07.22.2016

Friday 5: July 22, 2016 fibromyalgia and ME/CFS news

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I’m trying something different today! I’ve been missing the weekly fibromyalgia and ME/CFS news posts. Since I started to publish them semimonthly, it feels like I’m not giving you the most up-to-date fibromyalgia/ME/CFS news in a timely manner.

So, I’m going to try something called Friday 5 for a few weeks and see if this works better! Each Friday, I’ll send you 5 interesting tidbits from the fibromyalgia and ME/CFS communities. This way, you’ll always get the latest news, but you won’t be overwhelmed with a LONG … LONG … LONG post of links.

Let me know how you like it!

July 22, 2016 fibromyalgia and ME/CFS news

This week’s Friday 5 …

EULAR just released new recommendations for the management of fibromyalgia. Here’s a quick summary or read the actual document (12-page PDF) here.

Canadian study finds Lyrica and Cymbalta work better together than individually.

Gut bacteria are different in people with chronic fatigue syndrome. This has been big news in the ME/CFS community recently!

Please consider signing this petition to support funding of the National Pain Strategy. There’s only 30 days to reach the goal of 100,000 signatures. And after you sign it, share it with everyone you know! We need better funding for chronic pain initiatives!

Struggling with sleep? You might be interested in attending the free Sleep Success Summit! 30+ sleep experts with advice on help you get a better night’s rest!

(This post is part of Being Fibro Mom’s Chronic Friday Linkup!)

Each week, FedUpwithFatigue.com covers the latest news, research and practical tips to help you live better with fibromyalgia and ME/CFS. If you liked this post, sign up for updates below!






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Comments

  1. Really interesting news coming out lately about gut bacteria in the FMS world. Also, the Lyrica and Cymbalta medications being taken together, I would be very interested in hearing how that works from someone who actually tried it. If anyone tries, let us know! Thanks for partying at Chronic Friday Linkup! Pinned/Shared/Tweeted P.S. like the new layout! 🙂

  2. Great idea to share your findings this way!

  3. What a great idea! I’ve been having the same problem with my blog – keeping up with posting news. This is an excellent solution!

    I found your blog through Chronic Friday Linkup!

    Sue

    Living with ME/CFS

  4. Nancy Berry says:

    “I got learned” alright, lol! (Note to self: ALWAYS proof before sending! zjeesh!) 🙂

  5. Nancy Berry says:

    Hi Donna,
    I haven’t had much time to read all of your blog, but I’m wondering if you’ve ever read Dr. Horowitz’s book, “Why can’t I get better?” It might shed some light on your illness. I got learned a LOT of new things from that book and it led me to some great solutions for my daughter who was diagnosed with “Fibromyalgia” 5 years ago. She is now improving daily. No I’m not selling anything. I’m just a Mom who really wanted to get to the bottom of her issues. Thanks for your blog! ~Momma Nancy

    • Donna Gregory/FedUpwithFatigue.com says:

      Thanks, Nancy! Thank you for the book recommendation and so glad your daughter is going better. That gives me some hope! I’ve heard that Dr. Horowitz’s book is basically the Lyme bible. I think he has a new one coming out later this year.

  6. Charlotte says:

    Thanks for putting this together Donna 🙂
    I read the highlights of the EULAR recommendations and have to say, I agree. One of the most important things i’ve done since the start of this year is to walk at least three times per week and it makes SUCH a difference. It was hard at first because I was so out of shape and stiff but little by little I’ve been able to go further and further. I can walk 2 miles now without any problems whereas, when I first became ill with Fibro I couldn’t walk to the bottom of my garden and back (it wasn’t a huge garden) If for any reason I miss my walks I can really tell, I quickly start to seize up even more.
    The other thing that has helped me GREATLY is daily meditation. Again, I started this at the start of the year and I’ve found it to be beneficial on so many levels. I started using the app ‘Headspace’ which is probably the best app that has ever been designed! It’s a joy to use. Now, I have moved onto Breathworks which is mindful meditation specifically for pain management. It is really good too.

    I’m so glad I found this blog! it’s such a great resource. Thanks Donna! 🙂

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Charlotte, thank you for all of the great recommendations. I’ve heard of Headspace and downloaded it but haven’t tried it yet. I’ll have to change that, huh? I used to have a daily meditation practice, and enjoyed it, but have found it hard to get back into the habit of it.

  7. Shauna Waldroup says:

    I think this style of the blog is much easier to read and not become bored with or worn out with.

    • Donna Gregory/FedUpwithFatigue.com says:

      Thank you for the feedback, Shauna! Hope you’re doing as well as possible!

  8. Ellen says:

    How can I contact you, as I may have something of interest to you. I would rather speak with you before I post anything about what has been working for me.

