No such thing as Fibromyalgia???

[butterscotch23]

My brother-in-law claims that there is no such thing as fibromyalgia and that the "disease" or "syndrome" was created by the drug manufacturers only AFTER they created the drug Lyrica. Do any of you have any credible evidence that this absurd statement is true??? I was recently diagnosed with FMS and am pained by his unwillingness to believe that this horrible syndrome is a valid, medically-accepted diagnosis.

[PlateletGal]

In my opinion (and based off the research and facts), his opinion is nothing but that. Perhaps your brother-in-law should check out the latest fibromyalgia research at co-cure.org or my website (listed in my profile) and/or read Dr. Garth Nicholson's reports about mycoplasmas and fibromyalgia.

Best,

PlateletGal

[Ghilly]

To the best of my knowledge, the diagnosis of Fibromyalgia Syndrome came about long before the development of the drug Lyrica.  I was diagnosed with FMS back in 1997, and had read articles about fibro years before that.  

Unfortunately, however, there are many who share your brother in law's opinion, not necessarily about it being because of the development of Lyrica, but about it not really being an actual thing.  The bad part about this is that many who share his opinion are doctors.  Granted, most of these doctors are the "old-timey" doctors who have been in practice for many, many decades, but they do exist, and they are numnerous.  It's unfortunate for their patients who have the symptoms of FMS, because it means they either have to find a new doctor (which is often next to impossible depending on which insurance you have) or else they have to deal with their doctor telling them that their pain is nothing, that it's all in their head.  It's very frustrating if your doctor is one of the ones who feels this way.

By the same token, I think there are many who claim to have fibromyalgia who have never actually been diagnosed, but who have diagnosed themselves based on reading an article in a magazine or on the internet.  The reason I say this is because when I read the statistics on how many people in this country have fibro, it's not a large number at all, but it seems that just about everyone I talk to says that they have fibromyalgia!  The numbers don't match up at all, so I think there might be quite a bit of self-diagnosing going on out there.

Disclaimer:  In saying the above, I am in no way saying that anyone HERE is self-diagnosing.  It just seems that I run into a staggering number of people in real life who claim to have fibromyalgia.  Some days it appears that at least 50% of the population is affected!

Ghilly

[kitonthemoon]

I agree with yu  ......your brother-in-law's statement is absurd.  

You will find bunches people like him who disbelief.  Don't give them the power to upset you.

Hugs,
Kit

[LLWB]

I was diagnosed by my rheumatologist in 1993 with fibro, LONG before Lyrica was developed.  There are a lot of nay-sayers who don't believe it, because they can't "see" it. It's not like a broken bone, or Polio, or MS., etc. Please don't let him upset you. If he is open to learn, you can point him in the right direction on the internet. If he's not, nothing you can say to him will change his mind. Some people are not willing to admit they are wrong. Sure wish I could trade bodies with him for a week. That would make a believer out of him real fast!  Take care, and gentle hugs.

Maggie

[luckydzack1]

Lyrica was not actually just discovered it was used for people who were having seizures. It help get the seizures under control. It was just recently discovered that it would help people with FM.
The reason I know this is because I asked my family doctor if he has ever heard of it & he told me that is what it was used for. He didn't even know that they were using it for FM. He told me if I wanted to try it I would have to ask my Rheumy as he would not perscribe it for me.
So tell your brother in law that one. Lyrica was not just discovered it was used for something else first.

[luckydzack1]

Also tell your brother in law to get out of the stone age that he is in & look up FM on the internet. There are plenty of sites about it, if it weren't real why are there so many sites about how to diagnose it. How to treat it and what doctor to see. And there are plenty of sites that also list the symptoms.

[Tink70]

Your Brother in Law is an idiot.  I suppose he probably doesn't believe depression or anxiety disorders or alcoholism exists either - yeah - one of THOSE kinds of people.  Oh, well - it takes all kinds.
Stay the heck away from him and take your meds and feel better!

