Dr. Oz Talks Fibromyalgia on Oprah.com

Thank you for your comments!! Drs have to remember what it was like before they agreed MS was real.  Fibro is bad enough but when you add RSD to it then they really look at you like you are totally nuts and just don't want to work.  Until drs, and the media start to act like this is real, the general public will not accept those of us who have this life altering, life stealing DISEASE!!

Tina -former Executive Assistant :( 

Ohhhh Deborah.  You nailed it with your comment. You touched on our FM fights for rights.  I feel and experience everything you said on a daily basis. I cannot express myself  very well on "paper", so to read your comment made me so happy.  I could not have said it better.  I wish I could send your comment to all my family and doctors as well but it would look like I'm still trying to get them ......to "get me". I'm so tired of trying validate myself and to convince them  of this horrible illness. They look at me and see no outside symptoms.  That darn Cymbalta commercial really angers me.  After telling my mom about FM and that I was diagnosed with it, the commercial came on and made FM look like a day in the park. She looked at me and gave me one of her "uh huh" looks as if I'm trying to convince her but she sees nothing wrong outside.

I'm glad to see that there are decent commercials for depresson, however, I wish there were a more realistic view to what we deal with everyday.  Many of us have had such adverse changes in our lives.  Dr. Oz is a good step towards getting information out there.

I also appreciate all of the other comments that replied to you.  Let's all stick together and try to help each other on bad days.  Love this Comment board.  OK, long enough but again.............thank you for saying what is on my mind and in my heart.

Take care.

karen

Thanks much.  I am trying to get the words of truth out there.  I am so angry.  Not so much angry that I am ill as I am angry that the disease has such stigma.  I can promise you if anyone was going to make up and illness, it would not be fibromyalgia.  They would choose something people beleive.  NO ONE wants to be this damn sick and then add pain to the fact that family members, friends, and doctors think they are drug seeking hypochondriacs.  I am so tired of it that I want to shout from a mountain top.  Anyone know where the mountain top might be????  Ok,,, I confess.  I am not the one who is doubted.  My doctor is wonderful and knows how bad this is.  My family believes me.  Save for a few friends and aqaintances, I am believed.  However, the anger is coming from the fact that I talk to so many who are treated like dirt when they say they have this curse.  I am speaking for ALL of you.  I am out for a cause.  I want to have people help me to shout until the world can beleive us.   Disbelief is a form of taking away dignity.  Why should someone with a painful illness have to have dignity removed from them by being labeled?

Hugs,

Debra aka learnFMnow

oh my you are so correct thank you everyone for speaking out .

Oprah and Dr. Oz, we fibro sufferers will pray for you if you can get on board.

Thank you SO much, Debra, for describing so well what Fibromyalgia is all about.  You have explained so well what many of us have to live with but haven't been able to accurately put into words.  I have been diagnosed as having FM two years ago (even though I am sure I have had it for a long time) and am presently taking Lyrica with several other meds to try to relieve the symptoms.  It did help me for a while but, unfortunately, it seems to be getting progressively worse lately.  I am now in constant pain and have been thinking about retirement on a daily basis for the last couple of months. The worst part is that there is no cure.  Knowing that I am not alone helps me to cope with this terrible disease. 

Thank you so much for hitting the nail on the head, I too have watched those commercials and that lady in the bakery makes it look like all you have to do is take Lyrica and your pain is gone, ha. Every once in a great while I will have a good day with little pain, the pain never goes away though, I get really frustrated and depressed sometimes, but you are right mornings are the worst, I feel like someone hit my legs, back and arms. It takes a while for the pain meds and heat to kick in.

I HAVE BEEN SKIMMING OVER THE COMMENTS.AND JUST HAD TO ADD MY OWN.I AM 58 YEARS OLD.I WAS DIAGNOSED WITH FIBRO WHEN I WAS 39.ON TOP OF ALL THAT I HAVE SEVERE SLEEP APNEA,SPINAL STENOSIS,TMJ,IBS,OVER 30 SURGERIES ON MY MOUTH AND SINUSES, PANIC ATTACKS AND DEPRESSION SO SEVERE I HAVE CONTENPLATED SUICIDE.I HAVE HAD DOCTORS TREAT ME WITH SUCH DISDAIN AS IF I WERE MERELY SOME EMPLOYEE WHO HE HAD COMPLETE CONTROL OVER.AS IF HE RATHER ENJOYED THE FACT THAT HE HAD THE POWER TO EITHER MAKE MY LIFE A LITTLE BIT BETTER QUALITY OF LIFE.OR NOT.WE ALL HAVE TO PLAY SOME SILLY KIND OF GAME SO THAT WE CAN OBTAIN OUR RX TREATMENTS.

