Interesting Statistics from a Large Scale Study on Symptom Priorities

REMEMBER: Next Saturday, Oct. 9, we meet at 12:30 PM at
my house for our Spartanburg monthly meeting! Bring a small
plate of healthy finger foods, folks. RSVP if you're coming.
drgreer@charter.net
________________________________________________________
FMS Symptom Treatment Priorities (in order of selection frequency)*

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Pain (90%)
•Disturbed sleep
•Pain or discomfort
•Skin is sensitive to touch
•Difficulty walking
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Fatigue (89%)
•Feeling tired
•Difficulty thinking
•Having to push yourself to do things
•Having a lack of energy
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Domestic (42%)
•Difficulty being sexually intimate with your partner
•Inability to make plans, confident you'll follow-through
•Strain on your relationship with spouse
•Impact on your family
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Impairment (29%)
•Driving limitations
•Interference with work or school
•Interference with daily tasks
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Mood-related or "Affective" (21%)
•Feeling anxious
•Feeling isolated
•Feeling depressed
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Social (9%)
•Impact on your social life
•Feeling like the pace of your life is slower than most other people

*From an FM e-News Alert, Karen Thoronson, 10/1/2010

Poetry for My FMS Friends

 

                                                      “A Prayer For Those Suffering”

May Thy grace be found sufficient

For the suff’ring of the hour;

May they know Thy strength in weakness

And the fullness of Thy pow’r.

May they know Thy lovingkindness

May they feel Thy tender touch,

      In the hours of their suff’ring

Be it little, be it much.

May they sense Thy Spirit’s closeness

In the days and nights of pain;

May they know, Lord, that You trust them

With the suff’rings You ordain.

               

               

May they rest upon this promise:

               “I will never thee forsake!”

              
               May they see throughout their suff’rings

               That You make not one mistake.

  

May they wait on Thee for answers

               Which will come in Heav’n above,

          All the while trusting daily

          In the comforts of Thy love.

© Written by WDB on Sept. 16, 2010

while praying for Barbara Ledbetter

 (going "home" soon) and family.

Share a Receipe: September 11, Saturday at 12:30 PM

That's right! It's just about a week away from our kick-off for the regular monthly meetings. Help us out and bring a recipe and sample for some healthy finger food. With the holidays coming we all need to keep the pounds off and eat well; so if you have a tasty and healthy snack you want to share, make some and bring a card with the recipe printed on it along with your name. I will scan them and send them to everyone on our email list.

The battle on finding a unique virus at the root of CFS is still ongoing, but my own opinion is that it may be a different virus or more than one virus causing problems within a specific population. For instance, there was a great outbreak of CFS in Britain last century. Perhaps if it was a viral problem, it may be specific to the common genetic code of the British and a different virus for a population of people, for example, in South Carolina. I wish there could be some consensus on this. My hope is that our researchers look for more than one single virus for all people groups.

I hope you are enjoying the benefits of lower temperatures and lower electric bills, too. Hope you are getting some exercise and will be at our upcoming meeting. Let me know by email (drgreer@charter.net)if you will be attending with your recipe in hand! (A low calorie fruit smoothie sounds good right now.)

Yours,
Linda B. Greer
NFA Volunteer Group Facilitator

See You in September, See You When the Summer's Through...

Hello from your faithful leader! I'm finishing a book sent to me by two NFA support group ladies in the Northeast part of the USA who've written a great book to read. It's entitled Chronic Fatigue Syndrome and Fibromyalgia, from F.I.N.E. to feeling better by Nancy Fowler and Lisa Ball. BTW, F.I.N.E. stands for "frustrated, irritated, nauseated and exhausted". Within this comprehensive and sketch illustrated book, I found several good web sites to add to our blog and hope you check them out. Those interested in alternative medicine might like the one for NCCAM.
               

