DOM'S FMS/CFIDS NEWSLETTER
www.fms-help.com
 
May 7, 2009 - today is the National Day of Prayer
 
May 12, 2009  - National Fibromyalgia Awareness Day
 
Please respond to Reader 2 in Topic 17 about flu shots.
 
A Christian-based newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.) and their families.
 
26 TOPICS IN BLUE.  READERS' COMMENTS IN BLACK.  MY COMMENTS IN TEAL.  DON'T MISS RED TOPICS!
 
Dom's Quick Links:   Fibro Story  CFIDS Story    Insomnia Story    Newsletter Archives   Med List   Homepage  Previous Newsletter
 

1.  READERS WRITE
 
 
"I have found your website www.fms-help.com very helpful.  My husband suffers with fibromyalgia."
 
 "You truly bless a lot of people with all you do for the fibromyalgia cause, and I thank you soooooo much!"
 
"I found your site while searching the internet for Fibro sites. You have some incredible resources listed on your site!
 
"Thanks for all your brilliant Fibro information that is making my quest for better health more understandable and informed."
 
"I am so thankful that I found you 10 years ago and for what you do."
 
"I do not recall before reading a "Christian based newsletter."  I think it is a wonderful statement.  It is such a GIFT of refreshment!"
 
"Thank you for including the verse from 2 Corinthians."
 
"I stumbled upon your website today and found it to be very informative and supportive."
 
"It is nice to know there are other people that understand what we go through.  You really do feel all alone and like you are totally losing your mind!"
 
 
 
2.  FIBROMYALGIA AWARENESS DAY - MAY 12, 2009
 
Check out the National Fibromyalgia Association:  www.fmaware.org/site/PageServer?pagename=community_awarenessDay   I encourage my readers to send an email on this day, designated for Fibromyalgia Awareness, to their friends and family. 
 
Here are 3 particularly good articles to share--
 
Understanding Fibromyalgia - by Karen Lee Richards
An open letter to anyone who has a fibromyalgia patient in his or her life
www.healthcentral.com/chronic-pain/fibromyalgia-287033-5.html 
 
 Poem by Mary Hastings
When You See Me
www.fms-help.com/poem1.htm
 
Classic, short article by Terri Been
My Name is Fibromyalgia
www.fms-help.com/mnif.htm
 
These articles explain fibro to people who don't understand.  They are "non-whiny."  That's important because every person (fibro or non-fibro) faces enormous struggles, sorrows, and challenges in life, so we don't want to sound self-absorbed, but we DO want people to know how debilitating our illness can be so there can be more compassion and understanding.  My husband is a pest control technician (bug man), and he is always advocating for us FMS/CFIDS sufferers, telling people on his route about his wife who has fibro.   People will say to him, "My sister has it, and I don't know what's wrong with her!  She used to be so busy and involved in everything and now all she does is lie on the couch!"  And we all know about those AWFUL comments we get from time to time.  The latest zinger that came my way was, "If you would only get out and trim these hedges, you would feel a lot better" (spoken by a relative in my backyard....sigh!)   See my letter to Congress about FMS/CFIDS in 2006 www.fms-help.com/congress.htm.
 
 
3.  OBJECTIVE PROOF THAT WE ARE SICK
 
From a reader--
 
"I recently went to hear a lecture by Dr. Cheney, an international expert on CFS.  He mentioned a test called exercise ergometry with gas analysis, or some have called it bicycle ergometry with gas analysis. It measures oxygen utilization and if you get certain numbers as a result of the test Social Security approves the claim, no problem.  He said that there are two places that do it correctly for CFS patients. One is in California and another in Ithaca, NY.    I am wondering if any of your readers have heard of or taken this test.  Objective proof of how sick I know I am, despite "looking good" is what I am looking for.  Here's the link to this article: http://aboutmecfs.org/News/PRJan09Pacific.aspx.  It might be of interest to your readers."
 
