Is Fibromyalgia a Real Disease?

I hate telling people it’s a disease because they act like if I look at them funny they are going to “catch it”. But when I tell people it’s a syndrome they don’t believe there is something truly wrong with me. Syndrome sounds weak, disease sounds deadly. It takes a whole blog/story/conversation/article for them to ALMOST understand what I’m talking about.

It’s like saying someone has a fracture. They don’t believe that it is the same as a broken bone. I am a nurse who has fibromyalgia. It is real and I believe that someday they will find a reason behind the symptoms and it wil be diagnosed as a disease. There just isn’t that much research going into it as it hasn’t shown to be life-threatening, only life-changing.

Jane,

I think that’s great that you are a nurse but yet dealing with fibro too. I would love to be able to talk to you one on one though because I have some questions. Is there a way that we can do that?

Jane I totally agree with you about them finding FMS as a disease. I was diagnoise with FMS in 2006 and each year since, I’ve enocountered several other things. My Rheumy has even said that she believes that I have something more than FMS, but she can’t name it. UH Duh!!! I’ve been in the hosptial several times with heart attack symptoms, and recently I had a mini stroke(TIA). However, they don’t believe its just my FMS, but they can’t diagnoise nothing else. Even in the ER the declared me as a mental case or drug over dose, but after testing prove them to be WRONG, they just start guessing and saying it COULD BE YOUR FMS. Really??!!

Do u have Endo issues? My fibro is always worse when my pituitary Meds are not balanced.

I usually don’t mention it, being one of the few unfortunate men who suffer from the disease. It has become known as a “woman’s disease’ now, quite unfairly I think. And even columns like yours are slanted towards women, which is understandable, as I imagine most of your email respondents are women.
Perhaps you could do a column in the future on being male and suffering from Fibromyalgia or CFS. I am not implying that I suffer more from the symptoms, ladies. Just that it is very difficult to explain when you are male. I therefore don’t mention it except to close family.

To Gary: I certainly could not have said what you said nearly as well as you did about how difficult it is to be a male with fibromyalgia. When someone wants to know what I “have”, I usually say that I have a central nervous system, or neurological disease, and leave it at that. They never ask beyond that. Thanks,
Patrick

Gary, I agree with you, because I believe my Dad had FMS but they never diagnoised him. Since I was diagnoised and have research it, I’m sure it’s what my Dad suffered with; He was in extreme pain for about 9yrs, before he was diagnoised with Lung Cancer. Then and only then could they justify his pain.

If it’s Not Real I have One Hell of an Imagination – Lord – anyone who questions if this is real should Live in my Body for One day – I Promise You not Only will They Believe they will probably Get on their Knees and Thank God Above that they don’t have it !!!!!!!! Everyday has now become a struggle for my life…The Pain is Unreal and all of the other Illnesses and side issues are overwhelming.. Not Real??? I’d like to take one of those people and give them the beating of their lives and then tell them “This is how we feel every day of our lives” Nuf Said….

i HEAR WHAT YOU ARE SAYING I HATE IT………don’t want to have it and i try to ignore it.its at the end of the day when I stop that it definatly makes its ugly apperance and my doctor acts like its all in my head !!……..

Nothing makes me as angry as hearing that there are Doctors who actually STILL Believe that Crap!!!!They should be thrown out of practice…

In defense of those who don’t have fibro, how could anyone possibly imagine such horrific symptoms? Think back to that wonderful time in your life before your affliction, could you ever have imagined feeling like this?
I’ve been suffering for four years & also have osteoarthritis. The combination is brutal. I fear aging. I try to manage my symptoms by taking the best possible care of myself through good diet & exercise. Warm water exercise is very therapeutic. We don’t have much choice, do we?

You say think back .. It’s so far back I swear it is hard to remember – But I will tell you something that is wild to me… I almost find it inconceivable that people can Actually wake up in the morning get up stretch and just go – Just go and do whatever it is that they want to do…. I almost can not imagine such a thing….. Sad Huh???

