July/August 2009
Hi everyone!
I hope you are all enjoying your summer and getting out and about. We are meeting through the summer as normal. In September we will be having a guest speaker from Tamarack Wellness Center on aquatic therapy, massage therapy and how they can help CFIDS and fibromyalgia. As of now, we are keeping our normal meeting room for this, however, we might possibly combine with another support group for this meeting and if we do the room location could change. I will try to contact people if that happens but there will be a big sign downstairs in the lobby if the room location is different.
The newsletter is now every two months and I’m hoping I can keep it that way and not have to move it to once every three months!
A big thank you to Glenn Harrington and Cheryl Byer for their donations! Between the two of them, they covered three months of meeting room rentals and the costs of this month’s newsletter mailing! I also want to thank everyone who has given me donations at meeting times. It is greatly appreciated and really helps. A little goes a long way!
I am looking to begin the 501c3 application status, which would make us a non-profit and thus able to solicit larger donations from businesses, as well as make donations tax-deductible. If anyone knows anything about the experience, has legal experience or knows someone who does who would be willing to donate their time or do it for a drastically reduced fee, please contact me. ____________________________________________________________
Overview on POTS from the Dysautonomia website.
The full article with citations can be found at http://www.dinet.org/pots_an_overview.htm (Ed note: 96% of CFIDS patients and about 60% of fibro patients suffer from some form of dysautonomia, and yet few doctors and few patients are aware of what it is.)
Standing up is something most of us take for granted; we've been doing it since childhood. Our bodies automatically adjust to the pull of gravity by increasing vascular tone, heart rate and cardiac output. Blood vessels contract, heart rates increase and our systolic blood pressure remains the same or decreases slightly while diastolic pressure increases slightly (Brunner & Suddarth, 2000, p. 546). Our bodies operate in perfect homeostasis and we stand up with little effort.
However, the simple act of standing up can be a challenge for some people. There are disorders that affect the body's ability to appropriately adjust to the pull of gravity. When the body cannot effectively adjust to upright posture, a person is said to have orthostatic intolerance. Postural orthostatic tachycardia syndrome (POTS) is a disorder characterized by orthostatic intolerance.
Postural orthostatic tachycardia syndrome is defined by excessive heart rate increments upon upright posture. A person with POTS will experience heart rates that increase 30 beats or more per minute upon standing and/or increase to 120 beats or more per minute upon standing (Grubb, 2000). These exaggerated heart rate increases usually occur within 10 minutes of rising.
While the hallmark of POTS is an excessive heart rate increment upon standing, patients often exhibit numerous symptoms of autonomic nervous system dysregulation, and research by the Mayo Clinic suggests POTS is a limited autonomic neuropathy (Thieben, Sandroni, Sletten, Benrud-Larson, Fealey, Vernino, Lennon, Shen & Low, 2007). Many POTS symptoms seem to be caused by an imbalance of the autonomic nervous system's control over blood flow. It is the autonomic nervous system (ANS) that regulates the needed adjustments in vascular tone, heart rate and blood pressure upon standing. Some of the messages coming from the autonomic nervous system tell the blood vessels to relax or tighten. In people with POTS, the system seems to be out of balance and blood is not going to the right place at the right time to do what the body needs (Fischer, 2007).
The autonomic nervous system is responsible for regulating a multitude of organs and functions throughout the body. Some of these functions include temperature, respiration, pupil dilation and constriction, salivation and the digestive tract. A patient experiencing ANS dysregulation may experience abnormalities in the many organs and functions the ANS regulates. For example, around one third to one half of POTS patients have digestive troubles (Fischer, 2007). The problem is that blood flow is not matching the need, so blood is not going to the right part of the intestinal system when it needs to.
People generally develop POTS after becoming sick with a virus, giving birth, or being exposed to great bodily stressors (i.e. surgery, trauma or chemotherapy). Some people have had POTS their entire lives.
The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person (Grubb, 2002). It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients' quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Twenty-five percent of people with POTS are disabled and unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002).
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The Fibromyalgia/CFIDS Camping Checklist
I camped a few times as a child and hated it- I never
slept good, I hurt all over, and my allergies bugged me non-stop (hmmm…sounds
like fibro/CFIDS, doesn’t it?). But I
wanted our children to be able to experience it and my husband has great
memories with it, so we went, and I not only enjoyed it, but didn’t flare too
horribly the next day. I found this
camping list for fibro/CFIDS online at http://chronicfatigue.about.com/b/2009/07/11/the-fibromyalgia-camping-checklist.htm
. Lane County has many ADA accessible
parks and even some with hot showers! Check
with Oregon State Parks and Recreation, the BLM, and the Lane County Parks and
Recreation for their different listings.
· Multiple changes of clothing that can be layered. That way I can adjust my temperature based on both the weather and my internal thermostat (which is broken) and avoid temperature-related symptom flares.
· Good bedding. A scratchy or cold-feeling sleeping bag, or one that wrinkles up underneath me, would keep me up all night. I'm fortunate that the soft, cozy one I use also has an "escape hatch" for my feet, so they don't get overheated. And forget those little camping pillows -- I take the good one that I use every night. (ed note: We got a thick air mattress that was wonderful- it was like sleeping on a bed. I think that was the #1 factor in waking up feeling semi-decent).
· Non-typical mosquito repellent. Spraying chemicals all over my body does bad things, but so does my mosquito allergy! On our last excursion, I used one of those new clip ons and was very happy with it. I also had success with a friend's homemade, all-natural spray. (If you'd like the recipe, let me know -- I'm sure she'd share!)
· Allergy medications & topical creams. I take 24-hour Zyrtec (cetirazine), but I make sure to have Benadryl on hand in case I find a new allergy. The cream is for mosquito bites and scratches from plants that make me itch -- which I think is most of them. (The Benadryl is also good for insomnia.) Also, I make sure to have TWO asthma inhalers in case one runs out.
· Non-smelly muscle creams. Sadly, I have to leave my Capzasin and Tiger Balm at home because they can attract bears and other unwanted close encounters. Aspercreme, for me, works almost as well without the strong food-related odor.
· Ice packs. Because some of my pains only respond to ice, we put several ice packs in our coolers. They help keep the food cold, and I can use them as needed.
· Plenty of hot drink options. I always take tea for the mornings, but I make sure to have some decaf options to warm me up at night.
· The entire medicine cabinet. The one thing I leave at home will be the one thing I need, so everything comes with me.
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The Lane County Chronic Fatigue Syndrome and Fibromyalgia Support Group is a non-profit, non-partisan educational, support, and advocacy group for patients who have CFIDS and/or fibromyalgia. We are members of both the CFIDS Association of America and the National Fibromyalgia Association, and we are registered with the Fibromyalgia Network. We do not have 501c3 status at this time and donations are not tax deductable. This support group will meet every 4th Saturday from 3:30-5 at the Eugene Public Library. The group will meet in the Singer Room if possible but this is subject to availability. We do not charge membership fees or anything else for this group; however, donations to help with costs are always appreciated. Donations can be sent to the address listed below.
You have received this because you have shown interest in the support group. If you no longer wish to receive updates or information, please email lanecountycfsfibro@yahoo.com and put “unsubscribe” in the subject line, or call the phone number listed below to request to be removed from our mailing list.
Lane County Chronic Fatigue Syndrome and Fibromyalgia Support Group
3092 Delta Pines Drive
Eugene, OR 97408
(541) 341-1355
lanecountycfsfibro@yahoo.com
