The forgotten minority

Thanks to my Research Guru John for turning this one up for me.  I can relate to the situations of the men in the article, BTDT, but as with most autoimmune diseases, fibro strikes women much more often than men, and the male patients tend to get lost in the big picture. (Just as, in the early days of CFS, pronouncements calling patients "just menopausal women" ignored the fact that there were a lot of men with it, too.)

Men and Fibromyalgia

By Bob Hall

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Michael J. Fox became a "one of a kind" type of guy because he stepped forward, and let the world know about his disease. He gained national attention, and received national compassion and sympathy because of his plight with disease. I applaud him for his courage to "take a stand" and bring awareness to a disease, and to get attention for Parkinson's and much needed research. But, he is a celebrity, and his job was fairly easy.

What about Jim? Jim has fibromyalgia. He is not famous, and not many people will know anything about the disease he struggles with on a day-to-day basis. Jim lives in constant pain, he fears losing his wife because he is no longer capable of "being a man." He fears his grandchildren fading away from him, because "Grandpa" can't do "Grandpa" things any more. His friends don't call anymore because he has been "sick" one time too many.

What about Chuck? Chuck has fibromyalgia. He is not famous, and not many people will know of his disease either. Chuck's wife has already left him. His doctors still think it is all in his head, and there is really nothing wrong with him. He suffered from a car accident, and as a result he ended up with a diagnosis of fibromyalgia. The "invisible disease." One of his doctors treats him like he is nothing more than a drug addict just wanting drugs. Yes, he does want drugs. He wants treatment for his chronic pain.

What about Dave? Dave has fibromyalgia too. Dave is one of those that people will never know he has fibromyalgia. Dave has trouble showing his pain, his feelings, and is afraid people will shun him because of his disease. He is afraid to let anyone know he is suffering. Dave is known to do things, to go overboard, and end up in bed for days, just to keep anyone from knowing he is in pain. Dave has a lot of anger, a lot of frustration, and a lot of pain.

What about Joe? Joe suffers from fibromyalgia. Joe is a trooper when it comes to his pain and disease. He never gives up, encourages others with the disease, and rarely displays a bad attitude. He has his good days, and his bad days, but is ever hopeful for a cure some day. He has a supportive spouse, and a close-knit family. He did however, lose his job due to the disease, and had to go on disability. Joe is active in his local support group, and is known to help others cope with the disease. Joe is the kind of person you would like to know even if you didn't have fibromyalgia.

What about Greg? Greg has fibromyalgia. His is so severe he is confined to a wheelchair, and rarely gets out of his home. He has very little quality life, and not much to look forward to anymore, just the chronic pain. He suffers now from panic attacks, from irritable bowel syndrome, chronic sleeping disorders, shortness of breath, and several other "cousins" of fibromyalgia. He depends on others to help him on a day-to-day basis. Most of his friends are on the internet, and talk to him from afar, only when he feels up to getting on the computer and chatting.

What about Bill? Bill has fibromyalgia. Bill is still trying to work and hold down a full time job. He is starting to have to call in sick more and more. His boss is putting more and more pressure on him to be on time, and not to call in sick. He really can't help it, as there are days when he just cannot work. His medical bills are mounting, his financial condition is falling, and his family is starting to suffer from his illness. His doctor says he needs to reduce the amount of stress, as stress makes fibromyalgia worse. On his way out of the doctors' office, the receptionist tells him they need a payment. This is a vicious circle. His medication bills are growing daily, along with other financial burdens.

You have just been introduced to a few of the men who frequent the menwithfibro.com website. The names have been changed, but they are all there. There isn't much on the Internet about men dealing with fibromyalgia, and that was the reason www.menwithfibro.com began. It began as a central point for men to come, to share, to learn, and to grow with the disease. Traditionally, more women have the disease than men, but the number of men with fibromyalgia is growing steadily. Part of the reason more men are not diagnosed is that men are just plain stubborn sometimes. And when it comes to going to the doctor, they are VERY stubborn as a general rule.

Men are raised to believe that men don't cry. They are told to "shake it off" and to "take it like a man." Men fix things, men are the hunters, men are supposed to be the breadwinners, the head of the household. Men are inundated with these concepts from a very early age. Showing pain is showing weakness to so many men. Fibromyalgia does not shake off. Fibromyalgia does not give up. It does not stop for anyone, or anything.

Hopefully the www.menwithfibro.com website will be stomping grounds for some of the men with fibro, and for women as well. The site is not just for men, but devoted primarily to men and how they choose to deal with fibromyalgia. Anyone is welcome to the site.

The site has a forum and the response there has been well received. Dr. Michael McNett from the Paragon Clinic in Chicago hosts one of the forums and discusses fibromyalgia openly. He has been a great asset and has been well received by all of the people coming to the sites. There is also a chat program available on the site.

