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Fibromyalgia Is My Thing #10

Updated on March 3, 2011
The sun bursting through
The sun bursting through
Spring On Its Way
Spring On Its Way

Information Gathering

I am so excited I just had to come here and share my excitement with you all. (Kentucky Twang)

I subscribe to an e-publication called National Fibromyalgia Association. (http://www.fmaware.org) This is an online place to go to learn more about this mysterious and not so mysterious disease we Fibromites deal with.

Hopefully many of you are already members of this area. Membership has always been and continues to be free.

I am excited because this organization has been able to reach so many people and do what I have not been able to do.

I have a dream… more on that later. First, my fantastic news.

The NFA has published, for the first time a Newsletter. It is called “Fibromyalgia - Chronic Pain News Report. And it is free to those who subscribe the NFA.

I highly recommend you checking it out. You can go to your search engine and just plug in “National Fibromyalgia Association” and really find a place to learn more about Fibromyalgia.

This First newsletter from the NFA includes the following topics:

*Cervical Spinal Cord Abnormalities and Fibromyalgia

*Fibromyalgia and Irritable Bowel Syndrome Research Study

*Research Physician Launches Innovative Fibromyalgia Treatment Program

*Juvenile Fibromyalgia - an under diagnosed, under treated anomaly

*Fibromyalgia Advocacy at Work

* NFA statement on recent studies linking obesity to Fibromyalgia symptoms.

As I said starting out, all of this is free, free information. Information is the beginning of knowledge; how exciting for all of us.

A short summary and then I’d like to share my dream.

Cervical Spinal Cord Abnormalities and Fibromyalgia

In 1997 there was a Fibromyalgia Symposium in Portland, Oregon. That Symposium discussed the discoveries and the implications for Fibromites.

270 people with a fibromyalgia diagnosis were studied in 2004 and was written about in the European Spine Journal.

Whether the patients manifested neurological signs of Cervical Myleopathy was the objective.

The conclusion was that some of the patients with Fibromyalgia have both signs and symptoms consistent with Cervical Myeolopathy, most likely stemming from spinal cord compression. (Further tests are needed to discover if Cervical Myeolopathy treatment would help the pain folks are suffering and possibly eliminate it.) We are talking surgery here.

Forty patients had the surgery and showed significant improvement to all symptoms attributed to Fibromyalgia.

Thirty-one patients did not have the surgery and showed no improvement.

The article goes on to compare symptoms shared by Fibromyalgia, Cervical Stenosis and Chiari Malformation.

Just to clarify a little (and I know this seems like a lot to take in, but it is so exciting and such a big thing for fibromyalgia sufferers, bear with me,) here are the simple definitions:

Chiari Malformation is a malformation of the brain caused by the shape of the skull.

Spinal Stenosis is a narrowing of the spinal canal in the neck area or upper part of the spine (C1 through C7). This narrowing can pinch the spinal cord and nerve roots.

Cervical Myeolopathy indicates injury to the spinal cord and its function.

There is so much in this article I find it difficult to share it all here in a hub. I not only hope you will read it, I highly recommend you read and research it for yourself. This could be the break through we have been hoping for.

To access this free publication you first join the National Fibromyalgia Association for free. (Always free) fmaware.org

Then you request the “Fibromyalgia Chronic Pain News Report” and it is also free (at least for a year).

We need to ban together and help to educate ourselves and share our knowledge. This newsletter is chocked full of good and interesting information. It is pertinent to us today. Won’t you please go check it out?

I am so excited to see active advice that encourages and actually points us in a direction that certainly can improve our quality of life.

Oh there is also a Fibromyalgia/Irritable Bowel research study report. Go to http://surveymonkey.com/s/FMandIBS and check it out.

My resources for this hub are:

NFA is on Facebook,so you can find them there as well as their website.

www.YouTube.com/NFAChannel;

www.fibroblog.org;

www.fmaware.org.

For pain treatment topics go to www.pain-topics.org.

This site not only offers great information about Fibromyalgia and other painful conditions it also has an open forum where you can leave pertinent comments and ask questions of others of like-circumstances.

I hope you go, check it all out and come away lifted up as I have.

The sun has been shining and the stars have been out for the past two days. It has been so awesome. I am on a high, can you tell? A natural high!

Happy Spring to you all!!

I said I was going to tell you about my dream, but the hour is waxing late so I will make another hub about my dream…soon.

Comments

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    • Pixienot profile imageAUTHOR

      Pixienot 

      7 years ago from Clarksville, Indiana

      Thank you I certainly hope it helps. Having folks who are invested emotionally and backing me in the same way is a huge help!

      Thanks for the vote.

    • profile image

      LoraKayAlexander 

      7 years ago

      Wonderful news. I am sure it will help many. Love

    • profile image

      Pixienot 

      7 years ago

      Oh Jillian, I am so sorry for your experience, however I thank you from the bottom of my heart for sharing your experience to help others NOT to suffer as you did.

      It is so encouraging to know someone who actually had the surgery and experienced success. You are awesome. I am sorry you suffer now due to a dental procedure. What you shared will prevent others from making the same mistake.

      I am not sure if I am willing to go into surgery again. Certainly it is one of my viable options if things become unbearably worse.

      B.Malin, I am glad that you can pass this along. Always consider surgery, remind your sister, with wisdom in many opinions, and always remembering the outcome variants.

      I don't think "every" miracle has its drawbacks, but certainly nothing is perfect. Thank you for your input. I wish your sister only the best. Hopefully she will remain with a mild case and not get worse.

      Will, thank you for your encouragement, and your approval. I always look for you in my comments. :)

      Thank you all for stopping by and for your votes.

    • WillStarr profile image

      WillStarr 

      7 years ago from Phoenix, Arizona

      Great news Pixienot and how thoughtful you are to share this information with other sufferers.

    • b. Malin profile image

      b. Malin 

      7 years ago

      Oh Pixienot, this all sounds so wonderful, I'm going to pass this information on to my Sister, who seems to suffer with a milder form. But never the less she suffers. Are you considering Surgery? That's sad what happened to Jillian Barclay (above). I guess every "Miracle" has it's drawbacks...I hope she sued the Dentist! LOL.

    • Jillian Barclay profile image

      Jillian Barclay 

      7 years ago from California, USA

      Dear Pixienot,

      I subscribe to this newsletter and the info on cervical spine problems is invaluable. A warning though, to anyone who has had cervical spine surgery (had surgery in 2006): If, after your surgery, you go to the dentist, don't just tell the dentist that you have had C-spine surgery- demand that they brace your neck during any dental procedure! That lack of bracing can negate any positive effects from surgery (my opinion and experience only)!

      The surgery I had took 7 and a half hours, was very complicated and involved bone implants. I recovered, had no symptoms of fibromyalgia or neck and back pain and 6 months later went to the dentist where they pulled 2 wisdom teeth. I told them about my recent surgery, the oral surgeon said no problem, but did not brace my neck. Immediately after the dental procedure, that familiar neck pain came back...Am now worse than before, so be careful!

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