DOM'S NEWSLETTER
www.fms-help.com
February 9, 2010
 
 A Christian-based newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.) and their families. 
 
 24 TOPICS below - Don't miss the RED ones!   Readers' comments in BLACK.  My comments in TEAL.
 
Dom's Quick Links:   Fibromyalgia    CFIDS    Insomnia    Search Newsletters    Meds & Supplements    Homepage  Previous Newsletter
 

 
1.  READERS WRITE
 
"I cannot tell you how refreshing, educational and amazing your site is. Thank you for pouring your heart into the site to help others like me."
 
"I'm loving your newsletters and site!  What a lifesaver you are for posting all of this in one forum...many thank you's!"
  
"I have been reading your news letters over and over again. They really help! Thank you very much for being there for me and my family!" 

"Love your  newsletters. Thanks for taking the time to write and send them."

 "I really enjoy and appreciate your newsletters. God bless you for helping others in this way.  I tell everyone I meet with Fibro or CFS/ME about it."
 
"I thank God for you.  Thank you for your great newsletter.  You're an amazing inspiration and a wonderful help.  It takes a lot of hard work and time to keep your website going.  Bless you for your time, dedication and kindness in helping people from all around the world."
 
"I just finished looking at your website www.fms-help.com. What a treasure-trove of helpful information."
 
"I love your website. You seem to have gathered a lot of different and interesting things or information together from all over the place, and now its all right "here" in a nutshell!  Trying to read it all...WOW!...I'll be busy for a long time! In some ways it's more interesting to see and read your "take" on this condition than it is to do the same thing on some of the other more conventional websites on fibromyalgia. I like your words "cash-ectomy" and "job-ectomy"...haven't heard those before."
 
 "I was diagnosed in last year with FMS/CFS and was relieved to find your web site.  I am finding it very informational."
 
  
 
2.  ALOE FOR CFS
 
From a reader--
 
I spoke to a lady that  has EPV /CFS  she lives in Colorado and went to NYC to consult with a doc there who specializes in EPV /CFS etc.  he advised her to drink , raw, live, whole aloe vera juice - she says ever since she started drinking this she has felt so much better (has been drinking it for years)  I wanted to find out if any other members ever tried this product?  you cant buy the cheapie version ..there is a special processing that it needs to go through or you will not get the benefits of the raw aloe.  The owner of my health food store advised me that Herbal Aloe Force is the best and it says right in its brochure helps with EPV and CFS.  it was 27.00 for a 2 week supply .. I'm desperate .. I am now unemployed and very concerned about my future so I spent the money and am praying it works .. here is a link that explains the benefits to CFS .. www.chronicfatiguesolution.com/aloe-vera.htm
 
FROM DOM:  I tried a very high quality aloe years ago without success, but different things help different people.
 

 
3.  PEOPLE WITH FMS/CFIDS SHOULD NOT DONATE BLOOD
 
From a reader in the medical field--
 

"I attended the speech given by Dr. Judy Mikovits in Santa Barbara recently [re:XMRV www.fms-help.com/XMRV.htm].  She did say specifically that we should not be donating blood."


 4.  DOCTOR WHO DOESN'T BELIEVE IN FIBRO

 From a reader--

 "Dom - I would suggest that this reader try to find another doctor. I once had such a doctor. I now have a doctor that believes that it partly associated with a virus and partly due to our bodies not being able to process things because of the virus and then having all these chemicals to deal with as well.  When people don't believe you, then they don't tend to limit use of chemicals that make you sick.

Secondly, the VA considers fibromyalgia a "symptoms of an undiagnosed illness" and it does give Service Connection (recognized disability for this with pension etc). I see it every day in the computer.  Here is the official government site - look under that title: "symptoms of an undiagnosed illness"

http://www1.va.gov/opa/publications/benefits_book/benefits_chap02.asp

They are followed by Rheumatology Department. They have fibro clinics and fibro support groups.  This is a common problem for gulf war vets."

 FROM DOM:  See my good docs / bad docs page at www.fms-help.com/doctors.htm.


  5.  COLD SORES, DMSO & OXYGEN DROPS

 From a reader--

 "Re cold sores, if there is a compounding pharmacy in the area, call them as there is a balm that clears and keeps them clear.  They make a regular and special cold sore.  Usually about 5/tube, but absolutely works.  After sending to friends and family suffering with this, they have had no breakouts!  This is a product that can be mailed as well, in case there is not one near you.  However, they are becoming more common as HRT is being searched for those who do not want to use synthetic formula."

