Dom's FMS/CFIDS Newsletter

This was a "glamour photo" of me taken in 1993 at age 41. I was was suffering from fibromyalgia, which began when I was 30, and CFIDS which began when I was 35. ["But you don't LOOK sick!"]
March 29, 2011
A Christian-based newsletter about Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E.) - sharing thoughts, research and experiences.
FIBRO STORY CFIDS STORY INSOMNIA STORY HELPFUL THINGS I USE PREVIOUS NEWSLETTER ARCHIVES
Topics in this issue - scroll down to read: 1. READERS WRITE 2. FASTING TO REGAIN HEALTH 3. DENTAL ADVICE 4. FMLA RECERTIFICATION 5. PACING YOURSELF FOR SPECIAL EVENTS 6. VALCYTE FOR CFS 7. YOUTH WITH FMS/CFIDS 8. GETTING MARRIED WITHOUT CRASHING 9. CFIDS ASSOCIATION OF AMERICA 10. READER'S PRAYER CORNER 11. SPINAL FLUID ANALYSIS DISTINGUISHES BETWEEN LYME & CFS 12. WHY NO LOOTING IN JAPAN? 13. WHEN MARRIAGE HURTS 14. DISABILITY 15. BOOMERANG ILLNESS 16. ACID/ALKALINE FOOD CHART 17. FOOD-COMBINING CHART 18. FREE SAMPLES OF TOPRICIN & ENTER KINDLE CONTEST 19. EARTHING 20. FIVE COMMON "NO-NO'S" FOR PEOPLE WITH FIBROMYALGIA
6.
VALCYTE FOR CFS From a
reader-- http://desivalcyte.blogspot.com/search/label/Months%205-6%20on%20Valcyte - one CFIDS
patient's experience with Valcyte. More from same reader--
"This is the package insert on
the FDA approved drug Valcyte that is being used on CFS Patients. It is
also used on AIDS Patients. In reading about the drug Valcyte it is a very
toxic and can be lethal . It can kill you. I do not understand how
anyone with "severe" CFS could ever take this drug and live through the program
for taking it. Just reading about this drug and what it can do to anyone
taking it....makes me feel sicker. I do think it is good to have the drug
insert to read for anyone considering to try it. I know I could never
survive this drug. I am too weak and have too many complications.
But it might help some people in certain situations that perhaps have not been
sick for so long and not advanced to having such a severe case of CFS as those
of us that have had this for a really long time and are just struggling to
survive daily. Even though I do not think there is any doctor that would
even consider using this drug on me because of the condition I am in, and
I certainly do not want to take the huge risk.....I do think it is still
good to be informed and aware of everything that is going on and is available
for and about CFS. Knowledge is power. See web address: www.gene.com/gene/products/information/valcyte/." Response to the above comments from a reader-- "This information about valcyte is totally inaccurate at borderline outrageous. Calling a drug lethal, and telling people it can kill you is harmful to vulnerable ears. Referencing it as something AIDS patients use is also damaging. AIDS patients use tylenol as well should we not use tylenol as well. The package insert for aspirin states that if used improperly it can be lethal as well. Only an alarmist would focus on this aspect and not the potential benefits. This reader stated that she did not understand how anyone would make it through the program. How about the ones who have not only made it but are 100 percent healed, no more cfs. Yes, especially the ones with severe cfs. I just think it is irresponsible to state such views to potential valcyte patients or ones who have been healed by valcyte. The research speaks for itself. Look into Dr. Montoya's work. People are getting well and there is no set program. Doctors put their sickest most severe patients on valcyte because these are the ones who respond. Saying there are no doctors out there who would use this drug on you (untrue, more severe CFS'ers are prime candidates) or saying one would not take this huge risk is ignorant. Huge risk??? Yes valcyte is a known carcinogen in lab animals not in humans. It has not caused one human death and if monitored closely and properly valcyte imposes very little risk. Considering cfs is now being linked to XMRV and noting that the treatment is antiretroviral drugs for a patient's lifetime, I think valcyte is the innocent bystander. It was important for me to say this because I am one who is being helped by valcyte, a long standing cfs patient. I am sure the intention is not fear mongering, but I think without being a medical doctor or having research to back up such statements they can be potentially harmful to folks. As a patient, and a mental health professional I felt it necessary to state the above." 7. YOUTH WITH
FMS/CFIDS From a
reader-- http://offerutah.org/youthinformation1.htm FROM DOM: Also see my page about
children and teens with fibromyalgia and chronic fatigue syndrome:
www.fms-help.com/teens.htm.
