Fibromyalgia

There's a lot of other threads.

The search function says you are wrong R1

I hate to say it but the people I know who claim to suffer from it are total attention sucks.

Google "datalounge.com fibromyalgia". There are at least ten existing threads you could have chosen from. Muriel won't let the link post, however.

[R3] Me too. Right now one in particular is rolling around in Corona fear like a hog in slop. I’m sure she’ll never get it since she hasn’t left the house since 1996.

I am a psychologist and the minute someone mentions they have fibromyalgia, my first though is "personality disorder." And it is usually the case.

I Am Too Exhausted to Explain How My Fibromyalgia is NOT a Privileged White Woman's Disease.

You aren't the only one R6

I worked with a woman who had it and she seemed to be in constant pain. Always thought she was sincere. Until seeing this post, I never thought it was fake disease and I'd need proof that people are/were faking. That's all I have to add to this post.

R4 Those threads are all closed and years old.

Stop being Cunt Queen Of The World, please.

It's a disease that Dorothy Zbornak would have and cuss out doctors who refuse to humor her.

Lena Dunham has said she wants to be "the face" of fibromyalgia.

She could be the face of so many illnesses she has claimed to have. Fibromyalgia, endometriosis, EUhlers-Danlos syndrome, obsessive-compulsive disorder, generalized anxiety disorder, several eating disorders...

Dorothy had chronic fatigue syndrome, and it was real, you monster, R11.

Fake. Every medical person I've personally known puts "hypochondriac" in their notes when they hear it. I knew one woman whose fibro flared up when she was tasked with chores or anything she didnt want to do. Otherwise, she was up for shopping, clubbing, dining and workouts.

Why not call it Zbornak-syndrome?

Karen AIDS

For fat and stinking whore r10:

Isn’t it Greek for “I don’t feel like going to work today”?!

R18, I know you think 2013 was a good year because it's the last time you were fucked but I prefer a fresh thread.

R19 = Dr. Budd

R9, she wasn't sincere. The voices in Dataloungers' heads told us so!

I notice there seems to be many more comorbidities associated with fibro than your average disease. Weird!

I do not have enough spoons today, to explain the agony. So, here is the link to my latest GoFundMe.

I'm so tender to the touch!

It's a real condition, but people who self-diagnose are mostly whiny hypochondriacs.

Sometimes you hurt more often and tire more easily. That's often called AGING.

While it may be a psychological disorder, that does not make it any less a problem. Think about it.

You cannot just call someone crazy when they come to you for help if you are a healthcare professional. That’s not how it works. What ever the problem the professional has an obligation to get them help which may include a referral.

Fibromyalgia is “fake” as far as being a disease goes, but it’s a made-up disease name that is applied to people who often have pretty severe symptoms.

I don’t think it’s helpful to patients to do this, but the medical community saw enough cases of similar serious symptoms of unknown etiology that they gave it a name so that diagnoses can be tracked and symptoms can be treated. They can’t prescribe drugs willy nilly without a stated reason.

Fibromyalgia has been applied to a variety of other illnesses among a lot of patients before their diseases are better understood. “Chronic fatigue syndrome” was similarly a joke to many people for many years, and now it has a more medical-sounding name—myalgic encephalomyelitis—and its cause may be variable but it has been closely associated by now with Epstein-Barr and other viruses.

Pay attention to the conversations about COVID. To date, a HUGE share of the diagnosed cases of COVID-19 are not considered “recovered,” in some cases even months later. Some researchers and clinicians are now worried that a novel coronavirus infection may cause lasting, chronic illnesses among some people because of damage done to the immune system. Fibromyalgia may be a similar phenomenon.

It’s strange to me...I have seen a lot of posters on this site state that Republicans are generally unsympathetic people who do not care about any hardship until they experience it themselves—e.g., Cheney warming to gay issues because of his daughter, Nancy Reagan supporting applied stem cell research after Ronnie’s Alzheimer’s. Yet I have seen a lot of threads here that apply the same cold, inhumane viewpoint to people who have chronic fatigue, fibromyalgia and Lyme disease.

It is very conveniently one of those "ailments" that really does not have a diagnostic test for, it is all about what they tell you. Many of these people are just depressed, one of the "treatments" they do is give a script of Cymbalta which is an anti-depressant.

This may tell you something.

Check with Mayo's, the Cleveland Clinic, Harvard, and the National Institutes of Health. And, no, I don't have it. I just prefer to have a little knowledge so that I don't draw unfair conclusions.