 FROM DOM:  I've had blessed relief from ever worsening cold sores these past 10 years.  They were awful!  A reader told me about oxygen drops and DMSO cream.  This has worked for me since last August.  Truly a miracle!  DMSO is dimethyl sulfoxide. It is an all natural substance derived from wood pulp. DMSO has the unique ability to penetrate skin barriers and traverse the body quickly. This is due to its small molecular structure and it's amazing characteristic as a solvent. DMSO also contains oxygen. Viruses cannot exist in an elevated oxygen environment. Applied properly DMSO enters the cell and immediately kills the active herpes virus. This is an indisputable fact. (Do not use DMSO when pregnant.)   The oxygen drops work by increasing oxygenation at the cellular level. The product is diluted with water or juice and ingested orally. Stabilized Liquid Oxygen is a safe, nontoxic supplement containing stabilized oxygen molecules in a liquid solution of salt and distilled water. When taken orally it makes pure oxygen available to be immediately absorbed directly into the bloodstream where it is transported to the cells where the herpes virus resides. The oxygen drops deliver the correct degree of oxygenation (variable from person to person) necessary to completely kill the herpes virus. One bottle should last 2-3 months, making it a great value. Don't be fooled by low priced products promising the same results - many of them do not contain high enough levels of oxygen to be effective.   DMSO is essential to the procedure.  Write dombush@bellsouth.net for details.


6.  CHILDREN & TEENS WITH FMS/CFIDS

 Typical letter from a concerned parent--

 "My teenage son has been diagnosed with fibromyalgia.  He is [on a lot of meds] all of which he tells me do nothing to help.  I feel it is time to try something new, as he is in much pain and getting no relief from any medication.  I feel that [one of the drugs] is having a negative affect on his mood. I would be grateful if you can help as this is very unusual in boys especially as young as he is."

FROM DOM:  Unfortunately, I hear from many teens and young adults with FMS/CFIDS.  Their school and social life is generally disrupted, and many are suffering the stigma of having an "invisible" illness.  Here's a support group for young people with FMS/CFIDS-- http://sunshine35446.yuku.com/forums/66/t/Young-Adults--teens--FMS-CFS-Fibromyalgia-Chronic-Fatigue-Sy.htmlAlso see my pages: www.fms-help.com/teens.htm (kids and teens with FMS/CFIDS) and www.fms-help.com/neuro.htm (scroll to the section about students).   And try googling the book: "Life Disrupted: Getting Real about Chronic Illness in Your Twenties and Thirties."  It's nice to know that through the internet, we are never really alone or isolated with our illness or problems!


 7.  OUR REAL HOME

FROM DOM:  Maybe all the trials and painful things that happen here are to get our mind and heart on our real home, which is heaven.  Many friends (not me, of course.....haha) are aging so fast now!  I stopped to see a couple from my former church recently, and they are all hunched over with age, live in a darkened mobile home, and both need canes and walkers - hair is all white.  A shock!  Time marches on.   What can I say, but that we are not here for long!!!   There's work we have to do while we are here and things we have to go through, but it's all preparation for what lies ahead.  At 58, I am more and more realizing that my life on earth won't last forever.  Youth is gone (definitely).  I just pray that I fulfill the Lord's will and please Him while I am here and still mentally / physically able to advance the Kingdom in some way.  I want to hear Him say "Well done, my good and faithful servant.  Enter into the joy of the Lord." 


  8. CAPZACIN CREAM

From a reader--

"In 1993 when I came down with CFS and then Fibromyalgia I used a Topical Analgesic Creme called  Capzasin P.   The onset of Fibromyalgia had with it intense "burning" pain.  When the  the worse pain would hit I would rub in Capzasin.P and it greatly relieved that burning pain.  The ingredient Capzasin is Red Pepper which also burns.  It does not make since to rub on red pepper that burns on a pain that burns, but the red pepper that burns, always beat out the burning pain in Fibro and after this creme did it's job then all of the burning would stop.  You can get this over the counter at a drugstore."

 FROM DOM:  Different things help different people.   I've been blessedly pain free for many years after suffering severe FMS pain for 14 years www.fms-help.com/fibro.htm.  My personal suggestions are at www.fms-help.com/what.htm I recommend a pain-relieving gel on this page - it is cooling and non-greasy.


