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Adrienne Dellwo

Are We STILL Asking "Is It Real?"

By , About.com GuideJanuary 14, 2008

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With all the research into fibromyalgia and the range of physiological differences found between us and everyone else, it's hard to believe that anyone is still asking whether fibromyalgia is real. But the New York Times put that question out in an article I consider to be ill informed and slanted.

The headline itself was enough to get my hackles up: "Drug Approved. Is Disease Real?" As I read comments such as "other doctors ... say that the disease does not exist" and "the more they seem to be around the medical establishment, the sicker they get,” I became more and more livid.

I've been lucky - I have doctors who believe fibromyalgia is the real deal. I have a supportive extended family that has not for one moment questioned my illness or the severity of my symptoms. My former boss and co-workers accepted it as real and I never felt judged or belittled by them, and they all were understanding and sympathetic when I came to the decision I had to leave, even though it broke my heart. I've read and heard countless times that people struggle to get those around them to believe in fibromyalgia, but I'd never experienced it myself. Maybe that's why this article struck so many nerves.

I didn't hesitate to pen a response and let the newspaper know exactly what kind of negative effect a story like that can have. I've pasted my response below for you to read. I'm sure mine will not be the only one the NYT receives.

"I could not be more angry or offended by your article, "Drug Approved. Is Disease Real?" I was diagnosed with fibromyalgia about a year and a half ago, after spending months in excruciating pain and having no idea what was wrong with me. Now, I live with pain, fatigue, short-term memory problems and a host of other symptoms every day. I had to leave the career I loved, I can't do the things I want to do with my children and I've had to miss out on a lot of things. The suggestions that this is not a real illness, that it's merely a response to stress and that the medical community made me a whiner by diagnosing me with this are preposterous and insulting. Enough physiological differences have been found in people with fibromyalgia to show that yes, this is a physical problem. Simply because doctors don't yet understand it doesn't mean it isn't real.

For example, people with fibromyalgia have been found to have low levels of serotonin, norepinephrine and a certain growth hormone. We have high levels of substance P (a cellular pain messenger) and nerve growth factor. Brain scans show markedly different responses to pain than in most people - results that are consistent with studies into related pain conditions.

I am not a hypochondriac and I'm not a whiner. In fact, many of us struggle with taking on too much and with people not realizing how sick we are because we learn how to conceal it. I worked a high-stress full-time job for more than a year after my severe symptoms started and a lot of my co-workers had no idea anything was wrong. And it's not as if I don't know how to live with pain -- I've had chronic back pain since I was a child and it never slowed me down much. I also used to thrive on stress and loved working in a noisy, chaotic atmosphere. As a TV news producer, I lived for the excitement of breaking news and performed at my best when it looked like everything was about to fall apart around me. I had an incredible memory for details.

Then the pain started. Overnight, I lost my ability to think while under stress. I started having panic attacks. I became forgetful. I began to fear breaking news, or even minor develpments that would force me to juggle dozens of details. I could no longer tolerate the noise and lights I'd worked around for years. I was exhausted no matter how well I slept. The waist band on a pair of jeans could cause intense stabbing pains all through my abdomen, as could my 2 year old's elbow in my side. Before my diagnosis, I'd been to the emergency room twice - the first time, the paramedics were quite certain I was having a heart attack. The second, doctors were preparing to take out my appendix until images showed the organ was fine. Anti-inflammatories didn't work for me, and I developed sensitivities to several medications I'd previously tolerated well.

After months of enduring this and being tested for everything in the world, I finally was diagnosed with fibromyalgia. I started researching the condition and found that all of my symptoms fit - and yet I'd previously had no knowledge of fibromyalgia. By working with my rheumatologist and constantly reading and researching the illness, I was able to cobble together a treatment protocol that works for me. Yes, I tried Lyrica. It worked for the pain and what's commonly called "fibrofog" (the inability to think clearly at times) but caused a host of side effects just as debilitating as the fibromyalgia. What did I do? I adapted and kept looking for a better way. I'm lucky that I've found a way to keep my pain under control and can now work to manage my other symptoms. The allegation that a diagnosis actually makes people worse is ridiculous - if we aren't given a medical reason for our symptoms, how can we manage them? If I hadn't been diagnosed with fibromyalgia and learned about the abnormal serotonin and substance P levels, I wouldn't have known to try dark chocolate to increase serotonin or capsaicin to lower substance P.