The response to the website has been very good. Many say it is something that has been needed for a long time. Maybe it will be like a "Cheers" on the internet - a stopping place for men and women to grow as individuals, and share one with another. That is our goal and hope.

Since we're on the subject of men, I know my fellow activist Steve would never forgive me if I didn't point out his pet peeve -- NIH has CFS filed under "women's health" rather than "neurology".  Steve is heartily offended by being called a woman; I don't mind that, but I do suspect CFS would be given more research funding if it were recognized as a neurological condition and not some inherent problem of female hormones.

Now, if only we could have someone the calibre of Michael J. Fox step forward to put a face on CFS/fibro....

Tags: CFS, men, fibromyalgia, men with fibro, disability

Another lookalike (that's not CFS)

http://www.signonsandiego.com/uniontrib/20070220/news_lz1c20fluids.html

Even mild dehydration, a loss of just 1 percent to 2 percent of body weight, can produce symptoms including weakness, dizziness, fatigue, headache, and reduction in mental and physical performance.  
 
“The idea of drinking water is really essential to maintain normal good health,” says Dr. James Dunford, emergency room physician with UCSD Medical Center and medical director of San Diego's EMS system. “Water is needed to help preserve body functions and vital organs and maintain blood pressure. It brings nutrients to the cells and washes away the toxins. Water is the most important molecule we commonly take for granted.”  
 

In one of my CFS books, it comments that you can tell how bad a person's CFS is by the size of their water bottle.  Well, yes and no.  I do drink a lot of water when I'm running a fever or when we're having triple digit temperatures, but other than that, I don't drink huge amounts of water.  I usually sip at the same 20-ounce bottle all day (plus beverages with meals). 

This water-bottle theory may be another of those lookalike misdiagnoses, where people think they have CFS, but what they really have is "weakness, dizziness, fatigue, headache, and reduction in mental and physical performance" from dehydration.  As with every other lookalike condition, there are symptoms and test results that differentiate it from CFS. 

Unfortunately, over the past 20 years, the definition of CFS has been watered down to include anyone with fatigue for any reason.  Some of this was done by groups with ulterior motives (e.g., psychologists who saw a chance for profit in confusing CFS with an entirely different condition with a similar name and thus persuading the government to mandate years of psychotherapy for Disability recipients).  Some of it was done by people who don't understand that there's more to Chronic Fatigue Syndrome than chronic fatigue. 

As a result, there are a lot of doctors out there who apply the CFS label to people who don't have CFS, who never had CFS, who the experts would tell "you don't have CFS", who the neurological and immune system tests would prove don't have CFS.

Do yourself a favor -- if you don't have the symptoms described by the original CFS definition (such as fever, swollen lymph glands, and sore throat), hie thee to a CFS expert and get the right diagnosis.  If you have something as simple as dehydration, it's much easier to get back to feeling well than if you actually have CFS.

On the other hand, while you're waiting for that appointment, do your own First Aid experiments.  When I started fainting right after starting a new medication, by the time I went to the doctor, I was already able to tell him that I'd tried eating chocolate, proving it wasn't hypoglycemia, and I'd tried drinking extra water, proving it wasn't dehydration.  That ruled out two of the possibilities he was going to suggest.  If you feel much better after drinking more water, then you may have fixed the problem without the expense of a specialist appointment.    

Tags: dehydration, CFS, drinking water, misdiagnosis, fatigue, weakness

New Fibromyalgia Research

A Critical Analysis of the Tender Points in Fibromyalgia.   Pain Med. 2007 Mar;8(2):147-156.

Harden RN, Revivo G, Song S, Nampiaparampil D, Golden G, Kirincic M, Houle TT.

Center for Pain Studies, Rehabilitation Institute of Chicago, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.

PMID: 17305686


Objective. To pilot methodologies designed to critically assess the American College of Rheumatology's (ACR) diagnostic criteria for fibromyalgia.

Design. Prospective, psychophysical testing.

Setting. An urban teaching hospital.

Subjects. Twenty-five patients with fibromyalgia and 31 healthy controls (convenience sample).

Interventions. Pressure pain threshold was determined at the 18 ACR tender points and five sham points using an algometer (dolorimeter).

Outcome Measures. The patients "algometric total scores" (sums of the patients' average pain thresholds at the 18 tender points) were derived, as well as pain thresholds across sham points.

