Charlotte CFS/ME/FM Support Group Newsletter
for February 13, 2010
Dear Members,
Our next meeting is Thursday, February, 18th, 7:00PM - 9:00PM. Dr. Lapp will speak on neurotoxins. You don't want to miss this very important topic! You will have the opportunity to ask questions and be able to share with each other personal experiences.
The meeting is at Sharon Presbyterian Church, 0.8 miles south of South Park Mall; Sharon Presbyterian Church is located 0.8 miles south of SouthPark Mall on Sharon Road. Use the entrance closest to the mall. We meet in the Charles Little Activity Building (or CLAB), which is the brick building at the rear of the parking lot. As you come into the building, go into the first door on your right. This is the Parlor of that building where we have our meetings.
Upcoming Meetings:
- March 18 -- Dr. Myra Preston, Diplomat in Neurotherapy and Cognitive Behavioral Therapy. Dr. Preston will present the latest in neurofeedback
- April 15 -- Kelly Gibson, CLL - L.A.U.G.H. Laugh And U Generate Happiness; 704-724-3899 - Kelly will teach us how to use laughter to cope with chronic illness.
- May 20 -- TBD
- June 17 -- Dr. Nancy Waring, PhD., a therapist who has CFS & Fibro will speak to us on coping with chronic illness
As always, I want to remind everyone who attends to be sure that you don't use perfumes or perfumed anything before coming to the meeting. It can be very toxic for some people. For those who may not be aware... MCS (Multiple Chemical Sensitivity) is a very serious illness that can be anywhere from mild to severe for some folks. Often this disorder accompanies CFS - I'm not sure about those with "just" Fibro. Dr. Lapp can answer that question.
Another issue we've not discussed before is sensitivity to heat and cold. This is very common with CFS and probably Fibro as well. At our meetings, we have about 4 heat/ACs and we can easily adjust the temperature. The problem comes when the room is either very cold or very warm when the first person arrives to set up for the meeting. They turn on the heat or AC. Later on it can get too warm or too cold so that its necessary to adjust the thermostat.
We can discuss this briefly at future meetings, but we could ensure that one side of the room is a bit cooler for those who get overheated easily and those who don't can sit on the other side. But we'll have to address the issue at the meeting to work this out. But any time you are very uncomfortable - either too warm - or too cold, please interrupt and let us know and we'll quickly adjust the thermostats. Kebbie or any of us on the Board will ask you at some point after the meeting starts whether we need to adjust the temperature. But do ask if you need to.
And as always, if you are having an achy day and need to get up and walk around, you know that you are free to do that. We have refreshments you can enjoy or browse the information table. Or just walk around. If you need to cool off quickly, you can step outside for a minute or two.
Here are a variety of topics of interest:
Chronic Pain - NEWS AND VIEWS
http://www.healthcentral.com/utils/newsweb/chronic-pain/news.html
Keeping Up-to-Date with the Whittemore-Peterson Institute and XMRV
http://www.wpinstitute.org/news/news_current.html
The CFIDS Association February CFIDS Link e-News
http://www.cfids.org/archives/2006-2010-cfidslink/february-2010.asp
September 12, 2009 by Rest Ministries
Question: I often have aches in odd places, especially at night, and find that a heating pad doesn't work or stay close enough to my skin. Have you ever tried those heated patches that stick to your skin?
Answer: Yes! A popular one is ThermaCare and for a few dollars it can ease the pain. There are some real benefits: They make a variety of shapes for different parts of your body, so when I have found myself up late at night with a knee that was freezing up and filling with fluid, I could stick one on that is made specifically for the knee. They stay put all night and even have a bit of heat left when you wake up (likely because it’s under the covers). You can bend your knee and it doesn't come off.
The price of these can also add up quickly, however, so you may want to try some generic ones. I tried a few (some didn't work at all). My favorite was the menthol patch which was cool, soothing and heated within a few minutes. My favorite was the CVS pharmacy brand.
For about $6 you can get a box of 5. I would stock up when they were on sale and also use my CVS bucks. I also always pack them when I am traveling. I have shoulders that need joint replacements and have found they don't show under clothing, they stay in place, and they work great when you know you are going to be uncomfortable – like sharing an armrest with someone for 3 hours on an airplane or sleeping in harder beds.
I'd also suggest that you ask your doctor if the prescription Voltarin gel would be something he would prescribe for you. A tube of this can last for 6 months to a year depending on how much you use, but a little goes a very long way. This was just approved by the FDA a couple years ago.