One of the hardest parts of having fibromyalgia is having people not believe you are really sick. Some doctors accept this illness while others do not. People who've seen fibromyalgia destroy someone's life understand what it means. Other people read articles like yours, that give a polite but cursory nod to doctors and patient advocates who say this is real but spend most of their column inches quoting those who say it's not. The FDA, CDC and Mayo Clinic believe it's real. It's found around the world in people from all socio-economic backgrounds and has a long history. Please, before you report on a much-stigmatized condition, do more research and be certain you're actually balancing your coverage and not disparaging the people who are suffering both from the disease and the stigma. Your headline alone is enough to convince many people that no, it must not be real.

Thank you,
Adrienne Dellwo

Comments
January 14, 2008 at 2:38 pm
(1) Terry T says:

THANK YOU

I THANK YOU–FOR MYSELF AND OTHERS

FOR STANDING UP FOR YOURSELF AND EVERYONE ELSE THAT EXPERIENCE THIS DEBILITATING DISEASE EVERYDAY….

KNOW ONE ACTUALLY KNOW’S TILL THEY EXPERIENCE IT.
AH!!! IF ONLY WE COULD SWITCH BODIES WITH THESE SKEPTICISTS FOR A DAY..

January 14, 2008 at 3:57 pm
(2) Cort says:

Well done and its good to see you at the helm of the About.com site. The NYT did do a good job on CFS recently – cant imagine why they screwed up so much on FM given its gotten more legitimacy than CFS. Good luck with the site.

Cort

January 14, 2008 at 5:24 pm
(3) Sharon S says:

After reading the article I too was very upset. I was diagnosed with fibromyalgia in 1987. After the diagnosis I got information from the National Arthritis Foundation which listed the symptoms and showed the pressure points used to diagnose the disease. Like you, I had never heard of it and wrote it down so I would remember it. The day I came home from the doctor, my Good Housekeeping magazine had come in the mail and there was an article in there about the strange disease that strikes mainly women. I can’t believe there are doctors who are still questioning whether the disease is real. Thank ou for speaking out for all of us Fibromyalgia sufferers.

January 14, 2008 at 6:55 pm
(4) Kara R says:

THANK YOU! I too was really angry when I read this article and shocked that a newspaper I read and respected could get it so wrong. Your editorial response says perfectly what I wanted to say. I sincerely hope that the National Fibromyalgia Association stands up to the Times and sends an official response, that then they publish!

January 14, 2008 at 10:23 pm
(5) Toni H. says:

I would let them try and walk in my shoes any day or try and sleep. I was diagnosed in 1997 after doctors injected me with steriods and everything else. I also have CF. I work in sales and for 13 years ride in a car everyday. I have to work unless someone wants to realized this is a definate reality for some of us to be able to obtain disability. My doctor is very understanding reads and tries everything to help me with the pain that now never ever leaves me. He also feels that alot of us have suffered some kind of neck trauma., which I had disc replacemnt 1 year ago. No relief! Also most of his patients test positive for CMV. I am not a complainer either no one would beleive anything was wrong with you. I do have my days where alot of people can now see the real bad days, expecially when the fatique is really bad. Someone really need to study this disease. I think of all of you as I read your articles!

January 15, 2008 at 3:46 pm
(6) Ruth McDonald says:

Have had what is now known as “Fibromyalgia since age four(4), I thank God that it now has a name other than growing pains. Have been in pain most of my life, and also have MS which heightens the discomfort. Just started taking Lyrica, but still have difficulty sleeping. Will continue the drug in hopes that eventually it will take hold. So happy to finally put “it’s all in your head” comments out to pasture.

