DOM'S NEWSLETTER
www.fms-help.com
 
Mother (88) and me (58)

August 19, 2010

A Christian-based newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.) and their families.

21 TOPICS.  Don't miss the RED ones.  Readers comments in BLACK.  My comments in TEAL.

 Previous newsletter: www.fms-help.com/080610.htm   Newsletter archives: www.fms-help.com/newsletters.htm   

Fibro: www.fms-help.com/fibro.htm  CFIDS: www.fms-help.com/fatigue.htm   Insomnia: www.fms-help.com/insomnia.htm

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1.  READERS WRITE

"Thanks for ALL you are doing to inform and unite us."
 
"Been suffering with fibromyalgia since 1985 and feel like I only live 25% of my life."
 
"You are doing a wonderful job - providing excellent information on both your website and your newsletter."
 
"I stumbled upon your site today www.fms-help.com, and I have found it extremely helpful.  I was diagnosed this year with Fibromyalgia, yet I have been suffering for at least 18 years with many of the symptoms.  I am in my late 30's and feel like an 80 year old woman. I know you understand how this feels. I feel like I have been cheated with precious time with my children and my husband."
 
"Thank you for all the help you give to those of us with this villain that has invaded out lives."
 
"Just want to thank you for your newsletter! It is amazing how many things I can relate to and I learn a lot of things of which I had not knowledge of prior to seeing in your newsletters.  Thank you so much for your efforts and all the helpful information!"
 
"I LOVE your web site!  It is awesome that someone put together all the crazy symptoms we get!"
 

2.  MCS MOVING DANGERS

From a reader--

"Please be very careful if you are moving. There are so many things that can happen to make you sick when you move from new paint etc (i have used AFM) to flooring (even organic carpet and safe floor coverings can make you sick) to mold in the new home (this happened to me). I highly recommend if you do any roofwork because the smells come inside to use AFM roofguard/sealant. If you use the regular, it smells very strong chemically and can make you really sick."

 

3.  BURNING NERVE PAIN & SLEEP

From a reader--

"I have Fibromyalgia/ CFS with nerve pain from my neck down. Every nerve in my body feels inflamed all of the time and when I lay in bed I feel like I am laying on nails. I believe the nerve pain is another symptom of Fibromyagia  or could be from the Lyme disease I supposedly had in the past. I take 150 mg of Lyrica, 1 mg Lorazepam, Benadryl (1-2 capsules) as well as 15mg MS Contin [oral morphine] and salampas pain patches to go to sleep. Oh, I also use ear plugs and eye patches most of the time too. Anyway, the Lyrica helps me sleep as well as helps the nerve pain, Lorezapam helps me sleep but also makes me itch so I take the Benadryl with that. Now that I take all of these meds at night I sleep pretty good. It may seem like a lot of stuff to take but to me it’s better than staying awake all night.  During the day I just take MS Contin 15 mg 3 X per day which does help some. I used to take Lyrica during the day too but now only take it at night because it makes me gain weight and causes swelling in my legs.  Oh, I also take many herbal supplements."

FROM DOM:  A list of everything I've tried for sleep is at www.fms-help.com/sleep.htm.  A list of everything I use now (and get decent sleep most nights) is at www.fms-help.com/what.htm.  My insomnia story (began when I was 16) is at www.fms-help.com/insomnia.htm.  I have heard that once the adrenals are depleted that insomnia begins.  I can totally believe my adrenals were done in by age 16 from so much stress in my life.

 

4.  UNSUPPORTIVE SPOUSES

FROM DOM:  This is typical of comments received from approximately 25% of my readers who responded to the spouse survey at www.fms-help.com/072310.htm, Topic 16--

"Husband totally non-supportive.  Doesn't believe in Fibromyalgia.  Will not help at home.  Husband is sole support of family.  Have children.

Any suggestions for readers in this category?  Write dombush@bellsouth.net if you had an unsupportive spouse who became supportive.  Would love to hear your story.  Also, I have many excellent articles on my homepage www.fms-help.com that can be shared with skeptics, assuming they will read them!  (BTW, I do hear at times from men with fibromyalgia whose wives are unsupportive!)