 
 
4.  MARRIAGE TROUBLE
 
FROM DOM:  If your marriage is strained or in trouble, visit MARRIAGE MISSIONS at www.marriagemissions.com.  You can ask questions, read posts, get advice, etc.  My marriage page, MARITAL HARMONY at www.fms-help.com/marriage.htm, is for wives only.  The Marriage Missions site is for husbands and wives.  It addresses marriage, infidelity, separation, abuse, divorce, re-marriage, step-families, and much much more.  With FMS/CFIDS, marriage and family problems can make our condition worse due to emotional stress (stress being our worst enemy! - see Tip #1 at www.fms-help.com/tips.htm), so the Marriage Missions site looks like a good place to unwind and gain insights and tools.

 
 
5.  AVIAN BIRD FLU SCAM
 
From a reader (it relates to swine flu as well)--
 
This was posted by Bloomberg, a major business
news network over the weekend:
 
"The World Health Organization is set to declare the deadly swine flu virus
outbreak in Mexico and the U.S. a global concern...potentially prompting
travel advisories...
 
An emergency committee of the WHO in Geneva will declare the outbreak
"a public health event of international concern" in a teleconference that
began at 4 p.m. today, said the person, who spoke on condition of anonymity
because the meeting is confidential."
 
If you're over 40, you've seen the "swine flu" routine before.
 
It came out of the blue. The government created hysteria
over it and tried to herd everyone into mandatory vaccinations.
 
The vaccinations killed and disabled numerous people
before they were discontinued.
 
Here's some material about ANOTHER government/media
created hysteria-hoax, avian bird flu.
 
The mechanics are the same.
 
This video starts slow, but is worth watching and studying.
 
http://www.brasschecktv.com/page/609.html

 
 
 
6.  NEUTRALIZING VIRUSES
 
From a reader--
 
HOW TO STOP SWINE FLU
 
http://hubpages.com/hub/How-To-Stop-The-Swine-Flu 
 
Dr. Emanuel Revici discovered that ALL forms of viruses are neutralized by fatty acids!
 
 
 
 
7.  ELECTROMAGNETIC FIELDS & PREGNANCY
 
http://articles.mercola.com/sites/articles/archive/2009/04/30/Why-Where-You-Sleep-Matters-If-You-Want-a-Healthy-Baby.aspx
 
 
 
8.  LEVAQUIN
 
From a reader--
 
"In response to the Levaquin danger www.fms-help.com/050109.htm, ALL of my health problems started about 2 weeks after finishing a first ever prescription to Levaquin for an upper respiratory infection.  Sure does make me wonder."
 
 
 
9.  POOR NUTRITION IN THE WOMB TRIGGERS PERMANENT GENETIC CHANGES
 
http://articles.mercola.com/sites/articles/archive/2009/04/30/Poor-Nutrition-in-the-Womb-Triggers-Permanent-Genetic-Changes.aspx
 
FROM DOM:  This was of interest to me in wondering how far back to look for the CAUSE of FMS/CFIDS.  Is it genetic?  From viruses?  Poor pre-natal environment?  Who knows?!
 
 
10.  SUFFERING
 
From Rest Ministries www.restministries.org--
 
Suffering teaches us--

1. the value of full surrender to God (1 Peter 4:1-2)
2. the value of patience (1 Peter 2:20)
3. the value of obedience (Philippians 2:8-11)
4. the value of prayer Philippians 4:6-7)
5. the value of studying the Scriptures (Psalm 119:67,71).
6. contentment (Philippians 4:11-12)
7. sympathy for others (2 Corinthians 1:3-4)
8. it produces the fruit of righteousness in our lives (John 15:2)
9. Probably the greatest benefit to suffering in the life of the
believer is that it produces a deeper intimacy with God.
 
