At a wedding 11 years ago - how time flies!
OCTOBER 4, 2010
A Christian-based newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.) - and their families.
MY FIBRO STORY MY CFIDS STORY MY INSOMNIA STORY LIST OF HELPFUL THINGS PREVIOUS NEWSLETTER DOM'S ARCHIVES
21 TOPICS below. Don't miss the RED ones. Readers comments in BLACK. My comments in TEAL.
1. READERS WRITE
"I am an avid reader of your newsletters www.fms-help.com/newsletters.htm, and they are loaded with great and useful information!!!"
"I was finally diagnosed with fibromyalgia this week. Since then I have spent a lot of time researching this condition with an increasing level of alarm as I start to realise the full impact it is already having on my life and my fears for the future. I found your website www.fms-help.com extremely helpful."
"Thanks for your incredibly informational newsletter. Such a variety of information!"
"Thanks for all you do to educate us."
2. SULFUR DEFICIENCY
From a reader--
http://healthjournalclub.blogspot.com/2010/09/could-sulfur-deficiency-be-contributing.html?utm_source - Could sulfur deficiency be a contributing
factor to obesity, heart disease, alzheimer's and chronic fatigue
syndrome? [Sulfur] is an essential nutrient and necessary for formation
of specific amino acids. As such it is also necessary for a large number
of enzymes. A recent
study for instance found a sulfur deficient diet to be
associated with decreased glutathione levels in the
brain. While the basis for the particulars of the theories in
this post remain speculative, it is curious to consider that so little research
has so far been done in this area.
3. ZOPICLONE FOR SLEEP
Please reply to Lorraine email@example.com--
"I am wondering if your next newsletter you can ask your readers for feedback if any of them have used zopiclone for sleep issues. I am so against prescription medication - I have used 3 other rx meds for sleep and they did nothing for me. Now I am being badgered by a friend (who is a nurse) to get on something like Zopiclone. Help!"
FROM DOM: Zopiclone is also known as Imovane and is similar to Lunesta http://en.wikipedia.org/wiki/Zopiclone. I sympathize with this reader, having had a sleep disorder since I was 16 www.fms-help.com/insomnia.htm. A list of things I've tried for sleep is at www.fms-help.com/sleep.htm. A list of things I use now (and I get restorative sleep nearly every night) is at www.fms-help.com/what.htm. Everyone is different in how their body responds to sleep meds. What works for one doesn't necessarily work for another, and it takes experimentation to find what can help.
4. ELAVIL FOR PAIN
From a reader--
"I want to let you know about a medication prescribed off label for chronic pain (and you are probably already aware of this since doctors have been using this for a long time). My Dr. prescribed Elavil 25mg daily for chronic pain. It is a tri-cyclic antidepressant prescribed off-label for chronic pain. After taking the medication for only about two weeks, I started to feel much better. Don't misunderstand me--I still live with chronic pain and all those horrible debilitating symptoms and syndromes that accompany FM/CFS, but just to a lesser degree. I do feel a difference. One major downside is it does cause increased appetite (weight gain). I have always been pretty much a fitness buff most of my life trying to eat healthy and maintain a healthy weight and exercise within our means (with CFS), but believe me, I would rather trade off a few extra pounds rather than being in such debilitating pain I was in before. That says alot!!"
FROM DOM: Elavil (amitriptyline) was one of the first meds I tried for sleep and fibro problems, but I got very depressed on it. It's strange how meds work differently on different folks. We need to experiment until we find what helps us as individuals. My personal list of things that help, after 28 years as an FMS/CFS guinea pig, is at www.fms-help.com/what.htm.
5. READERS' PRAYER CORNER
Jennifer - "Can all of you fellow fibromites please keep my younger brother and his family in your prayers? Their 10-week old baby girl unexpectantly passed away last week. Please ask for strength and wisdom as they deal with the loss of their sweet little girl. There were planning to bring her home yesterday but buried her instead."