Firbomyalgia is not 'fake' but it along with chorinic fatigue syndrome / myalgic encephalomyelitis are not well understood and can be general catch alls for chronic symptoms that don't have a clear underlying cause. People who say they are fake or all in people's heads or the sign of a personality disorder are wrong. They are easy diagnoses for people with personality disorders or a tendency for hyponchondria to latch onto but the converse isn't true - that having that dx means you are attention seeking or a hypochondriac. They seem to often develop after a serious stressors on the body (cancer, autoimmune disorders, trauma, serious illnesses, chronic conditions). They are almost like the body is burnt out from the fight it just put up and these vague symptoms remain.

I too thought it was not really real until it happened to me. I developed an autoimmune disorder that led to chronic vague symptoms that were diagnosed as both Fibro and CFS/ME by rheumatologists at different times. The pain in my body was like nothing I had ever experienced before or after. The fatigue and cognitive cog was completely debilitating. I had been healthy and fit until the autoimmune disorder appeared in my thirties. The next seven years were hell. Thankfully I had a good medical team who didn't write me off or think it was all in my head or mental illness. I tried anti-depressants three times because I wanted to try everything I could think of to see if anything would make it better and my doctor was on board. They did nothing because it wasn't a mental illness. I spent time on Fibro and CFS/ ME discussion boards back then and while there were a few who seemed to enjoy the attention, the vast majority were just people like me. Desperate to find anything to feel better and to get back to normal life. Most seemed to have a precipitating illness or injury or issue and their bodies just couldn't fully recover. Thankfully for me, over time most of my symptoms have slowly decreased and as long as I live very carefully, I am probably 80% back to being well. Overall, I would say I can do about 60% of what I did before I got sick at all but I have learned to accept my new normal and I am a decade older. Knowing what that pain felt like and how incredibly awful it was to have a body that just let me down over and over leaves me with a constant dread that something else might trigger it again.

I would caution judging others without having walked in their shoes. It is very easy to be dismissive of something you have never experienced.

Thank you R32. I wrote something similar at R28, and I also sadly only learned the hard way.

I had odd, erratic health issues throughout my 30s and then suddenly in my early 30s, doctors thought I might have MS or even ALS. Tests didn’t show evidence of either. I *did* have some profound psychiatric and cognitive problems, as well, which are typical of multiple sclerosis.

I was not diagnosed with fibromyalgia, but it was mentioned several times as I made my way through a dozen specialists. I did end up seeing a psychiatrist. She loaded me up on psych medications immediately. They made me feel less depressed and in some ways less anxious, but they seriously exacerbated my physical health problems.

Long story short, I was diagnosed with Lyme disease again. I had it when I was 19 years old. And the best anyone can guess, that infection either was not fully cured or else I became re-infected at some point without knowing it. Untreated Lyme, like untreated syphilis, attacks the nervous system and the joints and skin and organs. It can also cause neuropsychiatric problems similar to those of syphilis.

I took what is regarded as antimicrobial chemotherapy—three different antibiotics in combination, with adjuncts such as an antifungal and an antimalarial—for a couple of years, and almost all my neurological problems, including my cognitive problems and even my social anxiety went away. Just gone. It’s insane. Literally the only psychiatric medication that ever really worked for me was antibiotics.

I had some lingering major problems, including severe fatigue and all sorts of allergic responses. It turns out I also have mast cell activation syndrome, an allergic disorder that can be life threatening and which can result from Lyme disease, most likely because the Lyme bacteria confuse the immune system response and catalyze a chronic immune system disorder. I have to take high doses of antihistamines, and those are the only medications I take.

All of this is unusual and certainly does not fall into the ear infection/sinus infection/bronchial infection/STD/cancer paradigm we are used to, but these are all very real illnesses that are poorly understood. Doctors don’t understand them and doctors, who in many cases are also small business entrepreneurs with tons of paperwork, do not have time to be medical detectives. And so patients end up marginalized and maligned.

It happened to AIDS patients early on, too, and people should realize that whether we are talking about syphilis or AIDS or MS or Lyme, many physical illnesses actually cause profound mental illnesses. Sometimes when people have a serious mental illness, the symptoms of the mental illness are symptoms of a physical problem and not the other way around. This is commonly know with respect to syphilis, and it is well known among doctors at least with respect to multiple sclerosis. But there is a great deal of prejudice among medical practice and toward people with certain illnesses by the general public.