IN THE END IT COULD VERY POSSIBLY BE THAT CFS AND/OR FIBRO DO NOT REALLY EXIST AS ENTITIES BECAUSE SERIOUS RESEARCH IS NOW SHOWING A NEUROLOGICAL COMPONENT TO THE ILLNESS SURROUND BASE OF BRAIN STEM AND NECK…IF THIS IS TRUE IN A WAY IT COULD BE VICTORY FOR THE MAJORITY WITH THESE ILLNESSES AND WOULD FINALLY HALT FINDINGS OF POSSIBLE PATHOGENS BUT INSTEAD A GENETIC PREDISPOSITION TO ILLNESS…IT ALSO WOULD BE A LOT EASIER THAN ANY RETROVIRAL CAUSE WHERE ONE WOULD HAVE TO LIVE WITH SERIOUS TOXIC LIFE THREATENING DRUGS…EVEN THE LATEST FIND WITH CFS ON THAT CANCER MED STILL DOES NOT PROVE ANYTHING BECAUSE THIS CANCER DRUG COULD BE ACTUALLY BE A REDUCTION OF INFLAMMATION IN THE SPINE AND FROM WHAT I HEAR IT IS A DRUG ONE DOES NOT WANT TO BE PUT ON AS SIDE AFFECTS ARE LIFE THREATENING…I WOULD RATHER TAKE A CHANCE WITH A NEURO SURGEON ANYTIME AND IT ALSO MAKES SENSE TO ME WHY ‘PREDNISONE’ WORK SO WELL FOR ME AND IT REALLY HAD NOTHING TO DO WITH ADRENALS IT HAD TO DO WITH OPENING A WAY FOR MY SPINAL FLUID THAT IS TRAPPED AND REDUCED THE PRESSURE OF FLUID SURROUNDING MY BRAIN…I BELIEVE IN THE CONGENITAL CHIARI 1 MALFORMATION AND/OR STENOSIS PROVIDING THE PROPER NEURO SURGEON DOES THE PROCEDURE BECAUSE IF NOT DONE WELL SYMPTOMS WILL PERSIST…I FOUND THIS PAPER HEAR VERY USEFUL PLUS THE TILT TABLE TEST RETURNS TO NORMAL WHICH IS A MAJOR CAUSE OF THESE SYMPTOMS… ‘NEURALLY MEDIATED HYPOTENSION’ 2005…ALSO REMEMBER THIS AS WELL OUR BONES ARE 70% WATER WHICH BRINGS US BACK TO DEHYDRATION STATES…COULD DEHYDRATION PUSH US OVER…VERY HIGHLY POSSIBLE…THE CHIARI EVEN EXPLAINS WHY HOPKINS SYNCOPE MEDS WERE UNSUCCESSFUL IN THIS STUDY FROM FLORINEF TO BETA BLOCKERS AND ALSO EXPLAINS WHY WE ALWAYS URINATE LIKE CRAZY….I KNOW WE HEAR NUMEROUS PEOPLE SAY CHIARI OPS DID NOT WORK BUT I HAVE READ COUNTLESS STORIES OF COMPLETE AND ‘FULL’ RECOVERIES AND RETURN TO NORMAL LIVES…IT WOULD ALSO EXPLAIN WHY NO VIRUS EVER PROVEN IN DISEASE AND ALL THE HYPE INVOLVED…

This is part of the problem I have been dealing with, my whole family and even my husband says this too me. I tell him that it is the only name I have for all the problems I’ve lived with for 12 yrs so that is what it is “fibromyalgia”!
It hurts when those you love treat you this way!!!

I’ve answered this in regards to Chronic Myofascial Pain / Myofascial Pain Syndrome. I say most scientists think it is but the Canadian government has not classified it as such. I think that Chronic Fatigue Syndrome, Fibromyalgia and Chronic Myofascial Pain should all have updated diagnostic criterion and it’s GREATLY needed to establish new treatment protocols. What’s in place isn’t sufficient and it’s outdated. Alternative treatments need to be offered especially for those who can not use a lot of medication or want an alternative choice to addictive medication.

I always tell people that I have fibromyalgia and chronic fatigue syndrome. I know they are both real because I know how much I suffer and how much all others with these diseases suffer. It doesn’t matter whether they “believe” in it or not, it’s still real.

They thing that hurts me is when they don’t respect me enough to believe me when I tell them how much it hurts. I don’t think a person has to understand the disease or feel the pain themselves to believe that what I’m saying is true.

I don’t understand a lot of illness and the pain they cause, but I will always respect someone who tells me how they’re feeling. People can be compassionate if they choose to. It seems there are other illnesses where the cause is unknown and no one doubts the validity of the diagnoses. Why are FM and CFS so hard to accept?