 
9.  100 TIPS FOR COPING WITH FIBROMYALGIA
 
From a reader--
 
"I have just printed off all your tips www.fms-help.com/tips.htm for bedtime reading tonight.  I am an insatiable learner, so this is like manna from heaven."
 

10.  DENTAL WORK & FMS

From a reader--

"I WONDER IF PAINKILLERS NOT WORKING HAS SOMETHING TO DO WITH ME/FMS???  I HAD AN EXPERIENCE WITH NOVOCAINE - THE DENTIST KEPT ON AND ON INJECTING ME WITH IT AND STILL I WAS IN TOO MUCH PAIN FOR HER TO CONTINUE PULLING THE TOOTH - OUCH!! SHE EVENTUALLY SAID TO HER NURSE "LOOKS LIKE ITS GONNA HAVE TO BE THE GOLD ONE" DUNNO WHAT SHE MEANT BY THAT, BUT 'THE GOLD ONE' NUMBED ME UP ENOUGH FOR HER TO BE ABLE TO PULL THE TOOTH -- THOUGH IT CERTAINLY WASN'T TOTALLY PAIN FREE. I WAS IN TEARS."

FROM DOM:  Yipes!  I had a similar experience about 20 years ago when my dentist gave me 4-5 shots of novocaine before filling a tooth.  The shots never took.  He sent me out to the waiting area for 45 minutes to see if I would get numb, but nothing happened, so he finally drilled.  I paid the bill - and all the shots suddenly took effect on my drive home.  My head felt like a chunk of concrete!!  Right now I need a crown but can't afford to have it done.  However, I'm also dragging my feet because I'm scared silly of going to the dentist.  My childhood dentist in Pennsylvania did not use novocaine for fillings, so I have a horror of having any dental work done.  My mouth is paved with mercury and gold (could sure use the gold right now...ha.)  Seriously, I have to come up with $826 for this crown.  I just can't afford myself!  Has anyone looked into total sedation dentistry?  I always need nitrous oxide for any major dental work, but even then I am anxious inside.  It's a hangover from childhood.  Also, I have tinnitus (ringing in the ears) 24/7 and a weak nervous system - just the sound of the drill makes me crazy.  Any suggestions?  I'm all ears.  Please write dombush@bellsouth.net.

 


 11.  CANCER & FIBROMYALGIA

 From a reader--

 

 

"In response to #18 at www.fms-help.com/011810.htm, I had cancer, and I have Fibromyalgia. I have gone through treatments for cancer about three times now since I was 17. I was "diagnosed" with fibromyalgia at 21. that was a year ago. I would much much rather have cancer then fibromyalgia. With cancer the problem is obvious, and the cure or treatments are also obvious, and set in stone. For fibromyalgia you cannot see it, and there is no one cure, it varies from person to person. When I have my bad days, weeks, months, etc. it is so much harder to even tell someone what is going on or that  I can't do something. People think you are exaggerating and that you are looking for attention. With cancer people EXPECTED you to hurt and be sick. Trust me, I was sick with the chemo treatments, and it hurt, and it sucked to lose my hair at 18, BUT I would much rather deal with cancer ten times over again then with even my moderate fibromyalgia, if only because people BELIEVED me.  Don't get me wrong, I am fully aware that I nearly died at age 18,  but I recovered. I am in remission. Aside from occasional check-ups I am done dealing with it. I'm never going to get rid of fibromyalgia. It will always be there. For me, that scares me more then the cancer ever did. To think that my husband hasn't spent any "healthy" years with me breaks my heart. I met him right as I was realising I might have Fibromyalgia three years ago. With cancer there was a hope of becoming who I was again. With fibromyalgia, my only hope of "surviving" is to learn to be someone else. And I loved who I was before, now I'm barely a shadow of what I was."
 
FROM DOM:  This reader stated our predicament so well! 
Also, I have known many cancer patients who are able to be in church, travel, etc. 
Not so with FMS/CFIDS patients. Click on my page called  MISERY INDEX -
"CFS has one of the highest morbidity rates (degrees of suffering) of any illness,
rivaling the physical misery of advanced cardiac disease and cancer." 
I'm thankful for the level of relief that I have found.  I was diagnosed in 1982. 
Went through so much suffering and misunderstanding and losses on all levels of life. 
But I am doing better now than I have in many years.  A list of things I currently use
(meds/supplements/lifestyle helps) is at www.fms-help.com/what.htm.


