07.21.2017

Friday 5: July 21, 2017 fibromyalgia, chronic fatigue and Lyme news

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July 21, 2017 fibromyalgia, chronic fatigue and Lyme news | Fed Up with Fatigue

1.

ME Association: CDC removes CBT and GET as recommended treatments for ME/CFS

Maybe this is the government’s way of acknowledging the many flaws of the controversial PACE trial. 

2.

Fibromyalgia News Today: Cleaning house, the fibro way

Columnist Carrie Anton shares tips on how she manages housework with chronic illness. If you enjoy her article, you might also like my post on “20 helpful tips for cleaning and organizing when you’re chronically ill.”

3.

News 10: Clinical trial being held for Lyme disease test

The existing testing for Lyme disease misses about half of all cases, so a new diagnostic is greatly needed. 

4.

The Mighty: I’m a doctor. Here are 5 lessons I only learned about fibromyalgia once I developed it myself. 

Dr. Ginevra Liptan learned some important lessons about the medical system after she developed fibromyalgia. 

5.

Power Health Talk: How the news media might be aggravating your symptoms (YouTube video, 1o minutes)

As a news junkie, I am so guilty of letting the media stress me out! If you do this, too, then you need to watch this! 

And an extra…

The Oz Blog: Do you really have fibromyalgia? 

Dr. David Brady discusses some of the conditions frequently mislabeled as fibromyalgia and how to tell if you REALLY have fibromyalgia. 

This week on FedUpwithFatigue.com…

CFIDS & Fibromyalgia Self-Help offers online classes to help better manage life with fibromyalgia and chronic fatigue. | Fed Up with Fatigue

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Comments

  1. Maureen says:

    Hi Donna, in regard to Dr. Brady’s article on FM VS. something else?? I scored high. I wasn’t sure how to answer #5 though because I do suffer from a Chronic ‘spine’ related pain condition on top of my apparent FM symptoms. My fatigue has been mostly constant for several months now.
    My old primary doc did the trigger point tests (positive) and Lymes and thyroid tests (always negative on the blood tests 5 yrs in a row) and Dx’d me with FM due to my complaint of many years of short term ‘fatigue episodes’. Would you think I ought to see a Rheumatologist for further testing and a proper diagnosis? My current primary doc is aware of this Dx.but not interested in going further with it for me.
    Thank you, Maureen

    • Donna Gregory/FedUpwithFatigue.com says:

      Maureen, when you said you’ve been tested for Lyme and thyroid:
      1. Did you have the standard Lyme testing from Labcorp, Quest or a similar lab? If you did, then you could VERY MUCH still have Lyme even w/ a negative test. (I’ve had probably a half a dozen standard Lyme tests – both before and after my diagnosis – and they have ALL come back negative, but I have Lyme based on other testing. The current testing only catches around 50% of cases, and if you’ve carried Lyme for a while, the chances of it showing up on that test are extremely low b/c Lyme suppresses the immune system and your body will not make antibodies to the bacteria anymore. The best testing at this point is iGenex testing, http://www.igenex.com. This is the testing that I had done to get diagnosed. I’ve also heard good things about testing by DNA Connexions. This is a urine test and you can order it yourself – no doctor required. Both of these tests are pay out of pocket tests, but are worth the cost to get the right diagnosis. You can email me for more info.
      2. For your thyroid testing, did your doctor do a COMPLETE thyroid panel, including antibody tests? If not, then you have NOT had your thyroid properly tested. Most doctors only test TSH and maybe T4 but those tests are NOT good indicators of thyroid function, so you could still have a thyroid problem even though it’s not showing up on TSH. (My TSH is just fine, but when they tested my T3, it was low.) Again, you’re welcome to email me for more information.

      • Maureen M. says:

        Hi Donna, so sorry I took so long to see your post and respond… I had out of state company for a week and it knocked my socks off during and since!
        I’m going to pull out my old records over the weekend and check it all out and get back to you by email. My thyroid and Lymes tests were last done several years ago and annually for about 5 yrs.
        Thank you sooo much for your in depth response! You’re the best! Big hugs to you! Maureen
        ps Due to several months of extreme FM symptoms…my primary here in Fla. sent me today for a Metabolic panel, a phosphate level and a creatinine kinase labs.
        Meanwhile, I am now searching for a Rheumatologist who specializes in FM/CFS

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