THEY DID NOT GO TO MEDICAL SCHOOL TO UNDERSTAND A DISEASE WHICH HAD NOT REARED ITS UGLY HEAD YET.IF YOU FIND A GOOD PAIN MANG DOCTOR YOU ARE VERY LUCKY.I HAVE ONE WHO DOES ALL INJECTIONS UNDER GENERAL ANESTHESIA BECAUSE HE SAYS YOU ARE ALREADY IN A GREAT DEAL OF PAIN.AND IF I CAN SAVE YOU EVEN THAT MUCH.TO BE ASLEEP WHILE 20 OR 30 INJECTIONS ARE DONE.WELL HE IS JUST A DOC SENT BY GOD.

I HAVE LOST A LOT OF FAMILY LIFE BECAUSE I TAKE NARCOTIC MEDS.SOME OF MY GRANDCHILDREN ARE NOT EVEN ALLOWED TO SPEND THE NIGHT WITH ME.AS IF I  WAS SOME KIND OF DRUG ADDICT.THERE IS A VERY BIG DIFFERENCE BETWEEN DEPENDANCY AND ADDICTION.

DIABETICS NEED INSULIN OR THEY COULD DIE.SOME HAVE THE HORRIBLE REALITY OF HAVING TO LOSE LIMBS FROM THEIR DISEASE.BUT WHEN YOU LOOK AT A DIABETIC.YOU DO NOT SEE THEIR PAIN.20 YEARS AGO YOU COULD NOT GET A DOCTOR TO ADMIT A CHIROPRACTOR WAS ANYTHING BUT A FRAUD.A WITCH DOCTOR.I AM VERY UPSET BY THIS DOCTOR ON OPRAH TALKING ABOUT THIS DISEASE AS IF IT COULD BE CONTROLLED.SOME PEOPLE SAY THEY MAKE IT ONE  DAY AT A TIME.WELL TRY ONE HOUR AT A TIME.

I AM SO TIRED OF APOLOGIZING FOR BEING SICK.I HAVE 3 DAUGHTERS,7 GRANDS AND ONE GREAT GRAND.I WOULD LOVE TO SEE THEM BUT THEIR MOTHERS ARE TOO BUSY TO BRING THEM TO ME.AND SINCE THIS YEAR PASSED DRIVING FOR ME IS DANGEROUS.AND I WOULD FEEL TERRIBLE IF I CAUSED AN ACCIDENT.SO NOW MY HUSBAND MUST DRIVE ME TO THE DOCTORS EVERY WEEK.

OPRAH I DO HOPE THAT YOU READ THIS ALONG WITH THE DOCTOR.WHY WOULD THOUSANDS OF PEOPLE SAY THE SAME THINGS.WE DO NOT KNOW EACH OTHER.WHAT IS THE THING THAT WOULD MAKE YOU UNDERSTAND.I WISH EACH PERSON WHO PUTS US DOWN HAD TO LIVE IN PAIN LIKE US.NOT JUST FOR A LITTLE WHILE.BUT FOR YEARS UNTIL YOU THINK YOU ARE GOING TO GO INSANE BECAUSE THERE IS NO WHEN IS IT GOING TO STOP HURTING SO MUCH.NOT FOR US.

I HAD AN EXPERIENCE WITH A PAIN MANG DOC.HE TOLD ME HIS GOAL WAS TO WEAN ME OFF OF MY MEDICATIONS.I JUST SAT THERE SHOCKED.WHEN I FOUND MY TONGUE I SAID OH I AM SORRY.I WAS LOOKING FOR PAIN MANG.IS THIS DETOX? I THINK HE GOT THE MESSAGE.I SAID I HAVE DONE THIS WITHOUT RX AND WITH RX.AND RX IS BETTER LIVING THROUGH CHEMISTRY.