 
 
11.  IRRADIATED FOOD CAUSES BRAIN DAMAGE
 
http://articles.mercola.com/sites/articles/archive/2009/04/25/Irradiated-Food-Causes-Brain-Damage.aspx
 
 
 
12.  ANTI-VIRAL TEAS
 
From a reader--
 
" I looked up the best antiviral teas. I found out that White tea is first on the list, green tea is # 2.  And plain ole raisin tea is an antiviral tea. These teas can help protect the immune system and help to protect us from viruses."
 
 
 
13.  "THORNS IN THE FLESH"
 
2 Corinthians 12:7 - "And lest I should be exalted above measure through the abundance of the revelations, there was given to me a thorn in the flesh, the messenger of Satan to buffet me, lest I should be exalted above measure."

From a reader--
 
"Oh Dom, i dont even want to think about "thorns in the flesh". I feel like i have been pulled through a bramble bush backwards, i have so many "thorns". I have prayed and prayed almost begging God for at least a bit of relief, but things just seem to be getting worse. I got to the stage where i have been suicidal. I cant live this nightmare for much longer! And as far as drs are concerned, i give up! I have in the past been referred to phyciatrists (who immediatly put me on anti-depressants, anti- phsycotics and so on. And what happened? All they did was make me worse than i already was. i stacked on even more weight than i was already carrying, AND i now have liver problems because of the toxicity of the drugs. Wow - I really needed that!! I sometimes say to my husband that i liturally hurt from head to toe, and thats the truth of it. Why cant the medical profession get it into their thick (and stubborn) heads that FMS and CFS are VERY,VERY REAL. It is not "all in our heads" We are genuinely suffering and its about time people understood that. Even my own adult children dont give a damn! And that hurts, it really does. Yet, our pet cat is unwell today and he is being nursed, kissed and getting every ounce of attention from them, while i HAVE TO just keep struggling on to do what work i can, when i can, cook meals even though my back,legs and hips hurt so much that i am cooking through a fog of tears. i think this disease is the wickedest there is. If we had something like cancer others would care, would understand. But because this is invisible to the eye and to blood tests,scans etc etc we are treated like "loonies". I am crying as i type this e-mail for two reasons. #1. I hurt so much #2. All I want is to be understood. Is that too much to ask? I know i am rambling but that is the emotional state i am in right now. I dont even know where I stand with god at the moment, I am so confused.Because i am not 100% healthy, my own biological family have "wiped their hands of me". THEY cant handle it. Huh!! What do they think its like for me?"
 
FROM DOM:  I feel your pain.  See these pages about relationships and fibro:  www.fms-help.com/072006.htm and www.fms-help.com/072006.htm.  And if you've had a disrespectful visit with a doctor about your fibro, see www.fms-help.com/doctors.htm.
 
 
14.  PFIZER'S FIBRO PUT DOWN (TV AD FOR LYRICA)
 
From a reader--
 
Pfizer's Fibro Put Down
Even if Lyrica has not been helpful for controlling your symptoms, the many widely publicized TV commercials sponsored by the drug's manufacturer, Pfizer, have certainly improved awareness of your medical condition. Some advertisements have been better than others, but some Members feel the latest TV ad starts off as a put down to fibromyalgia (FM) patients everywhere. It shows a woman with a tray full of food at a family gathering making the following statements:
 
"My fibromyalgia muscle pain is real. But I am not the type of person to just lie down and quit, not with all these people counting on me. I walked right in and asked my doctor about Lyrica."
 
It's doubtful that Pfizer intended to imply that other fibromyalgia patients are the type who just lie down and quit, but this is how the commercial is being perceived, and it couldn't be further from the truth. The 2008 Fibromyalgia Network survey on employment issues clearly showed that patients are doing everything possible to hang onto their jobs and careers. You are definitely all fighters and you don't take anything laying down!
 
