Sunday, June 1, 2008

Fibromyalgia: What is it? How is connected to Lyme?

There seems to have been an epidemic of fibromyalgia in the last 25 years. It is a new disease. When I was in medical school nearly 30 years ago (time flies) Doctors were debating if it was a real disease. It was thought to be a psychiatric issue (psychosomatic). There was a stigma associated with psychosomatic illness. The implication being that the disease was manufactured in the person's head. The definition of psychosomatic shifted. It didn't mean the disease was not real; it simply meant that psychological factors played into the genesis and manifestations of the illness. Fibormyaglia gained acceptance as a bona fide disease. The treatment for it were heavily biased towards the use of anti-depressant medications and psychological therapies such as biofeedback. The disease was thought to be mediated by increased sensitivity of the nervous system to pain. Proper sleep, exercise and nutrition were essential to healing. As the notion of chronic pain became more accepted, there was a proliferation of pain clinics which helped manage the pain of fibromyalgia. Whereas physicians had previously been under fire for prescribing narcotics and contributing to addiction; a new paradigm accused physicians of being insensitive to the issue of suffering associated with chronic pain. Many fibromyialgia patients were now being treated with heavy narcotics to obtain some modicum of relief. The physicians who wrote these prescriptions were no longer dangerous quacks and the patients who took them were no longer addicts. The essential problem remained: No one knew what was actually causing fibromyalgia and no one know how to effective treat or cure it. The numbers afflicted by it grew. It became a rheumatological illness. The traditional illnesses managed by rheumatologists were autoimmune diseases such as rheumatoid arthritis and lupus. This illness was not considered an autoimmune disease. One of the essential hallmarks of the disease was that laboratory tests were normal. There is no evidence of inflammation.

So then what exactly is fibromyalgia. It is defined as a disease of generalized pain, involving muscles and soft tissues. Patients have specific "tender spots" or trigger point which can identified on physical exam. When the physician palpates or presses on these spots with his fingers it elicits tenderness, an expression of pain from the patient. A specific definition requires that a patient have tenderness at 11 of 19 paired tender spots in specific locations. The patients typically have muscle spasms. The soft tissues are hard and stringy feeling. The pain is chronic and severe. These patients invariably complain of chronic fatigue and frequently brain fog. They have a higher rate of other disorders. These include depression and anxiety. They also have more migraines, asthma, interstitial cystitis, irritable bowel syndrome and overlapping chronic fatigue syndrome. Again, standard lab testing is normal. It is a requirement that these patients have normal lab findings and that other disorders have been ruled out. It is essentially a diagnosis of exclusion. In my mind it is not a diagnosis at all. It describes a syndrome. This can be thought of as analogous to congestive heart failure. In medical school we frequently listed CHF as a diagnosis. Our instructors were quick to point out that CHF, congestive heart failure was a syndrome caused by some other disease such as coronary artery disease or prior myocardial infarction (hear attack). There was an underlying reason for it. If this is true, then the treatment of fibromyalgia should require an assessment of what the underlying cause might be. Enter Lyme disease.

Doctors tend to only diagnosis those things which they know. If you are rheumatologist and a patient presents with typical symptoms and physical findings of fibrmylagia the diagnosis is straightforward. The treatment may not be terribly effective, but it is clearly outlined by a body of literature and recommendations. If on the other hand you go to a doctor whose focus is chronic Lyme he may take another tact. He might inquire about other symptoms which comport with his hypothesis. Is there pain and swelling in joints at times? like fingers, wrists and knees? This is not part of "fibromyalgia." Is there numbness and tingling of the extremities? Is the brain fog severe? Are there issues with word retrieval, slow cognitive processing, trouble with concentration and memory loss? Hmm. sounds like chronic Lyme. The examination is expanded beyond palpation of tender spots. Neurological abnormalities are sought. Is there evidence of cranial nerve dysfunction or peripheral neuropathy? Definitely not "just" fibromlagia. Is the lab work really normal? sure the CBC, routine chemistries, sed rate rheumatoid arthritis test and lupus test are all normal. But maybe the CD57 is low. New specific complement markers, C3a and C4a are elevated. Antibodies for Lyme, its c0 -infections and CPN are elevated. Lab tests are not not normal after all.

Fibromyalgia patients may be a subset of chronic Lyme folks. They may have a higher incidence of CPN and gluten sensitivity. They may respond better to certain antibiotics like Amoxicillin, Cipro, Rifampin and Flagyl. Other Lyme patients may respond better to Amoxicillin Doxycycline or Biaxin and Plaquenil. Systemic enzyme therapy may be more beneficial for these patients. Trigger point injections can be very helpful, but offer only temporary relief. Physical therapy, massage therapy and chiropractic manipulation may be useful adjucts. Certainly excercize, especially swimming is beneficial. The FDA approved drug Lyrica is similar to the ant-convulsant neurontin. It may offer some benefit, especially when combined with antidepressants like Cymbalta or Elavil. The real relief only occurs when the underlying disease is discovered and treated. Lyme and CPN must be aggressively be treated with antibiotic protocols. Gluten sensitiviy deserves a serious trial of a gluten free diet. Patients do get better. Admittedly, fibromyalgia pain is more reisistant to improvement than many other Lyme symptoms.

Is there a rationale for the associated illnesses? Here I can propose some theories and conjecture. Asthma and allergies are associated with changes in immune response. There is an elevated IgE response. This may affect the immune system in some way. Certainly allergic reactions are known to be associated with an increased Th2 response of helper T cells and a decrease in the germ killing Th1 response, known to have germ killing affects. So allergies may indirectly promote chronic L-form infection. If patients are genetically predisposed to allergies and asthma, L-forms of Borrelia and Chlamydia may have an easier time to take up residence. Migraines are now recognized to exist on a continuum with muscle contraction tension headaches. Fibromyalgia patients all have a great deal of chronic muscle spasm and tenderness in the muscles near the base of the skull; so it is easy to see why there might be a connection between these two disorders. The high incidence of IBS might dovetail with gluten sensitivity or dysbiosis of the gut, both seen in these patients with high frequency. Interstitial cystitis may correlate with chronic L-form infection which does not show up on routine urine cultures. One can make a case for correlating the various conditions. Dr. Stratton in his CPN lectures connects the dots amongst these disparate conditions.

The bottom line is that many patients are suffering with severe fibromyalgia. Traditional approaches offered by rheumatolgists, orthopedists and pain specialist have been unsatisfactory. The Lyme complex paradigm is a new way of looking at this problematic disorder and offers many patients relief where none had been found before.

1 comment:

Alhi Walker said...

I have test with just a few markers for lyme disease... being treated with antibiotics but only a couple of areas that were severly painful have gotten somewhat better. I am still experiencing severe tenderness and throbbing pain in all my soft tissue areas that were there before my treatment for the lyme. Now im wondering if my doc is going to have an open mind to these issues since he is convinced my whole problem is and was the lyme disease.... what or how do i approach this to help him understand where i am STILL experiencing severe pain! Im in fear of not having what i need to even get out of bed in the morning....much less work and be a productive person. Any advice would be so appreciated... email me at alhiwalk@yahoo.com thank you!