 12.  ENABLING ADULT CHILDREN

http://www.scribd.com/doc/23697857/Transcript-The-Work-of-Parenting-a-Wayward-Child-Mina-Oglesby

FROM DOM:  None of us with fibro needs more family stress in our lives.

 


 13.  COOKING WITH XYLITOL

 From a reader--

 "I was just reading your latest newsletter and found this info on cooking with Xylitol on this website www.epicdental.com/t-cooking-with-xylitol.aspx.  They even mention a cook book and some free recipes there."


 14.  COCONUT OIL

 From a reader--

 "For viruses: coconut oil extra virgin--cook with it or dip chips or chicken in it--it will cause herxheimer reaction--did me --but now im much better-really.">


15.  MENOPAUSE & BIOIDENTICAL HORMONES

 From a reader--

 "I have had fibro since 1994, my triggering event being the sudden death of my then 36 year old brother.  In 1999 I hit menopause and I was the most miserable person around.  My already terrible sleep got even worse with the night sweats.  I ended up on estrogen which really did help.  I had had a hysterectomy in my 30s (I am now 60) so they did not put me on progesterone.  Then about 6  years ago I went to a doctor who prescribed bioidentical hormones and he said I needed the progesterone as it is the relaxing  hormone.  I was also put on armour thyroid and testosterone cream.  I am still on them and would not go off of them unless I developed cancer because I feel sooo much better than before!  I get my hormones checked every 3 to 4 months to make sure my hormones are in balance.  I cannot tell you what a difference bioidentical hormones have made in my quality of life!  I think the armour thyroid made a huge difference in my energy levels and the others balanced out the nervous system for me.  I still have to take drugs to sleep, but my sleep is worse when my progesterone gets too low."

 FROM DOM:  I used progesterone cream for a few years, and it did calm me.  I had a complete hysterectomy for endometriosis at age 34.  I am now 58.  I tried many forms of estrogen over the years, but it always messed up my system.  I finally got off all hormones.  I even tried plant based estrogens, but they didn't work for me.  I have been hearing good things about bioidentical hormones relieving much of the misery women go through.  And I do want to say that fibro is often triggered by severe stress, such as this reader went through. 