As a survivor, let Pfizer know a few key factors about living with fibromyalgia that you would like their next commercial to portray. The company has a website that invites FM patients to share their stories. Click on this link to the Lyrica website and identify yourself as a fibromyalgia patient representative and consumer, and then briefly point out what you would like for them to convey in their next commercial (in other words, state how you would like a person with fibromyalgia to appear). Are there certain strengths that you would like the patient in the commercial to portray? Also, are there specific symptoms of fibromyalgia that you would like to see emphasized? Please give this some thought and take the time to offer useful advice and constructive suggestions. Without your input, Pfizer could very well botch another commercial!
 
If you have not seen the TV ad above, you can view it online. Of course, viewer discretion advised!
 
LETTERS FROM NEWSLETTER READERS TO (or about) THE PFIZER AD--
 
Reader 1--
 
"While on Lyrica I felt some relief in my FM symptoms; however, one of the side effects is swelling, which was not explained to me when it was prescribed... either by my doctor or the pharmacist. I have edema and the Lyrica made my feet and ankles swell like elephant legs. My doctor wanted me to go off Lyrica because of the swelling. For some reason he was not aware that I needed to taper off of it; so instead he had me stop it right away. The day after I stopped the medication, I felt neuralgia pain in my back, which has not stopped since Sept 2008. It feels like shingles without the rash. I finally found that there is a percentage of people who can have this reaction. I had to go back on Lyrica and am now trying to taper off very, very slowly. If this doesn't work I'll need to see a neurologist. In your next commercial I would suggest that you don't show what appears to be a healthy woman entertaining a host of people. Those with Fibro, even on Lyrica, don't have that kind of energy. All Lyrica did was make it a bit easier for me to function to a higher level. I no longer entertain like I used to do. I have had loss of family and friends because of FM. Your commercial is misleading. It may help but not to the extent of what your commercial represents. Besides, having to go off Lyrica for many like myself found that the side effects and going off completely is nor worth even going on it. It is NOT a magic bullet as your commercial implies."
 
 
Reader 2--
 
"I DID IT!  I must have typed about three pages worth!  I tried my best to be kind and gentle, but I let them have the truth on the commercial; I also informed them from a PATIENT'S form of view.  I even told them that I thought they only had a doctor's point of view....and I told them a little bit of a day with a fibromite. Enough of us  doing this, and we just MIGHT get a new commercial. I told them that I could never HAVE a tea party for my friends like that....and if I DID struggle and get through it, I certainly could not be lifting any tray.....not if I wanted to lose the use of my arm the following day!  Thanks for giving ME this opportunity.  It felt GOOD to voice myself to someone who MIGHT listen."
 
 
Reader 3--
 
"I just gave that drug company a piece of my mind ....what's left of it... in a nice way."
 
 
Reader 4--
 
FROM DOM:  This reader got a response from Pfizer - see below, after her comments:
 
"I was appalled at the Pfizer commercial too! I wasn't going to just lay down and quit either. I went to their website & emailed them. They emailed the message below. They just don't get it! I can't take their medication, which I told them. I said so if I can't take your medication should I just quit? What terrible information they are giving to the public about our chronic illness.  I am planning on writing them this next time. Maybe they might just get it if we all email them or write them. They think I am a customer, even though I said I couldn't take their medication.  Here is their mailing address if needed...."

Pfizer Inc.

95 Corporate Drive

Bridgewater, NJ  08807

1-800-438-1985

Here was the response received from Pfizer--

Thank you for taking the time to contact Pfizer.

We received your comments in regards to our recent Lyrica commercial. We
value the feedback we receive from our customers and your comments are very
important to us.

While the content of our advertisements may not appeal to everyone, our
main focus is to make all consumers aware of important information about
health and wellness and the best way to do this is through a broad range of
advertisement.  We believe this advertising campaign shows that woman can
actively enjoy themselves outside of the work place, with friends and
family, while remaining productive in there everyday activities.

Thank you again for taking the time to share your feedback with us.

Kindest Regards,
Pfizer Inc.