R33. I think you bring up another really good point. Mental illness is often stigmatized as just being psychological but in reality it is very much physiological as well and connected to the body and physical health. I can also say that having a chronic illness that limited my functioning so severely was very depressing. I am not sure I ever would have met the criteria for clinical depression but certainly my mood and overall mental health were significantly impacted. And there is a high comorbidity between chronic physical illnesses and mental illnesses. I think we need to look at everything more holistically - as you say sometimes physical illness is how a mental illness presents.

R34 It’s challenging to accept people’s reports of their illnesses, I know, but with some context things are easier to understand.

I had severe social anxiety and panic attacks suddenly in my mid-20s with no explanation. It just happened. I eventually became agoraphobic, at times even afraid to go to the grocery store. I felt like everyone was staring at me in an accusatory or hostile way *even though* I knew objectively that they were not. It’s really hard to explain. But it made me so afraid of people. I later read author Amy Tan’s accounts of hallucinations she had from Lyme disease. She said she got to a point of depending on her dog’s reactions or non-reactions to determine whether what she was seeing or hearing were really there. And then the hallucination went away when she was treated with antibiotics.

It sounds crazy. It doesn’t fit our understanding of mental illness.

Except that it does. As I wrote above, most of us understand that syphilis can cause profound mental illness, including visual and auditory hallucinations, paranoia, panic attacks, social phobias and suicide. And in the case of syphilis, one whopping dose of penicillin cures it in most cases and all symptoms except permanent nerve and organ damage go away forever.

The bacterium that causes Lyme is a type called a spirochete—as is syphilis. These are sophisticated cockscrew-shaped bacteria that can drill their ways deep into bone and tissue and basically eat the fatty coating around nerves and fatty brain tissue. In both cases. But Lyme bacteria have many times more chromosomes than syphilis bacteria do and they can be far more resilient against treatment. The symptoms can be similar but the cure more difficult.

If people understood how similar Lyme and syphilis are etiologically, then they should be able to understand why Lyme is so “weird” and why patients can seem crazy. Many are crazy as a result of the infection and the damage it causes—but they don’t not have a physical illness because they are mentally ill. Mental illness is an effect of the infectious disease.

r13=Susan Harris

How about the Gobloots?

It didn't help me win The Oscar.

It is a socioeconomic construct. It is mostly a "disorder" of non-college educated women in lower socioeconomic brackets.. College educated women with careers rarely if ever suffer from fibromyalgia.

"Conclusion. Fibromyalgia is prevalent in the low socioeconomic status population assisted by the public primary health care system." see Prevalence of fibromyalgia in a low socioeconomic status population

Such statistics speak against a medical disorder and point to a psychosomatic condition that is a response to socioeconomic stressors.

Autoimmune disorders do not affect lower socioeconomic classes at a higher rate than other classes.

Frau here. I had such bad ulcerative colitis and endometriosis as a teen that I had to be operated 2 times. It was all accompanied by inflammation in my joints and intense pain. I tired easily and still do. Though it's been years and I am well, when shit hits the fan in my life, my joints hurt and my stomach looks like I am 9 months pregnant and I could sleep 16 hours straight. The doctors at UCLA put "fibromyalgia" down but my bff is also a doctor and says it's often used when doctors can't quite nail why your body reacts with so much inlfammation and they have to say SOMETHING.

R39 - I have a master's degree and earn over 100K. I have something UCLA doctors called fibromyalgia.

So tender to the touch...

R41 Did you doctor tell you you're tiresome?

FibOfMyAgeGroup

A lot of fraus I meet say they have endometriosis is that the new fibromyalgia?

R41. Well hopefully with your master degree you do understand that anecdotal evidence is not statistically significant. The overwhelming majority of those with fibromyalgia are lower class women.

R46 Fat and poor.

R45 - no because endometrial tissue can be seen through a procedure and burned with laser. I had the procedure done. Endometriosis is not a joke and the pain is brutal, especially if it is on the ovaries.

R46 - you also do understand that you need to qualify "lower class". Are we talking educational level, income bracket (because that is not a qualifier...consider the salary of most teachers), or what exactly?

Most people who suffer from ulcerative colitis like I do are pretty skinny due to the symptoms and usually under 35

R43 = example of low class.