I HAVE READ 7 BOOKS ON THIS DISEASE.AND I AM CONSTANTLY ON LINE LOOKING FOR THE LATES.LYRICA PACKED 30 LBS ON ME IN 3 MONTHS.NOW I CAN'T LOSE IT BECAUSE I CANNOT EXERCISE.THE TERM NO PAIN NO GAIN DOES NOT APPLY HERE.HIGH IMPACT AND EVEN LOW IMPACT CAN CAUSE OUR MUSCLES TO TEAR.

SORRY DR.OZ BUT YOU LIVE IN AN UNREALISTIC STATE.MAYBE SOMEDAY YOU WILL FIND HOME AND TOTO.UNTIL THEN I THINK WE SHOULD BE ABLE TO HAVE A SAY IN OUR OWN BODIES.FOR INSTANCE I CANNOT TAKE NSAIDS.I HAVE GONE TO THE E.R. ABOUT 5 TIMES FOR THAT.AND EACH DOCTOR WOULD SAY OH THESE ARE NEW.THEY DON'T DISOLVE IN YOUR STOMACH.BUT WHEN THEY DO,THEY EAT A HOLE THERE.PEOPLE LIKE US HAVE TO JUDGE OUR OWN LIVES.I AM ON MY SECOND WEEK OF SAVELLA AND SO FAR IT DOESN'T HAVE ANY SIDE EFFECTS I CAN'T LIVE WITH AND I HAVE LOST 6 LBS.AND THAT IS GOOD.TOO MUCH WEIGHT DOES NOT HELP JOINT PAIN.WELL I HOPE YOU ALL WILL LET ME KNOW ABOUT MY COMMENT.PLEASE PRAY FOR ME AND I SHALL DO THE SAME.

Hi  Anonymous,

Perhaps some of those things that help me might also help you. Please take a look at the list at the end of these comments.

I know that we can never expect the meds to continue to help us as they do when we start taking them. The body just adjusts to the Rx that we are taking and then we think that it is no longer effective.

I once heard that in a case like that, go onto a pain-medicine holiday for about a day.

DO NOT STOP your other meds, just your pain meds. Try to go for a half day or less if you cannot make it for a day.

Check with your doctor before you do this. If you are lucky (and I believe that you are) then it will reset your body tolerance and your pain meds will work again.

Hugs

FibroSid

I'm with you .I have FM, and I'm tired of people looking at me like nothing is wrong with me.I've had FM for 20 years now.They don't understand when I say my skin hurts.If you don't have it I guess you just don't  know what it is like.Tired of  hurting. Pam

Thank you.  I feel your frustration though the "air waves". 

Take care.

karen

I am glad that diet and exercise has helped you.  It does not help me and many other patients.  Interesting how some people can eat anything they want and never exercise and never get fibromyalgia. 

I will say that I take alot of pills.  For one reason, I believe in medication.  Notice I did not say I believe in drug abuse or addiction.  If not for pills, I could not force myself to continue to work.  I have to work to raise two young children.  I don't qualify for any government assistance and cannot quit work long enough to file disability or I would be living in the streets.  So, between a rock and a hard place, I take the pills.  If not, I would not function due to pain and constant fatigue.

I will just say that I am an advocate for narcotic pain relief for excruciating life altering pain.  I never intended to depend on pain meds.  However, I would rather live with pills than to never move because of lack of some kind of relief.  I might add that I never took or asked for a narcotic pain med until the age of 40.  If I were an addict or drug seeker, those behaviors likely would have begun before the age of 40 when I got so sick.  Also, unbelievalbe to most people, narcotic pain pills do not impair me.  However, severe monstrous unrelentless pain does impair me.  So give me the pills.

So, I can now expect someone to bombard me with the "horror" and "disgust" of living on narcotic pain pills.  But I take that chance and frankly don't care what anyone would think about me.  If they lived in my body, they would be taking some narcotics too. 