 16.  EXERCISE HELPED

 From a reader--

 "I was diagnosed with fibromyalgia in 1994, even though, I suffered for many years before actually being diagnosed.  In fact, I remember having pain and fatigue even as a child and into my teen years.  Of course, doctors would say it was growing pains or stress or 'just in my mind'... and so on.  But, as we both know none of these were the problem... I was dealing with the symptoms of fibro and CFS...I have tried many things and just as you found some of the things that worked at one time for me now doesn't help.  I was at one time on approximately 15 medications not including supplements I was taking at the time.  Right now I take a Soma (muscle relaxant) at night with Percogesic (over-the-counter) for pain.  I have been on many pain meds including Oxycotin without much relieve in pain level.  I have also been on Neurotin and many anti-depressants and anti-anxiety meds some of which you named in your articles.  I also take Vitamin D3 (as I am D deficiency), Elderberry,drink a Protein shake, Vitamin E, Vitamin B 150, and Fish Oil.  I like doing everything as naturally as possible, as you can probably tell.  I have tried massage therapy, PT, ultrasonic therapy, heat and cold therapy, diet (which I'm a firm believer in), exercise (which I'm also a firm believer in),  trigger point therapy, cortisone injections, water therapy, and varies supplements.  Yet, I am still in excruciating pain.  I do have a few days in between that are good days but I have just learned to live with the pain and cope.  I have to give God all the praise and honor though.. He has brought me a long way from where I was a few years ago... In 2000, the fibro got the best of me and I was forced to stop working (I'm an LPN)...In fact, I could not walk without assistance (I used a cane or walker)...I was bedridden for approximately 6-7 months with the exception of personal hygiene and toilet needs, and then, had to have assistance.  In fact, I couldn't even get my arms up to brush my hair.   My husband worked a full time job, a part time job, and then, had to come home to take care of me, the kids and the house.  Like you, God has blessed me with an awesome husband.  Many men would have fled with all he was dealt but I praise God every day that he stood by and was faithful in the 'for bad or worse and in sickness or in health' vows... He has been very committed to me and to helping me do research.  When I did adventure outside the house, I was in a wheelchair, or needed to be in one,  if out for a long period of time.  On the advice of my physician, I seeked out a ladies gym to start a light workout routine.  I started the gym using my cane as I adventured from one activity to another.. With every step I took I was on my cane.. and home to get my pain pill to ease the pain afterwards.. One day of exercise would put me to bed for days.. but I persevered and continued my routine of exercise through the pain, stiffness, and fatigue.  One day I noticed that I was able to do more and was able to go through the routine without my cane... Praise God!!!  I still needed my pain med when finished but what an improvement... I was so excited.. From that day forward I started showing signs of improvement in areas, yet, the pain and fatigue was still indescribable.  I would pray.. and God would help me to endure the pain as I worked through my routine.  I figured I hurt rather I exercised or not but at least exercising helped me mentally, and it helped me to be more mobile.. I was getting to where I didn't need my cane as much and could adventure out more on my own... Yes!! Some independence!!! Praise God!  I'm not saying that exercise is the answer but for me I know that exercise has made a huge difference in my life.  I weaned myself off all my medications with the pain meds being the last... As I started weaning myself off, I could see improvement.. A little more with each medication for as you know the side effects make you feel even worse.. I have to say that God used exercise to save my life.. I was in such a deep, deep depression that I was suicidal.  I knew I needed help and a change... I just thank God that He gave me the strengthen to persevere through all I have.  It is definitely by His grace that I am still here because so many times I thought I was more trouble than I was help...that I and everyone around me would be better off if they didn't have to tend with me... But praise God He knew exactly what I needed to help me get my head on straight.. I still workout about 3 days a week and more if my body is up to it.. i still struggle through the pain, and afterwards, the pain and fatigue.. As for the fibro fog .. It is real that is all I can say about that.. I felt like there were days I was going crazy.  I couldn't remember even the simplest things..things I once took for granted were hard to remember... and the concentration was awful.. Forming words came hard at times.. I could think of the word I wanted to say but forming it was like pulling teeth.. the fatigue, well, I was falling to sleep at the drop of a pen (my doctor even told me not to drive) it was so bad.. The migraines and IBS... The vertigo and being super sensitive to sound, light, and smell..To being susceptible to everything that goes around (viruses)..I have experienced it all..even insomnia.. I have come a long way but I just am not where I want to be, even though, I know I am better than I was and headed down the right path..
 
I guess you are wondering why I am writing.. When I saw your blog or articles on coping with Fibro I was intrigued because God has laid it on my heart to do something similar to what you have done.. that is to write articles to help others cope  with their condition through the experiences I have gone through and when I came across your information I was so stunned that you have experienced so much the same as me even down to the molds... I would like to get  the info you have and learn from it, and also, share and references others to you when the time comes...

I would also like to know for my personal use what are the supplements you are using.. What has helped you to be practically  pain free.. Explain the supplements you are using, the foods you eat,  the fish oil that is best for you. etc.  I would like to try some of these things for myself to see how they work with my condition for I know that treatment is individually based so what works for one may not work for another..It is by trial and error that we learn what is best for us, and then, even that changes... But,
to be pain free, and especially fatigue free, sure does sound enticing, even if for a short time.

Any help you can offer would be so much appreciated.  I am sorry this is so long but I tried to give you a brief summary of who I am and how I have suffered and how God has been so gracious to me...I just want to give Him the glory in all things.. even in our suffering He is still so faithful.. And I know that all things work to the good for those who love Him."

 FROM DOM:  I am such a couch potato....but so glad for this reader's improvement through exercise.  I have been 99% pain free for many years now - and I have been fatigue and fog-free since August 2009.  My list is at www.fms-help.com/what.htm.  A lot of my relief has to do with alkalization and oxygenation.  I hope my personal list will be a starting place to get some ideas.  Wish there was one "magic bullet" to "cure" us all, but there are many things you can try that have scientific basis.  I am no "cured" - just "managed."


