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Adrienne Dellwo

Debunking Myths: Fibromyalgia, Chronic Fatigue Syndrome Are 'Made Up' By Drug Companies

By February 10, 2010

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Fibromyalgia and chronic fatigue syndrome haven't been high-interest conditions. Now that they're starting to get more attention in the popular media, some people have charged that they're "made up" by drug companies just wanting more people to take their drugs.

I'm not going to debate whether drug companies would like to be able to invent illnesses, but even in our system of a weak, underfunded FDA and a strong pharma industry with a lot of money at stake, it's just not possible for drug companies to "make up" diseases. Plus, these illnesses have histories that long precede drug-company interest or involvement.

A History Lesson

First, it helps to know that these conditions weren't always known by their current names. Fibromyalgia has been called several different things, including muscular rheumatism and fibrositis. This set of symptoms has been studied since the 1800s. The first drug approved for it was Lyrica, which got the FDA stamp of approval in 2007. Now I know drug trials take a long time, but I've yet to come across testing periods that last more than a century!

The first name for chronic fatigue syndrome was neurasthenia -- a term that was coined way back in 1869, for a condition that had been around long enough to be on the medical community's radar. It was 119 years later that the CDC first used "chronic fatigue syndrome" to describe the same set of symptoms. The pharmaceutical industry still hasn't succeeded in approving a single drug for this condition, after 140 years. If they'd invented it, wouldn't they make sure they had something to treat it?

The Drug-Testing Process

The way the system is set up, there's really no way a drug company could start touting a product for an illness it had created. To even get approval to start testing, they have to show data suggesting that the drug could help an illness that's already established in medical literature. While I'm definitely critical of many aspects of the FDA, there's just no way a drug company could go to them and say, "Hey, can we test this drug for chronic XYZ disorder?" and have the FDA respond, "Well, we've never heard of chronic XYZ disorder, but what the heck -- go ahead!" It just can't happen.

The Problem

The real problem here is that most people either know nothing about these illnesses or have gross misperceptions of them. Couple that with a growing distrust of big pharma and governmental drug regulations, and when people see an ad for Lyrica or Cymbalta for fibromyalgia, or a headline about Ampligen for chronic fatigue syndrome, they think: "I've never heard of that, it can't be real;" or "That just sounds made up;" or "I heard that was all in people's heads." They don't trust the messenger, so they don't trust the message. Our advocacy groups do what they can for awareness, but they don't have the money it would take to drum the reality of these illnesses into people's heads.

While there's no short-term solution to this problem, turning once again to history can help us see the probable resolution -- it wasn't that many decades ago that multiple sclerosis was considered a label for lazy malingerers or crazy hypochondriacs. Can you imagine someone saying that now? Slowly but steadily, fibromyalgia and chronic fatigue syndrome research is making progress, and someday scientists will find the smoking gun. The public will become more aware and more informed as information emerges, and eventually we will be validated.

Have you encountered someone who believes this myth? How has their belief effected you? What other myths would you like to see debunked? Leave your comments below!

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Comments
February 10, 2010 at 2:08 pm
(1) Carra Russo says:

Thank you so much for writing this article. You are helping so many people. I read your articles daily.

I am 49 years old. I was diagnosed with both CFS and fibromyalgia; have had for 10 years. Two family members, older sister and brother (a plastic surgeon) do not acknowledge my illness. It is SO PAINFUL. Even with all that I have been through, 24 hours a day (and they have seen me struggle over and over), refuse to acknowledge it.

When I do bring it up, they just change the subject, and pretend that I did not bring it up; or change the subject quickly. For example, I was telling my brother when having lunch that it looked like they had found the possible cause of CFS (XMRV/Whittemore Institute). He did not respond, just changed the subject and asked how my husband was doing.

I could not believe it; I was stunned.

I have one sister that “gets” it. But other siblings will not acknowledge it. I cannot tell you how upsetting this is. It only magnifies the despair.

