DOM'S FMS/CFIDS NEWSLETTER
www.fms-help.com
Our granddaughter and her BFF.
FEBRUARY 21, 2013
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1. READERS WRITE
"Thank you for writing your story www.fms-help.com/fibro.htm. It has been very educational."
"Fighting fibro for years and found your site www.fms-help.com -- fabulous stuff!"
"You do such a wonderful job with the newsletter….thanks for all you do!!!"
2. CFIDS CAUSATION
From a reader--
"Most chronically-ill patients do not know the cause(s) of their illnesses. Knowing causation will not make you better or worse. It really doesn't matter. Illnesses can have treatment options without knowing causation. If someone tells you that they have a headache, you don't argue them that they don't. When I have symptoms, I do not try to convince anyone of them. I stopped seeking validation of CAUSE. I believe in myself. Even most diseases do not have a sole cause. Take lung cancer, I can think of 4 causes just off the top of my head. And, that's a disease. People talk about AIDS as if it's one thing, but did you know that there are 29 different types of AIDS patients? Only every 29th patient is alike. How couldn't there be 29 different types of CFIDS? People need to understand that CFIDS is a waste-basket syndrome diagnosis with 100's* of potential causes."
3. WILD GOOSE CHASE
http://www.cfids.org/archives/2003/2003-2-article05.asp - Snippet: "CFIDS remains one of the most clinically challenging conditions to treat in the health care setting. Many people with CFIDS (PWCs) have tried so many different things to get well that they have worn themselves out emotionally, financially and physically in the process. The ongoing symptoms have often led patients on a wild goose chase searching for a cure. Some may have simply resigned themselves to a life managed with medications. Others continue the quest for healing with varying degrees of success."
4. BE VERY CAREFUL WHEN REPLACING MISSING TEETH
http://articles.mercola.com/sites/articles/archive/2009/08/08/be-very-careful-when-replacing-missing-teeth.aspx - Snippet: "Currently, implants continue to be done without biocompatibility testing, and they are often used in extraction sites where cavitations (inflammation) are already developing. Autoimmune diseases seem to be often aggravated or even initiated by metal implants. Additionally, an event called oral galvanism occurs when you place two dissimilar metals in your mouth. You essentially create a battery that will serve to drive the ions of the metals out of the metal into your mouth and also generate electricity. You may not realize it, but tiny electrical currents are foundational to the way your body operates biologically, and when you introduce a foreign source of electricity, especially one that is constantly there, you can introduce imbalances that can contribute to health problems. This galvanic toxicity created when the metal in your mouth reacts with your saliva can over-stimulate your brain. This is true whether the metal in your mouth is a silver filling, a metal crown, or a metal dental implant. Common signs and symptoms of galvanic toxicity include: A metal taste in your mouth, A sensation of an electric charge when using metal utensils, Chronic insomnia. Finding suitable materials to replace the metals currently used is proving to be a challenge. However, you may now have access to a far better option if you need to have an entire tooth replaced."
5. LOOKS LIKE PEANUT BUTTER & SAVES LIVES
6. WHO GETS FIBROMYALGIA?
http://www.fms-help.com/occupations.htm
7. LORTABS & STOOL SOFTENERS
http://back-pain.emedtv.com/hydrocodone/hydrocodone-and-constipation.html - Lortabs can cause severe constipation - use a stool softener.
8. SLEEP ESSENCE
FROM DOM: SleepEssence is an essential oil product (capsules) designed to help sleep. Have never heard of it before, but the ingredients are similiar to what's in Rutavala oil. I wonder if SleepEssence will work for people like us? (There's only so much $$$ we guinea pigs can throw at our affliction, but we have to find a way to manage it so we can make a living...a catch-22!)
9. LONGEST MARRIED COUPLE IN THE U.S.
http://www.happynews.com/news/252013/longest-married-couple-celebrates-80th-anniversary.htm - Snippet: "The couple from Fairfield, Connecticut, aged 97 and 101 respectively, tied the knot on November 15, 1932, and have since welcomed five children, 14 grandchildren and 16 great grandchildren into the world. Revealing his secrets to a happy and long-lasting relationship, Mr Betar told ABC: 'Get along. Compromise. Live within your means and be content, and let your wife be the boss.'"
FROM DOM: What a wise man! Love it!
