my life until I became disabled; now on top of everything else, I struggle with that too. I'd just lost 16 lbs when I was put on the Cymbalta :(

We need someone in the medical community to take up this cause and champion for the folks who're suffering with this disease. So far, we have exactly one drug Docs are considering their go-to for FM: Lyrica. Um, sorry, but I'm not about to take anything that has the word "wt gain" in it's monograph, never again, besides my pharmacist of 8 yrs ( an RpH) says it has sketchy effect at best.

It's a real pisser that Big Pharma can develop six different meds to give a 72 yr old an erection, but there is nothing reliable and efficacious for sufferers of FM. ( this excepts Lyrica).

If you have any Doc buddies who're interested, it'd be awesome to get some real patient advocacy going for FM victims...and I DO mean "victims"...what else would you call a disease that incrementally steals your life energy from you, bows you down with intolerable pain and also gets you ridiculed by the medical community ?!

It'd be nice if somebody with M.D. after their name stood up for us. We're not neurotic hypochondriacs; we have a real disease process and it'd be a blessing for all if more Dr's advocated for us.

Thanks for listening. :)

chris

3/21/10 2:18pm

Thank you for your honest difficult overview. I too am a nurse, and though can tke Tramadol occasionally, which usually helps some, I have flare ups that make me nauseated when trying to exercise, or if I walk my dog and I get too hot. It's a sickening kind of weakness/nausea, which, weighed in with the chronicity of this pain, takes a toll. I recently divorced as I just cannot keep up the physical life my husband wants of me. Mind you, I'm not inactive- when I can be- I play, do some exercising and stretches, etc. Not a bit overweight, well, maybe 5#. But during these flare ups, I am shot down, and cannot get up. I then have to take more of the tramadol, then this makes me a bit nauseous (all has a price), but usually, after 2 to 4 days, I'm doing better. BETTER being the key word, and my version of it would mean feeling lousy to most others. Evergy level is down, I have little interest in painting, sewing, etc. When I come home, I use to have a glass of white wine, but then stopped that. Perhaps that was the trigger? Probably not. I have to stay out of the sun a bit, as I can get herpes on my lower lip- usually 1 or 2 times a year. Intermittent bouts of bathroom time, but nothing I'm having treated. The wost? The isolation! The energy, so often, is not there for prior hikes with friends. When I get too hot and sweat, I get nauseous, weak- skin super sensitive to anything. So hard to explain. I'm getting tired of myself right now, but there you have it and yes, we need more representation, NOT just these big Pharmaceutical CO who are maing hand over fist with new meds- most of which are not effective. Chris

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8/14/12 6:01pm

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tobysunny

4/27/11 1:58am

Amen and Amen to your very thorough article. Thank you for being our voice! A job well done!

Tobysunny

confused

8/29/11 8:22pm

amen my twin has fm i can attest to all u have said except cymbalta really helps with pain in her feet. you know that is the important issue we are all genetically different so come on guys lets find some real answers and help those with this and other debilitating illnesses. and for the wonderful neurologist he needs to get a clue

Scooter

9/17/08 6:32pm

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.

Morgan

9/19/08 9:56pm

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, Health Guide

9/21/08 9:57pm

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

9/24/08 10:45pm

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

9/25/08 5:39am

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.SHEILA

blastmom

9/25/08 7:08am

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

9/25/08 7:12am

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

9/25/08 7:27am

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

9/25/08 7:32am

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. Nina

Brenda

9/25/08 7:59am

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

9/25/08 8:15am

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

9/25/08 8:26am

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

9/25/08 9:00am

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

9/25/08 9:01am

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

9/25/08 9:32am

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

9/25/08 9:34am

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

9/25/08 9:36am

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

9/25/08 9:42am

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

9/25/08 10:29am

time to see a new neurologist.

LINDA

9/25/08 10:48am

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

9/25/08 11:05am

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

9/25/08 11:09am

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

9/25/08 11:21am

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

9/25/08 11:52am

BULL! TELL THAT TO THOSE WHO SUFFER FROM IT!

Debi

9/25/08 1:30pm

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

9/25/08 1:41pm

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

9/25/08 2:01pm

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

9/25/08 3:10pm

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

9/25/08 3:16pm

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

9/25/08 4:08pm

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

9/25/08 5:15pm

find a new neurologist!

