ME/CFS AUSTRALIA (SA) INC
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ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
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How Fibromyalgia & Chronic Fatigue Syndrome should be diagnosed
Friday 8 November 2013
How Fibromyalgia & Chronic Fatigue Syndrome Should be Diagnosed
Anyone who's gone through the diagnostic process for fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS) knows it's a tough one, and after all the tests have been run, the doctor still may not be confident about the diagnosis. It's also common for people with a new diagnosis to question it based on the lack of a laboratory test or scan that confirms it 100%.
With diagnoses like these, that are based partly on exclusion, a lack of certainty is normal. Unfortunately, so is a higher-than-average misdiagnosis rate. Until medical science gives us good, solid tests for these conditions, I believe doctors need to be more diligent when diagnosing them. A couple of key tests are left out, in my opinion.
Polysomnography is a sleep study. We all know that our sleep is messed up - we don't wake up refreshed, and most of us have overlapping sleep disorders. FMS has gotten most of the attention in this area.
However, a new study on ME/CFS found just a hair under 50% of participants had a diagnosable sleep disorder, with obstructive sleep apnea being the most common. In many of those people, the ME/CFS diagnosis was rejected in favor of a primary sleep disorder.
Other researchers have suggested that doctors screen for narcolepsy before diagnosing chronic fatigue syndrome, but the medical community hasn't take this advice. It's also not standard practice for those of us with FMS or ME/CFS to get a sleep study as part of the treatment process.
Instead, doctors often write off our fatigue as just one of our symptoms. In reality, the majority of us could have a treatable sleep disorder, either instead of or on top of what we're diagnosed with. Diagnosis and treatment could mean a better quality of life and a better chance of recovery for millions, as we know that better sleep quality means fewer symptoms.
I know from experience how big a difference it can make. I was diagnosed with sleep apnea five years ago, and it was life changing. I'd been incapacitated by fatigue for a long time, and my CPAP machine improved my sleep and my life immensely.
Sleep studies can be problematic. First, they're expensive, so not all insurance plans cover them. That can make them out of reach for a lot of people. Second, they're rather unpleasant. It'll probably be the worst night of sleep in your life. Some people may need to go in two or three times before they sleep well enough to be diagnosed, which compounds both problems. If it's something you can handle financially, the discomfort is well worth it for sleeping better – for the rest of your life.
Can you imagine believing for years that you had FMS or ME/CFS only to find out it's actually sleep apnea or insomnia? It's possible that a couple million of us are in exactly that situation right now.
Did you know gluten sensitivity can cause symptoms almost identical to FMS and ME/CFS? Trust me, I've been there! Other food sensitivities can, as well.
We now know that FMS and ME/CFS, by definition, involve hypersensitivity. That hypersensitivity often extends to food, or to chemicals (i.e., MSG, aspartame) that are frequently added to foods. These sensitivities can make our symptoms far worse.
So doesn't it make sense to check for these things? Then we'd know whether it was a food sensitivity rather than FMS or ME/CFS, or if what we ate was making our FMS/ME/CFS worse.
I've written a lot about the elimination diet I'm on to identify my food sensitivities. The massive drop in inflammation has relieved a lot of FMS, arthritis, myofascial pain syndrome, and autoimmune thyroid disease symptoms. It's also given me more energy and mental focus.
Doctors also can test for some food sensitivities, but many prefer dietary experimentation to tests. If you'd like the tests, you may have an easier time getting an alternative practitioner, like a naturopath or homeopath, to perform them. Even if that's the case, you should still discuss the results with your regular doctor.
Like any tests, that can be an expensive way to go. The diet may be a less expensive (though more difficult) option. Again, if I can feel better for this experience and how it's teaching me to modify my eating habits, it's well worth the trouble.
Asking for Tests
If you want to ask your doctor about either of these tests, it'll help to go in prepared. Look over the symptoms lists for sleep disorders and food sensitivities and write down the ones you have. If any are new or seem to come in clusters, make sure to note that. Here are lists for you, from my About.com Health colleagues:
The elimination diet is something you can do on your own, although it's a good idea to check with your doctor to make sure it's safe for you. Here's more information:
Are you considering these tests? Have you been checked for sleep disorders and food sensitivities? What did you learn? How has treating these things changed you life? Leave your comments here!
The above, with comments, originally appeared here.
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