10. FIBROMITE FACES HUGE LIFE CHANGES
From a reader--
"I am in the same boat. There is a difference in health between nearly everything in our bodies than in healthy bodies. Prior to the back operation that brought this [FMS/CFIDS] on for me, I was running 12 miles a day. Before we had kids, I was competitive in triathlon running and swimming daily and biking twice a week. One of the most sinister aspects of my challenge is that any energy I exert (like walking from one room to the next) creates an energy deficit that results in time spent recovering. If I try even walking in the neighborhood it punishes me in different ways than when I was in shape and functional. Exercise pain is a good pain that you know will stop when you back off or rest. This pain and fatigue does not stop and is more like being held underwater indefinitely and fighting your way to surface just long enough to gasp a breath and then back under again. This has to be viral. Like you, I am hugely in debt."
11. CALCIUM SUPPLEMENTS LINKED TO DEATH IN MEN
From a friend--
http://www.theheart.org/article/1502993.do?utm_medium=email&utm_source=20130206_heartwire&utm_campaign=newsletter - Snippet: "The debate over the safety of calcium supplements has been muddied with the publication of a new analysis showing that a high intake of supplemental calcium increases the risk of cardiovascular disease (CVD) death in men but not in women [1]. Compared with individuals who took no calcium, men who consumed 1000 mg or more of supplemental calcium per day had a significant 20% increased risk of CVD death, a risk that was driven by a significant 19% increased risk of heart-disease death. For women, however, there was no association between calcium intake and the risk of death."
12. REASONS TO AVOID ROOT CANALS
http://www.lewrockwell.com/orig5/mercola78.1.html
http://www.cdchealth.com/healingdentalcavitations.html
http://www.biologicaldentalhealth.com/component/content/article/105.html
FROM DOM: I'm not sure what the answer is to problem teeth!
13. PAYBACK, YO-YO PATTERN & DOWNWARD SPIRAL
http://www.anxietyzone.com/conditions/chronic_fatigue_syndrome.html - Snippets below:
Payback Effect:
One of the most common and recognizable aspects of CFS is what is called "post-exertional malaise," or, more colloquially, the "Payback Effect." When people with CFS exert themselves, their symptoms get worse afterward. Exertion could be physical or mental exercise, doing routine tasks, such as driving, cleaning, or eating, or handling a stressful situation. The harder the exertion and the longer it lasts, the worse the symptoms will be afterward. The payback effect leads to a few typical patterns, sometimes called "The Yo-Yo Pattern" and "The Downward Spiral."
The Yo-Yo pattern:
The Yo-Yo Pattern happens when people work very hard at some activity, but only on good days. This leads to worse symptoms which prevents them from working for the next few days. When they feel better, they work extra hard to make up for the bad days — or just because they're so excited to feel good — but this leads to them feeling bad again...
The downward spiral:
The Downward Spiral happens whenever feeling bad puts a patient in a situation that makes them feel worse. This is similar to the yo-yo, but in the downward spriral, people don't have time to recover on bad days. Here are some examples:
* A person works very hard one day at work. This makes them feel worse, which leads to them not working as effectively. In order to catch up, they work harder, which leads to them feeling worse...
* A person loses their appetite when they don't sleep well because they're so tired, they don't realize they're hungry. Then, they don't sleep well at night because they wake up very hungry...
* A person does not feel well, and therefore cancels a date with a friend. This leads to them feeling depressed and sleeping poorly, which leads to them cancelling more dates...
Duration:
These patterns can happen over days, weeks, or longer periods. They can happen together (over different periods of time) or alone.
14. FIBROMITE OR PWFM?
FROM DOM: In recent years I have been using the term fibromites to (affectionately) refer to those of us with FMS/CFIDS. I recently sent an email to my Fibro Friends asking if they would rather be referred to as PWFM (Persons With FibroMyalgia)? We are NOT like "normals." Something has gone haywire and we have a strange neuro-endocrine-immune disorder to deal with that affects at least 10 systems of our body. See the Fibrowheel at www.fms-help.com/fibrowheel.htm. (This interesting chart was submitted by a reader who was trying to describe his symptoms to his doctors.) The votes are in and here are the results.....drum roll.....Fibromite (79%), PWFM (17%), Either (4%). Many reasons were given for the way readers cast their votes...some thought that fibromite sounded too much like bugs - others thought it sounded friendly. Some thought PWFM sounded more serious, just like our illness is - yet otheres saw it as yet another complex acronym to remember in an already confused world. Therefore...I have decided to use "fibromite" in friendly conversation with my fellow fibromites, but if I had to write a medical paper or document, I would use PWFM.
