06.27.2016

June 27, 2016 fibromyalgia and ME/CFS news

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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…

June 27, 2016 Fibromyalgia and ME/CFS research 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.”

Forbes: Half the UK is living with chronic pain, study finds

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?)

Waking Times:  6 plants other than cannabis that are high in healing cannabinoids

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.)

Grace is Sufficient: D-ribose for chronic fatigue and fibromyalgia (Blogger Kim Penix shares how she uses d-ribose to improve her fatigue. I’ve had good luck with d-ribose too.)

In case you missed it…

5 unusual things to improve your sleep – Struggling to sleep? These five things might help!

Struggling to sleep? Read about five unusual things to improve sleep!

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 …

The June 10, 2016, edition of FedUpwithFatigue’s fibro and ME/CFS news

June 10, 2016 - Fibromyalgia and ME/CFS research news

This post is part of Being Fibro Mom’s Chronic Friday Linkup.

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Comments

  1. Hi Donna, I also ended up in 2009-2013 a Fibromyalgia and CFS diagnosis after being sick with EBV every few months along with a ton of other symptoms. Once diagnosed with CFS, I looked up docs on the internet. The first CFS doctor I went to tested me for Lyme and I was CDC positive. So my LLMD still says that my chronic fatigue and fibro are caused by the Lyme. Mine is definitely chronic. I’ve been treating for 3.5 years and I’ve got quite a ways to go. I sincerely can relate to what you must be going through. If you need any info or just want to chat, I’m at http://www.readbetweenthelyme.com or Twitter @readbtwnthelyme
    With all the misinformation and controversy involved with Chronic Lyme disease, we definitely have to stick together in combating this disease and the ignorance surrounding it. Some wonderful resources are websites Tired of Lyme, Lyme Stats, and Better Health Guy

    I’m so glad I found you and your blog via the Chronic Illness Bloggers Network. 😘😘

    • Donna Gregory/FedUpwithFatigue.com says:

      Thanks, Ellen, for reaching out to me! I’ve added your blog to my Bloglovin’ feed!

  2. Seems like immune system testing would be the FIRST thing doctors would check when a patient comes in with ‘classic’ symptoms. All those viruses, wow, no wonder your exhausted! Our immune systems are always working overtime! Pinned/Tweeted/Shared Thank you so much for posting at the Chronic Friday Link-up Donna!

  3. A great collection of resorces! Will repost it to my work page, as I we often see clients with Fibro. Want to go through some of the links personally as I tend to suffer greatly at times with pain. Currently only diagnosed with Myasthenia Gravis and hypothyroidism. Thanks again!

  4. Last weekend I met with an old friend who was one of the last victims of polio in the 1950’s. His nerve damage sounds so similar to ours. One thing he mentioned was that the nerve damage we experience in our legs and feet can be progressive and that the nerves may/will die. I am not 100% sure of my facts, but I ordered the book he recommended which has a LOT more about nerves and even has drawings. It is called The Polio Paradox by Bruno. You may want to order it on amazon, only $7.54 for a used one. If not, I will summarize some things in it after I read it and share with you. Yes I know we didn’t have polio, but the nerve damage may be similar. The effects sure are like his are.

    • Donna Gregory/FedUpwithFatigue.com says:

      Small fiber neuropathy is very common in those of us with fibromyalgia, and yes, it does cause the nerves to eventually die. There’s not much the medical community can do about it at this point other than prescribe Lyrica and gabapentin. Those drugs do not stop the death of the nerves; they just make us more comfortable, if we can tolerate the side effects. I was recently diagnosed w/ Lyme disease and a couple of co-infections, one of which causes burning/tingling in the feet. I am hoping it will get better or disappear w/ adequate treatment.

  5. Patrice says:

    I feel your frustration Donna about doctors. I don’t understand why they don’t try harder to get to the root of problems. Instead they just throw more drugs at you, just like you said. I still don’t have a good doctor. Anytime I do ask for more in depth testing she just laughs at me or gets angry. Sssssoooo frustrating!

    Thanks again so much for posting these e-mails for those of us who don’t have the energy to do all the research!

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Patrice,
      Yes, navigating our healthcare system is so frustrating, but anyone with fibro or ME/CFS already knows that! 🙂 It sounds like it may be time to look for a new doctor. If she’s laughing or getting angry, she’s not listening to you and more importantly, you aren’t getting the care you deserve!

  6. Andrea Longridge says:

    I suffer from Lupus and Fibromyalgia. I have found Tizanadine to help with pain, far better than Flexeril. I also R Alpha Lipoic Acid, Curamed to help with pain and energy levels. After researching for 5 years, I have found a few other nutritional supplements that have really given me some relief. I actually asked my doctor to run the labs for me. I at the time worked for a Neuro-Ophthamologist and knew based on our patients that something was wrong with me. My MD ran them and came back as Lupus. You are your best advocate and do not take no for an answer. I am blessed to have doctors who trust my knowledge and support my decisions. Thank you for all of your research. I have found our discoveries are very similar.

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