January 15, 2008 at 4:02 pm
(7) Laura Sacks says:

I apparently had fibromyalgia from the time I was 19 when I had a terrible car accident but I learned to deal with the back pain and found that excersize like pilates and Yoga. I to had a wonderful crazy career that took me all over the world. I worked for 13 years and would thrive off of my adrenalin. My doctors think that I feed off of everything in my body and finally my body had nothing left. 5 Months After the birth of my son I was diagnosed with lupus but the Pain was so bad and the fatigue that finally after two years nd various testing they finally diagnosed me with Fibromyalgia as well as with my lupus. The pain the migraine headaches the fatigue the memory loss was just unliveable with. It took me three years in thearpy to give in and realize that I will never be that same energetic adrenalin junkie again. I needed to become someone else but someone that I could live with. That was the hardest thing to wrap my head around to reinvent myself my life into something that my body and mind could live with. Certain meds did help as well like the beta blocker that I have been on for 7 years. That helped to block my pain but it also adds to the tiredness and memory problems, but I found everything is a trade off. My lupus meds that I am on also do help and I load up on antioxidents Vit. C herbal teas that detox the body. I still do my excersizes which sometimes is a major push to do but you have to push yourself you cannot give up on yourself. The road has been long and hard and it will continue to be a changing in motion. My husband and family also had to learn to except all the changes too which at times I think was harder for them than me. At times I thought my marriage would end but having our son I think saved us because he has brought so much joy and life into our lives and he continues to do so he is my savor my light and I thank god for him everyday. I hope others realize that these disease are not in our heads if it was then we should be able to shut the pain out the same way we supposible turned it on! I never asked nor wanted to be sick I had so many plans for the future things that I was going to make happen. This happened and hit me like a ton of bricks stopped me dead in my tracks and I fought it fought it for two years. Well that fight and stubborness put me in the hospital which ended my career for good. Even my doctor was the one who had to convience me that I had no choice but to go on disability that working is not going to be an option for me. I cried and cried and cried I was so mad at myself at the world but the pain and sickness that I felt actually outwayed the anger. It was overwhelming. I hope others read this and truly understand what we go through and how real it all is. That they should be thankful that they don’t have to feel or go through what we go through. This is a life altering disease and life altering in every aspect of our lives and the lives of those we love.

January 15, 2008 at 4:49 pm
(8) Ana says:

Just thank you! God bless you.

January 16, 2008 at 12:38 am
(9) mb turntable says:

Is The Fibro Real? Yes it is! I suffer from The Fibro. The pain is so unbearable at times that all I can do is sit in my recliner, eat processed foods and use my right thumb to navigate my remote control. But I can’t work. Oh, no that would hurt too much. My dog even suffers from The Fibro. He has Fidomyalgia. Michael Jackson has uh several medical issues but he and his brothers have been suffering for years with Five Bro Myalgia. My situation is so complicated that Fibromyalgebra is required to determine what will be covered by insurance.

January 16, 2008 at 1:47 am
(10) Charlayne says:

I was very angry when I finished reading the NY Times article. How in the world could someone look at people who went from very healthy, very busy lives to someone who can barely move out of a chair without severe pain, dizziness, and clouded memories and not think that what they were experiencing is real? Do they think I WANT to be this way?

Before Fibro was finally diagnosed, I lived with the “Lupus” diagnosis, treated with steroids, and had to push through things. Believe me, it never got better.

Trying to outrun it or push past it, I got busy in my faith community while raising a teenager and dealing with my other kids, new grandkids, and a barely new marriage. I went to school then, after graduation, I got a job that thrived on deadlines. I used to seriously joke that I “eat stress for breakfast”. I was always busy going somewhere, working on something, and being three places at once while volunteering for more (helium hand disease–I raised my hand and volunteered to do everything).

Then fibro hit like a pile-driver, stopping me in my tracks. No more could I stress without being horribly in pain. I had to make sure to rest whenever I could and try to take enough over the counter pain meds to dull the pain without screwing up my liver.