15. THE CHRONIC FATIGUE DEBACLE EXPLAINED
From a reader--
"There is an excellent story by Hillary Johnson, the author of Osler's Web, in the March edition of Discover magazine. 'Chasing the Shadow Virus' is about XMRV, Chronic Fatigue Syndrome, and Dr. Judy Mikovits. It is possible to subscribe to the magazine online and get a download of the edition at this link: https://w1.buysub.com/pubs/AG/DSD/DSDDCR_Zinio_Subscription_v2.jsp?cds_page_id=101974&cds_mag_code=DSD&id=1360379786126&lsid=30392116261036587&vid=1&cds_response_key=IF22R or to buy the magazine in person at bookstores or anywhere magazines are sold. The article begins on page 58."
16. THE NEED FOR STATINS
From a reader--
"re" www.fms-help.com/020813.htm - It is all very well for people who don't have high cholesterol to be anti statins, but in my case I don't know what the alternative is. I had a bad stroke when I was 37, have a cholesterol reading of 9.6 My father had massive heart attack at 50. My brother had triple bypass and my mother had angina all her life. I went off my statins for 3 months and tried taking natural medications instead. My cholesterol shot up. When I argued with my doctor about being on anti statins (he is normally very conservative when prescribed meds) he told me to ask doctors what meds they take. I was surprised by this suggestion. I started asking the doctors I know and the reply was statins and an aspirin a day. It really made me think. When I stopped taking my statins, I had no decrease in pain. When your cholesterol leval is so high, neither taking healthy alternatives nor dieting brings it done. I told him I dont mind dying of a heart attack, he asked me how I would feel if I did not die and could not walk to the toilet. I am having 3-5 angina attacks a day. Having gone through the terrible effects of having to learn to walk and write again after my stroke, I now religiously take my statins. Until a safer alternative is found, I have no other options."
17. GARLIC
From a reader--
"I always have to laugh when I read how eating garlic prevents you from catching flu or a cold. I think it is because no one wants to get close to you. We had a woman who worked with us. She use to chew up to 6 cloves of garlic a day - at work. When she climbed into the lift, everyone climbed out!!!!!"
18. BEWARE OF CORTISONE
From a reader--
"My Dad was on cortisone for 2 years. It caused bleeding behind his eye. Could not get to doctor in time and he went blind. Cortisone wonderful for short period. But it changes my personality completely. Had a neighbor whose son went on cortisone every now and then for asthma. I could tell from his behavior whether he was on the stuff or not."
FROM DOM: About 30 years ago at the beginning of my fibro journey www.fms-help.com/fibro.htm, I had an inner ear infection for 3-6 months. My doctor finally put me on prednisone and amazingly the fibro pain let up! I begged for more, but he said prednisone was short term magic, long term tragic (eats up your bones).
19. DOES DAMPNESS CAUSE COLDS & SORE THROATS?
"re: www.fms-help.com/damp.htm - I have to say that even living with fibromyalgia, I have a strong immune system. Living in Oregon can be the ultimate in dampness and cold during winter—and I feel like many times the cold and dampness is going right through me and causing my muscles to ache—but my immune system is strong. I am a mother of 3 kids that can bring home all kinds of viruses from school and I also teach at two community colleges and contact with hundreds of students and sneezing, colds, etc. I credit my immune system strength (in addition to answers of prayer as I just can’t get sick or I will be down for many days) to Vitamin D. I take at least 10,000 of IUs per day. I believe that if you do constantly come down with viruses and it seems as if even a chill makes you sick—it is your immune system. I don’t think all forms of fibro cause a haywire immune system. I am proof of that."
FROM DOM: There seem to be 2 types of people whom I have been referring to as "fibromites" for lack of a better word-- those who get viral sickness easily (CFIDS patients) and those who don't and mostly have pain, sleep and CNS difficulties (FMS patients). Since I have both FMS and CFIDS, I think this is the difference between them. My FMS onset was 1982 (after years of prolonged stress and insomnia), but my CFIDS onset was 5 years later in 1987 (after a serious viral illness).
20. GRAPEFRUIT TEA
From a reader--
"I can relate to this about dampness causing colds at www.fms-help.com/damp.htm. I want to share with you a recipe that helps me alot. I have not had a cold nor flu for two years, only sniffles. I was very sick two year ago with a very bad cold that lasted two months, my husband had it too but he got well within three weeks. He remembered that his mom use to make grape fruit tea. All you do is clean it up real well and slice it up and put it in an enamel sauce pan (Skin peel included)
with two cups of spring water. Bring it to a boil and let it cool, get a mash potatoes masher and get all the liquid out of it.
strain and drink it like tea,better if its warm. When I had my first cup, I swear that that's when I started to get well and have not so far gotten sick, If I get a chill i make this tea right away. Its very soothing, you can sweeten with stevia. I drink it straight.
The main beneficial ingredient is in the grape fruit skin. I take care that I always cover up when I go outside."