 

5.  OFF THE CUTE-METER!

From a friend--

http://www.yourdailycute.com/2009/07/my-little-pony-baby-miniature-horse.html - Baby miniature horses

 

6.  BLOOD TRANSFUSIONS

From a reader--

"I strongly urge people to look at all that could go wrong with blood transfusions! In 1983 I needed blood after having a c-section for my daughter. I ended up getting hepatitis C (HCV). That was diagnosed in 1998 w/the FM! I am so thankful to God that it was not AIDS because I probably would not be alive! Instead I have to deal with HCV, which too can take your life. If ever I needed blood for a surgery, I would strongly recommend giving your own blood before the surgery (if allowed) or someone close to you that you know their history. There could be something else in the blood supply that they don't know about & don't test. Please be careful & totally check everything out before you put it in your body~run it by your doctor first."

 

7.  WHEY PROTEIN POWDER

From a reader--

"I buy whey protein powder at my chiropractor's office.  I use the whey powder in my smoothies (always add it at the end of the blending). That way if I am not that hungry, I get my fruits, yogurt, soymilk & whey protein all in one! It has helped me maintain my weight, which is important for people with FM/CFS! I can't afford to gain. It also gives me the strength to go out & do my walking & gardening. I still need to nap at times though.  I have been dx'd with FM since 1998 & CFS since 2007. I have taken that long & winding road of medicines, pain treatments, & holistic treatments. I tell everyone in my support group that is it so important to find what works for your body. Not everyone with FM/CFS has the same symptoms or body chemistry. I strongly recommend counseling, spirituality (God preferably), meditation, most of all being your own medical advocate!"

FROM DOM:  I like the Triple Protein Shake (chocolate or vanilla).   High quality protein from 3 sources - whey, milk and soy.

 

8.  VITAMIN D

From a reader--

"Speeding up and collapsing www.fms-help.com/080610.htm is me all over.  I think working 40 hrs and raising 3 kids require the body to speed up and rush to get things done then the crash comes. Sometimes daily ups and downs other times every few days.  Anyhow, just got my Vit D checked and it was real low.  Taking RX strength 50,000 units 2Xday for 3 months.  Just started, so unsure of results."

FROM DOM:  I've asked this reader to keep us updated on how she does with megadoses of Vitamin D.  Has anyone else tried this?  Results?  Write dombush@bellsouth.net.

 

9.   NEW SWEETENER - "WHEY LOW"

From a reader--

http://www.drsinatra.com/legacy/0310-wheylow-LP.php?gId=L1&key=188662&utm_source=loy-xbyr&utm_medium=email&utm_content=WheyLow-0810&utm_campaign=WheyLow&SC=129097

Dr. Sinatra says--

Being a cardiologist has really opened my eyes to the sweet-glutted American diet. We sure do love our sugar. But in my opinion, sugar and other sweeteners like high fructose corn syrup are one of the main culprits of cardiovascular problems, possibly even more so than saturated fat, trans fats, radiation, microbes or pharmaceutical drugs.

That’s why I was thrilled when I found a healthy, all-natural sweetener called Whey Low®. It tastes, looks, bakes, even feels exactly like table sugar. But instead of causing a spike in your blood sugar, it actually reduces your body’s glucose response. In fact, it is 60-80% lower on the glycemic scale than regular table sugar. Plus, it has 75% fewer calories!Whey Low® is the perfect sweetener if you have blood sugar concerns, weight problems, metabolic syndrome, or if you simply want a healthier way to cook and bake. It’s natural, healthy, and no one will ever notice that it’s not ordinary sugar!

Dr. Sinatra recommends Whey Low because:

How is all this possible?

It has to do with Whey Low’s composition. This sweetener was developed by a doctor so his wife, diagnosed with Type 2 diabetes, could continue her love of baking. Whey Low is comprised of three forms of natural sugar: fructose, lactose, and sucrose. Lactose interferes with the absorption of sucrose, preventing it from entering your bloodstream and, therefore, sidestepping the normal blood sugar spike. If you’re lactose intolerant, don’t worry. Whey Low has been tested in individuals with this condition and passed with flying colors. In fact, the only difference between regular sugar and all-natural Whey Low will be your lower blood sugar numbers.

FROM DOM:  This stuff sounds great.  My only question is if it would be appropriate for people with low blood sugar (hypoglycemia).  Has anyone tried Whey Low?  Write dombush@bellsouth.net.