 

HERE IS MY LETTER TO PFIZER (okay, so I wasn't so nice...)

I have been a fibromyalgia patient since 1982.  I have operated an FMS/CFIDS information and support website at www.fms-help.com since 1996.  I object to your recent TV ad for Lyrica about the woman who says that she isn't the type to lie down and quit.  Oh MY!  You have no idea what you are talking about!   People with FMS do NOT have the type of personality to lie down and quit!  We were the "movers and shakers" of society, many of us on fast-track careers, vitally involved in the world before this monster sabatoged our lives.  Please see the list of occupations my newsletter readers had when fibro debilitated them - www.fms-help.com/occupations.htm - we are a hugely diverse group of men and women.  I have thousands of readers all over the world.  We are deeply offended at your commercial.  Additionally, many of my readers who have tried Lyrica have had to quit because of not being helped, or having terrible side effects.  I hope your scientists will truly find help for FMS victims.  Do you know the cause of FMS?  I am not sure that researchers do, but I have listed many possible causes at www.fms-help.com/causes.htm.  The bottom line for me is that I think it has genetic and viral origins and acute stress triggers the virus that negatively affects the brain hypothalamus and nervous system.  I have heard from thousands of men, women, and teens all over the world who share identical symptoms, despite their differences in gender, race, age, climate, diet, culture, occupation or lifestyle.  I can only assume it is caused by a virus.

 

15.  COLDS & CANCER
 
From a reader--
 
"HI  DOM -  JUST WONDERING IF THE COMMON COLD IS CONNECTED WITH CANCER, AS IN THE STATEMENT BELOW ON CANCER.  I WONDER IF ANYONE HAS EVER THOUGHT IN THIS DIRECTION.  THE COMMON COLD SETS THE IMMUNE SYSTEM ON HIGH FOR A WEEK OR SO.    WHAT DO YOU THINK IN ALL YOUR RESEARCH AND KNOWLEDGE ON CFS/FIBRO?    IN THE PAST THE DRS. HAVE TOLD ME THE AVERAGE IS TWO COMMON COLDS PER YEAR.   IT HAS BEEN A LONG TIME SINCE I HAVE HAD A COMMON COLD.    AM I  TOO FAR OUT THERE?  DO YOU GET THE THOUGHT ON THIS?    INQUIRED WITH ANOTHER FRIEND WHO HAS HAD A CANCER PROBLEM - SHE SAID YES.   SHE DID NOT HAVE A COMMON COLD  (BEFORE HER DIAGNOSIS)  FOR AT LEAST 8 OR SO YRS.     MAYBE THE COMMON COLD IS GOOD FOR US.   WHAT DO YOU THINK?"  
 
Then she quoted this--
 
"Cancer researchers have discovered that people who have a lot of colds do not get cancer, and people who develop cancer have usually not had a cold for over 10 years before the diagno­sis.  They can not understand why this is so.  The answer is simple: if you eat properly and follow all the rules of good health, you will not have colds or cancer.  But if you eat too much or eat wrong things, your body will try to get rid of the excess or tox­ins by conducting an acute disease such as a cold.  If it is suc­cessful, the body will not degenerate to the point of having can­cer, arthritis, or whatever.  But if you take medicines and sup­press the symptoms of the acute disease, the body loses its abil­ity to conduct acute diseases (colds, flu, measles, etc.), and so allows degenerative diseases (cancer, arthritis, hardening of ar­teries, etc.) to develop."
 
FROM DOM:  Intriguing question.  If you have information or comment, write dombush@bellsouth.net.
 
 
16.  FIND A FIBRO-FRIENDLY DOCTOR
 
From the National Fibromyalgia Association - http://www.fmaware.org/site/PageServer?pagename=resources_hcProviderDirectory
 
Also, here's a list compiled by the Million Letter Campaign www.fms-help.com/letter.htm volunteers in 2004 - www.fms-help.com/DOCTORLIST.xlr (click on link, SAVE, then open) - these are listed by state - you will see comments about the docs in the far right hand column of the spreadsheet.
 