I got sent to a rheumatologist. She checked me out, asked questions, checked further, drew blood, and told me the name of the pain I carried: fibromyalgia. I got to start on pain meds to handle the pain, sleep meds to sleep, a cpap to regulate my breathing, and not much else. I’ve since seen an endocrinologist and know that the falls I took that gave me a bad concussion (3 days in the hospital kind) did damage to my pituitary gland and they think that the lack of human growth hormone contributes to the pain cycles of fibro and the problems with fibrofog. So, now I am on a shot of human growth hormone a day for the rest of my life. I’m on Lyrica, Cymbalta, Flexoril, and Hydrocodone for the pain as well as the Depakote I take for the seizures I have due to the concussion, thyroid medicine and estrogen. I’m not on public assistance either, the medication costs come out of our insurance and we have huge co-pays.

My husband read that article and he was, to put in in one word, ANGRY that they said it was all in our heads. He has to wash dishes, help with house and laundry, sometimes help me up from my recliner and, (and I hate saying it but it’s truth) even wipe me after toilet because I am unable to bend very well. Would I put him through all that if I was just being lazy? Would he put up with it if I was just being a malingerer?

I wish the writer of the NY Times article had talked to those of us who have had to alter our lives for this “nonexistent” disease!

Thanks for your really good reply to them, Adrienne.

January 17, 2008 at 1:05 pm
(11) sarah says:

I too was upset when I read the article today from the NYT. I was recently within the last week diganosed with Firbromyaliga. I stay in severe pain and have a hard time just getting out of bed. I wish it was all in my head cause then maybe i could get rid of it but it is not and for people to question it needs a spend just one day in our bodies and then let somebody tell them it is not real. It is bad enough to have this condition. Nobody wants to be in this kind of pain. So I want to thank you for standing up to them for all of us who are stugeling every day with this condition that they say does not exsist. We know otherwise. If they could only feel our pain they would not have said that.

January 17, 2008 at 4:30 pm
(12) Fibro-anon says:

The pain may be real, but so is the fact that people actually take comfort in being diagnosed with fibromyalgia.

Of course most people take comfort when the doctor tells them there is nothing wrong with them.

Which is essentially the same thing as diagnosing someone with fibromyalgia.

January 17, 2008 at 4:44 pm
(13) chronicfatigue says:

Fibro-anon — if I’m misunderstanding you, I apologize. However, I take your post to be in support of some of the doctors in the article, and I’d like to respond.

You said: The pain may be real, but so is the fact that people actually take comfort in being diagnosed with fibromyalgia.
That’s true, because then we know what we’re facing and how to start managing it, instead of being scared and confused.

You said: Of course most people take comfort when the doctor tells them there is nothing wrong with them.
That’s only true of people who don’t have chronic symptoms. When you go in for a routine physical, it’s great to hear nothing’s wrong. When your doctor is pouring over the extensive labs he ordered hoping to find out why you’ve been doubled over with abdominal pain, it’s far from comforting.

You said a doctor’s saying there’s nothing wrong with you is: …essentially the same thing as diagnosing someone with fibromyalgia.
I hope for your sake you never have to know what very real symptoms we go through from this condition that has very real physiological causes.

January 18, 2008 at 9:07 am
(14) Joni Waseity Beadle says:

I’m livid and tired of those who have no idea what they’re talking about. My pain, losing 2 jobs and trying to move forward just goes to show how tough Fibro sufferers really are. People who want to comment on the disease not being real, really should start taking some notes of their own. They need to think before they write or speak. And we’re the ones with brainfog? I think not. It’s these kind of people who really have it.

January 18, 2008 at 1:44 pm
(15) gayle says:

