Sunday, May 30, 2010

4 Hours, 3 Doctors and 1 Backache


My husband and I attended a forum for fibromyalgia today. It was a long afternoon (4 hours) even for non-fmers. Despite feeling like an endurance test, it was evident that there were adaptations for fibromites. The chairs were upholstered and much more comfortable than a folding chair. There were refreshments available at all times: water, juice and and cookies. Coffee and tea were noticeably absent. For all you caffeine junkies, coffee is on the naughty list. I can hear the cups crashing to the table right now! Hey, don't shoot the messenger!

There was a lot of information given during the forum - even my husband was feeling overload by the end of the afternoon. I lost my focus during the last 45 minutes and spent the time stretching, pacing and wincing. It's a good thing I brought my hubby along as he caught the information I missed while doing yoga poses at the back of the room. Half way through the forum, I began to develop back and neck pain. I didn't really mind because I knew I would be sharing my information with you and I was willing to 'take one for the team.'

Fibromyalgia was first described in the 1950's. It is thought to be a 'central pain processing disorder.' That's quite a mouthful - I'll stick with fibromyalgia as it's less tiring to say. As most of us already know, there is no cure for fibromyalgia. However, the speakers were optimistic that FM can be controlled so that sufferers can live more normal lives. There is also optimism that we are in the beginning stages of being able to control FM. As recently as a decade ago, diseases such as Rheumatoid Arthritis and AIDs were felt to be relentlessly progressive. Today, they are both better controlled. Don't give up hope.

Dr. Jan Venter, who runs a fibromyalgia clinic in Vancouver, said that every patient is different so he screens his patients to determine which approach will work best for an individual patient. He was enthusiastic about new devices that use a computer to analyze EEG information, in the office, to produce brain activity maps. By analyzing these maps, the clinician can decide what areas are over or under functioning. Treatments can then be offered and follow-up brain mapping can determine if the treatment is improving or worsening the patient's brain activity.

The neurotransmitter serotonin was felt to be very important in FM sufferers. I learned that women normally have significantly lower levels of serotonin which may explain why women are more likely to develop FM.

Two medications have been added to the physician's tool kit in the fight to control FM. Cymbalta (generic name: duloxetine) is an anti-depressant medication that has useful pain reducing effects. This is felt to be due to its effects on increasing serotonin levels in the brain. I have been on Cymbalta for over 2 years and I can personally attest that it has reduced my overall pain levels significantly.

FM sufferers tend to be side-effect prone when using medications. It was explained that if a normal starting dose for Cymbalta might be 60 mg., a person with FM should be started on 30 mg. The idea being to start slow and titrate up, if tolerated.

The other medication discussed was Lyrica, also known by the generic name Pregabulin. It seems to have its effects on modifying the pain signals in the brain. Again, it was suggested to start at a low dose such as 25 mg. at night and increase slowly. Evening is the suggested time for taking Lyrica due to its sedating effects. This can be a help for those with sleep disorders - very common with FM. Ideally, Lyrica is to be taken daily, however, I have tried it and found its side effects to be quite unpleasant. As such, I have delegated it to 'take as needed.'

Exercise was felt to be important in preventing decondtioning in FM sufferers. I know, I know - how can we possibly be expected to exercise when we're exhausted and in pain? Pacing yourself is vital. Finding the right balance between getting enough exercise and overdoing it can be tricky. As with medications, it is suggested to start off slowly and increase with time. Exercises that are beneficial for FM sufferers include walking, swimming, riding stationary bicycles, yoga and Tai Chi.

Improving your sleep is important. Some people with FM may have sleep apnea and not realize it, so it is important to rule that out. Speak to your doctor if your suspect you might have this condition.

Recent research suggests that FM sufferers may have a problem with their mitochondria. These small structures are the energy producers inside the body's cells. Some of the fatigue in FM may be related to the mitochondria becoming less efficient. Acetyl-L carnitine (or ALCAR, is a dietary supplement and occurs naturally in animals and plants) is said to help 'clean up' the mitochondria by getting rid of free radicals. In Canada, it is only available by prescription. However, this is not the case in the United States where it is easier to obtain. The doctor stressed that a little can help with fatigue but too much can cause the person to become hypervigilant and less relaxed.

Finally, it was suggested that people with FM change their mindset from being 'pain-driven' to 'life-driven.' The pain won't go away but by focusing on enjoying life, the pain can be pushed into the background. Easier said than done, I know!

I will leave you with a little known, but fascinating finding. It has been shown that people with CFS have actually lost their fingerprints! Figure that one out, Sherlock!

To contact Dr. Jan Venter go to or

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