[jlc5155]

I totally agree with all of these fine people--who suffer and who have suffered with this condition for ages including myself and I especially like Tink70's comment.  Stay away from this 'DOUBTING THOMAS".  I guess that sounds just as good as an IDIOT.  GTaz

[raerae0027]

Tell your brother in law to ask the millions who have this syndrome and have suffered pretty much all there lives with the debilitating pain.  There are so many ppl out there who think Fibro is made up and its all in our heads well I say if its in my head then :be gone: it would be that simple,,but its not.  Chronic pain has been dated back to the 17 and 1800's heres a good article about that,,"show your brother in law",,also it doesnt matter what he says if your feeling pain then your feeling pain,, wether it be in your head,,made up or not.  Good luck :)  
http://www.ninds.nih.gov/disorders/chronic_pain/detail_chronic_pain.htm

[butterscotch23]

WOW! Thanks for coming to my rescue! I sincerely appreciate the support that you all give me - and the many others like us sufferering from FMS. Keep up the good work!

[idesofmarch]

people often deny what they are afraid of.

[droopy56]

Why is it that it only takes one or two negative messages do undo the work of dozens of positive ones? Don't listen to that moron!!! I guarantee you'll feel better.

[karen717]

I read a really good 'letter' on the net a long, long time ago that dealt with this issue. It was a letter to your family explaining FMS. Not to say this would help your brother-in-law since he seems to already have his mind made up. Anyway, I do not still have this 'letter', but it was powerful. There are lots of stuff like that out there that you may find if you search. I also was diagnosed long before lyrica was approved for the treatment of FMS by the FDA. I think the reason there are doubters out there is because we do not look like we feel, we have good days and bad days and even worse days, we have no energy (so we are lazy), and there is no test (blood, scan, etc) to diagnose it. Other stuff just has to be ruled out and your symtoms taken into consideration. Even drs. took a long time to come around (and from reading here some have not) to believe that it is real. Hang in there! It is real!!!!

[Jadore_]

I have heard that from many doctors ,and even my own shrink,,,saying "fibro is a big name for so many symptoms that doctors give because they don't know what else to tell their patients"! Well if you suffer from it you have a different opinon...same here was diagnosed with it many yrs before lyrica came out. My aunt who suffers from it in her 60's was diagnosed like 13 yrs ago during a workmans comp case and guess the courts agree it exsist as her doctors agreed it exsisted! she won over 300,00.00 for her lawsuit and her attorney specializes in fibro cases...so it must exsist.

[PlateletGal]

ME/CFS costs the US economy $25 billion dollars a year in economic losses and yet receives amongst the lowest amounts of research funding of any disease. There are politics involved with these illnesses... just like there were with Gulf War Syndrome (another "syndrome"... LOL!)

btw... I wanted to wish all of you a very HAPPY 4th of JULY !!! Thank you so much for your input. I like this board because we have so many different people, different views and everyone here is respectful of one another.

Thank you all !

~ PlateletGal

[Melissa70817]

I wish that for one month these people could walk....or lay...in our shoes,just for a month.  My family doesn't believe that this is an actual condition either.  I have been labeled "lazy" as someone said in one of the posts and also that I just want the pain pills and muscle relaxers.  I would LOVE nothing more than to do the things that I used to do and not shell out thousands of dollars on doctors and medication every year.  Believe me, I could find more things to do with my money and my time.  I no longer speak to my family, not just over their thinking but it has helped with my depression since there is no longer someone in my face saying there is nothing wrong with me and that I just need to get up and move around.  I wouldn't even bother with the bro in law...he is a total idiot.  

[PlateletGal]

Having your family members not believe you is the ultimate betrayal. It is very painful when you are suffering and reaching out for help and people don't understand or don't want to understand.