I'm a disability attorney and I have a lot of women contact me who have been diagnosed with fibromyalgia. The pain and the symptoms are real to them. That is all that mattets. They are not consciously lying or exaggerating. The one common thread I see is that they all have a history of some kind of sexual trauma. It's not common for someone to get disability just for fibromyalgia. It seems to often go hand in hand with other rheumatological and/or immunological diagnoses.

Love me some Bunnika, r24.

R45 - endometriosis is real. My sister had it and also had surgery.

R51 Other phantom conditions, you mean?

R51 - exactly. Sometimes the immune system goes into overdrive and the body starts to attack itself leading to pain and inflammation. They don't know what to call it, so they sat fibromyalgia. The question is why are so many Americans suffering from inflammatory diseases? It could be our food or our lifestyle.

I love this image of Fibro Mom’s pain journal. It even has a mug for her to cradle.

Lyrica is approved by the FDA for fibromyalgia. My mother who had bad sciatica could find no relieve from pain until the doctor eventually prescribed her Lyrica and it gave her substantial relief from pain and symptoms. The problem was her health insurance wouldn't cover it for that reason, and she would have trouble affording the $260 a month, so I was paying it for her. Fibromyalgia is a real thing, even if some people who are hypochondriacs are lumped into it.

One drug used to treat it is also used to treat depression, so...

Fibromyalgia is not more prevalent in lower SES. It is across SES. However women who have lower SES tend to receive less health care and have less means to manage their health well so they have more symptoms and poorer functioning. This isn't specific to fibromyalgia - is it common for those who are lower SES to have poorer health and poorer access to health care and poorer quality of life. it isn't isn't unique to women. I know a man who was diagnosed with it at age 75 after a 5 year battle with prostate cancer. The pain he was in from the fibro was horrible.

And many drugs are used for multiple different symptoms and ailments. That Cymbalta works for neuropathic pain means nothing about the cause of fibromyalgia.

It is a fake disease, unlike Morgellons, which is 100% real.

It’s terrible that the news media does nothing to educate the public about actual health and medical science. All they do is health scares of the week.

A variety of drugs that are typically referred to as “antidepressants” also have proven to be effective for pain mitigation by affecting pain receptors in the spine. They interrupt or regulate pain signals. Scientific research is discovering new ways to manage pain besides just NSAIDs and narcotics. Antidepressants and antianxiolytics both affect neurotransmitters and so it stands to reason that they could impact pain signals.

R62. In addition many of the older psychiatric medications were discovered only because they had originally been developed for other purposes but had the side effect of helping depression or mania or other symptoms. There is still a ton of stigma towards mental illness and chronic illness in general. People want to think that if they had something they would be easily able to fix it and if other people haven't fixed it, they must be making it up or wanting to be sick. I had posted above about developing chronic illness in my thirties. I spent the first two years trying to fix it, sure that a remedy was just around the corner...until it never was. It is a hard thing to accept - that you can't do anything to make yourself better and I am sure I had a judgmental attitude as well before it happened to me.

While I don’t necessarily believe there’s a link between depression and fibromyalgia, it seems reasonable to me that someone with fibromyalgia symptoms with no cure and little effective treatment, would naturally become depressed. That doesn’t seem like a mystery to me,

Depression can be more than an emotional state. It can involve depressed/slowed physiological systems and it can be associated with other illnesses. Neuroscience and neurophysiology are not sophisticated enough yet to honestly explain the cause and the effect in most cases; they can only document an association. But demonstrating a link between depression and nerve pain does not suggest that a person “only thinks they have pain,” although this is how many interpret it. We have central nerves—brain and spinal column—and peripheral nerves. You can have extreme hand pain caused by damaging your hand because that involves damaging your peripheral nerves, but you can also have extreme hand pain with no physical damage to the hand because of damage or aggravation to the brain or to the part of the central nerves that emanate from the spine And terminate in the hand.

Our organs are also powered by electricity from nerves. If those nerves are damaged, it could reduce performance of your organs, causing your systems to slow or otherwise malfunction and thereby catalyze a depressive state, even in people who should have every reason to be happy. This is how drugs and alcohol contribute depression: they affect the body, and the body affects the emotions.

Fibromyalgia is a diagnosis when they know something is wrong with the person but havnt been able to figure out what it was. I was treated for fibro years ago with cymbalta, lyrica, and whatever else. I was very sick and dozens of doctors couldn't figure out why. It was a sudden onset of illness that went on for three years.

Lyme disease. Three years in and it turned out to be Lyme disease, along with two co-infections. Thirteen years or so later, tens of thousands of dollars, and I'm still dealing with this cluster fuck of an illness. If it had been caught and treated early I'd probably be fine.