8. GETTING MARRIED WITHOUT
CRASHING One bride's story
who has CFIDS-- http://desivalcyte.blogspot.com/2011/02/getting-married-without-crashing.html 9. CFIDS ASSOCIATION OF
AMERICA http://cfids.org/ - we are not
alone. 10.
READERS' PRAYER CORNER Don -
Newsletter reader lost his beloved mother recently. He has serious health
problems and needs strength to cope with the many things that must be
done now, after a loved one passes away (difficult enough when one is well,
but terribly stressful when you are sick). 11. SPINAL FLUID ANALYSIS DISTINGUISHES
BETWEEN LYME & CFS From a
reader-- http://www.prohealth.com/library/showarticle.cfm?libid=15959 - Snippet: "New tests suggest the central
nervous system is involved in ME/CFS and Lyme, and that protein abnormalities in
the CNS “are causes and/or effects of both conditions.” [Note: this news made
headlines around the world, but was highlighted first Feb 23 on "The CBS Evening
News with Katie Couric" - with the headline "Chronic fatigue syndrome - new
scientific evidence that it's not in the mind of the patient but very
real."]....“Spinal fluid is like a liquid window to the brain,” says Dr.
Schutzer." 12. WHY NO LOOTING IN JAPAN?
From a reader--
"THIS CAME TO MY MIND
WHEN I WAS WATCHING THE NEWS ON THE JAPANESE PEOPLE AND THEIR ATTITUDES AFTER
THIS DISASTER!! It is so true..I am ashamed when I watch even our poor
doing looting...when I was a kid, we had very little, but it never occurred to
me to steal. NEVER. I know there are others worse off than I was,
but the Japanese people just PROVED that no matter how bad it is, it is NEVER a
good reason to take...and to do so violently as looters do ..... Subject:
Interesting from the UK's Telegraph - Why no looting in Japan? The landscape of parts of
Japan looks like the aftermath of World War Two; no industrialized country since
then has suffered such a death toll. The one tiny, tiny consolation is the
extent to which it shows how humanity can rally round in times of adversity,
with heroic British rescue teams joining colleagues from the US and elsewhere to
fly out. And solidarity seems especially strong in Japan itself. Perhaps even
more impressive than Japan’s technological power is its social strength, with
supermarkets cutting prices and vending machine owners giving out free drinks as
people work together to survive. Most noticeably of all, there has been no
looting, and I’m not the only one curious about this. This is quite unusual
among human cultures, and it’s unlikely it would be the case in Britain. During
the 2007 floods in the West Country abandoned cars were broken into and free
packs of bottled water were stolen. There was looting in Chile after the
earthquake last year – so much so that troops were sent in; in New Orleans,
Hurricane Katrina saw looting on a shocking scale. Why do some cultures react to
disaster by reverting to everyone for himself, but others – especially the
Japanese – display altruism even in adversity? A few of the comments
posted by readers are also interesting: While in Tokyo last year,
I felt a strange sense of absolute security and serenity that I never felt
before, having lived in NYC all my life. I could walk anywhere at 4 in the
morning and not even think twice. The only threatening looking people were the
immigrant blacks who acted as bouncers/pimps in Shinjuku harassing passers-by.
The answer is very
simple. Japan is devoid of a public which is entitlement minded, who see
themselves as above the law. They are hard working and predominantly honest.
They don't sit around waiting for the government to redistribute the wealth from
those who produce, to those who refuse to and lastly they don't vote for people
who promise them something for nothing under the guise of Hope and Change.
