DOM'S NEWSLETTER
www.fms-help.com
November 3, 2007

"Bear ye one another's burdens and so fulfill the law of Christ."  Galatians 6:2

TOPICS ARE IN PURPLE.  MY COMMENTS ARE IN TEAL.
 
Don't miss:
#2 SLEEP AROUSALS - reader feels close to death
#10 THE "GUT BRAIN" - brain and neurological disorders are tied to intestinal health!
#14  JUNK FOOD SCIENCE - does it matter what you eat?
#22  DOM'S UPDATE - trying to avert a crash!
 
1. READERS WRITE
 
 
"I was thrilled to find your website!! I was diagnosed in January with fibro and had to quit my job after 20 years. The pain and fatigue are constant."
 
"We fibros need all the help we can get since doctors don't seem to be the answer!"
 
"I love your website www.fms-help.com."
 
"Many thanks for your continued interest and support.  I am still so very pleased you are doing well - may it be contagious."
 
"Thanks for the recent newsletter - would hate to miss any of the valuable information always included!"
 
"I have a family member with FMS struggling for 5 years now, and it seems the medical community is just useless in this situation."
 
"Blessings, and continue to put together a great resource."
 
"I have enjoyed your emails and tireless work on behalf of FMS."

"I am so happy to find your web site. It has come as such a blessing at this time of my life. I am a nurse and was diagnosed with FMS approximately 2 years ago. I have been solely relying on my PCP since I have been diagnosed. He has been very supportive but he can only treat what he know and he probably only focuses on the medical side of FMS."

"You have really been a great help to a mother with very little hope left."

"Thank you so much for your website www.fms-help.com and for all of the information that is posted. I just found out that I have fibromyalgia, IBS, osteoarthritis, TMJ, restless leg syndrome, CFS, chronic myofascial syndrome, depression, etc."

"I feel so blessed to have found your website."
 
"I have really enjoyed receiving your most informative newletters - good to know that you're not alone in your struggles - and hear about what others are going through."
 
"You are such a good friend to us fibromites."

"Thank you so much for your wonderful website www.fms-help.com." 

 
2. SLEEP AROUSALS
From a reader--
"It is AMAZING how FMS can start with the brain and then you can end up with gastro problems, joint pain, muscle tightness, nerve endings feeling like they are on fire, hormonal problems, etc.etc. but all of those seem to go right back to the brain. Our sympathetic nervous system is so out of balance. A chiropractor told me that mine was and the parasympathetic nervous system needed to be balanced back with the sympathetic. For me to have soooo many sleep arousals during the sleep study that has to be playing a role in how I am feeling right now and why I feel close to death, it is just horrible. Do you think with me having 30 something sleep arousals per hour that it may be part of the reason that I am not getting even some relief???"
I feel so empathetic with this reader.  I lived for years like this until June 5, 2007 - see my insomnia story at www.fms-help.com/insomnia.htm.  I totally understand her "near death" feeling.  And YES!  If we don't get some kind of restorative sleep, even using MEDS for sleep, we will feel like we are dying, probably because we are.  There's a condition called "Fatal Familial Insomnia" where this family has a genetic defect - when they reach a certain age in adulthood, they stop sleeping and eventually die within a few months.  Heaven forbid!!!  Anyway, check out these pages on my site that may be of help.  My sleep disorder (onset at age 16) has ruined my life for the past 40 years--
Autonomic nervous system: www.fms-help.com/autonomic.htm
Central nervous system: www.fms-help.com/nervous.htm
Drained by the Brain:  www.fms-help.com/yuppie.htm
Things I tried for sleep: www.fms-help.com/sleep.htm
Things I use now: www.fms-help.com/what.htm
 
 
3. CORTEF
Comments about Topic 11 at www.fms-help.com/101907.htm--
 
Reader 1--
"I tried Cortef, my adrenal function is in the stage five, and is very low at all hours of the day. I was SO allergic to Cortef. I had the most horrible drugged fatigue and got a fever and felt like I was going to faint. I could barely hold my head up. personally, I have not had success with pharmaceuticals. I am completely allergic to all sleeping meds too. I am glad Cortef works for some people. You do have to be very careful.  Right now, I am having (starting to have) some decent hours by doing remedies from healerswhoshare.com.  There are still times when my adrenal condition feels so severe that I feel like my very being has been unplugged."
 