A Vision for Prayer - from Joni Eareckson Tada's daily devotional
- www.joniandfriends.org (used with permission by Joni and Friends International Disability Center)
"But the Lord said to me, 'Do not say, "I am only a child." You must go to everyone I send you to and say whatever I command you. Do not be afraid of them, for I am with you and will rescue you,' declares the Lord. Then the Lord reached out his hand and touched my mouth and said to me, 'Now, I have put my words in your mouth. See, today I appoint you over nations and kingdoms to uproot and tear down, to destroy and overthrow, to build and to plant.'" - -Jeremiah 1:7-10
What a grand-scale vision is today's reading! Uprooting nations and kingdoms? Destroying and overturning realms? Building and planting in remote corners of the earth? Little wonder we quiver and whine, "That's not for me, I am only a child."
But God is with you as you grab hold of this magnificent vision. That's right, God has appointed you over nations and kingdoms. He has appointed you to uproot and tear down... through prayer! God will touch your mouth and give you the words to intercede for the nations of the world. If you can't actually serve on the foreign mission field, you can travel there through prayer.
The world is starving for your prayers. And the Devil is terrified of them. So don't let Satan shrivel and shrink your vision down to a size which he finds more manageable. If your heart needs to get pumped up, read Jeremiah 1:7-10 one more time and rejoice over God's vision for you to reach the world through prayer!
Dig out an old National Geographic map and thumbtack it opposite your desk to remind you of God's grand-scale-vision to reach the world with His love. Ask Him to fill your mouth with intercessions and then start building and planting through your prayers.
From a reader re: www.fms-help.com/092810.htm--
"Whether fluids are given or not during hospice care is an individual issue, I think. Often it is a matter of the patient’s condition. I engaged hospice for each of my parents when they approached death. My mother simply could not tolerate much liquid and no solid food. I was worried about the lack of liquids but our nurse friend said it is the body’s natural way to die. We simply could not give her liquids because she would gag and cough and suffer. The unfortunate thing was that she refused medication of any kind from the beginning, and once we were able to get her a pain medication pump, she had dehydrated so much that the pain medication was not able to be absorbed into her tissue and did not control her pain. My father had dementia, and I learned that in the end stage of dementia the esophagus does not work properly to let down food or water. He could not eat more than a few bites. He was able to drink a bit in his last months, but began to choke or cough. In the end, he could not take anything by mouth. The efforts of the nursing home staff to get him to eat over the last months added to his suffering unnecessarily. He had in writing that he wanted no feeding tubes, so once we engaged hospice, we instructed the nursing home staff that he was not to be given any medication or food/liquid by mouth. It was simply a way to let him rest and keep him comfortable.
I would recommend to everyone that if there is a possibility of needing hospice, research the hospices available in your area so that you can call the one you want as soon as you know that the loved one has a terminal illness or is in final decline. The hospice will come and do an evaluation, so you don’t have to make the decision whether it is time or not. Doctors often do not mention engaging hospice until very late in the process, but you can ask for their opinion or request an order for an evaluation at any time. The major decision is whether there will be an attempt to cure the loved one. If no cure is available for their condition, the next qualification is how long the loved one is expected to live. The qualification for hospice is that the loved one is not expected to live for longer than 6 months, but some live longer than that and are still qualified. The sooner hospice is engaged, the better for the family and loved one, because comfort measures can be put in place before pain gets out of control. In addition, hospice serves the family members. Hospice not only helps with care of the loved one but also educates and helps prepare the family members for the death. Many people do not realize that hospice provides free counseling for family members for one year after the death of the loved one. I found that most beneficial. If the loved one is insured by Medicare, all the medications and services of hospice are paid for by Medicare. Hospice, however, was designed for home care. So if the loved one is in a nursing home, hospice will direct the care, but room and board in the nursing home is not covered by Medicare. Some areas have palliative care available in local hospitals. This can be an option for care instead of hospice if the loved one needs more complex care or if the decision has not been made for comfort care only.
