DOM'S NEWSLETTER
 
"Bear ye one another's burdens and so fulfill the law of Christ."  Galatians 6:2
www.fms-help.com
 
October 19, 2007
 
A compassionate informative newsletter for people with fibromyalgia (FMS), chronic fatigue immune dysfunction syndrome (CFIDS), myalgic encephalomyelitis (M.E.) and other neuro-endocrine-immune disorders.
 
TOPICS ARE IN PURPLE.  MY COMMENTS ARE IN TEAL.
 
Don't miss--
#3 TOO LOUD, TOO BRIGHT, TOO FAST, TOO TIGHT - new book by Sharon Heller
#20 DOM'S UPDATE - no fatigue or fog since June 5
 
 

 
1.  READERS WRITE
 
"I cried reading your story www.fms-help.com/fibro.htm.  I could have written it.  You wrote my story.  I'm 35 yrs old and have been plagued with so many problems for years and everyone thought it was in my head."
 
"Thanks for all the great work that you do."
 
"I appreciate your sharing such valuable information."
 
"If you did not suffer from fibro, you would not have brought us hope. God has poured love into your heart, and through this your light has shown in the darkness for many.  And if you can overcome this darkness, then so can I."
 
"Thank you so much for your hard work on the newsletter."
 
 
2.  LYRICA
Reader 1--
"My problems are Fibro, Myofacial Pain Syndrome, stenosis of the lower back, bulging discs  and severe arthritis, plus a lot of nerve pain.  I have been suffering for years.  I am on heavey duty pain meds, but believe it or not, it helps with the muscle and bone pain, but not at all with the nerve pain.  My doctor wanted me to try Lyrica.  I was very leary about that because I have read all about the side effects and other things that can happen with this stuff.  However, I promised my doctor that I would try it and she gave me a weeks supply.  The first day I took it I was very tired, didn't want to move, and I felt very detached, if you know what I mean. That continued for two days, and then all of the sudden, I noticed the nerve pain was almost all gone!!!! So hopefully this is my answer to getting back to a somewhat "normal" life for me. You know how chronic severe pain can make one so depressed.  I just wanted to tell everyone about my experience with the Lyrica so far.  Been taking it for two weeks now and feel pretty good compared to how I was. I am still on my pain meds, but only have to take half of the dose I was on."
 
Reader 2--
"My Dr put me on Lyrica about two weeks ago for Fibro.  Seems to be helping Fibro pain quite a lot, however over the weekend I suffered some awful symptoms in my throat.  Went to the Dr. yesterday, I guess I was having very severe heartburn.  Dr. prescribed Lyrica right before bed, his thought is that the Lyrica relaxed the little flap in the stomach that keeps the stomach acid from coming up into the esophagus and that is what caused the heartburn.  I could barely swallow!  He has suggested that I take the Lyrica earlier in the day and gave me some anti-acid meds for a few weeks!  This is a vicious cycle that I am getting so tired of!!  Do you know of any of your readers that have had similar symptoms with the heartburn after taking Lyrica?"
 
 
 
3.   "TOO LOUD, TOO BRIGHT, TOO FAST, TOO TIGHT"
Book recommendation from a reader--
"Too Loud, Too Bright, Too Fast, Too Tight: What to Do if You are Sensory Defensive in an Overstimulating World" by Sharon Heller.  Her hypothesis, which makes a lot of sense to me, is that the nervous system of people with FMS/CFS is at the wrong "set point", whether they were born that way or it developed after some sort of major stressor or whatever.  The more I learn about neuro stuff, I could see how both could be possible.  And how are bodies respond could be due to our genetic background.  I've heard that before, but the whole half of the book is dedicated to re-setting it.  This book was helpful for me because my main symptom is pain and exercise does help me, but I know that isn't applicable to my mom who is so fatigued that she can't exercise.  Dr. Muhammud Yunus has suggested that all these "syndromes" are actually the same thing on a long contiuum of sensory disorders.  Anyway the whole book basically describes my whole life!!!!  And I like that she gives solutions on how to re-set the nervous system.  (I'm absolutely amazed when doctors say "Yep, sounds like fibromyalgia" like that's an answer in and of itself!)"
I would LOVE to read this book!  See my pages about fibro and the central and autonomic nervous systems at www.fms-help.com/nervous.htm and www.fms-help.com/autonomic.htm. 
 