So while I'll say that people with fibro are indeed sick people, I encourage you to continue to dig and find out what the cause of your Fibro is. Fibro is a blanket diagnosis. It's basically your doctor saying listen, we know you're sick, we don't know why, but try this and hopefully it helps. Many people diagnosed with Fibro turned out to have Lyme, it's a fact.

Same R65, discussed above. My treatment worked well for me but it took years. And I discovered I have an allergic disorder most likely caused by the Lyme infection that requires high doses of antihistamines probably for the rest of my life. You might want to get your tryptase level tested and make sure no secondary disease process is adding complexity to your tickborne disease treatment.

The pain is real, but the name for the condition is fake.

By which i mean: It's a psychosomatic condition originating from depression , which does not mean that the people are malingering or can will themselves to be happy. But there is a strong link between the mind and pain (which is what psychosomatic means). Sufferers become furious if you say it's psychosomatic, which they think implies they want to have the pain and even enjoy it; which is not true at all. They cannot help the pain they are in, even if pills for depression (like Cymbalta) hugely alleviate the symptoms.

I couldn't help but notice that the pages of the fibro journal at R56 are blank.

I work in MD office. The majority with the Fibromyalgia Diagnosis seem to share a couple of traits. Always over 40, usually divorced, generally unhappy and mostly sedentary. I personally think they do have pain. I suspect it’s from not moving much and their body is degrading. That shit happens fast if you’ve ever quit the gym before. It’s s garage can diagnosis when everything else has been ruled out.

R67. Pain can be psychosomatic but for many, fibromyalgia it is not psychosomatic at all. It is a real condition that has been researched and is treated as a non psychosomatic condition by rheumatologists and other specialists at well established medical institutes. .

R69. those are the small minority that talk all the time about their fibro and are managed through their GP. They aren't the majority. I was treated by a rheumatologist for mine, as are many others I know. I was a competitive mountain biker that did 24 hour races when I got sick. I was healthy, athletic, lived a very healthy lifestyle, was fit and had a great life.

Fibro is a disease of the mind, namely depression. They give Cymbalta to people with "Fibro" and it helps with the depression, or at least has a placebo effect. People get addicted to Lyrica, that should tell you something, they give it for it's mind numbing effects in hopes that I will help with the crazy. There is major addiction in N Ireland, look that up.

I was prescribed Lyrica once for depression.

It made me irrationally angry.

R72. This has already been discussed. Lyrica is for more than depression. My father was prescribed it. He didn't have depression or fibro. H had pain related to a genetic condition and had pain shooting from his hip to his foot due to a malformation in his back. It is often used as treatment for pain, which is one of the main symptoms of fibro.

Thanks R66. I'll look into that. Aside of chronically feeling like shit, I'm exhausted from dealing with a chronic illness. I've had times where I thought o was back to normal, and it slowly creeps back in. And runs my life again. I've taken enough antibiotics to fill a warehouse, or ten. im treating it again because I'm in constant pain. And no, everybody, I don't take anything for pain, other than the occasional Tramadol. No narcoditcs, no cymbalta etc. I endure it mostly, just hoping I get better. I'm not seeking drugs, just my life back. R66 I'm trying something new, which is found to kill Lyme in a laboratory setting, that seems to be catching on. Disulfiram, which is antabuse. If you're interested, google it. I'm skeptical, but hopeful. Fingers crossed. Good to know someone else here has taken the roller coaster ride through hell, which is lyme.

Tricyclic antidepressants are most commonly used for pain management.

Amitriptyline

Nortriptyline (Pamelor)

Protriptyline (Vivactil)

Doxepin (Silenor)

Imipramine (Tofranil)

Clomipramine (Anafranil)

Desipramine (Norpramin)

... sorry for misspellings, my iPad is glitching and needs to be replaced.

A related recent article.

So many opinions here, above. Yet most people aren’t posting their qualifications for even having an opinion. I wonder why that is?

NIH says there is nothing such as Chronic Lyme disease. I know you hate the truth.

[quote] I am a psychologist and the minute someone mentions they have fibromyalgia, my first though is "personality disorder." And it is usually the case.

I seriously pity your clients who pay for such an ignorant and judgmental quack.

Well R80, I hope you get it. Tell me how living with it after 13 years is.