Japanese and Asian
culture has a collectivist attitude, ingrained over years of commitment to
family, society, and the emperor. Unlike the rabble and human garbage in other
societies where people will riot at the first sight of anarchy. Yes, certain
people are prone to rioting and rebellion. Having spent time in
Japan on business I can tell your readers the Japanese are a very disciplined,
organized and paternalistic culture. Committing crimes such as looting would
reflect horribly on their family and village. Japanese still have a holistic
mentality, meaning they do what is in the interest of Japan, the company they
work for and their family, rather than the individual - the exact opposite of
most others." 13. WHEN MARRIAGE
HURTS http://www.ccmlit.org/challenger/Challenger_2008/Chg_20080103_03.html FROM DOM: See my marriage advice
www.fms-help.com/marriage.htm for Christian
women. 14. DISABILITY From a
reader-- "I suffered with very
painful aching all over my body for at least 15 years, I watched the clock
constantly for 4 hours to go by so I could take my next dose of ibuprofin.
I took 800 mg. I thought I had really bad arthritis. I told every dr I saw
about my pain and insomnia which was always shrugged off. I felt they all
thought I was a hypochondriac. I also had terrible low back pain, which was
finally diagnosed as a herniated disk and degenerative disk disease. I was told
that due to my weight and the severity of degeneration there was no surgery they
could do to fix my back, and I was prescribed Vicodin for the back pain
and sleep medication. What a difference that made in my life! It's not fun
to have this back pain, but I am happy to take the bitter with the sweet,
because the Vicodin relieves my fibro pain very well. It only takes the edge off
the back pain but I would rather cope with that any day! I have so much empathy
for people with fibro and any type of chronic pain. I wish they could all take
Vicodin, of course I know that is not an option for many people, and it took so
many years to finally find a doctor to give me that prescription. I
also wanted to add that I finally able to won my case for
disability after 2 years, based on my back alone, but to anyone who is trying to
get it, please don't give up, every time they say no, appeal that
decision! It is your right to do that. Once a case finally
goes before a judge, it stands a much greater chance of being accepted, so
please hang in there! We see more and more research validating our
disease, and it's only a matter of time before it is an "acceptable" diagnosis,
as silly as that sounds." FROM DOM: I was shocked when an
elderly lady told me last week, "My friend is applying for disability for
fibromyalgia and I hope she doesn't get it!" I tried to explain to her
that her friend may indeed need disability, and there are degrees of this
illness. I could tell by our conversation that she was totally shut off to
any new information. How sad! (And this lady is a FRIEND of
hers!) How misunderstood we are!!! I have lots of emotional support
on my homepage (see yellow box on left) for fibromites suffering skepticism from
friends and family. I also discussed this issue in many past newsletters
(use Google search box at the end of this page to find more). Also, see my
page that has tips from readers who were successful getting disability for
FMS/CFIDS. I was told by a fibromyalgia disability attorney a few years ago
that I did not qualify for SSD because I earn over $500/mo. from teaching piano,
which proves that I "CAN work." There is no consideration for how nearly
impossible this is at times. But God has been in control and helped me
persevere, because I have no other choice financially. 15. BOOMERANG ILLNESS From a reader--
"I am so frustrated with
the lack of knowledge in curing this illness [FMS/CFIDS/insomnia]. I think part
of the problem is the overlapping illnesses that some people have. I had a
perfect month last November and then the flares started again after the
holidays. When you feel perfect and back to yourself, you think it is over. Then
boom...it can smack you in the face again." FROM DOM: So true. It's like a malicious computer
virus running in the background all the time. A list of things I use to
fight back is at www.fms-help.com/what.htm. Years ago a reader told me that she had been cured
using the guaifenesin protocol. I didn't hear from her for about a
year. Then one day out of the blue she called me, said she had been in a
car accident and her fibro was back with a vengeance. She was
desperate! This is a common experience. 16. ACID/ALKALINE FOOD CHART FROM DOM: I have tried for years to have
a more alkaline pH with diet. However, this is very difficult. The
best help I have found is the oxygen drops
that I put in my drinking water, which alkalize pH. This has greatly
reduced my incidence of viral illness and brain fog. 17. FOOD-COMBINING CHART 18. FREE SAMPLES OF TOPRICIN & ENTER KINDLE CONTEST FROM DOM: I first heard about Topricin from a reader. I did some research and discovered that Topricin is an ointment for neuropathic pain, such as fibromyalgia and shingles. See www.topricin.com. Topricin is an all natural pain reliever with great testimonials. To get FREE SAMPLES and enter a Kindle contest, click on www.healthedamage.com. There's an article about fibromyalgia in their Summer 2010 newsletter on the right hand side of the website. Snippet: "Topricin pain relief and healing cream
has been so effective in resolving pain for
the majority of women with fibromyalgia,
that many report reducing or eliminating
dependency for all pain meds. The
applications are on the “tender points” at the
front and back of the neck, trapeze muscle
on the shoulders, the ribs front chest, the
shoulder blades, the upper outer area of hips
and buttocks, and around the knees. Women
have reported to us that by using Topricin
regularly they feel better and healthier, and
are staying more active."