Reader 2--
"'Though you posted the link to hazards of Cortef, I feel compelled to shout again.  The writer of #9 in the newsletter obviously is not aware that 15-20 mg Cortef IS FULL DOSE, not low-dose.  Those with Addison's are encouraged to keep the dose at 15 mg or below due to the treacherous side effects.  I, too, saw a "progressive" doctor before being properly diagnosed with Addison's.  I've little doubt that complementary physicians mean well & help many.  BUT, (big word) had I not seen an endo at the insistence of our PC, the pituitary adenoma would not have been revealed along with other serious illnesses.  Further, it's difficult to undergo an ACTH stim test once on steroids.  That test officially DXes Addison's, & Cortef will certainly skew results.  Trust me, it's a nightmare.  One more caveat is even at low dose, taking any amount of steroids CAN -- & often does --shut down one's own adrenal function.  Several years ago, I may have applauded the author of #9, www.fms-help.com/101907.htm.  Today, I humbly beg her/him to at least visit a reputable endocrinologist."
 
 
 
4.  PRESCRIPTION DRUG WITHDRAWAL
From a reader--
"I have lived a nightmare for the last 16 months.  Trusting a doctor with meds almost destroyed me.  That is another story in itself. I've been going through withdrawal from prescription drugs which I never should have been given.  It started with a skin infection and the doctor put me on prednisone for 32 months and Librium for 28 months.  I should have been given only antibiotics.   The panic  attacks that I suffered from were worse than a nightmare.  I finally refused to take anything because I was in big trouble mentally and physically.  He just kept upping the drugs.  I'm very wary of any doctor anymore.  With the help of God, my family, my husband, a nutritionist, friends and a Christian doctor I have regained my brain back.  Because of going cold turkey and my age a Christian doctor told me some of the withdrawal symptoms may never go away.  He told me to stick with the nutritionist.   I've have adrenal fatigue which has improved so much.  I had terrible panic attacks  unbelievable insomnia and a numb brain.  The test that were taken of my adrenal glands showed my cortisol was higher than they had seen and my serotonin was extremely low.  Once again the nutritionist that I go to, because of my experience, is helping others who are suffering
from withdrawal from prescription drugs.  I thank God everyday for getting me through this experience.  I was told that many end up in mental wards going through what I went through.  I know you deal with so many people with problems  I wanted to tell you part of my story to possibly help some other person."
Interesting.  About 10 years ago, I knew of 3 women (one was a relative) who had to go through detox in a psych ward for being on 28 prescription medications.  Picture rubber room and detoxing cold turkey!  Not a pretty sight.  Then the docs put them each on just 5-6 main meds that they absolutely needed.   Hearing their stories underlined to me the importance of finding natural supplements and other ways to deal with our health problems.  My current list of supplements and prescription meds is at www.fms-help.com/what.htm.  I have been feeling well since June 5, with no pain, fatigue or fog.  Each of us is different as to what helps us.  There's no one magic bullet, but there are some good ideas on my list.   I couldn't function without these things.
 
 
5.  HEARTBURN AFTER LYRICA?
From a reader--
"Re: the heartburn complaint after taking Lyrica.  My guess is that the Lyrica did not cause it. Rather it probably was ingesting anything right before bedtime.   I don’t recall reflux on the list of potential side effects.  I find that if I take my medication an hour or two before I go to bed, I have no problem.   Otherwise, I do.  Raising the head of the bed about six inches helps as well.  But propping up with extra pillows just puts more pressure on the sphincter between the stomach and the esophagus, possibly resulting in more reflux."
 