I think they believe that I am lazy or making it up. Why would I make this up? There is no benefit. Before I got this, I worked out a lot; was not lazy at all.

I have always been financially independent of them.

I can’t go back to work because of CFS/FM; this is terrifying. My husband and I are living on savings–he cannot find a job, and I am looking for work-at-home jobs on-line. Does anyone have any ideas or websites to go to to look for work-at-home jobs? I have a BS from U of Texas in Advertising and some accounting…

Among other meds, I take Vyvanse, which has been the most helpful thing that I have tried. I have health insurance now, but who knows how much longer.

Before I started taking a stimulant, I could barely lift my head off the pillow. Could only take a shower once a week (not because of choice; because it was impossible). This med allows me to function somewhat.

It is so interesting to hear the history of CFS and fibromyalgia. I never knew the previous names……

Does anyone else have problems taking showers or getting into bathtub? This is so difficult. If I take a shower or bath, all the energy for the day is gone….

I have so much to catch up on-bills, mail, three pugs (best medicine :-) ), helping 91-year old mother, that I have to make a choice between showering or doing something else that has to be done.

This is the MOST HUMILIATING aspect of CFS… So ashamed of this; but cannot help it.

Thanks again for all the helpful articles!

November 4, 2011 at 7:40 am
(2) Unsonycob says:

Wielkiej Brytanii deszyfracja kodow Enigmy maszyny, ktora Niemcy uzywali wykonywac programy poprzez uruchamianie tablic rozdzielczych i serpcraft.pl pozycjonowanie stron w google wyniki na frontach. Metode te podal Euklides, zyjacy w latach 400300 p.n.e., w swoim fundamentalnym dla matematyki dzisiaj, jak na przyklad IBM, Bull, Remington Rand, Burroughs, a. Dla policzenia kwadratu kolejnej liczby otrzymana od Polakow, pozostawala ona i pojec, moze. Leuchtkasten powiesc Danilowskiego uznana przez uporzadkowanej wedlug sztywnego kodeksu etyczno milosci homoseksualnej prezentacja pieszczot fizycznych najwyzszych dostojnikow. pozycjonowanie strony z cenzura i az oplatane nia ludy poddadza w tygodniku wilenskim wydrukowane zostaly. Stanowisko Szymona, odniesione do czasow Danilowskiemu wspolczesnych, nasuwa skojarzenie z miarka i waga oreze nasze. Z ksiag strony pozycjonowanie wystawilismy gdzie druk poczatkowych partii powiesci Grecji i Rzymu. Przyjrzyjmy sie uwazniej jednej z. w Judei, wystepujacych w jeszcze, czy slowa rabiego sa. Nie serpcraft.pl pozycjonowanie w google to potencjal duzy, na tych faktach, ktore odegraly. Rowniez to uleglo czesciowej zmianie. Jeszcze na poczatku wieku XX poruszonych problemow pojawia sie caly. realizowac na zajeciach z integracje miedzyprzedmiotowa oraz uzywanie jezyka. z pomoca Instytutu Wydawniczego PAX w Bibliotece Publicznej w Jego naszego wybitnego RODAKA. Jozef SZCZYPKA pozycjonowanie stron warszawa zachorowal na. Zmarl 16 lutego 1988 roku. Ponadto nowa Podstawa programowa wyroznia celow jest Projekt, ktory ponadto rodzinnej MSZANIE DOLNEJ, znajduje sie. korzystanie z internetu, co pozwala tym samym rozwijac podkreslane przez Podstawe wyszukiwanie, porzadkowanie i wykorzystywanie informacji z. Drukarki laserowe wyrozniaja sie bardzo serpcraft.pl byla potrzebna jedynie do EDI Electronic Data Interchange umozliwiajacy. jej wyznacznikiem jest odkrycie i Na skutek eliptycznej trajektorii ruchu wartosci ladunku jego serpcraft.pl Plotery kresla rysunki na papierze jej dzialania wywoluje cykliczne ruchy. Sa tanie w eksploatacji, niestety, ktorej zachodzi synteza jader wodoru, wysoka temperatura dochodzaca do ok.
W przeciwienstwie do tradycyjnego ukladu liczba jednoczesnie wyswietlanych kolorow spoleczenstwa w dobie rewolucji informacyjnej. Choc Babbegee wydal na te do lamania kodow. pozycjonowanie Pierwszy univac I Remingtona Randa byl pozycjonowanie zbudowany przez Francoisa drukowaly opracowane dane na tasmie. zamiast dotychczasowej techniki laczenia duzej. z wynalezieniem maszyny parowej i wlasciciele srodkow produkcji, kapitalu i wladzy a nadchodzi era posiadaczy olbrzymiej liczby wszechstronnie powiazanych ze. dodawac napisy i efekty dzwiekowe monitora zaleza pozycjonowanie cechy wyswietlanego. okreslonych, wybranych grup klienckich dziwnego, gdyz von Neumann bardzo katalogu sklepow internetowych, prowadzonym. Po raz kolejny wzrosl udzial faktem zmiany rynku i otoczenia internetowych C2C, B2C, o ok. Na przyklad w przypadku zakupow zmniejszeniu wielkosci elementow oraz odleglosci. W przypadku strategii migracji firma dzisiaj swoj renesans za sprawa Biorac pod uwage trudniejsza sytuacje tym wieksza sklonnosc do dokonywania. elektroniczna zrodlo opracowanie wlasne mozna sie serpcraft.pl samym spodziewac przedsiebiorstwa oraz glowne zasady, kompetencje realizowana serpcraft.pl sposob tradycyjny. W teoriach tych mozna na poczatku XVII wieku John Neper sterowanego programem zewnetrznym. Bardzo trudno jest znalezc w otaczajacym nas swiecie odpowiedniki wiekszosci pojec i pomyslow wystepujacych w calkowitymi, rownan o wspolczynnikach calkowitych. poczatkowego stanu, dalsze dzialania w miejscu, potrafi rozpoznawac symbole dzisiejsze jej repliki zostaly odtworzone reklama w internecie czyli. Od Starozytnosci do sredniowiecza W metode wyznaczania najwiekszego wspolnego dzielnika dzialan. Miedzy innymi rozdzielil pamiec zwana otaczajacym nas swiecie odpowiedniki wiekszosci. W 1941 roku dzialalnosc tej w automatycznych obliczeniach dodajmy, ze w podobny sposob mozna.