I was an active RN who suffered from back pain that worsened. I had surgery, but it didn’t help. I had a severely mentally ill husband who stressed me out. He tried to commit suicide two weeks after our wedding. I had no idea he was so depressed. He was diagnosed with bipolar. On St. Patricks Day 1990 i went home from work never to work full time again. I tried all kinds of part time jobs cuz we had so much debt from my ex’s bipolar problem,,but I could’t sustain them. I went to a Pain Clinic and started exercising. That helped for a while. I was diagnosed in 1998 even though i received disability since 1995. MY husband got more ill and was losing his job. we got divorced in 1997. I lost my career, my husband, house, and plans for my future. I found God when I felt myself say this isn’t going to go away. I take many medications. I was fortunate enough to meet my current husband two days after my divorce! He has good health insurance. I never really had problems with doctors believing me,maybe because they knew i was a nurse, but as far as relatives, that was different. My true friends stuck by me, before fibro and after. I go to Fibromyalgia Treatment Centers of America and am thankful Dr. McNett has tried all the latest things on me, but no cure as of yet. It’s his goal. I believe there needs to be more research and better pain management. I am now experiencing hot flashes and the onset of menopause. i have gotten worse, especially after the divorce and i had to go live with my parents cuz i couldn’t afford to live on my own at 39.
i’ve had depression and anxiety. i push myself all the time. I am trying to slow down and enjoy each day the best i can. I have the pain, TMJ, IBS, mitral valve prolapse, GERD, and allergies. I take meds for insomnia, depression, anxiety, muscle relaxation, and the digestive problems. Who cares if people don’t believe. There are enough who do. I couldn’t have made it this far without knowing God has a good plan for my life, even though it wasn’t what i thought. I try to be positive, but sometimes it’s downright impossible.
Reading the comments help me remember Fibro world even though i live in the real world. I pray that there’ll be a cure one day,, but maybe not in my lifetime. We are the pioneers of this disease and we deserve appreciation for trying to cope.

January 18, 2008 at 5:24 pm
(16) Nancy Henson says:

My primary diagnosis is M.E.(CFS)but with mild fibromyalgia. But since I have been a support group co-leader for many years, I’ve known so many people whose diagnosis was primariy fibromyalgia and I could see the intense pain they were in. Or if I talked with them on the phone, I could hear the pain in their voices.

I’ve had severe pain but it was from disc disease and was finally corrected with surgery. But I know what excruciating pain feels like.

I think you did an amazing job of writing about your experiences and explaining what they should or should not do in writing about a “stigmatized” disorder.

My reply to them was very brief as I was just too tired to come up with the best words as I’ve been sick for over 23 years. You said it all and said it exceptionally well.

Thank you, Nancy Henson (grannycfs)
Charlotte, NC

January 18, 2008 at 5:42 pm
(17) Regina says:

Right on Girlfriend! You said it all. Most of us suffer for a long time before being diagnosed and tend to be overachievers if anything. We have real health issues that need addressing but do tend to hide our illness because of it’s lack of a clearly defined set of criteria and treatment. I am now being treated after probably having this most of my adult life. I feel better at 61 than I did in my 40′s. Sad isn’t it? I’m just thankful that I finally know what I have and that I have some relief at last.

January 18, 2008 at 6:25 pm
(18) carol coons says:

I too wrote to the oped page of the “gray lady” but no one called me so I guess they aren’t printing my letter. I was angry at the injustice of it. The NYTimes has once again not examined their sources as credible or with the newest information on this disorder. Having this for 15 years, I pretty much have tried everything. Am now on LYrica and I can feel it working but at a very low dose so hopefully, I will not get any serious side effects depending on what time of day I take it. I am also going to a fibromyalgia and fatigue center. I hope this is helpful and not just another “Snake Oil Salepitch”,,,,,
we fibromites seem to get exploited all the time….I do not go to any male doctors if I can help it….Carol Coons
Fishkill, N.Y.

January 18, 2008 at 7:33 pm
(19) Fran C. says:

I am in Sydney, Australia and didn’t see the article but shall certainly see if I can find it on the net. It sounds awful and the author must be truly blessed with good health to have such arrogance. As someone who has been in constant pain for 25 years, I know how very real it is and how you just have to live life as best you can around it and accept the many limitations it presents. And worse, how hard it is to hide the condition from co-workers and managers due to the stigma so many of us suffer as a result of this illness. Fortunately I have a supportive doctor but she retires soon and I’ll be on my own again. It helps to know I’m not alone…thank you.

January 18, 2008 at 8:05 pm
(20) Mary S says:

They also said that endometriosis was all in a woman’s head some 40 to 50 years ago.
Unfortunately, people have trouble with what they themselves cannot see or understand.

