The longer I live with chronic illness, the less faith I have in our medical system. Last week, I received lab results from my first round of blood work ordered by my new Lyme doctors. Their findings? My immune system is compromised, according to at least two of the immune function tests they ordered. In addition to Lyme, my body is fighting several other tick-borne co-infections. Epstein Barr virus also made an appearance, although my doctors say it’s not currently active.
It’s no wonder I’ve been exhausted and in pain for years. My body has to be weary from fighting all those infections!
As I walked out of last week’s doctor’s appointment, there was one question that kept circling my mind: Why did it take 5 YEARS for doctors to test my immune system? Shouldn’t that have been one of the obvious tests ordered when a patient complains about severe fatigue? Why are our doctors so unwilling to go on the hunt to figure out what’s really behind our symptoms?
I’m not naive. I know it’s because the insurance companies frown upon “unnecessary testing,” and it’s much easier (and more lucrative) for doctors to write a prescription instead of spending the time to try to find out what’s wrong with us. It’s so frustrating that our system values profits over patients and that people are suffering because of it.
Ok, now that I’m done with my rant, let’s get onto the news…
Research and treatments …
Blogger Cort Johnson chronicles the troubled past of Ampligen, a potential ME/CFS drug that’s been 20+ years in the making.
Fibromyalgia News Today: Lidocaine does not appear to reduce pain in fibromyalgia
Cornell University: Indicator of chronic fatigue syndrome found in gut bacteria (It sounds like this may be a promising lead for a diagnostic test.)
The American Physical Therapy Association is launching a new campaign to promote physical therapy as a safer alternative to opioids for pain management.
Stony Brook University researcher awarded $1.5 million grant “to determine if heart rate fluctuations in combination with certain daily activity patterns can be used to predict or prevent relapse in people with CFS.”
Bel Marra Health: Fibromyalgia can be managed with magnetic brain stimulation used for treating depression. Sort of.
HealthRising.org: How the flavonoid luteolin could help ease brain fog
Bel Marra Health: Fibromyalgia, chronic fatigue syndrome can be improved with vitamin B12 and folic acid
Relief: Clinical trial finds botulinum toxin (aka Botox) can soothe neuropathic pain
Odds & ends …
How art journaling can help you cope with chronic illness
LawyersandSettlements.com: Long-term disability lawsuit against Eli Lilly results in $500,000 award (I guess Cymbalta didn’t work for their employee, huh?)
From the blogosphere…
Psychology Today/Toni Bernhard: 5 effective strategies for pacing when you’re sick and in pain
FibroDaze: 15 fibromyalgia blogs to check out
Skillfully Well: How I actually started exercising with a chronic condition
Stat News: An alternative to the Hippocratic oath: to not give up on patients (Reporter Juliet Preston writes about how chronic patients are affected when their doctors refuse to try more experimental treatments.)
Counting My Spoons: 7 tips for dealing with fibromyalgia (This is a great post for the newly diagnosed and for those of us who need to be reminded of self care.)
In case you missed it…
5 unusual things to improve your sleep – Struggling to sleep? These five things might help!
It may not be “just fibro” – it could be Lyme disease – Lyme disease is routinely misdiagnosed as fibromyalgia and ME/CFS. Learn how to get the appropriate testing and screening to rule out Lyme as a possible underlying cause for symptoms of fibro and chronic fatigue.
More fibromyalgia and ME/CFS news …