-k-

janet

9/25/08 5:54pm

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

Anniemetalgirl

9/25/08 9:22pm

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

Hugs,

annie

RUTH

9/25/08 11:42pm

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

9/26/08 9:39am

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

9/26/08 3:22pm

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

9/26/08 5:09pm

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

Chris

9/26/08 7:09pm

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

9/26/08 7:22pm

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

9/26/08 9:56pm

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

9/27/08 12:17am

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

9/27/08 2:22pm

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

9/28/08 12:05am

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

9/28/08 6:23pm

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

9/28/08 8:05pm

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.

Linda

2/13/10 9:08pm

Hi Kathy,

I was diagnosed with F.M. last September, but i remember back when i was 18 i was in a lot of pain i am now in my mid 40s. My Primary Dr is an absolute doll, I have had her for about 10 years or so and she had been treating me with back issues, as well as muscle spasms. She sent me to a Rheumatoid Doc and he confirmed her suspisions that i may have F.M., however my Primary Doc feels that I havent had this all along, now i am starting to wonder.?? how old were you when you were diagnosed and what were your symptoms please? by the way, I LOVE YOUR SCREEN NAME!!!! have you worked with them before? They give family's a bad name the way they are brought up to be true family believers as well as set examples as to the way humans should react,,,,, take care, Linda

Marlene Sylvester

9/29/08 3:22am

Go looking for another one.

msylvester

Pat Reinsfelder

9/29/08 3:35am

Get yourself a new neurologist!

Rachel Jones

10/ 1/08 8:47pm

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

10/ 5/08 1:06pm

A full mouth of non-sense.

shoniamay1126

10/ 8/08 8:29am

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

10/11/08 2:45pm

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

10/17/08 5:11am

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

10/18/08 11:44pm

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

11/21/08 1:39pm

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

12/31/08 3:31pm

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

Many doctors still think this is not a disease.

Maria

mazinoz

3/ 8/09 9:54am

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

3/30/09 8:35pm

Who is your neuro?

catherine findlay

4/27/09 2:57pm

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

6/18/09 6:40pm

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.

Skye

1/ 8/10 3:36pm

One of the first neurologists I saw said there was no such thing. She told me that in her country, Sweden, the translation for my condition was "Middle-aged woman lying-on-the-couch disease.

Linda

2/13/10 8:58pm

Arlene,

I am so sorry you had to experience that, It is horrible,I too had that happen to me. Ahhhh, but pay back is a *ITCH go to www.RateMDs.com put the zipcode in and his name,, thennnnn, you can write your experience with that DOCTOR,,IT MAKES ME SICK TO CALL HIM THAT!!! I use that web site when I am seeing someone new for the first time, and read what other patients say about that particular doctor,, It sure as heck made my day knowing he lost a lot of patients due to his LACK OF KNOWLEDGE,,, good luck, I am sure you will find a Doctor that will help you, in the mean time,, WE ARE HERE FOR YOU !!!! GENTLE HUGS,,, LINDA

chris

3/21/10 2:05pm

Then find someone else!! There is MUCH too much medical studies and background on this- yes, it IS a real condition. They are just finding much much more about it. Look for "Fibro Doctors' in your area.

nurseanne

3/26/10 1:30pm

It is fibrous mucle pain...but it is NOT a disease on it's own. It is a symptom or a condition, but not a specific disease. Do you have pain? I am sure you do. Is it musculoskeletal? I'm sure it is. Is it a defined disease of it's own? Absolutely not. A disease must have a process, a specific set of symptoms AND objective and definitive lab tests. That's why FM is not recognized by the AMA, it is difficult to find an insurance company to cover just that as a diagnosis, because it is NOT a medical diagnosis, it is a symptom. Find a chronic pain doctor who can help you, and also see a doctor who will give you Cymbalta. 99% of the time, pain is associated with mild depression, because why wouldn't hurting all the time depress the hell out of you? But, no matter what, FM is not a disease. I am a critical care RN who was part of a huge, national study with Mayo, Baylor and Johns Hopkins. It was a six-year study. It is not a disease, but it is a condition based on symptoms of fatigue and pain. It used to be called chronic fatigue syndrome. What makes me angry is that there are doctors out there who WILL take advantage of you, your money and your insurance by marketing to frustrated consumers who have chronic pain issues. Get out and walk, change your diet to gluten free, low salt, low dairy. Take care of yourself. I hope you don't think I'm bring rude because I'm not; I do believe you have pain, but this is NOT a disease by itself. I hope this makes sense. Thanks for reading.

brainmd

1/ 1/11 4:59pm

The reason that doctors have been not understanding patients is that there has been no accurate information about the disease. And it is not a rheumatological condition, it is definitely a neurological condition having to do with central perception of pain and pain processing. I can't list all the relevant references but here is a key one that shows you how recently the understanding has completely changed:

Spitzer AR, Broadman M. A Retrospective Review of the Sleep Characteristics in Patients with Chronic Fatigue Syndrome and Fibromyalgia. Pain Practice. 2010;10(4):294-300.