 

10.  ABUSIVE MARRIAGE

From a reader--

"Thank you for including the part in your recent newsletter www.fms-help.com/080610.htm about “When Marriage Hurts” http://www.ccmusa.org/Read/Read.aspx?id=CHG20080103.  I am in a very painful place right now, where I realize that my husband and I are not just having “marriage problems,” but that he has actually become verbally, emotionally, and mentally abusive and cruel to me and our children.  It is at the same time both liberating to finally name the truth of it, but also excruciatingly painful and frightening.  How do those of us with FM/CFS get through this?  I am so physically ill this week just from the emotional stress.  I can’t imagine making it on my own.  Praise God, I do have support from a couple of close friends and my mother.  I know this is more than many women have.  But I strongly doubt my ability to raise 2 young children alone with my chronic illnesses.  I feel so trapped.  I feel so terrified of the unknown.  I don’t know how this will end, but it doesn’t seem to have any good possible ending.  Most of all, I feel horribly ashamed as a Christian, to be in this situation.  I would cherish getting as much advice and direction and prayer as possible!  We are already dealing with so much from our illness, and then to have to deal with this too…It sometimes seems too much to bear.  But I know that Jesus is bearing it with me, even when I can’t feel it at the time."

FROM DOM:  My guess is that her husband is either seeing someone else or is addicted to pornography (possibly online).  See my page: "Marital Harmony: An Emergency Marriage Manual" www.fms-help.com/marriage.htm.  This reader is not the first to mention marital abuse!  I have been in her predicament earlier in my life and feel her pain.   Any advice for this reader?  Write dombush@bellsouth.net as she needs to remain anonymous.  I will put some of the responses in the next newsletter (it may not be safe for her to correspond about this subject via email).  Please pray for her too.

 

 11.  SWINE FLU

From a reader--

"Today the World Health Organization announced that the Swine Flu Pandemic that was going to kill zillions of unsuspecting, non-vaccinated people around the world – had fizzled out!  But don't be too complacent - they are still going to vaccinate you against it!  http://just-me-in-t.blogspot.com/2010/08/seasonal-oink-flu-pandemic-is-over.html."

 

 12.  MENSTRUAL CRAMPS MAY ALTER BRAINS OF WOMEN

From a reader (please reply to Jesaja58@q.com)--

"I tried to email you an article that just came out on MSNBC.news but my PC would not send it because of a very old email program I still have on my PC.  Anyway, I hope you will find it on Google and it explains that brain tests were done on women during menstrual cramps. It now turns out that the brains of those that had bad cramps were altered because of these bad pains and that later in life the brains become more and more sensitive to pain.  I can testify to that as I had severe cramps when I had my menstrual periods and also severe acne (till I was about 27 ).  Then I was diagnosed (finally in 1984) with hypothyroidism and now after much research I found out that I must have had very low thyroid hormone output (in other words Hypothyroidism) since I was a very young person, because this accounts for the  severely painful menstrual cramps, acne, depressed immune system (had tonsillitis over and over) and  suffered with depression and tiredness even while young.  My doctor now tells me that a LOW thyroid function is the cause for fibromyalgia.  Anyway another very interesting article on  medical research  done in Taiwan. I suffered for over half a year with about 7 different thyroid meds..... new fillers I do not tolerate (some medication fillers now come from China & India),  had terrible episodes of atrial fibrillation (almost every a.m.  after taking meds) or heart pain. Was doing fine on old meds...The last medication  was Liothyronine and this causes my mouth and eyes to dry out awfully, my mouth & eyes  felt like parchment & sand  paper. ( Half of my thyroid was removed 2 years ago, Dr should not have done that, he treated many patients here very badly and was chased out of town by hospital).  MY QUESTION: have any of your readers ever used IODINE 3x a day (and once a day  ZINC and SELENIUM)  to STIMULATE / NOURISH THE THYROID instead of medications????  If anybody has an answer they can email me directly at  Jesaja58@q.com  Another question: how many people are in their 70's and still have fibromyalgia??????? (I am really curious.)"

 

13.  MISO SOUP

From a reader--

"I have suffered with CFS for around 7 years now, below are some supplements i take which have a beneficial effect on energy/immune health. I did not come across these on your site and thought i would share them in case, you have not yet tried them, or may wish to.
Vitamin B12 - mental health and energy
Co Enzyme Q10 - energy
Siberian Ginseng- Energy and mental well being
Cod liver oil- healthy joins and mental health (can help with the dreaded brain fog!)
Magnesium
In addition i have just started drinking the Japanese miso soup which helps rid harmful metals in your body and some claims have been made to the connection between that and CFS, interesting fact, the Japanese that drank this after Hiroshima did not develop cancer where as those that did not drink it did! However, it's early days for me to judge any beneficial effects personally.  I hope that maybe some of these may be of some use to you or your site (although I'm sure you have come across most or all at some point) it's worth a shot if not!