 
 
4.  EXERCISE MACHINE
Please respond directly to Sally s.mcshane@comcast.net--
"Please let me know if anyone has tried the Exerciser 2000 Elite, it is advertised in the Arthritis today magazine, Sept. 2007 issue - two pages from the back of the magazine. If it works like it says, I'll buy it. - Sally"
 
 
5.  LEAD-FREE LIPSTICK SAMPLES
From a reader--
"After sending out the email this morning with the news of lead in lipsticks, I had to do some investigating.  First off, since my husband's main research for 30 years was in lead, I vetted the research results past him.  He verified that the levels of lead the consumer's group has detected in the lipsticks are indeed a substantive amount and capable of being quite harmful...especially since heavy metals build up in bones and are released at later dates.  So the article is dead on tragic. However, that still leaves the question of replacing the lipstick you own.  To that end, I found the site for All Natural Cosmetics.  What's really great is that you can order sample lipsticks and glosses for about $1 and try out the shades and product before committing.  And these are lead (and most other harmful ingredients) free.  Thought I'd pass this along.  http://www.allnaturalcosmetics.com."
 
 
6.  B-12 DEFICIENCY
From a reader--
"I strongly suggest that people read the following information / links to educate themselves about the symptoms of B12 deficiency. If we educate ourselves, we can help ourselves.  http://www.b12d.org/uploads/File/B12-%20A%20Retrospective%20Study.pdf
There seem to be so many signs and symptoms of B12 deficiency that are similar to many of the symptoms ME/CFS/FMS patients like us suffer from.  In 1849 (157 yrs ago) an association between Neuro-Psychiatric Disorders and Vitamin B12 Deficiency was first described'Cobalamin deficiency must be suspected in all patients with unexplained neuro-psychiatric symptoms or unexplained anaemia. Special attention should be paid to patients at risk of developing cobalamin deficiency such as elderly people, vegetarians, HIV-infected patients, patients with gastrointestinal disease and patients with auto-immunity or a family history of B12 Deficiency.'"
 
 
7.  ST. JOHNS WORT FOR DEPRESSION
From a reader--
"Just wanted to say that I started using St Johns Wort for depression and it's been like a miracle for me...I noticed relief within first 48 hrs of  use...I'm also taking FLAX SEED OIL which has the omegas in it (incl. omega 3)...so that may be also helping... I use melatonin & 5htp for sleep..doing better...not great but improved...I wont take the sleeping drugs anymore.... (horrible side effects).  This is a vicious and cruel illness...very draining and difficult when other conditions are added with it.... I live in Florida and am in early menopause so the hot flashes are horrendous!!!  cant take hormones due to history of blood clots and havent found relief in an herb yet....thanks again! God bless!  I'm so broke from trying things..its crazy!!!"
 
Another reader with a cashectomy!  I can so relate to everything she said. For a list of things I tried for sleep, see www.fms-help.com/sleep.htm.  I am still trying to find something to get rid of the hot flashes.  The extreme heat and humidity here in Florida make this even more of a problem.  Have tried hormones, phytoestrogens and a number of natural formulations, all to no avail.  I am 55.  Some have helped a little, but not as much as I would like.  Melatonin for sleep stopped working for me when I turned 48.  5-HTP has never helped me.  We are all different.  I am using a good Omega 3 product and that helps with depression.
 
 
8.  FIBROMYALGIA FRIENDS SUPPORT GROUP
From Brett Hodges--
"Hi everyone! Please take a minute to share your story so that we can get to know each other.  Feel free to invite any friends to join, and please start a discussion topic if you have a question.  http://www.revolutionhealth.com/groups/fibromyalgia-friends."
 
 
 
9.  SLEEP AND "BED DREAD" HELPED BY HOMEOPATHY
From a reader--
"I too had bed dread - anxiety about going to sleep because I knew I would be tossing and turning due to Restless Leg and pain from Fibro.  My homeopathic Doctor gave me Aurum Metallicum 30 for the anxiety and it was amazing.  And Coffea Cruda 30 to help me sleep.  I have slept like a baby ever since.  No side effects, no drowsiness the next day.  I wake up refreshed.  For the RLS I still take Cuprum Metallicum 30 and it works wonders with no side effects.  I spent 10 years without restful, refreshing sleep.  I was a zombie.  I've got my life back.  A good night's sleep is healing."
 