 
17.  FLU SHOTS & VACCINES
 
Reader 1--
 
"While reading this latest newsletter www.fms-help.com/050109.htm, I was thinking that I was one of those 35 million people in 1976 that got the swine flu vaccine...my mom INSISTED I get it while at college....I was VERY sick after getting that shot, and failed my next day's organic chemistry mid term !  Believe me, organic chemistry was HARD ENOUGH even when you felt well !!  LOL  But my fibro didn't start until many years later, maybe 23 years later, after a car accident and subsequently being sued by the person who hit ME....anyway, I am thinking maybe that vaccine way back when tipped me even more into the area of me developing FM, with the car accident the last straw.  I am adopted, and so have no idea about my female biological side of my family (maybe I have female blood relatives who have FM/CFIDS/Lupus/etc.), and I truly believe there is a genetic factor for those of us who develop FM."
 
 
Reader 2--
 
Please respond directly to reader Magda ho@scanfin.co.za - "I was diagnosed with fibromyalgia 2 years ago.  March 2007 I went for a flu vaccine. The day after that I could hardly walk.  I was in constant pain from my neck down to my knee but only in the right side of my body.  No pain tablets seem to work.  Some days the pain are worse than other.I also suffer from insomnia and IBS.  I also tested positive for the Epstein Barr virus.  I can't understand because I never get sick.  What I would like to know---is it possible to have fibromyalgia only in the right side of your body. I also have severe scoliosis.The doctors here in South Africa think I am crazy when I told them about the pain because I don't look sick at all. - Magda  ho@scanfin.co.za"
 
 
FROM DOM:  Personally, I have avoided flu shots, afraid of what they could do to my fragile immune system.  I am concerned about our young people who are being mandatorily vaccinated for school and college, and also for our military personnel.  Like this reader, I too wonder about the origins of my FMS/CFIDS.  I took the polio vaccine on a sugar cube around 1960, developed debilitating insomnia in in my teens, was in a car wreck in my late 20's, fibro onset at age 30, CFIDS onset at age 35 after being taking 6 different antibiotics to cure a severe upper respiratory infection.  I am now 57 and can work part-time with the help of things listed at www.fms-help.com/what.htm - but I am definitely not "cured" and cannot live like a "normal" person, particularly in the area of travel, which causes debilitating fatigue.  30 miles is about my limit, ever since I worked in toxic mold www.fms-help.com/mold.htm in 2005.  Something is still wrong with my brain and nervous system.
 
 
18.  NATIONAL PAIN CARE POLICY ACT
 
http://www.healthcentral.com/chronic-pain/c/5949/68632/national-pain
 
Reader 1--
 
"Dominie,  I have no doubt that this gentleman's doctor said something about the government banning opioid based medications.  In fact, the ban has already occurred.  But the ban is not for all opioids.  And as the FDA hears more and more testimony about the safe useage of certain forms of opioids they have, so far, been willing to work with people on the issue.  As of the 9th. of April, the FDA has added back liquid morphine to the list.  There are also other forms of opioids that were 'grandfathered' that were never banned to begin with, these are the older forms of opioids that would still be available.  Perhaps the following links will make it a little easier to understand:
 
http://www.fightingfatigue.org/?p=4005
 
http://tinyurl.com/d85b5f
 
http://tinyurl.com/cdfqky
 
Any opioids approved for use by the FDA since 1938 will still be available.  Unfortunately, a number of drug companies began modifying their opioids after 1938 without getting FDA approval as they should have done at the time of modification, and these are the ones that will be banned.  They include the 'time release' formulas, etc.  So while a number of the present day opioids that many of us are familiar with now are currently under ban, there are still opioid medications that are not, and are still available for use in treating chronic pain. I don't know yet, but am hoping that the manufacturers who have been making the 'unapproved' forms of opioids will go ahead and start the process to obtain FDA approval for these forms of medication.  Had they done so when they should have, this wouldn't be happening right now.  It is certainly an issue to keep watching, but is not as all-encompassing as some people would like to have us believe."
 