 
6. PAINKILLERS
From a reader about Topic 19 at www.fms-help.com/101907.htm--
 "That site about painkillers is nothing but more hype trying to get people not to use opioids.  They are the only things that help with me and I've tried 'em all for the past 7 years."


 7.  CHOP THEN STOP
From a friend--
Let garlic rest awhile after chopping to activate the anti-cancer properties.
 
 
 
8.  DEPRESSION
Two things that have helped me with depression are a high quality Omega 3 fish oil (suggested by my sister-in-law with a Ph.D. in virology) and also a specific blend of essential oils that lifts your mood.  Essential oils affect the limbic portion of the brain and this is how it affects emotions.  For more info, please write me dombush@bellsouth.net.
 
 
9.  REBOUNDING
From a reader--
"I know that this would be difficult for some sufferers but I have been fighting this disease and was pretty strong prior to, so I am able to accomplish this exercise. The exercise is rebounding. Rebounding is how it is referred to but it is jumping on a mini trampoline. There are tons of things on the internet regarding its benefits including helping to stimulate the lymphatic system and helping with muscle fatigue. I have found it very helpful and was able to go 24 hours without any medication of any kind quite amazing. You are supposed to do it 20 minutes a day for 3 days a week I can only do 10 so I hope to build up my ability."
I am happy this reader found an exercise she can do.  I tried rebounding a few times and about broke my neck!  I am not coordinated.  Also, with scoliosis, any jumping causes me back problems.  In my worse fibro days www.fms-help.com/fibro.htm, I was almost not able to move my body at all - not even mild stretching such as putting dishes away - without a severe payback of pain that lasted for days.  I am thankful to be doing so well now, thanks to a powerful antioxidant and some other things I began taking June 5.   See Dom's Updates in the newsletters at www.fms-help.com/newsletters.htm.  A current list of things I personally use to be functional is at www.fms-help.com/what.htm.
 
 
10.  THE "GUT BRAIN"
Reader 1--
Are brain and neurological disorders connected to intestinal health?  It may be surprising to many, but the health of the colon and intestine does seem to be directly linked to the health of the brain, mind, and mental health.  See http://naturalmedicine.suite101.com/article.cfm/the_brain_bowel_connection.
 
Also see http://www.wordsandme.org/index_files/Page630.htm - The Enteric Nervous System (the "Gut Brain")
 
In 1998 a book was published called “The Second Brain: The Scientific Basis of Gut Instinct and a Groundbreaking New Understanding of Nervous Disorders of the Stomach and Intestine.”   See http://www.cumc.columbia.edu/news/journal/journal-o/archives/jour_v19no2/second.html.  
 
 
Reader 2--
Modern medicine sees all mental illness deriving only from the brain - primarily from neurotransmitter imbalance and nothing else - the truth is that in many cases there is often an underlying physical cause (eg: infection, celiac disease, etc) and this is often never investigated,  and so its no wonder today we are faced with the current tragedy that the mentally ill die 25 earlier, on average.  Common to Dr Readings belief was that 'leaky gut conditions' such as celiac or latent celiac disease, and food allergies are a major contributor most mental illnesses and autoimmune diseases. Many people with mental illness have benefited from following his  Hypoallergenic/ mental illness Diet until the condition of their gut has been improved and allergic tendencies reduced. In addition Dr Reading always recommends high doses of B Vitamins and Minerals to make up for resulting malabsorption of required nutrients.
After reading these articles, I could better understand why the immune balancing powder I've been using since 2001 helps with such differing conditions - from depression to autoimmune disorders.  It works in the gut - evidently our second brain!  Now see Topic #11 below....
 
 
11.  NEWER TREATMENTS FOR IRRITABLE BOWEL SYNDROME
From a reader--
"In lay terms the second brain can be viewed as just that, a brain in the body and in this case it's in the colon. It's similar to the brain in the head as it 'runs' the colon in a way that is semi-independently of the way the brain runs the body. These brains do communicate and one of the ways they communicate is through messengers, such as serotonin (along with up to 30 others). The important thing about serotonin here is that it is a substance which is present in both brains. Just as changes it its level in areas of the brain affects the body so it appears changes in its level in the colon affects the functioning of the colon."
See Topic #10 above for more on this subject.
 