January 18, 2008 at 8:45 pm
(21) DSL says:

Thank you all for your strong responses, your voice. I had been searching for an answer for my low endurance (since childhood), overwhelming fatigue, and “fibro fog” for most of my 57 years. I collected diagnoses along the way – IBS, GERD, thyroid, migraine, dermatological problems, depression, anxiety, back pain, etc. I was told I was sleeping too much, too little, was not exercising enough, nothing was wrong with me, etc, etc.

Two years ago my stamina was so depleted, my body would not rebound and I could no longer “push through.” I asked to be allowed to come into work when I needed to at a later hour and to take time for medical appointments. I also asked to be allowed to work in the evenings and on the weekends to make up this work. Like others have written, no one would believe that anything was wrong with me (needless to say medical documentation was provided). My request was denied. I was retaliated against and eventually was fired. I loved the work that I did and had no intention of ending up on disability retirement.

Shortly thereafter, a rheumatologist diagnosed me with fibromyalgia. A sleep center diagnosed me with multiple,severe sleep disorders. I am now more honest with myself about my level of pain and how it decreases my ability to function daily.

I sued my employer. My case continues — but the court questions whether fibromyalgia with severe sleep disorders qualifies as a disability under Federal legislation. I wanted to cry when I read this headline.

Who does it serve to say that this is not real? If my employer had supported me, I would still be doing the outstanding work that I was doing. Is there a method to this madness? I just do not get it!

It does help to know that I am not alone. I would like to hear from anyone who has been able to justify an accomodation…thank you!

January 18, 2008 at 10:33 pm
(22) Barbaraanne says:

Thank you for your post.

My friend, Sharon is now dying with Multiple Myeloma from Sjogrens Syndrome. She got Sjogrens because she had Fibromyalgia. If Fibro is not real and is all in our heads, why does she have less than six months to live? Why is she dying? I am losing my best friend to Cancer because her immune system was weakened by Fibro and she therefore got Sjogrens which in turn led to the Cancer.

They are so wrong on this point.

January 18, 2008 at 10:40 pm
(23) Brenda S says:

Thank you hardley touches the gratitude I feel for your words to NYT. I have been ill for quite some time. Fibro fog, ibs, hypothyroid,high bp,panic attacks,sleep apnea, knee troubles, and feeling pain throughout my body.Sometimes stabing and others dull yet it never misses a day. My fingers hurt that feel bruised as does my legs at times with my rls. All in my head? NO! Not in anyones who has this disorder for I cannot think of one person who would want to pretend they have this. It takes over your life as you once knew it and the new ways just never feel right. Because so much is lost. If not physically, mentally WITH SADNESS because . others judge you and feel if you look okay, you are!!! NO, we are not. There was a time no one would have believed Aids would be real or cancer and yet they are and so is Fibro. Thank you Brenda S.

January 18, 2008 at 10:40 pm
(24) Sue Tobias says:

I just consodered the source The NYT and know that almost eveything they publish is wrong and how many big TV reporters have lost their jobs by reporting stories from this paper. I feel we should use our energy to write to someone who cares. On the same day I received an email that the gonernment in Ontario, Canada wanting their citizens with fibro to give feedback> The NYT cannot get us a cure or treatment so let us send letters to people who can. A good newspaper would have carried an opposing opinion or identified the author and state what their credentials are so the reader can decide if this is real reporting or an editorial. My local paper runs Adriana Huffington’s column on the editorial page so knowing it what it is, I do not waste my time on it, so this shows the quality of the paper and the source.

January 19, 2008 at 1:11 pm
(25) Betsy Thompson says:

Thank you for the eloquent way in which you represented all of us who have fibromyalgia in your letter to the New York Times! I hope the online fibro communities will innundate the paper with their real pain stories, and a more sympathetic article on this awful disease will be published soon.

I’ve lived with fibromyalgia since 1983. I’ve been fortunate enough to have good doctors who believed me (after only two who didn’t) and because of quick diagnosis and treatment, I’ve been able to have a career and raise a family before finally being overcome by the pain and fatigue and forced into early retirement.