Also keep in mind that just because all we hear about narcotics are the dangers, narcotics were intended originally for PAIN.  And just because we hear about every celebrity who got on drugs and overdosed does not put everyone who takes a narcotic into the category of "addict".  Frankly, I am fed up with the media and the stereotype of narcotic meds which are frequently used safely and effectively by many.  But you won't hear about the "many".  You will only hear the downside and how "bad those narcotics are".

learnFMnow

I am also a CFIDS/FMS sufferer. You mentioned a cancer patient being treated better than we are, well, one of the rare symptoms of CFIDS is loss of hair. It has happened to me twice. People who saw me during that time said, "I am so sorry. I didnt know you had cancer!" I replied, "I dont. I have CFS and fibro". The looks on their faces made me want to slap them. LOL Most of them answered, "oh, is that all?" Or , "Oh, I have heard of that but I dont know what it is" and then they walk away. grrrr One of the things I have advocated over the years iis that we dont want family, friends, doctors, etc to UNDERSTAND our pain, all we want is for it to be RECOGNIZED!!!! KNOW that this is a bad day and help me, KNOW that today I cant think well, so dont bother me with questions, KNOW that I cant have a normal life anymore and accept it and help me plan other ways of doing things! NO ONE will ever know your own personal pain...we all suffer differently, at different tiems in different ways. What works for one may not work for another. JUST RECOGNIZE MY PAIN!!!!

I could not agree more.  We don't want sympathy, but we would like to be believed.  We would like to be treated as human beings who are ill rather than some kind of nut cases. 

And the comment "OH, that is all"?  That is rediculous.  They act like this is a damn papercut.

learnFMnow

I totally agree. I am only 26 years old and I was diagnosed last year. I also suffer from Epilepsy. I often put my needs and feelings aside just as any wife and mother would. The hardest thing about fibro for me, is when the people I love and need the most don't believe me. I often find myself feeling like a burden to my husband and my family. I feel like I am holding everyone back, because I can't work and contribute financially. I get so depressed and so lonely sometimes. I don't want anyone to feel sorry for me either. I just want someone to say "Hey, I can't imagine how hard this must be for you and I know this isn't gonna be easy, but we will get through this together." It breaks my heart when I have to tell my kids we can't do someting because I'm exhausted and/or in pain. I wouldn't even wish fibro on my worst enemy.

YOU GO ANISTAL.I SEE ALL OF THESE COMMERCIALS LIKE SILVER SNEEKERS ETC...THEY PICK ONE COUPLE IN THE U.S. WHO PROBABLY ARE ACTORS ANYWAY.AND THEY THINK THAT IF WE EAT RIGHT AND EXERCISE WE WILL BE LIKE THAT COUPLE WHO LOOK LIKE THEY HAVE A LOT OF MONEY AS WELL.

I AM SURE THAT NO ONE WHO HAS FIBRO COULD PLAY GOLF.WHAT A LAUGH.I HAVE TO GET DRESSED IN STAGES.I HAVE TO REST IN BETWEEN.DRIVING HAS ALMOST BEEN ELIMINATED FROM MY LIFE.

 I HEARD THERE IS A NEW LAW THAT SAYS IF YOU HAVE SLEEP APNEA AND THERE IS A CAR ACCIDENT.THEY WILL ARREST YOU AND PUT YOU IN PRISON.NOT JUST JAIL BUT PRISON.I GET AROUND THE NEIBORHOOD OKAY UNTIL THIS YEAR I HAVE GONE DOWN HILL FAST.I AM NOT SURE IF THAT IS A REAL LAW.A NURSE TOLD ME.30 HOURS WITHOUT SLEEP AND YOU ARE COMPARED TO SOMEONE WHO IS LEGALLY DRUNK.I HAVE NEVER EVEN BEEN A DRINKER.NO WINE NADA.

SO IF ANYONE KNOWS SOMETHING ABOUT THIS LAW...LET ME KNOW IF IT IS FOR REAL OR NOT.I ALSO HEARD THE SAME APPLIED TO OPIOIDS EVEN THOUGH THEY HAVE BEEN SUBSCRIBED.IT SEEMS LIKE THIS DISEASE TAKES AWAY A PART OF ME AS TIME GOES BY.