 17.  END OF LIFE ISSUES

 From a reader--

 "I have had a near death experience, the white light, the tunnel, and absolutely consumed by the feeling of love, only to have someone call my name and was so disappointed to come back to earth.  I am not afraid of dying, I am afraid of the act of dying, what causes me to die.  This experience has really helped me talk to those who are either about to die, or comfort the loved ones left behind.  Often I look at the prayers, and it is the ones who are left behind who need the prayers, not those dying who need the release from their pain and suffering.  I was so grateful when my Mom died after years of suffering of cancer, and her mind just losing it as well, that I said "Thank you God", when they said she had died.  To ask God for help, should not always be to ask him to heal, but to ask Him to end the suffering. My wonderful aunt, who not only does and trains care givers, will sit with the person who is  very ill, and ask them to let go, and it is wonderful, to see the peace come to the patient, and see them have time to say goodbye (they appear to improve for a day or 2) and then gently slip away.  I learnt the difference of these prayers from my father in law who was just consumed with cancer.  The last words I said to him were:  "Let it go well with you"  to which he replied, "let it go as it is supposed to go."

FROM DOM:  I had the same feelings and prayers when my dad was dying www.fms-help.com/eulogy.htm.  The suffering was so agonizing that my prayers changed from asking God for healing to asking God to take my dad.  I was not with him when he drew his last breath, but when I got the word, I just called out to God such an enormous heartfelt "THANK YOU!!!!!"  Despite our family's wrenching grief over our great loss, I was thankful that my father was in Glory with Jesus.  Truly, it was our family that needed prayers, and for a long time afterwards too.  My mother wanted to die - they had been married 54 years.  After a year of intense grief and being in and out of the hospital for her heart and blood pressure, she asked God to take her too.  But it didn't happen.  Then one day, while sitting at the breakfast table, she SAW MY DAD!!!!  He was smiling and said to her, "I am happy.  I want you to be happy too.  You will be with me soon."  The vision healed her instantly!  She became a changed person - happy and able to carry on with life alone.  That was 5 years ago and she is now 88.  Of course she still misses my father every single day, but the debilitating grief was mercifully removed by God.  My parents were always very close - they did everything together.  People often remarked on their togetherness in the work of the Lord, their compatibility, etc.  On the other hand, I had a neighbor many years ago who was married for 60 years to an extremely difficult man.  When he finally passed away, she told me, "60 years with Harry was enough."  She passed away 2 years later.  Our times are in God's hands.  My salvation story ("Religious but Lost") is at www.fms-help.com/salvation.htm.  I have a home waiting for me in heaven, not based on my own good works or efforts, but on the saving blood of the Lord Jesus Christ, the ransom for sinners.  I was born again at age 36. 


 
18.  FREE "FIBROMYALGIA AWARE" MAGAZINE

 From a reader--

 "Fibromyalgia Aware" magazine by NFA is now Free Online

Must be a registered user (free)
http://www.nxtbook.com/nxtbooks/fma/fibromyalgiaaware_2009winter_v2/index.php



19.  MSG

From a reader--

 "Dom, I  know  you  are so  busy  researching  so  many  things, but  this  is  worth  looking  into  if  you  didn't  know  it  already.  The  danger  of MSG  in  our  foods. We  can  look  carefully  on  the  label  and not  see the  MSG  but  it  is  in  there  under  a  different name. This  was  just  recently  brought  to  my  attention.I   know  MSG  gives  me  headaches  but  never  knew  how  many  foods  I  was  eating  that  had  it in them.    It  causes  headaches , insomnia, body  pain  for  just  a  few.  Scary......Sometimes  it  might  be  what  we  are  eating  like  that  that  makes  us  feel  so  ill at  times.  I  am  going  to  start  being  more careful  and  see how  I  feel.  I  will  have  good  days  and  then  wham, a night  of  being  restless  and crazy  feelings in  my  body.  May  God  help  us to know  what  is not  good  for  us."


 20.  M.E. OR FMS?

 From a reader--

 "Upon reading and doing research, I find myself falling into the ME category more so then FMS. I am scared to death about this but need to hit this head on.  My question that I have is, how do I tell my doctor that I think we are missing something or that I feel that I may have ME?"

 FROM DOM:  Check out these:

http://www.fms-help.com/disbelief.htm
http://www.fms-help.com/misery.htm
http://www.fms-help.com/energy.htm
http://www.ahummingbirdsguide.com
 

 21.  SAVELLA (MILNACIPRAN) RECALL?

 From a reader--

Group urges recall of drug for fibromyalgia

Associated Press

1/20/2010

WASHINGTON - A consumer advocacy group is asking government regulators to recall a drug they approved last year for a little-understood pain ailment, saying the pill can lead to dangerously high blood pressure.