FROM DOM: I don't do well with citrus (seems to make viruses worse), but my dad used to make a concoction of hot water, lemon and honey that worked for him.
21. PSORIASIS & ANXIETY FADED AWAY BY INHALATION OF LAVENDER OIL
http://www.oil-testimonials.com/essential-oils/8231/psoriasis-and-anxiety-faded-away-by-inhalation
FROM DOM: I love essential oils for so many reasons. A list of the ones I use and why is at www.fms-help.com/oilsstore.htm. There are thousands of testimonials by subject at www.oil-testimonials.com/905788.
22. ROSACEA & FISH OIL
From a reader--
"Has anyone used Fish Oil or Moxxor (mussel from New Zealand) for rosacea? What kind of results did they have? What dosage did they use?"
FROM DOM: Write dombush@bellsouth.net with replies.
23. FIBROMITE EXHAUSTED AFTER HAVING BABY
From a reader--
"I have fibromyalgia and had a baby 3 months ago and am struggling with managing my pain without feeling like a zombie. Have you heard of taking a bee pollen supplement? My struggle is finding a medication that doesn't leave me tired. My daughter is a wonderful sleeper but still gets up once a night. I also wake up frequently during the night (sounds from the monitor, checking on her, etc). I am doing "okay" since I have a mild case of FM but I would love to start feeling better. I was taking 500mg of Naprosyn 2x a day and 5mg of Flexeril 1x a day (used to take it 3x a day, but exercising, losing weight and being in better shape helped me wean down). After I had the baby I resumed this regimen but the Flexeril left me too tired. Naprosyn is an NSAID and I don't want to take it long term, especially since my doctor requires blood work every 3 months. I only gained 30 pounds while pregnant and have lost most of it, but am struggling with the last 5-10 pounds. The number on the scale doesn't matter as much as the way my clothes fit. My biggest desire is to have enough energy to get back into an exercise routine, but I have just been too tired."
FROM DOM: I have one reference to bee pollen in past newsletters at http://fms-help.com/011210.htm. I also see it is mentioned in Joe Elrod's book, "Reversing Fibromyalgia" - see the snippet at http://books.google.com/books?id=az2G6N7AzcYC&pg=PA111&lpg=PA111&dq=bee+pollen+fibromyalgia&source=bl&ots=wQznKo0ZeX&sig=40yVANt8fh9Unsil-f6KE0zuU7o&hl=en&sa=X&ei=-scbUY_CCYni2AX0y4CwBg&ved=0CD0Q6AEwAA#v=onepage&q=bee%20pollen%20fibromyalgia&f=false. Anyone with advice for this new mom with mild fibro? Write dombush@bellsouth.net.
24. FEAR, DREAD & STRESS
From a reader--
"I am so aligned with your fear of letting go of sleep meds. There is a catch-22 to letting go of any meds but I think you have solved the puzzle if Rutavala turns out to work well. The secret to cutting back a med (with a goal of cutting to zero someday) is to start sleeping better. This way you don’t really miss the meds if you are still able to sleep. There is a serious psychological challenge with this condition. I find the fear, dread, and stress of something planned is far worse than the thing itself. I was watching TV the other day when they had an ad for a person with Crohn's (I have this set of symptoms as well but not diagnosed yet). He was in an airplane wondering if his symptoms might suddenly turn on. This is such a huge problem for those of us who struggle with these physiological problems that finding peace and trying to establish the slightest confidence is overwhelming. Because of the damage to my autonomic nervous system my mind does not receive messages from my body in the usual fashion. I eat when those around me do but am rarely hungry (to the contrary we now think a migraine element may explain why food is often a negative to me in smell and taste). The fear of something going wrong contributes in some part to me rarely leaving my home. The same kind of fear hits us when we consider pulling back on any medicine. We see ourselves as just barely hanging on and at any time possibly falling back to a 100% crashed mode of inactivity. This sets us up when it comes to meds. The secret is the one you are uncovering; find a way to achieve some positive result and don’t commit to getting rid of any meds but instead commit to using this new remedy. After a while shaving down one pill to 75% of its normal strength and holding there for weeks before shaving or cutting down further is not too terrifying. It is really hard for us to find stasis in a fast-moving world of healthy people. I think we need baby steps. I would love to be rid of all sleep meds but more than that I would love to sleep so this problem cannot be solved until a new way to sleep is uncovered. Hang in there. Rutavala is sounding very positive!"
FROM DOM: I can so relate to what this reader has shared about anticipatory anxiety, based on our past experiences. He is the author of the Fibrowheel (fascinating chart) at www.fms-help.com/fibrowheel.htm.