R79 I’ve written several of the long posts above. I am one of the people who had major health problems that turned out to be caused by tick-borne diseases, and the one who was successfully treated but had an allergic disorder likely triggered by the Lyme infection.

Am I qualified to comment? My experiences are my experiences and I reported them as they occurred. Professionally, I am a writer and editor. I spent the first 10 years of my career working on grants from the National Institute on Drug Abuse, the CDC, The Robert Wood Johnson Foundation and other public and private health organizations and agencies. My job was to read new research on various health and medical issues and write newsletters and booklets that summarized the research for a lay audience. I also know and have discussed some of these issues with a neurologist and neurophysiologist, an immunologist and a couple of infectious disease doctors. I am not a clinician or a scientific researcher.

R83 thank you for being the rational one here :)

[quote] I Am Too Exhausted to Explain How My Fibromyalgia is NOT a Privileged White Woman's Disease.

It's more of a low income white woman's disease.

R82 perhaps a shrink is in order.

R29, You are very wrong. A doctor presses his finger into about a dozen very specific points on your upper back, neck and shoulders. If you experience a sharp pain there's your proof. Most sufferers have had car accidents or work related soft tissue injuries prior to the diagnosis.

That doesn't mean you're bedridden for life although like all those dealing with pain there are good days and bad days. Strongly recommend using topical pain relievers on the specific pain points like icy hot or even better, the Chinese equivalent. Also eat a lot of spicy food and especially Tumeric and curry, natural pain relievers. Hot baths with Epsom salts, jacuzzis, massages, natural salt baths, etc also really help.

Tai Chi, yoga, stretching & some type of aerobic exercises are crucial on a daily basis once you've followed the previous steps.

There's also proof that fibromyalgia runs in families and is inherited.

[quote] The majority with the Fibromyalgia Diagnosis seem to share a couple of traits. Always over 40,

Not me.

[quote] usually divorced,

Not me.

[quote] generally unhappy

Me!

[quote]and mostly sedentary.

ME!!

[quote] the minute someone mentions they have fibromyalgia, my first though is "personality disorder." And it is usually the case.

[bold]ME!!![bold]

R88, I'm not at all sedentary except when I'm recovering from very sore muscles from an exhaustive exercise routine, 7 days a week, a couple of hours per day.

I'm very happy with my life at present. I've also never been divorced.

My cousin who's well under 40, goes hiking with her husband and 2 big dogs every weekend or snow skiing/snowboarding with her 2 little kids, works a full-time job, etc also doesn't fit your negative profile whatsoever. Neither does her still married mother who teaches yoga.

R67 - I don't know about that. I was 17 and very athletic and pretty happy. The only match is that I was forced to quit cross country due to the pain of endometriosis and surgery and, yes, I did hate and feel different going from athlete to zero. I am neither fat, middle aged, overweight or low income. I am 34, work out 5 times a week now that I am better and a journalist working at a very progressive firm in a very urban environment. The fact is doctors at UCLA say there is a problem in the US with women and inflammatory diseases that are uncategorized and my bff (doctor from Stanford) suspects it has to do with several generations raised with food that was filled with hormones and other garbage.

R87 Fucking Frau.

Many doctors are simply short sighted and incompetent, unfortunately.

Here’s a story of a woman who had major issues and a doctor told her it was just seasonal allergies. She went to another doctor who told her it was acid reflux. She felt like she was being seen as a crazy hypochondriac, but she also felt something was wrong. She paid out of pocket for an X-ray and learned she has terminal lung cancer.

I discussed above how I went to over a dozen specialists over many years, annoyed a couple and confounded the rest. I was incredibly discouraged but ultimately I was diagnosed with and successfully treated for Lyme disease and mast cell activation syndrome and my life is almost 100 percent better at 42 than it was at 32.

My mother was extremely ill for a couple of years with severe diarrhea and pain, and every time she went to a doctor or the ER they told her to take Immodium. Her weight dropped to 95 pounds and then 86 at the next check in and then finally 76–when a hospital doctor yelled at my father “for letting it get this far.” But he didn’t; my parents begged for my mom to be admitted to a hospital and tested for everything to figure out what was wrong with her and they refused to admit her for years and told her to take Immodium. Over the course of a month, she was tortured in the hospital. She was diagnosed with and then later un-diagnosed (“false positive”) with C. Difficile, cryptosporidium, and two exotic parasites that she never would have had any way of contracting, never having left the US east coast and not having left her own house for years. She was never given a diagnosis but upon her death doctors said they suspected Crohn’s or ulcerative colitis.