NANCY'S 2 CENTS: I don't know who wrote the above but I hope it was helpful to you. Another pain remedy is Aspercreme. My Fibro is relatively mild but I do have neuropathy with its neuropathic pain plus odd pains here and there. I take pain meds for neuropathy, fibro and arthritis, but often, I'll have a spot that is just not being handled by the meds. And, of course, its always at night when we notice pain more. For years I've used Aspercreme for the arthritic pain in my neck and now for extra help with neuropathy. I keep it in my drawer by my bed so its handy in the night. Does a generic version help? Personally... I haven't found one yet that was as good as the Aspercreme brand.
Also, if you subscribe to Rest Ministries e-newsletters ( www.restministries.org ), you'll not only get faith-based help in coping with chronic conditions, but specific pain aids or for other health issues of a chronic nature.
TRANSCRIPTS of Judy
Mikovits Jan 22 XMRV Presentation and Q&A
February 9, 2010
http://www.prohealth.com/library/showarticle.cfm?libid=15139
Free Computers
My son turned a hobby into a profession some years ago when he was unemployed for 2 years. Now he is employed plus he has his own ministry of helping people by fixing computers for his family and church family plus he has a few customers. He refurbishes old computers for people who can't afford a new one.
Right now, I have 2 of the computers he refurbished. They are not anything special or speedy and its just the computer - no monitor or keyboard. But if you just need a new computer to replace one that is really DEAD, contact me and I'll give you the details about each of the two. Again, they are only powerful enough to do email and do "some" surfing.
If you are interested in one of these computers, either email me or call me at 704-563-0657. They are in the trunk of my car so if you are going to be at the meeting next Thursday, you could get one from me then.
PS: If you think your computer is dead but you can't afford to get it checked, Rick can do that for you as he has time. Just bring it to a meeting and I'll bring it home for him. Nancy
Come to Arthritis Services for the new and improved FM and Chronic Pain Management Group. This group will feature a new instructor, Diane Shinn, RN, BSN. Diane is a registered nurse and a health coach. She is looking forward to sharing her knowledge on fibromyalgia and teaching pilates, yoga, and tai chi movements. This month’s meeting is located at Arthritis Services, 500 E. Morehead, Charlotte, NC 28202 on February 17, 2010 from 1:00-2:15pm. Join Arthritis Services as we bring in the new year with a new and experienced group leader! **Registration is required: please call 704-331-4878. www.arthritisservices.org
PS: NOTE from Nancy: If you attend one of these meetings, please do send me feedback. I know that many of our Fibro members need specific pain help.
Web Usage Data as a Means of Evaluating Public Health Messaging and Outreach
A study done on the CFS government web site.
http://www.jmir.org/2009/4/e52
American Pain Foundation E-Newsletter:
http://action.painfoundation.org/site/MessageViewer?em_id=11021.0&printer_friendly=1
Judy Mikovits PhD to
present a talk to Cheney Clinic Patients and Cheney Research Website Visitors
Date: Mon, 8 Feb 2010 22:14:09 -0500
From: "Jerry (RESCIND)"
rescindinc.org@GMAIL.COM
http://www.cheneyresearch.com/live
Judy Mikovits PhD will be visiting the Cheney Clinic on Wednesday the 10th of
February to observe an ETM and to discuss an up-coming research collaboration
with Dr. Cheney on XMRV and CFS. She has generously offered to present a talk to
Cheney Clinic Patients and Cheney Research Website
Visitors about her work with XMRV. February 10, 2010; 1:00 PM EST to 2:00 PM
EST.
Note: Sorry I didn't get this out to you sooner but I'm hoping there will be a transcript available at some point. If there is, I'll get the link for you. I try to have 2 newsletters a month but sometimes I'm just not able.
CFS and Fibro E-Newsletter from Adrienne Dellwo
She talks about the "maybes" of living with these disorders, the guilt, debunking the myth of needing exercise, and how people believe that CFS & FM were made up by drug companies.
http://specials.about.com/service/newsletters/chronicfatigue/1266004800.htm
Hope to see some of you at the meeting,
Nancy Henson, Editor and Board Member
****** Our Support Group Leader and Board Members ******
Kebbie Cannon, Support Group Leader and Board Member; Dr. Charles Lapp, Mentor/Supporter and Speaker; Leslie Vann, Treasurer and Board Member; Maggie Reed, Board Volunteer (Dr. List, etc.)
Charlotte ME/CFS/FM Support Group Web Site: www.CharlotteCFS.org
Dr. Charles Lapp Web Site: www.drlapp.net
Whittemore-Peterson Web Site: www.wpinstitute.org
CFIDS Association Web Site: www.cfids.org