Sometimes I'll forward information that is sent to me by the CFIDS Association of America or Pro Health to my friends & family members. I often don't get responses, but I thank God for the people in my life who do know about my illness and are supportive of me. They know that I am not lazy and they understand what heroes we really are... considering all of the challenges we face on the daily basis.

The best to you. I hope with time and knowledge (for your family).... the healing will come.

~PlateletGal

[butterscotch23]

You people are AWESOME! You make me feel better each time I read your stories and opinions. It makes suffering easier to tolerate knowing that there are those of us out there who have this pain in common. God bless you all!

[Jadore_]

I know its hard to get people let alone your family to understand your pain. I know myself my husband got so tired of hearing me complain how sick and tired I always felt. I felt betrayed and always wondered is this in my head? am I making myself sick with these symptoms! I also found out I'm extremely anemic from my doctor last week and he was with me for my doctor appt. and she explained to him fibromyalgia exsist and chronic fatigue as I was diagnosed with ebv many yrs ago with my 4th child. She told him with my health issues and being severe anemic I was not being lazy or just complaining about always being so tired and in pain wasn't in my head but very real. I was so glad she talked to him last week. He seems to be alittle more understanding. I know I myself find myself not talking to friends or family members  because if they ask how your feeling or doing its always the same " tired,in pain,can't sleep"etc.

I wish more people understood this disease and the daily battles we go through.

Thank you platelet for the Happy 4th Hope you and your family and everyone here had a great long weekend.

Lord bless

[Phtartist]

I could not address just one of you.  Each and every one of you are a valuable tool for each other and myself.  
Brothers!  I once heard a saying " Opinions are like ___holes, everybody has one".  This saying gets me through many a difficult mouth fart from people.

That goes for my brother also.  
He isn't talking to me now because I wouldn't go on a camping trip with the whole family, that he organized.  All the wood floors were going to be refinished   (moving all the furniture ourselves, need I say more) stayed at a motel for 3 days etc.  etc.
Lack of sleep, physically pushing myself, fumes, cleaning sanding dust afterward. You all know how we pay with exhaustion and pain days after the event.  This would have landed during the camping trip where we all would be sleeping in one room, well no sleep there for me.
His opinion was, "How can she say she is going to not feel good that weekend, she just does not want to go.  She should just be honest with me. The trip is two weeks from now.  How will she know how she will feel?".  

He has not talked to me since, nor would he have any discussion with my Mom during camping on the FM subject and how I suffer.
Mom has come around now that it is 12 plus years  .

My Dad, identified my symptoms with those that his Mom had, my Grandma.  He asked a geneticist friend of his if there is any research being done on FM and genetics and bingo!  Not only is there but his friend and some colleages  are writing a book now on it.  
It is hard to find subjects so it is slow going, yet working.

NIH, CDC, and several other research org.  that I subscribe to claim that there are valid, diagnosed and recorded by doctors cases of Fibromyalgia in 4% of the U.S. population. Let your brother chew on that.

EBV was the start of my FM also.  I contracted it from a dentist in the early 90's.  I now have full antibodies for the virus.  Until I developed that I repeatedly had the fatigue associated with FM.  Something worth looking into, those of you with EBV related FM.

The books I have found most informative are two books written by Starlanyl.  The first was "The Fibromyalgia Advocate"  The second is " Fibromyalgia &Chronic Myofascial Pain - a survival manual".  
I highly recommend both these books.  
I'm looking at the book cover and it says she has a comprehensive website: http://www.sover.net/-devstar    I've got to check that out, to me she totally rocks and she has saved my sanity with her books.  
Bless you all

[Phtartist]

www.sover.net/-devstar..........not exhisting.  Book was published long enough ago for it to have expired.
Hey Butterscotch,  This is the second edition written about FM/CFS, the first one in the early 90's,  WAY BEFORE LYRICA.  haha

Dear friend told me a phrase that stops idioacy from going further.  Debating keeps it going, heats it up.  Trying to convince someone of something can frustrate and make me look weak.  She told me to say simply " Sorry you feel that way"   You remain strong in your conviction, and they don't get a chance to wittle you down.  We can actually disarm people that way.  One of  husbands best friend is a DR. and he said once to me "Oh you have that Bulls--t disease?  I said to him " Yea, the one that has me run imaginary fevers, headaches, sore throats, swollen glands, elevated imflammation levels, and pain that you could not bear or you would be crying like a baby?  Yea, I have that.