GET THIS.I HAD A SLEEP APNEA MY 4TH.I HAVE A TERRIBLE BLADDER INFECTION.OR ATLEAST I WAS HAVING FREQUENCY AND THAT BURNING DRAWING UP FEELING WHEN YOU URINATE.THANKFULLY MY PRIMARY GOT ME SOME PERIDIUM PRIOR TO THE TEST SO I WOULD NOT HAVE TO GET UP 10 TIMES DURING THIS TEST.BECAUSE IF YOU HAVE EVER HAD IT YOU KNOW THAT YOU HAVE TO GET UP A LOT DURING THE NIGT.

THE 2 TECHS HAD NEVER HAD A BLADDER INFECTION OR EVEN KNEW WHAT IT WAS.THE SECOND TIME I WENT TO THE BATHROOM I SAW THE RX FOR THE BLADDER HAD LEFT MY SYSTEM.SO I TOLD THE TECH HEY I NEED TO TAKE THIS MED. FOR US TO GET THRU THIS NIGHT.THEY SAID IT WOULD MESS UP THE TEST.IT WAS NOT AS IF IT WAS ASKING TO TAKE PAIN MEDS OR ANYTHING.THEY HAD THAT MASK ON MY FACE AND NECK SO TIGHT.I WAS ABOUT TO SCREAM.I HAVE 3 CERVICAL BULGING HERNIATED DISK.THE LADY SAID OVER THE INTERCOM COULD YOU PUT YOUR HAND DOWN.IT IS MESSING UP THE TEST.I SAID WELL IF YOU LOOSEN THIS THING UP SOME I WOULD NOT HAVE TO MASSAGE THE BACK OF MY NECK.

ANISTAL I WORKED IN THE MEDICAL FIELD FOR 7 YEARS AND I KNOW A LITTLE SOMETHING ABOUT A LOT OF DIFFERENT SPECIALTIES.AND I CAN HONESTLY SAY SINCE WE HAD ONCOLOGY ON OUR FLOOR.I WOULD LINE THEM ALL UP IN THEIR WHEEL CHAIR.I WAS SO CONCERNED FOR THEM.I WOULD SAY DO YOU NEED A GLASS OF WATER.IS THERE ANYTHING I CAN DO TO MAKE YOU MORE COMFORTABLE.AND THEY SAID THEY WERE FINE.AT THAT POINT.AND BY JUST WITNESSING THESE THINGS.I KNOW I WAS IN MORE PAIN THAN MANY CANCER PATIENTS.SOME PEOPLE HAVE NO PAIN WITH CANCER.THAT IS WHY THEY ARE USUALLY TERMINAL BECAUSE THEY HAD NO INDICATION ANYTHING WAS WRONG.

IN FACT WE HAVE A FRIEND WHO HAS A MALIGNANT TUMOR ON HER KIDNEY.SHE HAS BEEN TIRED AND ALL OFCOURSE.SHE HAS BEEN HAVING CHEMO.YET SHE GOES OUT SHOPPING AND I JUST CAN'T FATHOM BEING ABLE TO EVEN GO TO THE GROCERY STORE.YET SHE HAS RETURNED TO WORK.SO THAT JUST GOES TO SHOW YOU DIFFERENT PEOPLE DO NOT UNDERSTAND OTHER PEOPLES'PAIN.EVEN IF WE HAVE THE SAME DIAGNOSIS.

I HAVE CHILDREN AND GRAND KIDS AND ONE GREAT GRAND DAUGHTER.MY DAUGHTER WROTE ME A LETTER SAYING OUR HOME WAS NOT A SAFE PLACE FOR HER KIDS TO SPEND THE NIGHT.WHAT A SLAP IN THE FACE.YET THE OLDER ONE SHE HAS PUSHED IN SPORTS TO THE POINT WHERE SHE HAS ALREADY HAD 2 SURGERIES ON HER KNEE.AT 17.WAIT UNTIL SHE GETS TO BE IN HER 30'S AND 40'S.I CONSIDER THAT DANGEROUS.ESPECIALLY ALONG WITH THEM GETTING SURFING LESSONS.I SHUDDER EVERYTIME I SEE SHARK WEEK.I THINK SHE PUTS THEM IN MORE HARM THAN I EVER COULD.I NEVER THOUGHT THIS DAUGHTER WOULD CUT ME OUT OF HER LIFE LIKE THIS.SHE CONSIDERS ME A DRUG ADDICT.