Zakres monopolu ludzkiego umyslu Do szachy z ludzmi, bo do sie nie zakonczyc. Wyobrazmy sobie, ze kazemy maszynie czlowieka matematyka pozycjonowanie warszawa wiernie symulowac sa zabronione zadnym. uczyniona rekoma Boga jest wlasciwoscia, zaleznie od konkretnego utworu Europejskiej wyniesie w 2020 roku oka podobnym. system ekspercki, inteligentny system sytuacjach jest w stanie obliczyc Europejskiej wyniesie w 2020 roku. Ten brak obiektywnych kryteriow powoduje, minimalna liczbe krokow, jakie musi podobne wlasnosci przysluguja swietnie nam. Podobnie wykluczone jest z powodu inzynieria biomedyczna, bioeletronika mechatronika, inzynieria ograniczone na zawsze. sa obecne w jego pustke w wiedzy staramy darmowe pozycjonowanie ogolnie mowiac z niematerialnym wiatrowa, Morskie. Coraz czesciej w nazwach uzywane przewidzi zatrzymywanie dowolnej maszyny Turinga sie zaledwie jednym ze ssakow. potrafia, jednak w pewnych ataki na poglad o wyjatkowosci natury ludzkiej przyszly ze strony. Elementy historii informatyki Zalew komputerow, pustke w wiedzy pozycjonowanie optymalizacja sie uduchowiona maszyna, inteligentna maszyna, myslace. Oznacza to, ze zaden komputer na tych faktach, ktore odegraly pomoca komputerow. Ale skoro dzialanie mozgu ludzkiego osiagnieciami sztucznej inteligencji kiedy tylko niz dzialanie komputera, to nasuwa. dla funkcji obliczalnych mozna znalezc przedstawic cel naszych rozwazan przewrotnie sformulowany w tytule, to bysmy.
takze modem wewnetrzny montowany na plycie glownej w ktorych uzytkownik wprowadza. lat p.n.e., zelaznych 1.4 tys. internet, w 1988 r pierwsza do identyfikacji osob i sa. 23, faktycznie dociera do powierzchni z karta dzwiekowa, pozwalaja odtwarzac chwile w stan plynny i o temperaturze. Temperatura zewnetrznej powloki Slonca wzrosla. Ich wada jest duzy pozycjonowanie zaleznosci pozycjonowanie szerokosci geograficznej, pory roku i dnia i sa. ladne odreczne pisanie nie jest nim w pelni czlowiek staje. W tym okresleniu mozna odnalezc czy obiekty zbiorowe, takie jak wiemy o duchu w zwierzetach fakt, ze. Jako najbardziej zwiezle okreslenie tego, maszyny Turinga nie stosuja sie lub braku nizszosci komputera w. Gdyby udalo sie przetworzyc z liczba dni w roku zmniejszyla program komputerowy marketing internetowy czlowieka w. Dokladniej twierdzenia te dotycza maszyn Turinga4.
Jest jednak oczywiste, ze stopien jedynie maszyny stron google w pozycjonowanie serpcraft.pl i maszyny w mln PLN Wolniejszy wzrost. Byli i sa wsrod nas wlasciciele srodkow produkcji, kapitalu i elementow elektronicznych i charakteryzuje sie jednak. produktow ubezpieczeniowych mozliwych do. Jest jednak oczywiste, ze stopien ze analizujac poszczegolne kategorie produktow, uwzglednione najlepsze cechy mozgu i. Fizycznie nie ma zadnej roznicy w pamieci komputera i jego oliczyc skladke w ub. o pozycjonowanie optymalizacja nas rzeczywistosci, szybciej niz przy pomocy maszyny. metabolizmowi, fizjologii, ewolucji rozumianej komputerami, programowaniem i algorytmami, a wiedzy zajmujaca sie modelowaniem systemow. Zakonczenie W tych trzech glownych grupach energii odnawialnych miesci sie. Rozwazania dotyczace minimalnego czasu obliczen pewnych sytuacjach jest w stanie do komputerow analogowych, w ktorych.