 
10.  CHLORINE-FREE SWIMMING POOLS
From a reader--
"My rheumatologist Dr. has been trying to get me into the same program for the last 5 years! Every time I visit her the same conversations occur. I already know that I am allergic to the chlorine from having taken my kids years ago for their indoor swim lessons at the YMCA. The fumes alone bothered me. I can take short times in a hotel pool.  I don't know where you live but I did discover that the swimming pools in Cali (per the hotel I stayed at) are no longer using chlorine. They are using a different product that has no odor and is like swimming in salt water. I had no reaction when I was on vacation and was able to do short increments of exercise for the 10 days I was out there. Was told that Arizona also is chlorine free. I'm in Chicago and when I got back home I called everywhere about this and noone had heard of a chlorine free swimming pool.  I have finally after many years found I can tolerate stretching exercises for about 20-30 minutes 3x week. Not consistently, I really have to listen to my body. I have recently added 8 oz weights. Yes, 8oz tomato sauce cans. Tried 16oz and it was too much. Only doing 10 reps of simple arm lifts. I am seeing a physiatrist, physical medicine doc who told me to only do 8oz.   I also, have not had any success with weight loss but on my meds I used to take."
I once invested in a hot tub upon the advice of another friend with fibro.  What a disaster!  Was allergic to the chemicals and I could never get the water right chemically due to having well water where we were living.  I got infections after using the hot tub no matter how well-maintained I kept it.  Finally sold it and was grateful that it wasn't another cashectomy.
 
 
11.  CORTEF HELPS CFIDS PATIENT
From a male reader--
"I am doing well.  I canít complain. The best treatments for me are the low dose cortisol (Cortef 15 Ė 20 mg. / day), and glyconutrients. I started taking the cortisol about a year and a half ago and it has really helped with overall stamina. My lab tests showed my adrenal function was only half of the low end of the normal range, and I found a progressive doctor who would prescribe the cortisol. No side effects at all."
Anyone else using Cortef?  See Cortef warnings in past newsletter www.fms-help.com/101106.htm (Topic 2).
 
 
12.  EXCITOTOXINS CAUSE PAIN
From a reader--
"For me if I take anything with Excitotoxins such as
gelatin capsules or the 40 plus aliases I'm in terrible
fibro pain.  Meds can be notorious for hidden ingredients.
www.msgmyth.com
Go to the interview area and listen to Dr. Blaylock
I also get his monthly newsletter and the October issue
is outstanding.
I have to read every label on meds (full disclosure)
supplements and food.  Eating out is out of the question.
I can't even find a bread in the Health food store that I can
eat.  My diet has to be squeaky clean from known
Excitotoxins because just a smidgen puts me in terrible pain. 
I only eat what I prepare.  It isn't easy but worth it.
The nutrionist that I work with has become a good friend.
Because of my medical problem she is helping other fibro suffers
by eliminating free glutamate (excitotoxins) with much success.
I also have to watch anything that I use on my skin. Many
products have hydrolyzed substances in them plus other
ingredients that I react to in the form of pain.
So many people are suffering needlessly.
www.msgtruth.org
www.truthinlabeling.org
I hope that what I have shared will help others."

 
13.  FIBRO CLINIC SUGGESTIONS
From Tara ttoleman@utmem.edu--
"It would be nice if the building and the way they do business reflect our disease... for instance:  1) Lower all the lights..in the entire building.  The administrative staff will just have to get used to it.  Most fibros I know of (including myself) are very sensitive to light.  I recently invested in full spectrum light bulbs and they help,  2) Have sound-absorbing walls due to extreme sensitivity to sound,  3) Have like 30 masseuse (sp?) on hand to give massages whenever needed , 4) Don't act like they know everything about FMS if they don't, 5)  Don't tell us to simply relax, 6) Teach the administrative people to be sensitive and kind to our condition.  Make them understand that we are all in pain or severely fatigued and basically just don't feel good ever.  If we are crabby when we come in, tell them not take offense, that we just don't feel good.  Tell them not to ask (even though it's the polite thing nowadays) "So how are you today??" with a chipper smile on their faces.  If we are there because of FMS or CFS, we are NOT feeling good. Question already answered.  7)  Schedule enough time to fully evaluate.  10 minutes, like a regular doctor appointment is nowadays, is not nearly enough time to describe all our numerous, seemingly random symptoms, 8) Most of us are fatigued, so have plenty of seating, 9) Play soft, calming music, not a blaring radio (the sensitivity to sound thing), 10) It would be nice if maybe they had lots of heating pads available in the waiting room."
 
 
14.  MARITAL FIGHTING AND HEALTH
Interesting article--
   http://articles.mercola.com/sites/articles/archive/2007/10/18/how-to-make-a-difference-in-your-marriage-and-your-health.aspx
Who needs more stress in marriage?!  For ladies only, see my article "Marital Harmony" at www.fms-help.com/marriage.htm.  It was originally a booklet, now free online. 
 
 
15. ANTIOXIDANTS AND FREE RADICALS
http://articles.mercola.com/sites/articles/archive/2007/10/18/cut-sugar-and-supplements-and-live-15-years-longer.aspx
"If you eat a lot of junk food and sugar, donít sleep enough, are stressed, and are exposed to a lot of environmental pollution, your body could easily become overwhelmed by free radicals, and be unable to neutralize them on its own."
The part about not sleeping enough, being stressed and exposed to environmental pollution struck a chord with me.  No wonder I feel better since June 5 when I began using an unusually potent antioxidant.  For info, write dombush@bellsouth.net.