IT HAD BEEN THAT WAY FOR ABOUT 10 YEARS.OH I CAN COME OVER AND PICK THEM UP AND TAKE THEM TO LUCH ETC....BUT I DO NOT HAVE THAT KIND OF MONEY OR ENERGY.WHY CAN'T THEY SPEND THE NIGHT.THAT IS WHAT WE DID WHEN WE WERE KIDS.GETTING TO SPEND THE NIGHT WITH GRANDPARENTS WAS THE TREAT.I AM SO TIRED OF BEING JUDGED.AND I WAS DIAGNOSED ALSO WITH MYOFASCAIL PN SYNDROME WHICH IS A NEUROLOGICAL PROBLEM.8 HERNIATED DISC.SPINAL STENOSIS.TMJ,IBS,DEPRESSION,NAME IT I GOT IT.I JUST WANTED TO IMPRESS ON OPRAH AND THIS DOCTOR THAT OFCOURSE GOOD EATING HABITS HELP.BUT I HAVE HAD OVER 30 ORAL SURGERIES AND A SINUS SURGERY.HOW AM I SUPPOSED TO SLEEP WITH A CPAP.I AM OVERWHELMED TODAY.SORRY TO GO SO LONG.I WILL CHECK BACK WITH YOU GUYS LATER AND SEE WHAT Y'ALL HAVE TO SAY.

Narcotics don't even work on me.  The pain is unbearable and I too have to work.  I am a teacher.  I miss many days and other teachers just think that I am making up excuses to stay home.  So far my principals have felt that I am worth keeping in spite of my absences.  Just writing a note to a parent or another teacher is so painful.  I also get tired of everyone saying that they have FM if they have a shoulder that hurts or an elbow that acts up.  This not FM and yet doctors diagnose people with FM.  This practice dilutes what FM pain is really like.  A man came to my husband two days ago and he had a book in his hand about chronic pain.  The man "informed"y husband that FM was all in a person's mind.  It was something that he felt my husband should make sure that I got psychological help.  My husband set him straight!  To live in this pain and then to be disrespected on top of that is so discouraging.

I am so sorry.  But I will say that vicodin use to work much better for me than it does now.  I know it is a combination of tolerance and also the disease itself is much worse.

Yes, I believe you are correct.  The FM is overdiagnosed now.   This is why we have some people who say they have it and it is "not bad at all".  Or if they do have FM, they have early stages of it and have not progressed.

I will bet that the music you teach becomes very painful at times because of the magnification of sound.  Believe me, sound, light, and smell are magnified in me x3 at least.

Hope you find some relief somewhere.  My relief is minimal but is there.  I need to step up the dose.  Going to ask the doc.  That said, I realize that someday my body may become completely tolerant to all pain meds.  But I take my chances because I know that if I take the right narcotic, the pain will be relieved just as it use to be with vicodin.  I would rather search for something to relieve the pain than to not. 

I am certainly not a drug head.  But I will take pills in order to attempt to remove the pain.  And they do.  It is just that I have a tolerance now.  yes, that is a "bad" word.  But no, I am not addicted, but have tolerance which is different.

Well, sweetie, I so hope you find somethig to help you also. 

learnFMnow

Debra RN

Yes, to try to make the most of each day, even if it's from bed. I practice being grateful for all I have, which is abundance. I have a loving husband who takes care of me, a decent disability retirement (I had 7 years of teaching before giving the govt another 26.5).

We would be out there with all the other go-getters if we could be. So we add our voice whenever and however we can.

I love Dr Oz, and love his Live. Right. Now.!!!!! Ann

I am that RN that posted.  I know what you mean.  And I honestly don't know how I will work another 20 years to retirement at all.

Anyway, you are correct. I actually look back and know I had FM even 20 years ago.  But the symptoms were mild and easy to explain away.  But as time went by it progressed to a beast I could no longer ignore.  I am sick 98% of my life now. 