Reader 2--
 
"I was diagnosed with fibromyalgia and chronic pain syndrome in 2006.   Be encouraged that we have an advocate for all of us with chronic pain. The AMERICAN PAIN SOCIETY is excited about the ?National Pain Care Policy Act?. APS is targeting Senators who sit on the health sub-committee. Senator McCain, who is quite familiar with suffering, sits on that committee. We have had a representative from our local Power Over Pain group and also an AZ rep from the American Pain Society visit him and encouraged him to support the National Pain Care Policy Act. He will support and vote for that policy.  Please  google American Pain Foundation and be encouraged by their tireless efforts. They are our true advocates for people with pain, who are often not able to speak for themselves. They diligently work to make a difference in how pain is assessed and treated in America. You also can google  the National Pain Care Policy Act of 2009, HR 756 and S.660."
 
 
19.  MEDICINAL MARIJUANA
 
From a reader--
 
"Here in Israel, being almost the 51st State - HA!, nothing is approved by our Ministry of Health until it is approved by the FDA. One of the interesting developments here is the possibility to receive a license from the ministry to use and grow medicinal marijuana as long as it's recommended by a person's specialist, my neuro or other people's oncologists. It has taken years to reach this point. On the other hand, there's no problem to get opioids for chronic pain. I've been through several on the way to Lyrica. The worst was Oxycontin. I had to add to the dosage every few weeks until I finally went off it cold turkey when it caused me extreme and unbearable constipation. I can only say the M helps me more and doesn't cause any side effects."
 
FROM DOM:  Years ago, a husband of a lady with severe fibromyalgia called to say he was trying to get his wife to smoke pot to relieve her pain, but she refused.  He wanted me to convince her to try it.  After a long, trying conversation with him (he was obviously a pot user, if you know what I mean), I pondered this question.  If pot is legalized for medicinal purposes, it might be hard to keep it from being used "recreationally" as well.   However, I am for anything that alleviates unbearable suffering.  Does anything know if marijuana works for everyone in pain, or like everything else so far, it would only work for some?
 
 
20.  ADDERALL FOR FMS
 
From a reader--
 
"A doctor in GA has told me for years that she has had impressive results with Adderall or Ritalin in treating her FMS patients. She also uses it for her patients with Parkinsons and other disorders and has seen a huge difference. She told me to ask my doctor to try it - and it has helped a lot with the fatigue and also keeps the flares to a minimum compared to how they were before when I couldn't even do anything but sleep round the clock for weeks at a time because of the pain and fatigue. I have so much pain from neuropathy and spine issues that pain is just part of my day to day existence but I definitely have seen the benefit of the Adderall. Here is her website: http://www.sounddoctrin.com/add_adhd.htm - 'ADD and FMS may actually be different manifestations....of a common underlying autonomic nervous system dysfunction'."
 
FROM DOM:  I would be interested to hear from readers who have used stimulants such as Adderall to help with fibro fog, cognitive problems, or fatigue caused by FMS/CFIDS.  Please write dombush@bellsouth.net.  I have reported on Adderall in previous newsletters - search archives at www.fms-help.com/newsletters.htm.   Also, check out this site: http://addfibro.com/ - related to fibro and A.D.D.
 
 
21.  OPIOIDS & CONSTIPATION
 
See Topic #18 above.  Also, go to www.oil-testimonials.com/6861 - click SEARCH and type in Alkalime.
 
 
22.  WRETCHED INSOMNIA
 
From a reader--
 
"I have to practically beg my doctor on my knees to get sleep meds, as she says they need to be taken for 2 weeks only!!  This--after over 30 years of insomnia. Mine was so bad (2 or 3 hours per week), I developed very severe chemical sensitivities which have lasted nearly 7 years now and stop me from mixing with others. Soul destroying!!"
 
