Friday, January 18, 2008

Fibromyalgia

Fibromyalgia is a diagnosis in search of disease. It is descriptive of symptoms that vary from person to person. Doctors who even acknowledge the existence of fibromyalgia give the diagnosis as a last resort. To me, the diagnosis just means that the cause of the problems haven't been found.

Now a new drug to treat this ailment has been approved by the FDA. But to treat what? This is the heart of the controversy:

For patient advocacy groups and doctors who specialize in fibromyalgia, the Lyrica approval is a milestone. They say they hope Lyrica and two other drugs that may be approved this year will legitimize fibromyalgia, just as Prozac brought depression into the mainstream.

But other doctors — including the one who wrote the 1990 paper that defined fibromyalgia but who has since changed his mind — say that the disease does not exist and that Lyrica and the other drugs will be taken by millions of people who do not need them.

In some respects, the argument doesn't matter. The pain and symptoms are real enough. The question is what to do to help the patients. Often diet, exercise, and righting sleep problems can cure the problem. One of my first patients had "fibromyalgia". The cause was two-fold, but it took months of hunting to find the problems. First, she had banned pesticides from the 70s that had been seeping into their house. They removed that. Second, her husband snored something fierce and she hadn't slept for more than two hours in a row for over fifteen years. The latter problem was not something either of us thought of right from the beginning, but actually sleeping did more to reverse her symptoms than anything.

Here's my fibromyalgia protocol:
  1. No naps.
  2. No caffeine.
  3. Set bed time.
  4. Set bed time ritual.
  5. Set wake-up time.
  6. Light aerobic exercise for no more than 15 minutes around 3-4 p.m. (no later)
  7. Lots of water.
  8. Fresh diet: fruits, veggies, meat, light on carbs.
  9. Testing for food allergies.
  10. Testing for sub-clinical virus/bacteria infection.
  11. Support the immune system.
  12. Support other weak systems (right the hormones, if that's a problem).
There is no one treatment plan for fibromyalgia. There is no magic treatment plan. Often, the woman's health has deteriorated over decades. She has either been malnourished or had a virus she never recovered from or some other chronic stressor has chipped away at her health. Building back the body, and then psychologically getting congruent with the healing is often a long-term proposition.

With fibromyalgia, the woman has often felt crummy for years and years and just can't imagine not feeling bad. She doesn't remember what healthy felt like. She spends her days feeling the pain and that exacerbates the pain and further sensitizes her to it. It's a vicious cycle. She has also been dismissed by a multitude of doctors. She may end up in pain management. She may end up in the psychiatrist's office. And, she might need both, but she feels that her history and story haven't been honored.

With many fibromyalgia sufferers, there is often an underlying event that precipitates the episode. It takes some detective work to get to it. Sometimes the "cause" is never found but with enough lifestyle changes, the syndrome can be managed. Anecdotally, I've found that many fibromyalgia sufferers have suffered childhood traumas such as abuse, sexual abuse or something similar. This is not so strange. One of the history questions for Junior Rheumatoid Arthritis is whether the child has an alcoholic parent. Very often, he or she does. I have yet to work with a fibromyalgia patient who doesn't have an emotional component to the syndrome.

These ladies, and some men, need encouragement and support. They are, without fail, sensitive souls who I believe "absorb" the pain around them. Helping them to create boundaries both in their relationships and for their own psychological safety is paramount to future health. It is a frustrating disease and the people who endure the pain experience real suffering.

So, while I believe that fibromyalgia is a bogus diagnosis and shouldn't be masked with some new drug sure to score pharmaceutical companies money, I believe that these patients should be taken seriously. Something is wrong. That something needs to be found. And in these days of managed care, rushed appointments and overtaxed doctors, patients are often dismissed as crazy. It's just easier than admitting that the doctor is baffled.

10 comments:

repsales said...

As someone who was (I believe) mis-diagnosed with fibromyalgia five years ago, it is the diagnosis of choice of doctors who have patients who say "I feel terrible". If the symptoms persist long-term, they use a bogus (my belief) 17 point test and then pronounce you as having "fibromyalgia".