Results. The "algometric total score" could differentiate patients with fibromyalgia from normals with an accuracy of 85.7% (P < 0.001). Even a single tender point had a diagnostic accuracy between 75% and 89%. Although fibromyalgics had less pain across sham points than across ACR tender points, sham points also could be used for diagnosis (85.7%; Ps < 0.001). Hierarchical cluster analysis showed that three points could be used for a classification accuracy equivalent to the use of all 18 points

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There are still doctors who believe that fibro is a "wastebasket diagnosis", i.e., if you don't know what else to call it, diagnose fibro.  This research proves that there is a very accurate way to diagnose fibro, so any doctor who's just lumping all pain into that diagnosis is misdiagnosing at least some of his patients.

If your doctor has diagnosed fibro without testing the 18 tender points, ask him why not done that test.  If he has no clue what you're talking about, visit Co-Cure.org and find a doctor in your area who does know that there's a specific test for it.

If your doctor, like one of mine, diagnosed fibro when you had 11/18 tender points and then tried to un-diagnose it when you fell slightly below that, you should know that the 11/18 points are only required for an initial diagnosis.  The diagnostic criteria recognized that there were times when you might not hurt as much.  Less than a year after my doctor tried to claim my fibro diagnosis was in error because on one particular day I only had 10/18, another doctor got 18/18.  He had a dolorimeter -- a device that measures the amount of pressure being applied.  To make the diagnosis, you need to feel pain at 10 pounds or less of pressure.  On some spots, I could barely take 1.5 pounds before tears formed.  He had absolutely no doubt that I had fibro, and, in fact, a pretty bad case of it.

This new research makes it clear that it's not necessary to have 11/18 points for a diagnosis.  The diagnosis can be made just as accurately with 3/18, and nearly as accurately with only one.

Be aware, also, that fibro-like symptoms can result from sleep deprivation.  At the worst of my sleeplessness, I had pain all over, all the time.  I found out that you can test a Sleep Number bed for 30 nights and return it owing only the delivery fee.  After one week, the pain was greatly reduced. 

The tender points now hurt only when someone actually presses on them.  While this did not take away my fibro diagnosis, it did make day-to-day life more bearable.

Tags: fibromyalgia, research, tender points

What does it mean?

What does it mean?

What does it mean when anti-depressants make a CFS patient sicker but have no positive effect? Clearly, it means that CFS is not the same thing as depression.

What does it mean when the only medications that have shown uniformly positive results in research are anti-viral medications? Clearly, it means that CFS is not the same thing as depression.

What does it mean when a patient who asked for sleeping pills and pain pills and was given only anti-depressants gets worse on anti-depressants, but improves noticeably when finally given sleeping pills and pain pills? Clearly, it means that the patient has CFS, not depression.

It also means that doctors who were entrusted with treating the patient either didn't know or didn't care that their diagnosis and treatment were wrong. Research proved anti-depressants useless for CFS years ago. My doctors apparently had never read that research and were resistant to me telling them what I knew.

Instead of learning from the numerous CFS patients who report that anti-depressants don't help, a lot of doctors blame them for being difficult patients, instead of admitting the real problem is the doctors giving the wrong prescriptions.

CFS has some symptoms in common with depression. It has some symptoms in common with hypothyroid. It has some symptoms in common with AIDS. It has some symptoms in common with MS. But that does not mean that it is the same disease as any of those, because it also has symptoms that are not compatible with those diseases.  Symptoms that one of my doctors said "don't make sense", because he couldn't fit them into the rubric of depression, and didn't recognize as being those additional symptoms that prove it's CFS instead. He simply assumed that I was confused and giving him bad information, instead of changing his diagnosis to fit the symptoms.

Had I received sleeping pills and pain pills when I first asked for them, instead of being wrongly prescribed anti-depressants, the odds are that I would have returned to work in a few months. Instead, 7 years later, I'm still not able to work full-time, and have been told I will never be able to work full-time.

Doctors will never admit it, but they don't always know everything. Sometimes they make mistakes. Sometimes they make tragic mistakes.

If you're not improving despite following doctor's orders, it means the problem is with the doctor, not with you.  Don't let any doctor call you a "non-compliant patient" because he assumes you're not improving because you're not taking the pills. If the doctor blames you for not getting better, either stand up to the doctor and tell him he's the problem, or just go find another doctor who takes a different approach.

I didn't improve at all until I got away from the doctors with the fixation on anti-depressants, to someone who was open-minded enough to consider that if anti-depressants were making me sicker, then maybe he should try something that wasn't an anti-depressant. The sleeping pills helped, which the anti-depressants didn't.

CFS is a difficult illness for both doctor and patient. Doctors like to see miracle cures and feel ineffective if the patient doesn't recover quickly. I've been told that it takes at least as long to recuperate as it did to deteriorate. If you have not slept well for ten years, it will take ten years to erase the sleep deficit. So, every month that you're taking a prescription that doesn't help adds another month to your recovery.  The doctor who expects that after half a dozen unhelpful prescriptions you'll suddenly bounce back to perfect health after one week on something that helps is being overoptimistic.