A friend of mine who travels throughout the Middle East for work went to the doctor with breathing trouble in her early 30s and was diagnosed with bronchitis. Soon she was not able to walk to the door without being winded and they discovered she had pneumonia. After weeks or a month or so she was rushed to the hospital; it turned out she had tuberculosis! All that time! One of her lungs was completely willed with fluid and the other had 50 percent capacity.

The point is, a lot of people have serious and severe health problems and busy doctors who have a narrow scope of experience only consider what they already know, and the persistence of a patient who knows something is very wrong with their body can be the difference between life and death.

R14 My mother was the same way with some disputable lower back pain. I was living at home taking care of her and my Dad, who had had surgery. The back pain came and went according to what she wanted the rest of us doing that day.

I took her to task one day and threatened to make a doctor's appointment for her to get a pain shot and that got her to mostly knock it off. Or at least be less obvious.

Mayo Clinic has an entry for "Somatic Symptom Disorder" that sounds an awful lot like fibromyalgia.

The name describes the symptoms not the cause. And If you have a very real problem that’s being lumped in with the psychosomatic problems of passive aggressive hypochondriacs, then you are being done a real disservice.

If I had these symptoms and was told it was fibromyalgia, I’d say keep looking or I’m going elsewhere.

You're wise, R96.

A woman I worked with was diagnosed with “restless leg syndrome” and put on tramadol. I asked her what that is because it sounds like a joke and she described neuralgia/peripheral neuropathic pain in her legs. She later told me the diagnosis was revoked, and then later she was diagnosed with fibromyalgia.

She was not AT ALL the kind of “frau” you would think of, per the messages in this thread. She was a very hardy country gal who was very much a troubleshooter and really didn’t complain, even in my office environment that can be high drama.

She was sick during one of our events. She left and that night sent an email saying her doctor told her she had the flu. And she died from heart failure that night, with the cause of death listed as the flu.

She didn’t even drink alcohol, ever, and she had started doing yoga, meditating etc. I believe absolutely that she had an undiagnosed serious health condition and did not simply die at 55 from flu-related cardiac arrest. I wouldn’t think much about it had she not told me about the nerve pains she had in her legs.

It's a totally real thing that I pretend to have when it's convenient

[quote] R79: So many opinions here, above. Yet most people aren’t posting their qualifications for even having an opinion. I wonder why that is?

I wrote R79, above, not for the people here who are posting about there own experience with illness like r83, but for those posting with certainty about it but who have no personal experience with it. Some people seem to think they are qualified to diagnose others because they have a co-worker who seems insincere. Well, that does not qualify you. Even some health professionals, above, abandon the scientific method and jump to biased conclusions.

I have fibromyalgia. I got it at age 35. I am a male. I had no physical trauma, like a car accident, proceeding it; nor was I ever sexually abused; nor did I suffer from depression. I was a physically active person and ambitious in my career. I continued my employment with it for another 15 years, before I had enough money to retire early.

Most doctors are not trained to detect soft tissue problems. My experience with many doctors is that they’re often certain of the cause of the problem, and yet, they don’t all agree with each other. What does that tell you? That they simply don’t know.

At the beginning, I was thin enough at that age that you could sometimes actually see the muscle knots under my skin. Not so much these days. Deep tissue massage is one of the few things that help me. When I’ve found a massage therapist who is really good, their training is such that they often can identify, just by sight, the exact places that are the most painful.

It took me a long time to accept the diagnosis, because of the stigma associated with it. Because it is generally a woman’s disease (9:1 over men). Because it is incurable. (R96, you don’t get to choose your illnesses). But I finally accepted it, and manage pretty well.

Who heard of fibromyalgia 15 years ago?

Everybody but you apparently, R101

R100 Who diagnosed you? If you get knots in your soft tissue, isn't that a physical symptom they can observe?

Fortunately, this lady (Sherry) from "Hoarding: Buried Alive" is not the face of fibromyalgia. She was probably the meanest person on these hoarding shows.

R101 I was in grad school 15 years ago with a woman who had fibromyalgia.

R103, my Primary Care Physician diagnosed me. I recall that I burst into tears at the time, which I only mention because I never do that. I was just in so much pain and dreaded the idea that it was permanent with little in the way of treatment, plus being subject to ridicule by the general public. I sought out many doctors afterward, seeking a curable solution, and got the diagnosis multiple times, before I accepted it, .