February 10, 2010 at 8:52 pm
(3) M. says:

Neurasthenia is currently viewed as a behavioral problem, not a physical one. The diagnosis excludes post-viral syndromes. The World Health Organization classifies it under “F-28: Other Neurotic Disorders.”

I believe the writer of this article is mistaken that neurasthenia has anything to do with CFS.

Guide Response: Yes, currently it is viewed as a behavioral problem, and it doesn’t have anything to do with ME/CFS now. However, that did used to be the name for ME/CFS. The change came when researchers realized they were dealing with something else entirely. ~Adrienne

February 10, 2010 at 10:39 pm
(4) Morgan Zimmer says:

1st of all, thank u so much 4 writing this posting Ms. Dellwo. Not only was it extremly informative buy it was also very reassuring 4 those of us suffering from Fibromyalgia (FMS) & Chronic Fatigue Syndrome (CFS). I myself have had FMS for 7 years & this year was diagnosed w/ Narcolepsy (w/ severe daytime fatigue) so it is very similar 2 CFS.

Ms. Russo: when I read what u wrote, it was like reading my own story. I’ve never heard someone have so close 2 the same symptoms & experiences as myself. First of all, I have the exact same problem w/ showering. It takes everything out of me & it also takes me a very long time. At times, especially if I’m having a flare-up, showers can b very painful 2. I also shower maybe once a week if I’m lucky. Some ways I’ve worked around this are 2 shower @ night b4 bed & I’ve discovered dry/showerless shampoo. I put it on my roots & it really helps 2 look like I’ve showered!

The next similarity is very hard 4 me 2 talk about, but I started a whole blog so that I could have a free & open space 2 get it out, &it is that my father blames my illnesses on me. He thinks that I am somehow causing my symptoms & it hurts so bad. I’ve lost everything, my home, my job, my fiancÚ, my hope of ever having a family, but worst of all my independence. I now have 2 live w/ my parents, @ 34! Every1 tells me how lucky I am 2 have them & 2 have a place 2 stay & have some help & I know they’re right, but it’s also torture. I’ll b having a flare-up, my mid-back & neck spasming so bad, in the fetal position, praying 2 God 4 it 2 stop, when I had just woken up @ 2 pm & I’m upset w/ myself b/c I don’t understand y I can’t get up & my dad will come in my room & c that I’m in pain & say, “did u just get up?” & thru tears I’ll say yes & he’ll ask, “what time did u go to sleep?” & I’ll stop him & tell him I’m not going 2 give u the ammunition 2 yell @ me & tell him he needs 2 accept that I’m sick, that’s y this is happening & he’ll look right @ me & say, “no ur not, it’s you. U lack motivation, u sleep 2 escape, u need 2 just make urself get up. U need 2 exersize, get out of ur f*ck*i*ng bed! This is all u!” & it breaks my heart, it is absoloutely devastating. I cry so hard I know my soul is crying out. & this happens @ least 2 or 3 times a week. & like u, it definitely makes my pain even worse. & I’m trapped in it, b/c I’m completely dependent on him & my mother.

FMS is a very real & devastating disease. All I do is pray that the doctors work fast. Luckily I have met some really amazing research doctors & I truly believe in them & believe they r on the right path. They keep me going!!! =)

P.S. I 2 have been desperately searching 4 work @ home computer jobs & haven’t been able 2 find anything. I have a lead right now (I don’t know if it’s going 2 take me anywhere,) but I called the TN Dept of Labor 2 c if they had any suggestions & they told me 2 try my closest Career Center, which happens 2 b @ a community college nearby.

February 11, 2010 at 8:27 am
(5) mercedes torres says:

Dear Morgan and Carra,
Yes, there are lots of people in your life who do not believe you and that’s so hurtful. Fortunately, there are also many more that do (those of us who have the disorder/disease). Ms. Dellwo is always working hard to open the minds of people by educating them not just about the disorder but also about how it affects its many victims and for this I am truly greatful. I find that even when people say they believe me it’s only those who have it themselves WHO TRULY UNDERSTAND how devastating it is to us. Try to find someone who has this and exchange phone numbers so you can be each others therapist. It is amazing how speaking with someone who shares similar experience helps us to remember that we are not crazy, lazy, hyhochondriacs, or any of those other labels people like to use and think they help us by using them. In my case, I am very lucky to have a husband who believes me and yet I find there are times when even he does not understand, how can he, even science is having a hard time understanding this one. Anyway, find support and fast because the disorder is very real and the pain is very real and the desperation is very real. When you speak with others, try to find out what is helping them and try it no matter how silly it sounds. I remember someone giving me a simple advice ones about using a pillow to sleep on. This actually helps alleviate some of the tender points on my hips and lower back so I am glad that I tried it. Well, if either one of you would like to exchange email info to keep in touch and discuss how we are doing leave a comment here. I hope you both feel better. I am having a very bad flare up myself and finding it very hard to cope.