Every adult, no matter what age, should make their wishes known to their families and doctors regarding care for the last months of life, assign medical power of attorney, set up general power of attorney for business matters, make wills, etc. To do this work and keep the papers up-to-date is a loving thing to do for your family members. You do not need to have an attorney to make a living will, and many states accept legal forms that can be purchased inexpensively or downloaded from the internet. I have spent the last 13 years as caregiver for members of my family. It is hard enough to be a caregiver; without proper paperwork and pre-made decisions, it is nearly impossible to endure. One of our adult daughters did not provide for herself with legal paperwork, and my husband and I suffered for it. Unfortunately, her sudden death without proper legal paperwork set her all her loved ones against each other and demolished her treasured privacy."
8. CUTE DOG & CAT VIDEOS
From a reader--
http://purinaanimalallstars.yahoo.com/?v=8280670&l=100000085 - Purina Animal All Stars - This will brighten your day tremendously!
FROM DOM: Wow! Is this ever a change from the mentality of most Americans! www.holycrosslivonia.org/amish/amishfaq.htm#bandw - Snippet: "Self-employed Amish do not pay Social Security tax. Those employed by non- Amish employers do pay Social Security tax. The Amish do pay real estate, state and federal income taxes, county taxes, sales tax, etc. The Amish do not collect Social Security benefits, nor would they collect unemployment or welfare funds. Self sufficiency is the Amish community's answer to government aid programs. Section 310 of the Medicare section of the Social Security act has a sub-section that permits individuals to apply for exemption from the self-employment tax if he is a member of a religious body that is conscientiously opposed to Social Security benefits but that makes reasonable provision of taking care of their own elderly or dependent members. The Amish have a long history of taking care of their own members. They do not have retirement communities or nursing homes; in most cases, each family takes care of their own, and the Amish community gives assistance as needed."
10. GREAT FIBRO SITE
From a reader--
http://www.healthetreatment.com/condition/fibromyalgia/ - Extremely interesting but concise page about fibromyalgia with charts and facts about symptoms, and various drugs people have tried.
11. ANTIBIOTIC-RESISTANT DISEASES
From a friend--
http://articles.mercola.com/sites/articles/archive/2010/09/29/is-this-the-end-of-antibiotics.aspx - Deadlier than AIDS.
12. MERCURY FILLINGS
From a reader--
"I keep seeing articles about fillings possibly causing fibro but I had fibro before I ever had amalgam fillings. And my amalgam fillings have long since all been replaced (because they had gotten too old or ugly, not because I thought they were making me sick), but I have had worse crashes after they were gone than when I still had them."
FROM DOM: I have discussed amalgam fillings in many past newsletters www.fms-help.com/newsletters.htm. My mail continues to run 50/50 as to whether amalgam removal helps ones health to improve or not.
13. DENTAL FEARS & HYDROGEN PEROXIDE
From a reader--
"I put off going to the dentist so long out of fear that I lost a couple of important teeth. Their loss was worse than the pain and fear! Now I take a little bit of valium before I go, just enuf to take the edge off. It's not only easier on me, it's way easier on the dental staff too! I also got a grip one day in the dentist's office and told myself to grow up -- after all, it's just emotion left over from the past. It helped! (But I couldn't do as well without the valium.) I have a great dentist who is very sensitive to my stress and does everything in his power to help. I would say to you, don't worry about your fillings but do whatever you must to keep your teeth healthy. Do you gargle with hydrogen peroxide? It kills germs, whitens your teeth, keeps the plaque down and freshens your breath. I haven't had my teeth cleaned professionally many times in my life -- dental hygiene wasn't "invented" untill I was nearly 40 and even then, dentists didn't push it the way they do now. But peroxide is a cheap effective substitute for me."