About the knots, many doctors are not trained to diagnose anything based in that. Plus, one brief office visit doesn’t demonstrate that the knots are, essentially, permanent.

Oh, about my massage therapists. There were three in particular who exclaimed out loud when they first touched my back, as my muscles were so unusually tight.

I would say a significant percentage of DLers have it, especially those who spend all day making sure no one posts a thread that has already been posted in the last 10 years. Anybody with that much time on their hands all day must not work for a living lol

I think it’s a legit condition but it has become a diagnostic catch-all for anything physically undiagnosable, so most people roll their eyes. I dealt with a mother/daughter with it who worked from home and there was definitely a personality disorder at play.

It makes it a hell at work for those of us who really need FMLA because we get to deal with HR and managers who are burned out and automatically assume you are one of them, since they can’t ask about specific medical conditions.

It was the trans craze of its day.

"My doctor said I might not need my penis"

A friend of mine was a fibromyalgia doubter, until he was diagnosed with it. Later, he learned that he actually had terminal brain cancer. I think it’s interesting that his doctor thought that fibromyalgia is as serious as terminal brain cancer.

People have unexplained pain. Just because we don’t have the same pain doesn’t mean we should just dismiss them. Especially if we’re men, we have no idea was like to be on the rag.

R107 I'm sure you're right. Real symptoms, fake disease.

Mayo clinic also has an entry for fibromyalgia, R94. I'm sure they have must have one for cognitive impairment too, which you might want to look into.

You normally don't have to passionately defend the existence of a disease for which there is no physical evidence. I smell pseudoscience.

They have a diet program too R112, designed with bariatric patients in mind. You should look into it.

R113, really?

One doesn’t normally assert that someone else’ illness doesn’t exist. That’s why there up is a “defense”. It’s to address the “offense”.

In addition, there actually is physical evidence. A person who is trained to detect tight muscles (that’s a simplification) can tell the difference between a person who has fibromyalgia and a person who does not.

R114 Don’t bother arguing. You are arguing with a troll who will not relent because he gets all his pleasure from offending or hurting vulnerable people anonymously. Just realize it’s the same personality type as Trump and give up the argument. There is no point. As long as you are bothered, he will believe he has won.

R113: It was only a decade or so ago that they discovered that ulcers were not caused by stress, but were actually caused by a bacteria. We shouldn’t expect that every illness have an identifiable cause, like a bacteria or virus. We’re still learning.

I think someone up above had something particularly smart to write, paraphrased: it doesn’t matter what the cause is. I still have to deal with it, regardless. I can’t wish it away.

It is a real mental illness.

R115 I just think fibromyalgia isn't a real disease. You probably all have other disorders that share similar pain symptoms.

It is suspect as hell that you all find so much comfort in this diagnosis and cling to it so fiercely, to the point that you flail around flinging insults at people who notice the pattern of behavior.

Somatic Symptom Disorder seems right on the money.

R116 Back in the 1950s, some scientists speculated that cancers were caused by infectious bacteria or viruses. By the 80s, scientists understood that cancers are human cells that grow out of control. Now...scientists know some cancers, such as cervical cancer, are caused or at least catalyzed by viruses, and some suspect that most or all cancers probably have an infectious underlying cause.

“Science” has become as dogmatic as religions, and scientists as beyond criticism as priests once were. The reality is that a huge amount of what we believe is absolute fact today will be looked back on as folly within 15-20 years. We should all be humble about what we “know,” because even fundamental understandings can be totally turned on their heads by further scientific inquiry.

R118 - yeah but you were the same guy who said endometriosis is not real. That is something that can be seen and actually operated.

R120 ...I'm not.

R113 is clearly and passionately projecting.

The mind/body division is a false dichotomy. They can’t be separated.

Also, "...a variety of neurotransmitter and neuroendocrine disturbances. These include reduced levels of biogenic amines, increased concentrations of excitatory neurotransmitters, including substance P, and dysregulation of the hypothalamic-pituitary-adrenal axis. A unifying hypothesis is that FM results from sensitization of the central nervous system. Establishing diagnosis and evaluating effects of therapy in patients with FM may be difficult because of the multifaceted nature of the syndrome and overlap with other chronically painful conditions.

[quote]The mind/body division is a false dichotomy. They can’t be separated.

Well I never in all my life!

Fraubromyalgia

Fibromyalgia is low brow and middle class. I like a chic woman to have Morgellons, and maybe nymphomania.