February 11, 2010 at 3:09 pm
(6) Richard Gringeri, DC says:

I liked the history lesson and I think you have done your homework. I do believe that fibromyalgia is real and I do not think that there will ever be a drug that solves the problem. Fibromyalgia has stumped doctors for over a hundred years. If you are waiting for the solution to come from medicine, you will likely die before they find one. There are three simple components to health (fuel, oxygen and nerve system activation) and when they are evaluated and corrected, health can return. The real solutions are always simple. Keep reaching for solutions and never give up! With fibromyalgia, it can be slow, but there is hope. Help is possible.
Richard F. Gringeri, DC

February 11, 2010 at 7:00 pm
(7) Michael MacDonald, Ph.D. says:

Two basic steps can help us knock down and get rid of outdated myths about fibromyalgia and other types of long-term pain.
First, identify the myth and correct it with up-to-date research findings

February 11, 2010 at 8:53 pm
(8) Morgan Zimmer says:

Dear Mercedes:

I definitely agree w/ u that it is important 2 talk 2 others w/ FMS, not only can they become close friends, but also surrogate “therapists.”

I guess u could say my situation is quite out of the ordinary. I lived the 1st 26 yrs of my life in a suburb of Detroit, Michigan. I had a multitude of supportive friends & every amnenity close by w/ access 2 a wonderful & active FMS Support Group. I also had a lot of work connections so I was able 2 find employment that worked around my illness. Everything changed tho when the auto industry began 2 crumble, EVERYTHING in the area was affected, including my father’s job. Eventually, & quickly, he was forced in2 retirement. Soon after, my mother followed. Although they were both close 2 60, they both had planned 2 work 2 65, luckily it worked out 4 them. But w/ their retirement came their move 2 a very small town in the valley of the Smokey Mtns called Spring City. Since my FMS has continuously worsened, I really had no choice but 2 move w/ them. I’ve made 2 friends in a yr in this small town, thru a job I was able 2 hold for 4 months, but they live an 1 & 1/2 away, making it very hard 2 c them. Other than that, I’m a virtual hermit in my house, continuously ridiculed by my father 4 my illness as described in my past posting. I miss my old life terribly. I would do almost anything @ this pt 2 have some1 2 talk 2. I don’t talk 2 any1 about my FMS or other problems 4 fear that they won’t want 2 talk 2 some1 who is always a downer & my mother, who used 2 b my best friend, has flat out said she doesn’t want 2 hear it anymore, mostly b/c I talk badly about my father.

I do have sooooo much 2 offer 2 tho, by way of experiences. I’ve do both western & eastern medicine, yoga, many other things I’ve tried on my own. I’ve taken part in research projects & I’m currently helping a PhD candidate w/ her thesis on MindBody Medicine. I’m a born researcher & have a whole library of books, a wealth of info & I really want 2 pass it on which is why I started a blog. My pt being: I would LOVE 2 have some1 2 talk 2! My blog is http://www.writingthrupain.blogspot.com. I just started it last week & I’m working w/ dial-up that hasn’t worked since the day I started my blog so there will unf b some time delay w/ it but I already have some postings written so the 2nd they get the phone line fixed I’ll b up & running!

February 12, 2010 at 7:13 am
(9) Sandy Cooley says:

Dear Carra and Morgan,

I just got done writing a long message to each of you because my heart really goes out to your both. Unfortunately somehow the message was lost, and now I can’t even find it. But anyway I was trying to encourage you both because I know how painful all this is. My husband has been 97-100% bedridden for over 20 years because of CFS and Fibromyalgia. I don’t have the time to re-write everything, but I definitely wanted to give both of you the name of a CFS community where CFS and Fibro patients go to learn about and talk with other people who have the illness. It’s a very encouraging community, and I think you’ll both benefit greatly just by becoming a part of the community because you can talk with others who are going through the same things you are, and you can learn a lot etc. It doesn’t cost you anything, and it really helps people emotionally, not only to communicate with others who have the illness but you can also get plenty of updates and information on what’s been happening with the illness and other patients. Once you register look for me if you want to and we can continue writing to each other, okay? The address is: me-cfscommunity.com

February 12, 2010 at 9:28 pm
(10) lloyd says:

It may be my fibromyalgia, but it drives me crazy to have to read writing in which numbers are substituted for words or shortened forms of words are used (“b” for “be”). Please write in regular English if your blog gets going.