If you haven't already heard, news is the XMRV (or XM retrovirus) is now under official and intense investigation as a causative factor in prostate cancer and may also be part of the underpinnings of CFS. The big agencies (NIH, CDCR, American Assn. of Blood Banks, etc.) are doing special testing for verifiable and accurate blood test samples. The AABB is also screening now for anyone who may have XMRV in terms of blood donations. So for those who have been diagnosed with CFS or suspect you have an immune disorder, don't go to donate blood, please. You may be spreading the XMRV by doing so.

I'd like very much to see everyone at our next gathering on Saturday, September 11. This will be right after the Labor Day weekend, so don't overdo and be too pooped to come join us at my home. I hope to have a holistic chiropractor present to share her approach in helping ease symptoms for FMS/CFS for our September kick-off meeting. For an added bonus, those who have IBS can try out my new comfort height toilet in the downstairs half bath. Call me or email if you plan to attend (278-2018 and drgreer@charter.net )

And thank the Good Shepherd above for the rain to quench the earth and keep the temperatures down! My HVAC unit was huffing and puffing a few days ago as I contemplated adding a window unit for  my upstairs. I bet all our electric bills will be phenomenally high for July. Take it in stride, friends, as we see signs of the Second Coming all around us.

Your Friend and Sister in the Faith,
Linda B. Greer

Nutrition and FMS

Today we had a very special guest at our meeting. Nancy Taylor of NuCommunity, LLC, spoke on food sensitivities and how what we eat may be causing our symptoms to worsen. Her new blood testing program and survey of symptoms is a first step in analyzing what foods may be causing flares and how badly they are making you feel on a daily basis.

Nancy's approach to resolving these dietary issues is a process of elimination of the two highest categories out of three for your food sensitivities. After ten days on the elimination diet, you are again surveyed on how you feel. After this, some of the middle level foods on your sensitivity scales are introduced, one each day. Eventually rotation is introduced into your diet and some of your high sensitivity foods can be re-introduced into your diet without the usual symptoms. Of course, high water intake is imperative in such a diet plan. The whole process takes about 5 weeks to complete and the object is to reduce the occurrence of cytokines and algesics that cause pain in our bodies.

Mrs. Taylor said some insurance companies will actually pay for the blood work and the periodic consultations. (Unfortunately, Medicare does not.) There is a partner group that can check for your insurance if you call her and are serious about trying her healthy nutrition plan. Remember, it is individualized just for you.  Her phone number is 864-888-2535. Her email is nancy@nucommunity.com and her website is www.nucommunity.com. Nancy is planning to set up a satellite office in Greenville off Pelham Road in the Patewood area in the near future.

In a case study with a person who suffered severe migraines, she showed how this elimination and re-introduction diet can create remarkable decreases in symptoms in the 90% range from start to completion. For FMS patients, Nancy's goal is to reduce symptoms by at least 75%. Ah-hah moment like the Panda Bear at the left! Who of us wouldn't like to see a reduction in symptoms by at least 75% with no side effects?

We got many hand-outs today from both myself and from Nancy Taylor--so for those who missed the meeting, it was extremely informative. I hope you will come to our next meeting on Saturday, July 10. We will be sharing ways to avoid the heat and still have a good summer with FMS. Come and give us your input on what you do to cope.

Yours truly,
Dr. Linda B. Greer
NFA Support Group Volunteer
Spartanburg, SC

Sharing the Burden of Over Five Million

The Bible tells us not only to be concerned with our own problems, but to share the burdens of our brothers and sisters in Christ and do good to those of us in God's family. There is always time for sowing good seeds. (Galatians 6: 2-10). For over two years I have volunteered in Spartanburg as a support group leader for the National Fibromyalgia Association. The NFA is one of the largest world-wide groups to assist and educate the public, medical professionals, and people afflicted with Fibromyalgia Syndrome (FMS) and/or Chronic Fatigue Syndrome (CFS), the most common comorbidity to FMS.