I also want to comment on that doctor.  He should not even be in the medical profession. If people are going to close their minds and stay in their own little box, then they should not even work with people.  They should work with machines.  Fibromyalgia is one of the most horrid diseases to exist when in the worst stages.  Some may never progress to this stage.  But most of us do with time.

I am fed up with the medical community and their sneers at the word.  Or the very peers I work with....some of them think I am full of it.  (some don't).  As long as we keep as silent as we have been, we will never gain any kind of our dignity back.  We will sit in this stigma and leave the stigma for generations to come.  It needs to be removed with some activism and assertiveness. 

learnFMnow

Debra RN

I also was a health care worker (lab tech) who had to quit work in 1997 because of Fibromyalgia.  My family and friends have never even understood what I was going through let alone the people that I worked with.  I kept going as long as I could but now I just try to get along as best as I can.  I no longer have many friends that want to bother with me.  I don't wish bad things on people but I have always said if they would walk 1 day or even 1  hour in my shoes then they would really know how I feel day in and day out.  I do collect SS but the hospital I worked in denied me my disability pay also because there is not a test for Fibromyalgia.  I said if I can get Social Security Then surely you can let me get that money that I paid into for 18+ years.  They disagreed.  I was diagnosed in 1990 but I had suffered for many years and many doctors before that.  One doctor even went as far as saying my life was boring and that I should move to a larger city where there was more to do.  I did not follow his advice or for that matter ever go back to him or have any member of my family see him.  

How correct you are..... NO ONE except those of us who suffer the beast ever read the latest research.  It is a very complex disease.  I thought for a minute he must be talking about diabetes.  Eat right and exercise.  hmmmm?  That controls diabetes but not fibromyalgia!!!!!   I would gladly trade fibromyalgia for diabetes.  Then his methods would be tried and true and I would have a grip on my disease.  This disease called fibromyalgia is not controlled by anything I have found thusfar.  Pain pills are my only choice.  Believe me when I say I have tried just about every vitamin and supplement and diet changes known to mankind.  Yet, I am still sick.

SICK AND TIRED OF THE MISTRUTHS....COME ON.  Some brave soul do a real show with a bunch of REAL patients who suffer this hell.

The fibro community needs to fire back...no one is listening!

learnFMnow

Thanks for your comments and support. We need to make it clear to skeptical physicians that we are not of a bunch of lazy whiners. It is hard for me to believe that the good doctor is unaware of the latest research findings. Especially if he is writing for a public forum. This is very disconcerting to me.

We are well beyond the hocus-pocus ideas and treatments that were popular as we who had been diagnosed, struggled and tested with one modality and then another.

Well fortunately things have changed and now that it is clearly a neurological disease, we should expect to see some useful treatments emerge.

At the microbiochemical level, it was shown that mu receptors in the dorsal neural horn of the spine, are somehow involved in the crazy pain magnification and dispersal of FMS pain. Tramadol (Ultram) has been shown to block this to some extent.  This kind of scientific, targeted approach has been very helpful to me. Side-effects? Yes, but not intolerable. This one has been around for some time and works. Does it cure?

No, it does not, but it has made much of my life now livable as I wait for the next more effective breakthrough. 

This is why I find it so disconcerting to hear a physician on a public forum advocating a nutritional and exercise regimen. Dr Oz' participation here is IMHO not helpful and tends to perpetuate the myth that Fibromyalgia is a life-style syndrome. Well Dr. it is a REAL disease with, as yet, no known cure. 

Do ya think he will ever see what we are writing?  HE should be ASHAMED of his ignorance.  I know that I discredit him as a doctor I would recommend now.

Debra RN   learnFMnow

I have had fibro since 1998 and the hardest part of it all is family for me. My fibro likes to react to stress in my chest. Its like a herd of elephants have decided to go in strike and sit there.. No its not cardiac, trust me five full work-ups have proven that. But the real kicker is that my family, all sisters, are under the impression that all that is needed is a day shopping or something really off the wall. I have been seen by drs that have walked from my care insisting I wasn't reacting like a "normal" fibro patient. They aren't in my house seeing the pain I am in, or have been with me when I have had to sell my car because I could no longer drive a stick shift and they aren't there when I have a negative reaction to the newest wonder drug [ cymbalta]. I have had to deal with meds being taken away by one dr, and re-prescribed by my primary.or worse yet have them taken by the FDA and given no re-course drug to fall back on. MY primary knows that I listen to my body and can pretty much tell when a flare is coming. We discuss what drugs we will try and what we stay clear of...twelve years into this and I finally have a dr that listens to me before he grabs his prescription pad. !!!