FROM DOM:  Some very interesting info about miso soup: 
http://www.movingtowardspeace.com/mtpblog/miso-soup-the-choice-of-a-jedi.html.

 

14.  READERS' PRAYER CORNER

Don his2sheep@cableone.net - Serious heart problems, as well as many other difficulties right now.

Stacie sbuckle1@consolidated.net - Recovering from serious injuries from a car accident.

Megan - Diagnosed with cancer just before giving birth earlier this month.  She is now doing better than expected.  Her husband Ryan is maintaining a website at www.prayersformegan.com.  (Megan is the daughter of a reader's fibro friend.)

 

15.  MOLD

From a reader--

"I was exposed to mold in a 1950's basement home (the mold was on between cinder block and plywood used to cover it up in the den)...too naive to know it was not a good place to rent in the mid 90's.  I should have known when the owner who formerly lived there still lived in town in a duplex and was ill (but I never knew what it was).  I do now!"

FROM DOM:  Yep.  Me too!  Read my mold story at www.fms-help.com/mold.htm.  Live and learn!

 

 16.  HEALING THE NERVOUS SYSTEM

From a reader--

"Regarding the lady whose mind is racing, there is a percentage of people with FM that become bipolar.  it's possibly caused by antidepressants.  there's a new diagnosis called bipolar 3, caused by antidepressants.  there's lots on the internet about it.  the good news is that it can be haulted once you stop the medications and rebuild the nervous system.  it doesn't have to be a life sentence of manic episodes.  you can heal. 

i'm wondering if the lady has taken any psychotropic drugs?  neurontin, elavil, flexeril, trazadone all are psychotropics.  they have a powerful effect on the nervous system and brain and my experience is that it's NOT POSITIVE.  what might help her is good omega 3 oils, about 3000 to 5000 mgs. (with doc's knowledge), B complex, magnesium, calcium, a good multi, vitamin D3i.  i'm really finding that the body heals itself with a super-healthy diet, sunshine, exercise, SLEEP and REST as much as possible, including naps, anything to calm the mind and nervous system HEALS!
 
there are 2 nervous system modes: sympathetic and parasympathetic.  sympathetic is the "fight or flight" mode, and parasympathetic is the meditative, relaxed mode.  whatever it takes to put the body in the relaxed mode will heal the mind/body: massage, hot bath, sauna, walking, lying in the sun (use untoasted sesame oil to prevent burn.)  One medical person told me that the best thing to heal the brain/mind is to do NOTHING.   and most important is GOOD, CLEAN, HEALTHY FOOD, veges (greens, onions, garlic), olive oil, fruit, less meat, more fish, BERRIES, nuts, range-free eggs are okay.  this can help ANY medical condition, including cancer.  it's more expensive to eat healthy, but consider it an investment because you either pay now or pay later...  in good food and supplements or later, in medical bills and prescriptions, if you don't make the changes now."
 
FROM DOM:  Wow!  Healing the nervous system through REST.  What a wonderful idea!  As busy as we all are, it sure is hard to find time to rest.  We work until we collapse! - many of us out of financial or family necessity.  But it is so true that we need SLEEP and REST.  Sad for most fibromites that restorative sleep is such an elusive thing.  I am finally (after 40 years of vicious insomnia) getting fairly decent sleep most nights.  A list of things I use is at www.fms-help.com/what.htm.  On the nights when I don't sleep well, it is reeeeally hard to get through the next day. UGH!   I went unmedicated for so many decades, that I know I have damaged my brain and nervous system through the torture of sleep deprivaiton.  My insomnia story is at www.fms-help.com/insomnia.htm. 
 
 
17.  FIBRO LETTER WRITING CAMPAIGN
 
From a reader--
 
"October 31, 2010 will be the deadline for this campaign. We will mail whatever
letters we have to at least 3-5 major networks. We are trying to get
other groups to do something similar about the same time.

This group is still very much seeking more letters and support. My
laptop is broken making it hard to get online and our group doesnt have
a "normal" to help out with managing things. Its very hard to keep the
group going and active when everyone is suffering from summer fatigue
and flares.