19. EARTHING From a
reader-- Here are five common "no no's"
people mistakenly do when trying to manage fibromyalgia. Do any sound like
you? 1. Exercising too Much or
too Little Fibromyalgia reflects an energy
crisis in your body, so you can only exercise to a certain point. Beyond that,
you get what is called "postexertional fatigue," where you feel completely wiped
out the next day. Be careful to avoid this as it can discourage you from the
moderate exercise that is vital to healing fibromyalgia. On the other hand, insufficient
exercise results in deconditioning and clearly can worsen your ability to
function. So what level of exercise is right?
If you feel tired but good afterwards, and better still the next day, then you
exercised the right amount. But if you feel like you were "hit by a truck," then
you did too much. Start with a light walking program. Wear a pedometer to see
your progress and try to build up over time to 10,000 steps a day by adding a
minute each day. 2. Not Knowing When to Say
"No" Being too agreeable to things you
don't really want to do is a major stress that aggravates people with
fibromyalgia. Try more often to allow yourself to say "no" when what is being
asked of you doesn't feel good. 3. Not
Listening When Your Body Tells You it's in Pain Widespread muscle pain
is one of the most dominant symptoms associated with fibromyalgia. When you fee
pain, remember that that's your body's protective system signaling you that
something needs attention. Don't dismiss the pain or try to "play through it."
Instead learn how to manage fibromyalgia-related pain using a comprehensive
approach. The S.H.I.N.E.
Protocol is my recommended approach to this as
it can guide you systematically through the 5 key areas that you need to
address. 4. Eating Excessive
Sugar Eating excessive sugar (especially
in sodas or fruit juices) can severely flare fibromyalgia by worsening adrenal
exhaustion and Candida/yeast overgrowth. Eat a high-protein diet and substitute
Stevia or Saccharin for sugar. Sugar-free ice cream with Splenda and sugar-free
chocolates with maltitol are also okay (in small amounts). Dark chocolate can
actually improve fibromyalgia and chronic fatigue
syndrome symptoms! 5. Not
Getting Enough Sleep It may seem
counter-intuitive, but people with fatigue-related illnesses, such as
fibromyalgia, often get too little sleep. Getting 8-9 hours of good quality deep
sleep each night is critical to eliminating fatigue and pain. If you aren't
getting enough sleep, see Sleep and
Insomnia to learn about nutritional support,
sleep habit changes and medications that can help you. FROM DOM: You can learn more about Dr.
Jacob Teitelbaum at http://www.endfatigue.com/about-dr-t/Index.html. Also, use the
Google box below to find references to Dr. T. in past
newsletters.
II Corinthians 1: 4 - "[God] Who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble, by the comfort wherewith we ourselves are comforted of God." Visit Dominie's FMS/CFIDS Homepage at www.fms-help.com for Fibromyalgia and Chronic Fatigue Syndrome sufferers and their families.
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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.