Glad I'm not the only one that gets the chest pain! Good description, and despite the cardio workups I've had as well saying I'm perfectly fine I still wonder from time to time. Oh and I was ON Cymbalta when I got the diagnosis, so so much for that. Fibro sucks. :-P

I live in southern Ontario and yes his show will be on the air. If you get the windbag (OPRAH) then you should be able to watch him

Debra,

Your poem nails it! "Hell Fire's Rain".

Hang in there Debra, your clarity and expressiveness shows your deep inner strength and your desire to help others in similar circumstances.

Your support team husband, children, doctors etc are also to be commended.

May I please print your Poem and show it to my support group and some doubters too?

I will of course include full attribution to the author.

I am particularly moved by the fact that you are not "fighting" this disease. It is an unwelcome visitor to be sure, but taking the approach that so many do - "to FIGHT" a condition or disease like Fibromyalgia would be like throwing rocks at a cloud of mist.

You expend a lot of energy without even denting it.

If you are interested in the additional things I do , besides, taking my meds, I'd be happy to share my list with you in case some of it would be helpful to you.

Cheers, 

FibroSid

Sidney Mirsky

Age 71, male, retired chemist and pharmacist.

Sure.  I would like for the poem to help someone and to be seen.  Go ahead and pass it on to whomever you want.  It is my goal to get the truths out in some way that someone will listen to.

yep, give me some info on what kinds of things you do for the pain and exhaustion.

Debra

The following is a list of things I have tried and I still use most of them.

As you all know, just taking medicine of whatever kind, is just not adequate to address all the flavors of our pain - (sometimes sharp, dull, diffuse, localized, warm, cold, numb etc).

Over the years I've done stuff to help me to cope with the pain, anxiety, depression, fatigue etc. Sometimes they work for me, and sometimes not, thats why I have collected a variety of toys - as follows:

1. A 4" hard foam roll (get it at a sports store or from a physical therapist office)

2. Occipivot neck devise 

3. TENS unit (I've learned how to place the electrodes).

4. Lidoderm Patches. (I cut mine into 1" strips and place them on different parts of my body where the pain seems localized).

5. A variety of HARD rubber balls of different sizes, some with protrusions and some smooth. I lie on a ball of choice and for the first hour the pain is very hard to bear, but after a while the muscles in my back stop spasming and the pain has diminished.

6. Hot pads

7. Physical therapy to help reduce muscle spasm and calm a flare,

8. Once each 5 - 6 weeks my Rheumatologist administers up to 20 injections into my back and neck muscles (Anesthetic and steroids cocktail)

9. Immersion in a warm therapy pool (90 - 98 degrees F) and mild Aquarobics.

10. CPAP I sleep with it always and even have a small portable one when I travel.

11. I breath Oxygen regularly (no I do not have COPD) but I have found this to be helpful.

12. Last but not least, I sleep a lot. I try to do at least 4 hours at a time.

I have stopped agonizing over not being able to fall asleep. Now if I am too 'strung' I take a warm shower and then  head straight to bed - lights out - and me too!

If sleep does not come easily then I get up and go and write my journal. I just write as fast as I can allowing the stream of consciousness to drive the pen, after a while the pen gets heavy and my head and eyelids too. Straight to bed and I'm asleep before my head hits the pillow.

I hope some of this is helpful.

Hugs.

My best tool to help with the pain is my friend CPAP, Since I have it I sleep better, meaning I can get a good 6-7 hrs of quality sleep. I don't know why it took me so long before getting it.I was afraid that the noise woould keep me awake, the soft hum mask all the night noises like the trafic or the fridg. The pain is still there but with a decent night I can manege.

I use the TENS too, and other things we tend to collect pain related aid stuf  Thank to Deborah for the poem, I see myself there.