Just because I was able to do that doean’t mean that I didn’t have to make compromises in my lifestyle because of my health, and it certainly didn’t mean that I didn’t live with the awful pain, fatigue and cognitive difficulties every single day.

I hope you find a good treatment regimen that manages your symptoms as well as possible and that you continue to be surrounded by people who are supportive.

January 19, 2008 at 1:38 pm
(26) beth says:

God Bless you for your talented compilation of facts to an undeniably under-researched article topic. I hope the author realizes how much hurt they have caused. Many people do have doubts about Fibromyalgia and it is articles like this one that keep them confused.

Peace and better days ahead for us all.

January 19, 2008 at 8:59 pm
(27) Tina says:

I too, have a similar story to tell about being forced to abandon a promising career in medical research (yes, that’s what I said-ironic, isn’t it). I still work part time as a clinical molecular biologist but that has also been threatened by flares and relapses. I even survived breast cancer two years ago, underwent a total mastectomy and four additional reconstructive surgeries last year. I have told people close to me that if someone told me that when I woke up the fibro would be gone, I would go through the cancer surgery all over again- in a heartbeat. That is how much more difficult the constant pain and fatigue of fibromyalgia is to deal with.
The NYT article is poorly researched and slanted. The reporter obviously went into the assignment with either preconceived notions about the disorder or pharmaceutical companies or both. Some of the medical professionals and scientists (I use the term loosely-no real scientist would exhibit that sort of lack in objectivity) quoted in the article have a long history of purporting the “all in you head” theory. Just go to the NIH PubMed website and do an author search. The rest are just plain in need of some up to date continuing ed. I monitor peer reviewed journal articles relating to fibromyalgia regularly and the vast majority of the research being done and published supports the reality that we all live with- that fibromyalgia is a serious physiological disorder.
I think the NYT article needs to be responded to, but then dropped and forgotten as a piece of biased drivel.

February 4, 2008 at 8:27 am
(28) JoannieG says:

Reading this article today and other peoples comments has possibly saved me fro acting stupid. I lost my job 3 years ago through Fibro and have been fighting and form filling and begging ever since.
My partner and I have been trying to get my works pension via a solicitor who advertises as Fibro friendly. We were sent to a ‘Specialist’ in Fibro for a report to support my claim. Instead we received what we feel is abuse – a report stating I should see a Phychiatrist and Physchologist backing this u with a couple of statements out of medical notes where ‘health professionals’ in the past have implied I am emotional/depressed. As well as Fibro only recently diagnosed but sure have had since childhood – I also have Hidradenitis Supprativa since age 17 numerous operations and extensive plastic surgery. Er who wouldn’t be affected!
So now we have no support to apply for my pension, a very damaging and derogatory report and they both want paying! With money we had saved hard for o fight our case. We are now left with nothing other than future battles, form filling and medicals to try and hang on to the state disability I curently receive. I have worked all my life and struggled back to work after surgeries and crisis only to find I am labelled neurotic and must try harder. These people are clueless.
I just pray that my partner and I could find a Specialist who believed and would support us.

September 24, 2008 at 9:34 am
(29) Stacy says:

Thank you. Your response to their article was just what was needed. Thank you for standing up for the world of FMS patients (like myself and others) that are having issues with people believing them.

Also…dark chocolate huh? :)

February 18, 2011 at 4:32 pm
(30) Shelley says:

Adrienne,
I just want to thank you from the bottom of my
broken heart!! I don’t know where, or IF, I’d be
If it weren’t for your dogged determination and
tenacity on behalf of ALL of us who would
CERTAINLY choose almost ANYthing else to
having this nightmare of a disease!
I’m in the process of trying to find a place to live,
one where people aren’t constantly making fun
of me and pulling nasty tricks, all because they
think I’m simply lazy! If I could help my neighbors
shovel snow, I WOULD!! I can’t find ANYone to
Advocate for me; we have 5 feet of snow on the
ground and I’m being evicted for not paying my
rent because the owner will not fix my heater,
stove, oven or electricity.

Is this “REAL”??? It doesn’t get more REAL than
THIS!

Thanks again, Adrienne, and Bless You!!!!

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