Remember the "Yuppie Flu" of the 70's and 80's? Haven't heard the term lately have you? That because a doctor in about 1990 decided he needed a more medical sounding name to label the condition in a paper he was about to present to an AMA meeting. the term "fibromyalgia" fit the clinical symptoms and conditions thus a new illness was born. "The Yuppie Flu" became fibromyalgia.

Fibromyalgia cannot be seen in a microscope nor does any biological test exist for it. A doctor asks if you hurt in at least 12 of 17 places (joints mostly) then says you have fibromyalgia. Well, anyone who feels terrible "all over" is likely to hurt in many places including at least 12 of those 17.

Doctors love the diagnosis as they can tell their patient "there is no cure and no real treatment. You can only try to treat symptoms". They say "join a local fibromyalgia support group". This clears their waiting room of the chronic sufferers of which the doctors have no answers plus they get to mark down that they DID diagnose a person's illness!

In almost every case if the patient does not accept this slow death sentence, they keep looking and eventually find what is actually affecting their autoimmune system. Most often it is Lyme. But also everything from various strains of herpes to MS to leukemia to AIDS.

Doctors who diagnose such illnesses are hard to find. Personally, I don't believe "fibromyalgia" exists. It is a word given to literally hundreds of difficult to diagnose illnesses. But it's a favored diagnosis for a doctor because no other doctor can prove them wrong and the patient stops coming in every month with the same complaint!

Most doctors, in fact, do not want to tell you "it's in your head" or say "I have no idea". Although they may refer you to a specialist who will say you have fibromyalgia. Most ISD's (immune system disorders) can be tested for. But it takes a very special doctor to know which tests and which possible illnesses to test for. Even with that, both the tests and the treatments are very controversial. Mostly because of money. An aggressive treatment of Lyme can cost over $50,000 and involve many months of continuous use of antibiotics. That alone has resulted in dozens of doctors losing their licenses to practice (for "over prescribing" antibiotics but it's really the money to the insurance companies).

ISD's is the next pandemic and, unlike AIDS, is not life style dependent. It can affect anyone. It is being swept under the rug as long as possible.

Now that president Bush has Lyme disease, perhaps truth and common sense will take over instead of politics and doctors, government agencies and insurance companies each with their own agendas unilaterally setting the standards. But maybe not. He was "treated" and quickly pronounced as being "completely cured". That does not happen with Lyme. He will have it for life. Just like with AIDS, it will be recognized only when millions have the illness and medical science has to pay attention.

Lyrica was first marketed as an anti-depressant but sales were low. Doctors reported patients who also suffered from diabetic pain were receiving much pain relief. So much so that the manufacturer resubmitted Lyrica for approval as a pain medication. They requested approval for all types of nerve pain including "fibromyalgia".

Lyrica does work but read about it on many Web sites. Not just the manufacturer's. It can be very addictive and does have side effects. If your immune system is already compromised, the side effects can be significant. For most, Lyrica becomes a life-long drug. Getting off of it is most difficult. Quitting smoking times ten as an example.

The entire medical field of immune system orders is still in the stone age of medicine. There are thousands of factors that interact. It is so complex that few doctors venture into the field. There's a good possibility that, with a few hours of reading on the Internet, you will know more than most doctors do about ISD's. Lyrica is a serious drug. It is not "take two aspirin". The same with other drugs prescribed for ISD's. It apparently does help with some people although I was unable to tolerate more than two days of side-effects. Whatever you take or do, read for HOURS.

You must become your own "patient's advocate". Doctors have thousands of illnesses to diagnose and treat for many medical problems. ISD's are WAY down the list. Read Web sites such as www.lymenet.org and many others. Learn from the experiences of others. Do not depend solely on your doctor. Nor what you read on just a few Web sites. Read, read, read.

Anonymous said...

Remember the trendy bogus diagnosis of the Victorian Era?

"Hysteria (TM)" -- whose cure-all treatment was Hysterectomy.

Hailey said...