I totally can relate to every one even the men since I work in a male dominated field. Unfortunately, I have been off for the last few months though just because of the pain and the fibro fog. It does hurt when people, especially your family, look at you with 3 heads or they just think you are faking it or you are lazy and you could fix yourself if you wanted to…I just say “whatever”. I have developed a thicker skin as well. I would like to say I have some success with some of the suggestions Adrienne gave in one of her articles. With regards to the fatigue and fibrofog, I tried the supplement “Rhodiola”. I am also taking Modinfinil(Alertec) for the fatigue. I take Gabapentin for the pain as well. I am going to try “Lysine” next, see if that helps any as well as I could use more help with the pain.

Hey everyone, I can”t find the date, however didn’t the CDC recognize fibromyalgia as a real “infirmity” some time ago? I also think about the people WORLDWIDE who have this condition, many of the same painful, troubling symptoms. Quite a coincidence?:) Thankful for the research that is going on, perhaps one day they will find a more definite cause/causes. I can agree with Nancy, we can learn empathy for others by the things we suffer. It can be a futile and frustrating pursuit to prove to or make others understand. Perhaps we have to just focus on getting along as best as we can, taking care of our own health, not adding the additional strain of worrying what others believe or think wrongfully of us.

I have just been diagnosed, finally!! I have had pain in my back,groin and legs for 3 years and Im sure like most of you I have had the numerous MRI’s, Cat scans, tests, injections, deep tissue massage, numerous doctors and finally they say this is what I have..Ok I will live with it (dont really have a choice) but I feel so much better knowing I am not the only person dealing with the pain. I dont think mine is as severe as some ppl. I believe it started with trauma. I rolled my motorcyle in 8/08, my fiance’ passed away suddenly in 12/08 and then my pain started in 2/09, and has been getting worse. But I am now on Sevella, which seems to help some ( and I havent had any of the side effects so far..) I started taking 2000MGs of vitamin D, I heard that most fibro patients have low vitmain D as do I, so it cant hurt. Im also looking into Kinesology and acupuncture. I have my good days and my bad days but Im finally able to sleep without turning all night in pain. So has anyone tried any holistic approaches? If so what were your results?

Well its been a week since I have been on the Sevella, and I started taking 2000mgs of vitamin D, B complex, and fish oil, and I tell ya I feel great. Not sure if its thevitamins or the Sevella, the Seveall is supposed to take 2 weeks to start to work..but I dont care what it is thats working, I will deff take it!

I am a medical student. Currently I am working with my senior. My Research Subject is fibromyalgia. My favorite topic is is fibromyalgia real.Once a time I was afraid about medical science but now I like it and each day I am trying to get new idea on fibromyalgia.
Best of all, we will pass a good, friendly time in this community.

Fibromyalgia is a cop out for fat lazy people.

Get real, people are dying out there from cancer, heart diease, and mental disabilities.

People who have this “disease” just want attention because otherwise no one would give them the time of day.

Janet I have constant pain in my knees, feet, hips, hands and elbow, I have lower back pain that makes me stoop due to my feet being in pain I also walk at a slow speed and limp I cannot shower or wash my hair by myself as I cannot unscrew a shampoo bottle or wring out a flannel i feel as if i have broken my wrist, I cannot dress or undress myself as I cannot manage to pull on clothes or fasten zips or buttons. After numerous blood tests the doctor sent me to see a rhuematologist who diagnosed me with
fibromyalgia. I am neither fat or lazy, I had to give up the job I loved through fatigue and pain and wish more than ever this would go away so I could lead a proper life like you I don’t believe in Fibromyaglia and think their is something more serious going on with my body but up to now the diagnose is that of Fibro, So please don’t tell me this is not a disease as I am in so much pain my husband has heart disease and I know people are dying from cancer etc but living with this much pain makes you feel suicidal believe me, So please don’t think Fibro sufferers are just wanting attention they are wanting to find out why they are in so much pain etc

Janet, does your brain normally malfunction this badly? If so, you may have fibro yourself. :p

I’m not fat. Even if I was, what would it matter to you? I;m a size small-medium, & model when I am able. I am the same size as Candice Swanepoel. I am told that I resemble Brigitte Bardot when I can get cleaned up. I am also a hard worker who was recognized as one of the nation brightest by Duke. I had a 4.0 until my lengthy reading/walking abilities deteriorated. What I miss most however, is community service & being able to do things with family, …even at home.