You can help by submitting a letter (even a
paragraph) about the person you know suffering from fibromyalgia and see
our site for details in the DISCUSSION area. You can invite your friends
list to join and/or have them sign the guestbook at our website
http://www.fibroletters.com."

FROM DOM:  We tried this 5 years ago with the Million Letter Campaign www.fms-help.com/letter.htm.  Hope this group helps get more awareness for fibro.

 

 18.  CHILLY PAD

My husband heard about this on the radio - stay cool!

http://www.chillypad.com
 
 
19.  CANCER-CAUSING MATTRESSES?
 
http://emf.mercola.com/sites/emf/archive/2010/08/18/your-box-spring-mattress-could-be-acting-as-a-gigantic-cancercausing-radiation-antenna.aspx
 
FROM DOM:  I sure hope this isn't yet something else to worry about!  Send comments to dombush@bellsouth.net.
 
 
20.  "MONSTERS INSIDE ME"
 
FROM DOM:  Eeeeeyew!!!! Totally GROSS!!!!!!!  I just watched a TV program on Animal Planet about parasites infecting humans.  They can be contracted from pets or even working in the garden or walking barefoot on the ground.  Did anyone else see "Monsters Inside Me"?  It was awful!!!!   I have had this comment about parasites and fibromyalgia in my 100 Tips for Coping with Fibromyalgia at www.fms-help.com/tips2.htm for many years: "Tip 30. PARASITES -- Symptoms of human worm infestations (yuck!!) are very similar to fibromyalgia. Parasites can invade our bodies through food or from having pets in our homes. Parasites are a constant drain on the immune system. If you suspect that parasites may be a problem, try an herbal anti-parasitic formula to help rid your system of these unwanted freeloaders. It can also help the body eliminate toxins and heavy metals. There's a controversial book by Hulda Clark called "The Cure for All Diseases" in which she makes a very good argument for parasites being at the root of most illnesses, incluing fibromyalgia."  Anyone have more info or care to comment?  Write dombush@bellsouth.net.
 
 
21.  CLOSING COMMENTS FROM DOM
 
I've been feeling pretty well lately......very busy with so many things - work, company, church, etc.  So glad to be able to do all of these things after years of suffering and debilitation from FMS www.fms-help.com/fibro.htm and CFIDS www.fms-help.com/fatigue.htm
 
The only thing I can't do is travel by car more than about 30 miles without extreme brain fatigue/collapse.  This puzzling symptom began after working in toxic mold during 2004-2005 www.fms-help.com/mold.htm and doesn't seem to have an answer yet (2010).  However, I have a very fulfilling life on my 30 mile leash - ha! 
 
A list of things I use is at www.fms-help.com/what.htm - there are some are WONDERFUL suggestions on my list of helps! 
 
I'm really sorry that I can't answer most of my email. I do try, but it is impossible. If you hear back from me personally, it is the exception, rather than the rule.  I would need a few secretaries to help me with the mail that comes in from www.fms-help.com.  Since that is not possible, I hope you will feel the love and concern through my newsletters.  Each of you is very important to me, and I care about you tremendously! We are all on the same journey.   Hopefully, TOGETHER we will find ways to feel better and have a joyous life - before it's over.  I was thinking today about II Peter 3:9-14--
 
"The Lord is not slack concerning his promise, as some men count slackness; but is longsuffering to us-ward, not willing that any should perish, but that all should come to repentance.  But the day of the Lord will come as a thief in the night; in the which the heavens shall pass away with a great noise, and the elements shall melt with fervent heat, the earth also and the works that are therein shall be burned up.  Seeing then that all these things shall be dissolved, what manner of persons ought ye to be in all holy conversation and godliness, Looking for and hasting unto the coming of the day of God, wherein the heavens being on fire shall be dissolved, and the elements shall melt with fervent heat?  Nevertheless we, according to his promise, look for new heavens and a new earth, wherein dwelleth righteousness.  Wherefore, beloved, seeing that ye look for such things, be diligent that ye may be found of him in peace, without spot, and blameless." 
 
Wow!  So despite our earthly problems, illnesses, fears, pain and tears, there is a new world coming!!  Let us be be found of him "in peace, without spot, and blameless."  This is only possible because: "The blood of Jesus Christ, God's son, cleanseth us from all sin."  I John 1:7.  My salvation testimony "Religious But Lost" is at www.fms-help.com/salvation.htm
 
'Til next time,
 
Dominie
 
 

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.