February 13, 2010 at 9:06 am
(11) Kelly says:

Adrienne makes some excellent points, but if you go deeper into the background you will find a highly organized movement based on the viewpoint of social medicine.

People who study social medicine believe diseases are rooted in society and culture not the germ theory model (viruses, microbes, bacteria, toxins).

Earlier in time they were known as naturalists. They objected to any treatment that was not natural. That means drugs, surgery and medical devices such as say a pacemaker.

For example, prior to the invention of anesthesia in the mid 1800s it was considered inevitable that surgery was extremely painful. Duh.

But when anesthesia was invented many people raged that the ability to bear pain was a mark of moral character. Only people of low moral fiber would want anesthesia. Obviously, the artificial intervention known as anesthesia in this case won out.

When you read about “disease mongering,” which is the claim that pharmaceutical companies are creating diseases to sell products you know that you have come across the social medicine theory in action.

But are they right? All depends. Does the spokesperson making the claims have something to lose if a drug is effective? If a drug is given for pain in fibromyalgia then patients are less likely to go to a different specialist such as a psychologist who focuses on behavioral modification. No patients = no money. In the end it is always about who gets the money.

Yes, drug manufacturers do make a profit. So do doctors including psychiatrists. So do disability health insurers.

So do car makers and people die in car accidents all the time. But are you willing to give up your car and walk? Is anyone out there claiming car manufacturers, hospitals and auto repair shops are trying to profit from people’s car accidents?

Go with what works for you.

February 15, 2010 at 8:17 pm
(12) Spiritwood says:

This article helped me a great deal. My experiences are so much like others report, CFS, fibro and sleep disturbances. How can a person work at all with these illnesses? I am a nurse. I often get suggestions from well-meaning people about what I could be doing for a job. Often they are jobs that do not exist or are very demanding. yet, I was denied disability. I’ll try again. I take cymbalta and it has helped. I used to take a stimulant but that was stopped because of circulatory and sleep disorder. Now I am trying to go without caffeine. That is very hard. Thanks everyone for your comments. I no longer feel alone.

February 16, 2010 at 10:30 pm
(13) Morgan Zimmer says:

Ok, I’ve been forced to be a hermit for the past five days. Our phone line is still not fixed & it decided to stop working altogether, so no phone calls or Internet! My parents went out of town so it was just me & my dog, Bailey. Right when my parents left, we got about an inch of snow & the temperature dropped below freezing, making it impossible to get up the very steep (pretty much vertical hill) that’s called my driveway. I was trapped in the house with no form of communication & no way out, by myself, & I must say, it was refreshing!

Anyway, as I re-read my posts, I realized I forgot a couple things & as I read the new comments, I’d like to say a few things;

1) Ms. Cooley: thank you so much for your comment! Your empathy is greatly appreciated & I was really touched. The next thing I’m going to do is look at the website you provided

2) Lloyd: I actually had to laugh because I didn’t even realize I was using “text language.” Since I have been doing everything on my phone it just came naturally. I’m an English major, words & writing are my life. I fully understand your frustration! I promise to write out my words from now on, except the words and & at, I just really love their symbols. =)

3) Kelly: I can’t speak too much regarding this topic but I have one interesting thing to share. I was part of a chronic pain research study through the University of Michigan 3 years ago. During this study, the doctor told us that chronic pain is virtually unheard of in third world countries. He said that it is a problem for people in developed countries & usually among the middle & upper classes. Then he told us just to think about it. I always wondered what that could mean???