I am also one of many people suffered much pain of Fibromyalgia. I went from doctor to doctor to look for answers regarding my condition. It's really difficult to lead a normal life having this kind of illness.

I just want to give additional helpful information for all fibromyalgia sufferers.

Fibromyalgia is a condition where you feel chronic pain in certain parts of your body; it is a muscular pain especially around the joints. There can also be centralized pain felt in the spinal chord, brain, neck shoulders etc. People with fibromyalgia generally complain of pain in the joints, but it actually is the muscles and the tendons around it that cause the pain, it can be excruciating sometimes and can be a continuous throbbing pain. People suffering from Fibromyalgia also show symptoms of depression, sleeplessness, irritable bowel syndrome, stress and many others, which are caused due to the pain.

Here's Rid Fibromyalgia that provides a simple process to helps you eliminate all your symptoms of fibromyalgia and enjoy living your life again. This will provides us the best and most effective solutions on how to rid ourselves from pain.

The Rid Fibromyalgia provides an eBook entitled “Heal the Body” that will teach you the best diet that will allow you to eat your way to wellness, it will also document which vitamins and supplements will target and reverse the illness, how to achieve pain relief through acupuncture, what exercises are safe and will work, and what type of medications may make you sicker, and what will work. This eBook takes a step by step approach in showing you how to rid yourself of the pain naturally so that you can take back your life.

We must know the symptoms of this illness. For us to know what would be the approach we will going to apply. Here's Signs and Symptoms of Fibromyalgia and steps to treat it naturally.

We must also be responsible and aware to the things to gain and cope up with this kind of illness. Eating nutritious food with regular exercise would be result to a better life. Here's Basic Tips in Coping Fibromyalgia.

If we say Fibromyalgia Diet, there is no specific recommended diet for fibromyalgia. But a healthy diet rich in vitamins and minerals can certainly help in coping with the illness. Magnesium rich vegetables are recommended for patient's suffering from fibromyalgia. Here's some information for you to help in Fibromyalgia Diet.

We must also think that vitamins are important for Fibromyalgia sufferers. This will give us additional energy and strength to kept a healthy living. But of course, you must be aware that not all vitamins are effective or directly gives you a good result. Find the best vitamins that would easily give a good response if your taking it. The best thing is your healed and keep your body healthy as possible. Here's The Benefit of Vitamins for us to know why vitamins are important for fibromyalgia sufferers.

Also feel free to view this video Fibromyalgia Help. It really gives good information for those who have Fibromyalgia and encourage not to give up because in every pain your getting through has a good solution in the end.

Here's Rid Fibromyalgia, For free info and helpful articles on fighting fibromyalgia.

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gyantis said...

I have learned much since my fist post. Something even most of the best Lyme doctors don't know or ignore. It has to do with working metabolism (so your body detoxes naturally) and cleaning and unblocking your liver of clear cholesterol crystals. Read about both www.yantis.us/detox.htm and www.yantis.uc/hulda.htm I make zero. Just trying to others get back most of their health. Like me. I still have Lyme plus several co-infections but I am 90% better. You MUST use lots of antibiotics plus other meds but they do nothing unless you first detox and flush your liver, gall bladder, etc. E-mail me for more info gyantis@gmail.com A year ago I was given a month to live and wished I was already dead. Today I have relapsed and have aged 20 years but feel sooooo much better. Lyme is so understudied mostly because of insurance who wants everyone diagnosed with fibromyalgia so they go after doctors. With the recent win in the case of the state of CT versus Dr. Jones it's only a matter of time before AMA, IDSA and others get hammered with lawsuits. They are doing the same thing they did with cigarettes. They KNEW cigarettes can cause cancer but they stalled for 40 years and still are. Every year where the keep the $$ coming in and the officers of cigarette companies stay out of jail. I hope they all do major prison time when they run out all their court appeals.

But these two Web sites explains 90% of the new things I learned with the Hulda flush literally saving my life. gyantis@gmail.com

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christopher said...

I am a mother living with Fibromyalgia and its very rough. I appreciate you taking the time to write this. You can find my full story here Symptoms of Fibro goodluck everyone!