A letter Wednesday from Public Citizen calls on the Food and Drug Administration to pull Savella off the market, almost exactly a year after it was cleared to treat fibromyalgia.

 The drug is co-marketed by Forest Laboratories Inc. and Cypress Bioscience Inc.

 Fibromyalgia is characterized by a wide range of pain-related symptoms, including muscle soreness, headache, fatigue and depression. Last summer European regulators rejected the drug due to lack of effectiveness data and side effects. Public Citizen argues the FDA should have reached the same conclusion.

"FDA should never have approved Savella for fibromyalgia, and should now immediately undo its error by removing it from the market," states the petition from Dr. Sidney Wolfe, director of Public Citizen's Health Research Group.

 Company studies of the drug showed 20 percent of patients taking Savella had hypertension, or high blood pressure, compared with 7 percent of those taking a dummy pill. Savella, known generically as milnacipran, is part of an antidepressant class of drugs that have been associated with increased blood pressure.

 Public Citizen also points out that the original study of Savella failed to meet the companies' own study goals for effectiveness. Company scientists reanalyzed the study, with a larger population and a shorter time span and recorded relatively meager benefit: 9 percent of patients on Savella significantly reduced their pain, compared with 7 percent of those taking placebo.

 Public Citizen cites complaints from FDA's own statistical reviewer, who wrote: "there is no evidence ... that milnacipran is associated with improvements in pain or improvements in function at three months of therapy."

Since the FDA approved Savella last January, doctors have written more than 250,000 prescriptions for the drug, according to data from IMS Health.

A Forest Laboratories spokesman handling Savella did not immediately return calls for comment Wednesday morning.

FDA has cleared two other treatments for fibromyalgia: Eli Lilly's antidepressant Cymbalta and Pfizer's anti-seizure treatment Lyrica. Both drugs were cleared based on their ability to decrease fibromyalgia pain, though it's not clear how.

The cause of fibromyalgia is not known, though some researchers point to abnormalities in how patients with the disorder process pain nerve signals.

 FROM DOM:  If this is of interest to you, try a search for Savella and Milnacipran in my past newsletters www.fms-help.com/newsletters.htm.


22.  MINA OGLESBY

FROM DOM:  WOW!!!!!  This past weekend we had a tremendous ladies' conference at church.  We were SO RICHLY BLESSED by the ministry of Mina Oglesby www.minao.com.  She is a true servant of God - saved at age 30 and has been doing women's retreats for 28 years.  Her husband Ed runs the book table - and they have some of the BEST books and resources that I have seen, including the book "Me? A Widow?" which I just mentioned in a recent newsletter, and "Hedges" (about protecting your marriage).   Mina sings beautifully for the Lord, she is incredibly funny, and a superb speaker!  Wish all of my female readers could have joined me for this rich time.  Mina has an amazing testimony - she is obedient to God and the anointing flows as she ministers the Word.  The conference was called "Seasons of the Heart."  Women from over a dozen churches in our area attended.  I highly recommend Mina Oglesby if you are looking for a ladies conference speaker for your church.  For those of you who have already had the privilege to hear her, you know what I mean!  Ms. Mina is now 65 and God is still using her abundantly!  She is so down-to-earth, real and funny, as well as being spiritually on target and she is a tremendous singer and composer.

Want to know something amazing - as one fibromite to another?  The final session of the ladies' conference was on Sunday morning at 9 a.m.  This was during the Sunday School hour.  Due to my lifelong sleep disorder www.fms-help.com/insomnia, I have only been in Sunday School once in the past 18 months.  I normally arrive on Sundays at 10 a.m. to play the piano / organ for the morning service, but often do not feel focused because my circadian rhythm is so weird.   I never schedule anything before noon if I can help it - but I also didn't want to miss anything Ms. Mina had to say!   I needed every bit of her wisdom and anointing.  Amazingly, I was able to fall asleep at a fairly early time (before midnight) Saturday night and I was up in time to make it to the 9 a.m. session.  PRAISE GOD!

I hope all of my readers are being spiritually nourished by personal Bible reading and hearing sound doctrine at church (assuming you are well enough to get there).   A healthy spirit can help sustain our weak bodies!