14. CAUSES OF FIBROMYALGIA
From a reader--
"I had fibro before we were cooking in plastic containers, before fluoridation, teflon and non-stick pans, and most other things people want to blame fibro on. For me, I believe I probably became sensitized by certain severe traumas and poor nutrition as a child (I was born in the Depression and raised in the 1940s when food was scarce), then it became full-on fibro from stresses, injuries and illnesses throughout my life. I have gotten rid of household chemicals, plastic containers and non-stick pans, I eat organic vegetables, I avoid prescription meds, I try to keep the dust down in my house, and do all the other things that might improve my health but I have never thought they were the cause of my fibro nor that eliminating them would cure me."
FROM DOM: See my page about the CAUSES of fibro at www.fms-help.com/causes.htm.
From a reader--
http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=15622&B1=EM092910B&slvor=10483.1016622.214.171.124.70277&eid - CFS patients with XMRV show response to Ampligen in trial study. CFS is a severe disorder consisting of profound fatigue and a variety of other debilitating symptoms that affects up to 4 million Americans. Recently, DNA was identified from a human gamma retrovirus (XMRV) in 67% of CFS subjects. Evidence also suggested that approximately 50% of the CFS subjects mounted a specific antibody response against XMRV (Science 326, 585-589 (2009))
16. KETAMINE COMA FOR RSDS
From a reader--
"Here are two websites of 2 young women with RSD (now called CRPS). Emma Orange is currently in Mexico undergoing the ketamine coma treatment (she has had a few complications already): http://emma-recovery.blogspot.com/ Katie is trying to raise funds to do the coma treatment. She has undergone the inpatient ketamine treatment and outpatient boosters while awaiting the coma procedure. http://setktfreefromrsd.com/Caringbridge/caringbridge.html" - Thhe Ketamine Coma Study is a procedure being conducted in Mexico. It is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatments. During this procedure, patients are put into a ketamine-induced coma-- essentially shutting the body down & giving it time to "reset" the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU. For many, it has been a miracle! However, like any treatment, there are no guarantees. There are also significant risks. Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain.... Some of the patients wake up pain free and stay pain free. I have seen people with RSD/CRPS come out of Dr. Kirkpatrick's infusions pain free after a 3 day infusion.... The doctors have come to the consensus that RSD/CRPS I & II are both due to nerve injuries/compression/neuromas. If they can identify and fix the nerve injury (the source of the pain) the pain will often go away. But sometimes, even when they fix the injury the pain remains as it become a CNS (Central Nervous System) problem and a drug like ketamine can be helpful. http://www.jbppni.com/content/4/1/1 & http://www.painphysicianjournal.com/2010/july/2010;13;379-387.pdf.
FROM DOM: RSDS (CRPS) is severely painful - see http://www.rsds.org/2/what_is_rsd_crps/index.html:I reported on ketamine coma treatments for patients with whole-body RSD in recent newsletters - visit archives at www.fms-help.com/newsletters.htm.
17. PROCESSED MEATS TOO DANGEROUS FOR HUMAN CONSUMPTION
From a reader--
http://www.totalhealthbreakthroughs.com/2007/12/processed-meats-declared-too-dangerous-for-human-consumption/ - Snippet: "
In closing, I am feeling well for a fibromite these days, but still have to manage stress carefully. Not easy for a workaholic....ha! Planning the annual fall recital for my piano and guitar students to be held on October 15. Grateful to be serving the Lord in music (piano/organ) at our church, where we are abundantly blessed by the teaching and preaching of God's Word! Weather here in Florida is finally cooling a bit - a great relief from living in a sauna!
'Til next time,
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DISCLAIMER: I am not a medical doctor. I am a fibromyalgia / chronic fatigue syndrome survivor. The purpose of this website is not to diagnose or cure any disease or malady, but is presented as food for thought. This information cannot take the place of professional medical advice. Any attempt to diagnose and treat an illness should come under the direction of a physician. No guarantees are made regarding any of the information in this website.