I'm improving slowly, now that I have the right pills, but any doctor who expects me to leap out of bed, go on a 10-mile hike this afternoon, and head back to work first thing Monday morning is clearly uninformed.

CFS is not a mental illness where a few days of pills can re-adjust abnormal chemistry and switch someone from extremely impaired to essentially normal. CFS is a physical illness where the body needs time to heal. Years of sleepless nights had left me with essentially no immune system. It took months of being on sleeping pills before my immune system kicked in again, and then it took 6 months of a 101 fever before the CFS virus was under control again.  There are objective tests that, if they had been done, would have proven that in January of that year my immune system was far less functional than it was by December.

I didn't need a blood test to tell me that: one winter, I was horizontal all winter with sinus problems, and the next winter had hardly any difficulty with my sinuses at all. The following winter, without the experimental sleeping pills, I was not sleeping well, but was taking CFS/Fibro Formula (www.DrRodger.com) which kept my immune system functioning.

Tags: CFS, anti-depressant, sleeping, pain, immune system, blood test

Summary of a Lecture by Dr. Paul Cheney, MD, PhD May 7, 1998
The National CFIDS Foundation
103 Aletha Rd, Needham Ma 02492
(781) 449-3535 Fax (781) 449-8606 PATHOPHYSIOLOGY OF CFIDS

CFIDS is a subset of a larger group of diseases, post viral syndrome or post infectious disease. Similar disease syndromes from the past are the following:
Great Britain in the '50s - a virus like polio which was later called ME, myalgic encephalitis. This was linked to an enterovirus, a polio-like virus.
You can read the rest at http://www.ncf-net.org/conference/CheneyLecture.htm

Activity limits - types of exercise
Aerobic is BAD. It actually kills mitochondria causing permanent damage
Anaerobic is GOOD. You can lift weights, stretch, isometrics, anything you can do in 10 sec.
This has been known for decades among CFS specialists, yet just a few years ago, rheumatologists were telling me to exercise my way back to health by walking. Dr. Cheney says walking is bad for CFS, and my own experience proved it.

:)

A fellow activist has notified me that I've been noticed.

The National CFIDS Foundation Forum, Media Watch section, has noted -- and quoted -- two published letters that I wrote.

It's not where I expected to be lauded when I started my career of political activism decades ago.  And although it's not the path to the White House, I'll take it.  Life is what happens when you're making other plans, and I had to adapt when this damned disease made it clear that I was not going to be the first female president.  What I will be is a "name" in the arena that fate forced on me.

Tags: CFS, activism, politics, props, published, writing

Damned if you do, damned if you don't, Part 2

Once again, I have found a medication that helps my symptoms, but does so in a way that makes it impossible for me to seek outside employment.

My new pain pills are a godsend.  Except that even backing them up to an hour or two before bedtime, they're still making me sleep till at least 9 AM.  Since it takes a while to get my muscles moving in the morning, and it takes me quite a while to commute anywhere on the bus, that means that I could not possibly take a job that starts before 11 AM -- noon if I need to go somewhere other than downtown. 

Most office jobs here start at 8 or 8:30, so if I'm not awake till 9, I couldn't even take a job across the street and get there on time.

I went through this with the experimental sleeping pills, too.  Even if I took them at 5 PM, the disabling side effects lasted till noon.  They put me to sleep within 15-20 minutes, so I couldn't have taken them earlier.  BTDT with the first sleep aid I was given in 1988 -- I backed them up so far that I was taking them at work, which resulted in Vickey having to make sure I got off the bus at the right stop, and pointing me in the direction of home (fortunately, I only had to walk in a straight line to get there).  Same thing with those, I was non-functional till noon even taking them at 4:45 PM.

Unfortunately, the Disability judge seems unable to process the notion that my doctor preaches with every RX: "all medication has side effects".  He can't conceive of a medication that makes you worse.  Just pop a pill and get back to work; don't make excuses that it's causing new problems.

But this is actually fairly common for CFS patients.  CFS affects your metabolism, so medications that rely on being metabolized at a certain speed don't work properly.  That results in unusual side effects.  As a result, many CFS patients are unable to take any prescription medication, which leads to the erroneous conclusion that there can't be much wrong with them since they're not taking a boatload of prescriptions -- when I went for my first SSDI exam, some people had a grocery bag full of prescription bottles.  I had one prescription (not even for CFS) and a bottle of vitamins; anything else caused me problems or simply didn't work at all.

This is yet another way that the experts are able to sort out true CFS from some of the lookalikes: weird reactions to medications are common in CFS but rare in the others.  But to the average doctor (or judge) who is not familiar with CFS, the notion that you cannot take medication sounds too bizarre to be true.

Tags: CFS, sleep, prescription, adverse reaction, medication, work