  9. PATRICIA says:

    I LIVE IN VIRGINIA.IVE HAD FIBROIDMYALGIA FOR 20 YEARS.NOW IM 65 YEARS OLD LOOK 45 BUT FEEL LIKE 100.THE FIBROID FLARE UPS ARE COMING MORE OFTEN WITH CRAWLY FEELING AND ITCHING ALL OVER.SKIN SO SORE I CANT TOUCH MYSELF.TIRED ALL THE TIME HAVE TO PUSH MYSELF.MY SPOUSE NOR MY OLDER SON UNDERSTAND WHAT IM FEELING AND IT MAKES ME ANGRY.I FEEL I CANT PUSH MYSELF ANYMORE.I CANNOT TAKE ANYTHING FOR THE PAIN.MY IMMUNE SYSTEM IS SO BAD IM ALLERGIC TO ALL PAIN MEDS.NOT SURE WHAT TO DO.THE PAIN IS IN JOINTS AND MUSCLE.I GET MIGRAINES SORENESS ON THE SKIN.KNEES SWELL AND SORE.IM TIRED OF FEELING SO BAD.HOW DO I MAKE MY FAMILY UNDERSTAND WHAT IM GOING THRU AS THEY CONTINUE TO PUSH ME.SOME DAYS ARE GOOD WITH ENERGY TO BURN.BUT IF THERE IS A CHANGE IN WEATHER OR ANYTHING UPSETTING IM RIGHT BACK WHERE I WAS.IF YOU CANT TAKE MEDICATIONS WHAT ARE YOU SUPPOSE TO DO.ANY ONE WITH THE ANSWER WILL BE GREATLY APPRECIATED.IVE EVEN HAD THE STUFF DRIPPED DOWN MY SPINE WITH NEEDLE.SHORT TERM RELIEF.NEED AN ASWER.

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Patricia, I know it’s really hard to deal with the challenges of fibro when loved ones don’t understand. I’ve found it really helpful to make friends w/ other people who have fibro b/c they understand what we’re going through. Facebook groups are great for that! I have a Facebook group called “What Works for Fibromyalgia.” We try to focus on sharing what helps us w/ symptoms. You’re welcome to join us! The address is http://www.facebook.com/groups/whatworksforfibromyalgia

  10. Christianne McCall says:

    I like this idea. Thanks for sharing. Sometimes it’s easy to miss headlines in the Facebook feeds.

  11. Lisa Eaton says:

    Like the new format! Thank you for your time!

  12. thank you for friday 5! makes it much easier to read and absorb new health news. with these nasty illnesses we are living with; I’m able to retain and read easier. :}

  13. I just want to say thank you for all you do I know it probably seems redundant. I got sick about four and a half years ago went and they did a little of everything I seem to have some kind of blood issue I finally went to Scripps and was diagnosed with autoimmune but I am so tired sometimes it scares me and with everything to my shame I have become housebound I don’t get my hair done anymore or any of the things that most women do. I almost panic when I leave the house. My sleep is terrible and it’s just a mess I don’t know if we’re allowed to ask you a personal question but I am warm like others but I also have horrible chills and then my rheumatologist started telling me that my symptoms didn’t mimic the disease but I have spent a fortune on books and they kind of backup many of the symptoms I do have. And I don’t do good on the normal meds they cause too much anxiety just the way I’m built. But anyways I still want to say thank you I wait for your emails frankly you’re one of the few who have made sense! I am not a stupid person you probably think so with no punctuation but I was a nurse for 20-plus years I only retired to take a handicapped brother who had nowhere to go after the death of our aunt and uncle they were going to put him in a home so I said that would not work for me. I hope you have a great weekend. Very very best regards marymajor

    • Donna Gregory/FedUpwithFatigue.com says:

      Hi Mary, so nice to hear from you again! I’m so sorry you’re having such a rough time of it. Just know that you are not alone! There are so many of us out here who are struggling along with you! I would encourage you to consider underlying causes for your fibro symptoms. I guess you know that I was recently diagnosed with Lyme. Lyme is definitely one underlying cause, but there may be others too, like issues w/ thyroid, adrenal glands, certain viruses, bacteria, molds, toxins, etc. Last month, I listened to several of the talks given during the online Fibro Fix Summit, and the host, Dr. David Brady, talked a lot about underlying causes for fibro symptoms. He just published a book that I ordered last night called “The Fibro Fix.” I’m planning to do something on the book on my blog in the future. His book is devoted to looking at underlying causes. I just think it’s so important for us to not really accept that it’s “just fibro.” There is a reason our bodies are doing this, and maybe if we can figure out the cause, then we can try to fix it or at least manage it better. Just my thoughts, for what they are worth. Hugs to you!

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