FROM DOM: How awful!  This doc just doesn't get it!!  My insomnia story is at www.fms-help.com/insomnia.htm.  Insomnia can wreck your immune system.  My doc (internal medicine) has been wonderful about prescribing meds for me to sleep. He said if I can get 8 hours sleep (SHOCK!) my other complaints would go away.  I have to take a LOT of things for sleep, as you can see on my list at www.fms-help.com/what.htm, but I will die without them.  Maybe this reader could change doctors and get one with a heart!!  (BTW, if you've had a bad doctors' visit, here's a site I made for that: www.fms-help.com/doctors.htm.  There is such a thing as Fatal Familial Insomnia.
 
 
23.  DR. TEITELBAUM'S WELLNESS SEMINAR
 
Are You Struggling with Chronic Fatigue Syndrome or Fibromyalgia?
FREE Wellness Phone Seminar with Dr. Jacob Teitelbaum
The world's leading authority on CFS & FMS!
Hosted by Jennifer Morganti, ND, NEEDS Education Director

Free Wellness Phone Seminar: Thursday, May 21st 6pm - 6:45pm EST
Call 888-634-1380 ext. 2230 to register
Email:
register@needs.com Online: www.needs.com
 
 
24.  DRUGS ARE POISON
 
From a reader--
 
"Opiates kill a lot of people. I wonder if there are other pain killing options besides opiates. I had an opiate addiction after just two weeks on pain meds for my hysterectomy. When I quit taking the pills I had a full withdrawal including delerium tremens. I could have died!
 
I feel for chronic pain sufferers ( I am one!) and have had highly disabiling pain for many years now (since 1992). I wish I could blank out my pain on some wonderful opiates without fearing being addicted or even killed by them.
 
The problem with opiates is that they kill people. A LOT of people! Of course, those same people that opiates kill are usually smoking crack and shooting up heroin (another opiate).
 
I wonder if banning them would help? Americans seem to love their drugs. After a couple hundred years of pharmaceutical companies drilling into our brains that we need to 'take something' for this or that or the other thing, we have developed a dependency culture. Drugs are ok in our minds, even though that isn't true.
 
I had a hard time getting used to not treating my migraines with anything. I wait them out now. The medicines are far more dangerous to me than the migraine. I have migraines almost every day! I am slowly learning to work with my body instead of poisoning the pain away. I am learning what to eat, what not to eat, how to massage the pain away, when to stay out of bright light, etc. I suffer less than I used to suffer with medications.
 
When I was in medical school the anatomy teacher said, "All drugs are poisons. Every one of them."  I have come to believe what she said is completely true. Why should I poison my body? I probably suffer because I'm already poisoned! What's the point in poisoning myself further?"
 
 
25.  OIL OF OREGANO
 
From a doctor--
 
"Oil of oregano is better for bacterial issues--I have seen people respond to this when other antibiotics have failed, and it is cheap and safe.  It is anti-bacterial and anti-yeast."
 
FROM DOM:  Check out oil of oregano at http://dom.younglivingworld.com.  Read testimonials about oil of oregano at www.oil-testimonials.com/6861 - type oregano in the SEARCH box.
 

26.  DOM'S UPDATE
 
I'm doing fine - hanging in there with my job as a piano teacher and also playing for my church www.fms-help.com/MBC.jpg.  I must manage stress levels carefully www.fms-help.com/tips.htm, but with the help of many things www.fms-help.com/what.htm, I am living a pretty good life despite FMS/CFIDS running in the background.  Right now I am helping my husband with a yard project - ugh!  It is boiling hot here in Florida.  We are digging up grass and planting it in the dead areas.  I am glad my calling in life is not landscaping!
 
Dominie
 


II Corinthians 1: 4 - "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.