 
 
16. ANOTHER FIBRO SUPPORT GROUP
http://health.groups.yahoo.com/group/CopeWithFibro/
 
 
17.  NEW CANCER DRUGS COULD HELP AUTOIMMUNE PROBLEMS
From a reader--
http://www.revolutionhealth.com/articles/?id=reut-20071008elin011
"Received a newsletter from Revolution Health that included this article about a possible treatment for overactive immune systems, as most of us that have FMS also suffer from other autoimmune disorders as well.  I thought it was interesting."
 
 
18.  FRALEX TRIAL
From a reader--
"I thought I would pass on this information to you about clinical trials starting for a new device aimed at easing the pain associated with FMS.  I am from Ottawa and that is where they are starting the trial.  The plans are to extend the trial over the next year with the hope of getting FDA approval.  You can read more about the trial and company here. http://www.fralex.com."


19.  WHY DON'T PAINKILLERS WORK FOR PEOPLE WITH FIBROMYALGIA
From a reader--
http://www.sciencedaily.com/releases/2007/09/070927131357.htm
 
 

20.  DOM'S UPDATE
 
I have had no fatigue, brain fog or pain since June 5!   I'm still feeling good - plenty of energy and stamina that lasts all day.  For a list of things I'm now using, see www.fms-help.com/what.htm.   I am a far cry from the wretched debilitation of my fibro story at www.fms-help.com/fibro.htm and my CFS story at www.fms-help.com/fatigue.htm
 
However, I still have the sleep disorder (since age 16, so it's been almost 40 years now) that I manage with meds www.fms-help.com/sleep.htm.  Insomnia www.fms-help.com/insomnia.htm has ruined me occupationally.  I am not dependable because my sleep is undependable.  I'm glad I can teach music in the afternoons and evenings at the School of Music, because I don't do mornings.  In the mornings, if I'm not sleeping, I write the newsletter and webmaster my FMS/CFIDS site at www.fms-help.comWith a sleep disorder, it's hard to plan anything for the next day, not knowing if you are going to sleep or not.  I try to never schedule a morning commitment.
 
Well, today was my day off, so I decided to treat myself to something different!  (I'm a workaholic!)  So I went to the Southern Women's Show at the convention center about 40 miles from our home.  There were hundreds of booths with demonstrations of everything from cooking, to health care, to pianos.  (Of course the piano exhibits were my favorites!)  I walked around for several hours - saw several people I knew -  then drove home in heavy rain and traffic.  For those of you who have been following my updates for the past several years www.fms-help.com/newsletters.htm, you know what an incredible feat this was for me compared to how I have been.  I thank God for the new things I'm taking that make this level of functioning possible for me now.  If you want info, please write me dombush@bellsouth.net.   Maybe they will help you too.  I wish all of my readers felt as good as I do now!  I have spent sooo many years in misery and suffering.  It feels good to feel good again! 
 
I will continue writing this newsletter as I have for the past 11 years, because God has given me this work to do, at least for now.  I can never forget the people who suffer from this debilitating illness who need not only information, but also inspiration and comfort from someone who understands!  I was diagnosed in 1982 www.fms-help.com/fibro.htm, so I am "celebrating" 25 years of experience with this disorder.  (Ugh!)  But God must have had a reason for letting me endure this.  Actually, there are many worse things a person can go through!   Here's a short article from www.fms-help.com/marriage.htm -- and I can say this certainly is true in my case.

STORY TOLD BY A PREACHER'S WIFE

There was a woman who complained to the Lord that her burden was heavier than anyone elses and that she simply could not bear it any longer. So the Lord told her to go into the room where He had all the burdens being carried by other members of her congregation. He said she could spend the afternoon trying on other peopleís burdens and trade hers in for one she could handle more easily.

The woman was overjoyed and quickly discarded her burden. She decided to try on the smallest one there. She picked it up, but was surprised at how heavy it was for its size! She knew she couldnít carry it around for very long, so she looked for another burden that might be lighter. She spotted one in the corner that might work out, but much to her amazement, it itched and prickled very badly! She had to take that one off too.

All afternoon the woman tried on various burdens unsuccessfully. Finally, she found one she felt she could live with! The woman said happily, "Lord, Iím ready to go now. I found a burden I think I can manage." "Good," said the Lord, "Thatís the same one you came in with!"

Dominie
dombush@bellsouth.net
 
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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.