 
12.  DOC WITHOUT COMPASSION
From a reader--
"I read the article that you posted from the doctor that seems to have little compassion for us.  I don't even waste my time with people like him because they tend to make you think negative thoughts and I don't have time for that.  Contrary to what he wrote, my Fibromyalgia and Chronic Fatigue Syndrome struck me at the happiest time of my life.  I had just gotten engaged to the love of my life and was teaching  in a job that I absolutely loved and found so fulfilling when I began being so exhausted that I could barely walk from my car into the classroom.  Then I got to the point that I had to take my showers at night and didn't even have the strength to dry off; just put on a robe and laid down until I could get up and put on my nightgown.  I managed to get through my wedding and a year later, my husband talked me into quitting my job until I could "recuperate".  After a year I went back to work and lasted about six weeks and went down again.  I went to Jacksonville to Mayo Clinic and was diagnosed with CFS. At that time, I was walking two miles daily and just dragging through the rest of the day.  After several months, I managed to go back to teaching part time and we noticed that I had started limping and was feeling pain in my hip, leg and foot.  With my type A personality, I kept pushing and went back to Mayo Clinic where I was then diagnosed with FMS and told to slow down and stop fighting the illness, but I should learn to "manage" it and stay as active as I could.  Finally, at the end of 1997, I had gotten to the point that I was lucky if I could work 3 hours a week and when I tried to go shopping at Walmart or whatever, I had to use a wheelchair and was in so much pain.  I went back to Mayo Clinic where they told me to give up my job and start using my head (less "pushing" and more "managing" ) or I would end up bedridden like some of their patients.  This scared me so badly that I applied for SS disability and after two years, finally got it.  I do know that it is so hard for anyone to think positively when they are in pain or depressed because their life doesn't seem worth living but, from my own experience, talking and trying to uplift others and looking for the humor and positive side of this whole illness junk does help to lighten the mood and I find myself laughing at the oddest things!  I know that everyone isn't as blessed as I am to have such a loving husband and children but we should all cling to the understanding and loving people in our lives and try not to dwell on the negative people because they only bring us down and we forget to be grateful."
 
 
13.  PUSHING PAST FMS?
From a reader--
"How do we push past FMS? I have lost my job, lost my financial aid for school, and I am losing my life.  I want it back!"
Unfortunately, there is no way to push past FMS.  The more you push, the worse it gets.  There are lots of links on my site that will help explain this.  Go to www.fms-help.com and look in the yellow box on the left.   Some pages on my site that you might want to read are--
www.fms-help.com/tips.htm - 100 tips for coping with FMS
www.fms-help.com/yuppie.htm - Drained by the brain
www.fms-help.com/thief.htm - FMS is a thief of many lives
www.fms-help.com/losses.htm - Losses we experience with this illness
www.fms-help.com/trying.htm  - Why trying harder doesn't work
www.fms-help.com/what.htm - My current list of meds and supplements
 
 
14.  JUNK FOOD SCIENCE
From a reader--

Junkfood Science Exclusive: The big one — results of the biggest clinical trial of healthy eating ever.  More than 8 years later, there was no difference in the incidences of breast cancer, colon cancer, heart attacks or strokes among those who ate “healthy” and those who ate whatever they pleased.

I have long suspected this.  Have known too many people who lived into their 90's who are healthy and eat whatever they want. I think most health problems are genetic.  You either have good health or you don't.  I have also known many overweight people who have 10 times the energy and activity level that I have as a normal weight person who eats right.
 
 
15.  CELL PHONE USERS 240 PERCENT MORE PRONE TO BRAIN TUMORS
 
 
16.  WHY DOES GOD ALLOW SUFFERING?
Here are two good books I read several years ago.  (Reasonably priced at $4.99 and $5.99 at http://www.christianbook.com)--
 
Where is God When It Hurts? 
by Philip Yancey

Description: This inspirational best-seller for over twenty years has been revised and updated by the author to explore many important issues that have arisen since the original publication of the book. Sensitive and caring, this book discusses physical, emotional and spiritual pain, helps us understand why we suffer from pain, and provides insight into how to cope with our own pain and that of others.
 