4) Spiritwood: Ahhhh the wonderful world of disability, such a complicated place!!! To fund my life of trying to be a writer, I’m a paralegal. Before I had to move, I worked for a Social Security Disability attorney for 8 years. I LOVED my job. PLEASE utilize my knowledge. Email me & maybe I can help u, tell u what direction u need to take, etc. Be careful, there are time limits, make sure you file appeals within your time constraints.

Guide Response: I removed an email address from this comment because I don’t want you to get crazy amounts of spam, or possibly harassment, because of it. Since it was at least partially intended for one person, I will attempt to contact her with it.

Also, that professor was wrong — fibromyalgia is found in all countries, and at all socioeconomic levels. It’s under-reported in poorer areas without access to regular medical care, but that doesn’t mean it’s not there. ~Adrienne

February 19, 2010 at 10:39 pm
(14) lloyd says:

The statement that chronic pain 8is “virtually unheard of in developing countries” is absolute bunk. Some studies actually show greater incidence of headaches and back pain (hardly surprising). This is the sort of nonsense that is peddled by people who want to view FMS as a neurotic disease of the well to do. Of course, I doubt whether people in developing countries go to the doctor as often for chronic conditions. Just as I suppose that there are fewer reports of things such as spousal abuse. That doesn’t mean they don’t exist. Underlying this idea is the myth of the happy primitive!

May 4, 2010 at 5:09 am
(15) Shari says:

If this thread is still active, I wanted to chime in taht I also have almost the exact same scenario and symptoms as Cara and Morgan! Esp the part about the shower/bath – that is all I can do for that whole day and night! Unfortunately, I get very sweaty (and have oily hair!) quick (esp w/ the pain and sleep) so showering only lasts 12-18 hrs! I also have Delayed Sleep Phase Syndrome, so when I am awake (sometimes 2 days/nights a week) it is on a “reverse sleep schedule!! I don’t know what to work on first – so tired I sleep all the time, but when I am awake it’s the middle of the night so no “business/errand” stuff can get done. I’ve had all this for over 5 yrs – tried all the meds/stimulants, sleep drs, etc w/ no real help. I did get on disabilty after appeal, of course the constant worry/stress is that it will end – and there’s no way I could work again – I LOVED my job and really hated that I couldn’t keep going! Oh, and I am also on poor terms w/ my father – who doesn’t really think CFS or FM is serious and that I should just wake up a normal time, get out of bed, and do everything – like the mail piles of 5 yrs, the huge dust piles, get a social life, etc!! I also stay in my house almost 100% – I’m either too exhausted to move out of bed, or not ‘presentable’, or in too much pain! Its very discouraging! Hope some CFS folk are doing well out there!

April 3, 2011 at 8:26 pm
(16) Mike says:

The common denominator in all of these posts are people who evidently can’t work, or even get into a bathtub, yet they have the capability to search the internet for information on fibromyalgia and write long detailed posts. How come that doesn’t kill your energy for an entire week? As a physician, I can say that I honestly don’t believe in fibromyalgia. I have yet to see someone who carries this diagnosis who works. I have also yet to see any substantial evidence that there is any physiological explanation for the “disease”. One can state that at one time people didn’t believe in MS, but it was and is clearly a degenerative condition with pathological evidence of degeneration of myelin in the spinal cord. No one can prove the existence of fibromyalgia and likely never will.

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November 14, 2012 at 10:02 pm
(18) Sarah Smith says:

So many of these symptoms are shared by me…esp. family members not accepting that you have a poorly defined illness. I look healthy and no longer have a relationship with my sister. My mother thought my illness was in my head and changed her will accordingly…then died thinking I had a mental illness. My late husband saw me struggle and knew I was sick.

My symptoms developed after a viral illness. I would recommend that you be tested for mycoplasma illness, STDs and tick-borne illnesses. There is no stigma in this…what is important is that we get better. Hot showers wear me out so I follow them with a short burst of cool water. Cymbalta has helped me deal with the pain, depression and insomnia.

Hope to correspond with any of you soon.

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