25. DOES THE HERPES VIRUS CAUSE FIBROMYALGIA?
From a reader--
"Heard on radio today that they believe the herpes virus is causing fibro. I did not catch all of it but a drug is coming out soon for it. Have you heard such?"
FROM DOM: Yes. This topic was in one of my newsletters last year, but I can't locate it now in my computer. However, I found these sites with info--
http://chronicfatigue.about.com/b/2012/09/12/is-herpes-virus-connected-to-fibromyalgia.htm
http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1366472
http://forums.phoenixrising.me/index.php?threads/is-fibromyalgia-caused-by-%E2%80%98cold-sore%E2%80%99-virus-researchers-bet-it-is.19248/
26. DR. BEN CARSON
http://www.youtube.com/watch?feature=player_embedded&v=PFb6NU1giRA
FROM DOM: Dr. Ben Carson, director of pediatric neurology at Johns Hopkins for 33 years, brings some sense to Washington in his speech. Raised by a single mother in poverty, Dr. Carson has a lot to say. He and Mrs. Carson have an organization that has given 5,200 scholarships to date: http://carsonscholars.org/about/our-impact. Dr. Carson thinks that intellectual kids should be rewarded as much as their athletic peers. (Amen!)
27. DO STATINS EXTEND LIFE?
From a reader--
http://www.drbriffa.com/2013/02/12/can-statins-extend-life-and-if-so-by-how-much/ - Snippet: "The model estimated that statin therapy increases average life expectancy in the study population by 0.3 years and average CVD-free life expectancy by 0.7 years……These findings suggest that statin therapy can lead on average to small gains in total life expectancy and slightly larger gains in CVD-free life expectancy among healthy individuals,……Whether communication of personalized outcomes will ultimately result in better clinical outcomes remains to be seen, however, because patients may be less likely to choose statin therapy when provided with more information about its likely benefits. These last words utterly sum up, I think, how it is in the real world: when individuals are informed about the true facts about the likely benefits, hardly without exception they take a pass. And that’s before we even get to talk about the potential side effects such as fatigue, muscle pain and memory loss."
FROM DOM: Hmmm. Fatigue, muscle pain and memory loss? Sounds too much like fibro symptoms.
28. WATER FLUORIDATION DESTROYS
http://articles.mercola.com/sites/articles/archive/2013/02/16/fluoridegate-water-fluoridation.aspx
29. RUTAVALA & SLEEP
FROM DOM: My experiment with Rutavala is going wonderfully well! I am sleeping peacefully at night and cutting back on my sleep meds! This is the first essential oil that has ever affected my sleep. It affects the hypothalamus gland in the brain and evidently called down my nervous system. I use Rutavala this way: put a couple drops in left palm and apply with right hand fingers to brain stem, ear lobes, under jaw to chin, and a bit on my temples and forehead. It's been nothing short of miraculous for me. Don't know if it will help anyone else, but you can read about Rutavala and insomnia at http://www.oil-testimonials.com/aromatherapy.php?t=basic&q=rutavala%20insomnia.
30. ASPARTAME LINKED TO CANCER
http://articles.mercola.com/sites/articles/archive/2013/02/18/aspartame-toxic-effects.aspx - Snippet: "The longest-ever human aspartame study, spanning 22 years, found a clear association between aspartame consumption and non-Hodgkin’s Lymphoma and leukemia in men; leukemia was also associated with diet soda intake in both sexes. Despite this, beverage manufacturers continue to misleadingly describe this artificial sweetener as safe. Coca-Cola, for instance, notes that the methanol produced by aspartame is similar to that found naturally in fruits and vegetables, but in the latter case it is firmly bonded to pectin, allowing the methanol to be safely passed through your digestive tract. When methanol is consumed via aspartame, methanol is free to break down to toxic formaldehyde, and humans are incapable of converting the toxic formaldehyde into harmless formic acid (unlike other animals). Coca-Cola also claims there is no biological explanation for why aspartame might cause headaches, when in fact it’s known that in humans, the methyl alcohol from aspartame travels through your blood vessels, like a Trojan horse, into sensitive areas where it is converted to the toxic poison formaldehyde."
FROM DOM: About 30 years ago, a chiropractor told me to avoid aspartame (such as in Crystal Lite and diet sodas), because it shuts down your glands from functioning correctly - even in small amounts. Here is a long list of the side effects caused by aspartame consumption: http://www.sweetpoison.com/aspartame-side-effects.html.
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Well, I've got lots more to share - some fascinating stuff has come to my attention this week - but it will have to wait until next time! This newsletter is long enough!
'Til next time,
Dominie
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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.