When God Doesn't Make Sense
by Dr. James Dobson
 
Description: Why would God allow this to happen? It is life's most troubling question: Why does a loving God permit pain and suffering? Every person who lives long enough will eventually encounter trials and heartaches that are difficult to understand. During those times, the pieces simply will not fit--and God doesn't make sense. This is Dr. James Dobson's compelling book on the problem of pain. Anyone struggling with trials and heartaches--because of the recent terrorist attack, the prospect of war, the death of a loved one, disease, divorce, rejection--will find this an insightful, practical and compassionate resource--from the world's foremost family counselor.
17.  DON'T BE A VICTIM OF PHARMACY ERRORS
From a friend--
"Don't get a prescription filled at the beginning of the month. Phillips' research shows that in the first few days of each month fatalities due to medication errors rise by as much as 25 percent above normal. The reason: Social Security checks come at the beginning of the month.  Quite a number of people can't afford to get their medicines until the Social Security check comes in, so at the beginning of the month they turn up in abnormally large numbers and swamp the pharmacists," Phillips said. "When pharmacists are busy, they make more mistakes."
 
18.  DARK CHOCOLATE HELPS CFS SYMPTOMS
From a reader--
Did someone say "chocolate"?
 
 
19.  SYNTHROID HELPED
From a former reader--
"Just one little blue pill (synthroid) and within 4 weeks my symptoms disappeared....no I don't think it ever was FMS....they call hypothyroidism "the great imitator" because it mirrors so many other illnesses."
There's lots of info about thyroid and FMS on the net.
 
 
20.  7 ENERGY SINKHOLES
I really agree with #6 - Email and internet addiction.   Actually I like all of the suggestions in this article except for the last paragraph of #7.
 
 
21.  DISABILITY COMMENT
From a reader--
"Concerning the SS disability [article in past newsletter], I noticed the lady posted her lawyer's name and contact sites. Remember it took 2 years for him to get her approved. Everyone considering SS disability needs to know that a lawyer or anyone who represents one for SS disability receives a certain percentage of one's first check. They can receive up to 2 years back pay from the time of approval. I applied myself and was approved 1 month later.  In short, the lawyer or person representing one receives more by waiting 2 years to get the approval than he/she would if they get one approved in 1 month."
Wow.  Good point!  Didn't think of this before.  See more tips from newsletter readers about getting disability at www.fms-help.com/disability.htm.  Fortunately so far, I have not had to apply for SSD, but many with FMS/CFIDS are simply unable to work at all.  This can be an extremely disabling condition, making us occupationally challenged.
 
 
22.  DOM'S UPDATE
I'm trying my best to avert a "fibro crash" this week!  As most of you know, I have been feeling well since June 5 on my new supplements and have been feeling just about NORMAL except for my ongoing (40 year duration) sleep disorder www.fms-help.com/insomnia.htm. 
 
Being the Type A workaholic that I am, I dove right back into a full schedule - even took on new responsibilities like becoming the administrator of the school of music where I teach, plus other musical, educational, social and church commitments.  Meanwhile, my husband was getting really nervous about all of this and warned me to go slowly.  But I thought, "No wonder normal people can do so much!  I can too because I feel good again!  This is easy!!" 
 
So I began scheduling my days just like in pre-fibro times -- just filling in blanks in my planner and showing up where I was supposed to be at a given time.  I no longer had to build any leeway into my schedule for down time, bad days, sleep deprived days, etc.  I was so happy doing many things that I had wanted to for a long time!  I had no suffering and felt pretty much like a normal person.  Life was sure easy without the constant burden of illness.
 