Have a great day people.

[patsy10]

Have you been checked for lyme disease?  I see you live in NJ, a lyme endemic state.  Lyme can cause fibromyalgia.

[Phtartist]

Yes, basic lyme but I've learned very recently that there is another  lyme disease that my Dr.'s daughter actually has had recently.  It took 3 months of school from her at age 16.  Doctors in NJ, cannot treat their own family members, and anyway my Dr. did not know of this other lyme illness until she found a specialist in PA.

This tick is soooo small it is the size of the mark a sharpened pencil makes when touched to paper.  It does not make the red circle.  

Just gardening my husband comes in with ticks on him.  Wood ticks so far, not life threatening but gross!

I feel like putting Frontline for animals on him.  It keeps fleas and ticks away.
Thank you Patsy

[Shanannagins]

If I had a penny for everytime I had someone tell me, "just get up and move around, you'll feel better I'd be rich!

[Melissa70817]

Yes, me too.  I just had my ex husband tell me that if I got off of all of the drugs (pain meds and muscle relaxers) I would feel better and that THEY are what is wrong with me.  I sat up at the hospital all day yesterday while he and his new wife welcomed their new baby girl into the world.  Of course you have to sit on iron chairs, hard chairs, on the floor, etc.  I was sitting on the floor and it doesn't matter where I sit, if I sit too long it takes a lot to get up and it is very painful.  I had been sitting on the floor for about 45 minutes and couldn't get up.  I had to roll myself on my hands and knees and grunt myself up.  I never complained all day but that one grunt caught the attention of my ex mother in law.  Her reaction was, "oh lord, you are too young to be sounding like that, wait until you are my age."  I hadn't expected to stay all day and left my meds at home, I took one extra of each but after that I had nothing.  What I wanted to tell her was, "you @#$$ idiot, my body feels like it is older than yours."  Not only was I in pain but I hadn't slept in over 24 hours because I couldn't sleep the night before. I have been in the bed since I got home yesterday.  I woke up this morning around 3am and went back to sleep at around 10 am  and didn't wake up until 4.  It just goes from one extreme to the other.  Either I can't sleep or I can't wake up.  I think that FM is something I've had all of my life because all of my life I have been like this and have always been told I am lazy.    The hardest part are the people who don't understand, that is so frustrating.  I look normal and healthy and younger than my age (or so I'm told) so people assume that there is nothing wrong with me.  What bothers me most are the people who say that I use this as an excuse to get pills...I don't WANT to take the pills, I never took pills even in my younger years so why would I all of the sudden decide to spend my light bill on pain pills???  It is easier to deal with when it is strangers but your family is a whole other story.  

[Shanannagins]

I completly understand.  My grandma used to say that same thing to me about I shoudn't feel so bad for my age.  And let me tell you...I dread the evil bottom shelf at a store when I am shopping.  Once I get down...I may never get up again.  I think everything in a store should be at chest height!
Also my aunt is very "concerned" that I take the meds I take.  Her husband is a recovering alcoholic so I just think she assumes that everyone who takes these kind of meds is an addict.  Look,I realize that I have a physical addiction to this medication, that really can't be avoided, but I do not abuse my meds.  It doesn't seem to matter how much I try to explain to her the situation or how my doc and I are completly honest with each other and are on top of the situation she just doesn't get it.
You hang in there though and try to educate your friends and family.  Take your husband to your doc with you and have the doc talk to him.  Can't hurt, might help!