Naneki

3/ 5/11 8:09pm

It is important to have an exchange of information regarding illnesses. I shall look this one up. Not only accurate information regarding the disease, but their lack of willing to look into such a disease as an existing or real by those loving to parade in white coats. MRI, MRA, and CTs do not have the capability to detect pain - just inflammation and other physical changes that are noticable.

Skye

1/26/11 11:46pm

About 10 years ago a neurologist (from where I don't know) told me that in HER country they called fibromyalgia "middle-aged woman lying on the couch disease".

I do believe that most of our doctors have learned that there is more to it than that.

Oh, and I think you should have punched him in the arm and then, as you walked out, you could tell him that now HE has fibromyalgia!

Naneki

3/ 5/11 12:33am

I have fibromyalgia and ended up being seen by a neurologist. This was due to having a lot of headaches, ringing in the ears, communication became difficult, and having jerking motions with my body where my hands would curl into a fist. After the second visit he told my caregiver that it was all in my head and if I should see a psychiatrist. In turn I told him that he should stay out of my field regarding behavioral sciences and that he was suffering from psychosomatic delusions. He failed several questions thrown to him regarding the functions of the meninges and the affects of fibromyalgia, and what where the parts that made up the meninges. Ifa provider can't answer at least these two questions he is ignorant and need to go back to school with a cup of coffee to stay awake next time. Patients can obtain their records and repeal what was said and done by writing an amendment to them (*make copies), go on doctors rating and review and let people know how your provider rate. I am a veteran and check on a list and used the review sites. Found out every VA neurologist failed the ratings.

tobysunny

4/27/11 1:50am

There is a country full of Physians! You are never limited. And there is the internet. Take the information that you find and bring to your PCP!

As forthe physician that does not take it seriously, well, they didn't take Migraine patients serious for decades! Now, they call Migraines a disease! They will call Fibro. a disease also Soon! I would like to see the look on that physicians face when they soon do!:) A Rheumatologist might ,depending on the person, be more knowledgable and sensitive to you. Go out and be a advocate for yourself until that time does come.

God Bless you!

Tobysunny

rose

8/17/12 1:04pm

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gailze

10/13/11 9:00pm

Arlene, I want to cry reading your post. This guy is unacceptable! Please try to find another doctor. I know how overwhelming it can be to organize a doctor visit: kids to the sitter, driving, finding a place to park, walking to the office, filling out the forms for the hundredth time, etc etc. But you hve received BAD MEDICAL IINFORMATION! Thee ARE treatments to help this very real disease. I will be hoping for you that you can find a caring and competent doctor. Best Wishes-

D

10/14/11 9:39pm

Some Doctors are just STUPID and MEAN and have no idea what they are talking about. I have had Fibromyalgia since 1994. I have had to deal with the doctors that say its not real, I have had to deal with the doctors that call you a drug seeker. You need to find a doctor that you can talk to and remember that they work for you!!!!!!!! Not the other way around and if they are mean to you, or don't believe what you say. Just get up and say that I am sorry you feel that way and there is no reason to continue this appointment. I have had most of my sucess with a DO type of doctor. Please don't give up!!! I know how hard it can be. Find a doctor that believes in fibromyalgia if you are having trouble finding one, its ok to ask when you make the appointment. Remember they work for you. GOOD LUCK!!

ladibugcrazi

5/14/12 6:14pm

Well first of all....eithr change doctors or go to a doctor who specializes in

fibromyalgia. My medical doctor didn't quite grasp the seriousness of it either,

but she didn't mock me about it either. I therefore stayed with her, but saught

out another physician for Fibro which could be one for arthritis...they are more familiar with Fibro.

After all this time gone by with so much info available....I would not accept the

answer your getting from the doctor you've seen. Search out for another, talk with friends, make phone calls and ask out right on the phone if they deal with

fibro in their office.

Hope this is helpful and best wishes to you.

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8/26/12 8:57am

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1/14/13 1:25pm

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Q: My neurologist says Fibromyalgia is not real

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