Now for the rest of the story, as Paul Harvey says--
 
Suddenly, one day last week I realized that I had bitten off more than I could chew!  I was meeting myself coming and going!  Besides everything else going on, I was getting my students ready for a piano recital to be held next weekend in Jacksonville - preparing the program and coordinating with other teachers and participants.  We were part of a wonderful program by Roland Corporation where our students had the privilege of using their most sophisticated digital educational piano this semester.  It is always kind of stressful preparing a number of students for a recital, which we do twice a year.
 
I started to feel a "crash" coming on, like my nervous system couldn't handle all of this.  I had 2 miserable days last week of feeling like I was sliding back into the old familiar FMS/CFIDS muck again - not being able to function, having to stay in bed(although it doesn't actually relieve the brain fatigue), etc. etc.  Yikes!!  Well, right then I realized that I had found my limit!   My husband was right!  Instead of pushing myself to do everything, I quickly axed any extra activities from my schedule (boo hoo) and decided to put my health first, because if I went down the tubes again, I would not even be able to work the part-time hours that I now have at the school, and my income is absolutely necessary for our household survival, since my medically related expenses and (lousy) health insurance eat up most of my income.  I know many readers can relate to that...
 
Obviously, some of the severe stresses we must go through in life cannot be avoided, and they will eventually cause us to have a fibro crash because that's just how this illness is.  However, this time, I was very fortunate to be able to change my circumstances and reduce stress immediately and not wait until my health had gone over the cliff!  I took care of ME for a change! 
 
My Tip #1 for coping with FMS at www.fms-help.com/tips.htm says, "REDUCE STRESS."  Of course it was disappointing, but I had to resign or back away from all excess commitments and responsibilities that I had taken on.  My husband says, "You need to learn to say NO."  The trouble with that is, I like saying YES!  I like people.  I like to work.  But my body keeps saying, "NO!" and won't cooperate...
 
Anyway, I continued to take my helpful meds and supplements www.fms-help.com/what.htm and got lots of rest, cancelling everything that I could.  The essential oils were very effective this time in rescuing me from the impending disaster!  I was so grateful for them!  I applied the oils that work best for me and spent some time blocking out ALL stimuli.  It really helps me at times like this to lie down in a quiet room, put in foam ear plugs and wear a black sleep mask to block out all light.  I breathe shallowly and try to calm myself down.  I have a HUGE "Do Not Disturb" attitude about me during this time.  (There are a lot of fascinating links on my homepage at www.fms-help.com to articles about how our brain, autonomic and central nervous systems are at the root of our FMS symptoms.  I think some kind of virus is at work in our bodies that messes up the function of the regulatory glands in the brain.  Check out "Drained by the Brain" at www.fms-help.com/yuppie.htm, an article from Australia.)
 
 Well, as I was going down the tubes last week, I even contemplated filing for disability.  I have tried not to do this since 1982, but who knows what the future holds?  For those who may be in this process of filing or thinking about it, see my page at www.fms-help.com/disability.htm with tips from readers who were successful in getting SSD for fibro.  I have been seriously occupationally challenged with FMS/CFIDS for the past 25 years.  I will never be able to hold a full-time job again.  And if I weren't a piano teacher and church musician, I really don't know what I would be doing for a living, since I can only work part-time, and often had to quit part-time jobs in the past because my health was so undependable - even for just a measly 20 hours a week.  I think that my sleep disorder www.fms-help.com/insomnia.htm is the main thing that hinders me from being a fully employed person.
 
Like it or not, I have found my limits and must accept them.  I seem to be "okay" now, although not quite back to "normal" yet.  I was able to take some students shopping yesterday for recital outfits, I went to a wedding today, and now it's getting late, so I must sign off and get my music ready for church tomorrow.
 
I hope you are finding ways to manage your FMS/CFIDS too and that my newsletter is helpful.  I am so glad for this opportunity to share things that help us cope with this highly misunderstood illness. 
 
If all else fails, it is good to know that others understand and care.  Our world is becoming so much more vicious and unkind these days, so let's try to be kind to others even when we are feeling lousy.  We never know what battles others are facing too. 
 
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.