 23.  ALTERNATIVES TO DRUGS

 From a reader--

 "Note to readers: I am wondering if any of you in severe pain have tried any of the alternative remedies Dom recommends?  My heart breaks for you, and all the others out there who might be suffering needlessly. The oxygen drops are reasonably priced and since they have helped her so much, I would try that first.   I had severe pain in 2001, but I haven't had any for years even though I have had other things (fatigue, brain fog, some pain).  I definitely would recommend Garden of Life's FYI ultra (for your inflammation). It also helps keep me from getting sick (which you can find at local health food store) but it is more expensive than oxygen drops.   I also use Alpha Lipoic Acid. Probably the most reasonably priced is the oxygen drops and making sure to stop all sodas and drink water and plain teas without artificial sweeteners. I also drink kefir probiotic beverages (www.lifeway.net)   I remember how bad my pain was, I didn't want to go anywhere or do anything. I was always thinking about how to be home sooner, and was not fun to be around at all!   If you are feeling hopeless and think that some "silly little oxygen drops" can't possibly help your severe pain, and if you think that if something really worked, then it would be all over the media- you couldn't be more wrong.   If an alternative product really works, then usually the mainstream media totally over looks it.  Large companies don't like competition.  I used to be a nonbeliever too.  But then I started looking the alternative route because my "regular" doctors acted like I was insane. So please try what Dom has recommended.  It may work for you, and if it doesn't, you won't be out much money at all.  But please only start off with very small amount and very slowly and gradually work up. We fibromites tend to have significant "die off symptoms"  but if you follow the instructions she mentions, you should get much better."

 FROM DOM:  My heart goes out to those who are still suffering severe fibro pain.  I was in terrible pain during the first 14 years I had fibromyalgia www.fms-help.com/fibro.htm (was diagnosed in 1982).  There was no internet back then - and no support or understanding.  I got a computer in 1996 and got online.  That's when I started learning about specific nutritional supplements, etc. that helped me become 95% pain free very quickly.  I still battle other aspects of fibro, such as the sleep disorder (for which I am adequately medicated) and the fatigue and brain fog (which the oxygen drops totally took away in August 2009 - hallelujah!)  I still can't travel or endure too much emotional stress without crashing, but I am able to work - I should say, ENJOY my work now (I teach piano and guitar at a school of music www.fms-help.com/students.htm).  I could win an Oscar for my outwardly cheerful disposition when inside I felt like I was dying for so many years.    If you want to read some sad stuff about me, go to www.fms-help.com/interview.htm - this is an interivew about my early experiences as a fibro patient.  To read a list of things I use now (meds, supplements, etc.) see www.fms-help.com/what.htm.  Different things work for different people, but this is a pretty good list, especially if you are fed up with meds not working - or their side effects being worse than the original problem.  (Don't you just love those TV commercials for prescription drugs?  At the end where they list the horrifying side effects, followed by an upbeat suggestion to try their medication!)   I'm not against all drugs - some are very helpful, but I am cautious, having been burned many times.  I take the very least of anything to get an effect.  Once again, refer to my personal list to see what I'm using.  Different things work for different people, but I'm doing well now.  It's been a 28 year long journey of "discovery" since my adventure with fibromyalgia began suddenly one morning in June of 1982.  Little did I know then that my life was forever changed.


24.  RACING THOUGHTS

From a male reader--

"I have gone through numerous sleep studies etc. I know what the problem is I just haven't been able to find a way to improve my sleep.  My issue is low quality sleep (REM). I was told I have hypersomnia (really bad teeth grinding also). GABA worked a little but only for a couple days... I think anything which will sedate my mind and keep it from racing would help a lot.  I had my adrenals tested and it came back as almost complete worn out. I have no adrenals at all. I have been taking a low dose of cortisol but it just makes me anxious. I need to go through adrenal therapy to restore and hopefully repair my system."

FROM DOM:  The immune balancing powder helped me for many years with racing thoughts.  I also found Dr. Rodger Murphree's Adrenal Cortex to be helpful in 2005 after the death of my dad www.fms-help.com/eulogy.htm, which left me totally drained emotionally and physically exhausted.  If anyone has other helpful ideas for this reader, please write dombush@bellsouth.net.


Well, that's all for now.  Be sure to visit my homepage at www.fms-help.com where I have loads of GREAT FMS/CFIDS/ME information - look in the yellow box on the left. 

I can't answer all of my email, but I do read what you send me, as I have time.

 I've been feeling "normal" for 7 months now!   THANK GOD!!!   A list of things that keep me functional is at www.fms-help.com/what.htm.

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.