I had suffered chronically for about 10 years before proper diagnosis and couldn't make sense of the fatigue and achiness I would feel. Even my orthopedic doctor, a graduate of UNC-CH, misdiagnosed me as having tennis elbow with my first bout of FMS. In 2001, at the Pain Clinic at Duke University Hospital in Durham, NC, I heard the diagnosis of Fibromyalgia for the first time. It relieved me knowing there was a name for all the symptoms I was having.

When I returned to my home in Florida, our support group was a real life saver for me as my symptoms escalated with the murder of my elder of two daughters in 2003. I was already a widow of 15 years at the time. I was unable to provide a godly father figure for my children. As each year ticked away and they grew up without their own daddy, I acutely grieved the hole in their lives.

After moving to South Carolina as an empty nester, I started a group because there wasn't one. We meet on the secon Saturday to share and care about each other. We have a light, healtht lunch together with decaf bevrages. You can probably imagine how difficult it is to encourage people who don't feel good to dress, drive, and come to a meeting in my home, but I believe it is a necessary part of getting some social, spiritual, and medical networking done.

The Spartanburg Christian FMS/CFS Support Group is a tiny part of a community of chronic pain sufferers nationwide and deserves your support, especially since doing so is free! Please use the igive portal for online purchases. They have hundreds of stores available. You can even forward this link to others.
This is the link:

http://www.igive.com/welcome/

The igive team has made many improvements to their search engine recently, so they want lots of people to try it out and put it to the test. If you keep on searching or shopping after testing it out, so much the better for the Spartanburg Christian FMS/CFS Support. The search engine is http://www.isearch.igive.com/
Blessings and Agape,

Dr. Linda B. Greer

April Support Group Meeting & Advice about Returning to College

Dear FMS Friends,

Our April meeting for Spartanburg, SC, has been rescheduled to Saturday April 17 instead of April 10. I hope you all will come out to hear Nancy, our guest speaker, give us pointers on nutrition and FMS symptoms. She is driving all the way from Seneca to visit with us, so let's make an effort to be at this meeting. I also have a great hand-out about different foods and their benefits to our health.

I also wanted to discuss a question presented to me in an email. If any of you are considering returning to college, you may want to take these suggestions on how to cope with the addition of stress from college courses and keeping your firbromyalgia under control.

Here's what I recommended:

Ask the Office of Disabilities and Learning Differences at the college about getting a note taker for days you will miss because of Fibro flares. Take a doctor's diagnosis on letterhead from your Primary Care Doctor or your Rheumatologist. Also take a Fact Sheet about FMS from the NFA website http://www.fmaware.org/ . Get classified as a Special Needs Student under the ADA.


Get a medium to small size rolling book bag and take the elevator whenever possible or handicap ramps. Pack a thin square pillow or seat pad to cushion the bottom of classroom chairs--they are usually hard as rocks. Only pack what you will need that day--a few sheets of paper for notes in a folder that you can transfer to a larger binder kept at home.

Ask the instructor if you can record the lessons since you may have trouble writing for long periods without getting hand cramps and fatigue. Ask for any copies of hand-outs to be kept by someone who is in the class whenever you are absent or make your professor aware you will need these at the next class. Ask about make up quiz and test policies since you may have a number of absences. Be sure you have been classified as a special needs student first before speaking to your instructor.

Sit near the front and center to avoid distractions and to see better. Don't be afraid to ask questions. Take no more than two courses per semester and do not take them on the same days to avoid overlapping memory problems. You will have more on your plate than you can handle if you sign up for more than two courses per regular term! For summer, take only one course for the full summer term--no compressed mini-terms.

Go to the library and make sure you know how to access full magazine articles and the card catalog electronically from home through the internet. Ask about the lending library policy from other institutions if it is a state university or college.

Get a handicap parking sticker from the office for driving licenses. You must have a note from your doctor or rheumatologist stating a need for one. Parking long distances from your classroom is only going to tire you out more. Save your energy for classroom time.

Linda B. Greer
Volunteer NFA Support Group Leader
Spartanburg, SC