Dom's Newsletter
February 17, 2008

A compassionate informative newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME).

CHECK OUT THE 16 INTERESTING TOPICS IN PURPLE BELOW!

1.  READERS WRITE
   "I look forward to your newsletters, and some days I don't know what I'd do without them!"

"Thank you so much for your very informative website www.fms-help.com - it is a treasure-trove of information!"

"You supply a lot of hope and keep me going!!"

"I received your newsletter and it was great. I have learned a lot."

"Thank you so much for having this web site that is available to us!!  It really helps knowing that it's not in my head and that I am not alone in this battle."

 

2.  FAMILY MISUNDERSTANDS FIBROMITE
I often get emails from FMS patients who are mocked and ridiculed by family members / friends / bosses who don't understand their condition.  Today I got an email from a fibromite who is working full-time, yet needs help at home. She is being called a "pill junkie" and is being criticized for having to sleep so much.  This kind of emotional stress adds untold misery to an already debilitating illness.  I hope these pages on my site will help--

MY NAME IS FIBROMYALGIA - an easy way to explain FMS to friends and family

LETTER TO THE HEALTHY WORLD FROM THE LAND OF CHRONIC PAIN & FATIGUE - well stated

RELATIONSHIPS & FIBROMYALGIA - chronic illness strains the best of marriages - here are some suggestions for family life while suffering with FMS/CFIDS

LOSSES WE EXPERIENCE WITH THIS ILLNESS - here is one woman's poignant (yet typical) FMS/CFIDS story called "I Have Been Robbed"

NEUROENDOCRINEIMMUNE DISORDERS - tremendous description of what it's like to live with a neuro-endocrine-immune illness

OPEN LETTER TO NORMALS - explains to healthy people what it's like to live with FMS/CFIDS on a daily basis

AWARENESS - letter I wrote to Congress for Fibromyalgia Awareness Day - May 12, 2006

 
3.  MORPHINE
From a reader--
Morphine Dependency Changed by Single Genetic Change
Science Daily Jan. 29, 2008
Morphine's serious side effect as a pain killer--its potential to create dependency--has been almost completely eliminated in research with mice by genetically modifying a single trait on the surface of neurons. The study scientists think a drug can be developed to similarly
block dependency in...http://www.kurzweilai.net/email/newsRedirect.html?newsID=7890&m=26263
 
 
4.  WILL EATING "RIGHT" HELP?
From a reader--
"I'm a fellow fibromite and just wanted to say that I agree that alot of sicknesses are genetic. But, so many people have Type 2 diabetes, heart disease, strokes, high B/P along with many other illnesses that are mainly caused because of a poor diet. I have seen and heard of many of these illnesses completely reversed after their diets are changed. I think it is extremely important to take sugar and many processed foods out of the diet.Changing my diet has not taken away the Fibro but it does help some. I think our bodies were just not made for all this garbage that we continually put in it!  Here is the website with a book called The Makers Diet by Jordan Rubin a book that has really helped me learn about how we should eat based Biblical principles. http://www.makersdiet.com/public/default.aspx."
I do better if I eliminate sugar and (cow's) milk from my diet.  However, I hear from a lot of people who are devoted to eating only the right things (e.g. vegetarians) and they still have fibro.  Still, all the chemicals and toxins in our food can't be good for us!  It overloads our liver and stresses the immune system. 
 
 
5.  GLUTEN FREE DIET HELPS PAIN & DEPRESSION?
Reader 1--
"It's interesting that Gluten free diets are brought up in this newsletter www.fms-help.com/020408.htm.  My Dr. has just told me to go on a Gluten free diet.  He has seen with several other patients that besides helping the pain, it really helps with depression.  In doing the research, he explained Serotonin is not produced in the brain, but in the small intestine.  If food cannot be broken down because of glutens in certain foods, Seritonin cannot be produced.  It has helped with the depression, which in turn helps with the pain.  So, I do believe that it has really helped to go on this type of diet.  The only problem I am having is trying to find a GFD that is easy to read and understand.  If you know of a website that would help me I would be grateful!!"
 
Wow!  I am really interested in this!  Have reported on the "gut brain" in a recent newsletter www.fms-help.com/newsletters.htm and learned that a lot of neurochemicals are manufactured in our intestines, not just in our brains!  If you have any info on gluten-free diets or if you have tried a GFD, please write dombush@bellsouth.net - would love to get some feedback on this!!!!!  Now for more comments about gluten........
 
Reader 2--
"After I had my blood tested for food allergies, I learned that I am VERY allergic to gluten.  After going on a gluten-free diet, I noticed a significant improvement in my health. Unfortunately, it is a very difficult diet to stick with because everything today has gluten.  So, I fluctuate back and forth, usually not going totally gluten-free, but avoiding gluten. Every time I follow this diet, I notice an improvement in ALL of my CFS symptoms.  Recently, after a major setback, I have just started this again and am already feeling better. There are many books about this and the one that I am currently reading is called “The Gluten Connection”  by Shari Lieberman.
 
Reader 3--
"I find that if I stay away from gluten products I have FAR less pain & stiffness. If i start feeling really good and begin eating bread products (which I love) my trigger points will really flare. I use spelt bread from Berlin Bakery in Ohio (internet purchase). It is very good and shipped next day delivery. they have many products made from spelt. there are many gluten free mixes on the grocery store shelves of the big super markets that are very good. I truly feel gluten (wheat) is a big factor in pain level. I am a type O blood type, and most grains are not in the my diet catagory. Spelt is. Diet, I believe is a very big factor with our health issues. I didn't believe it for many years but I am definetly a believer now. My pain level has made me a believer."
 
Reader 4--
"I was diagnosed with celiac disease in September, by a holistic doctor and genetic and stool tests by enterolab.com.  I was found to be casein intollerant, as well.   I realize I've had the disease my whole life.  My adrenal glands are exhausted (Addison's disease), and I have other autoimmune diseases and complications, allergies, asthma, hypoglycemia, etc.  After going gluten-free, I find that the worst of my fibromyalgia symptoms subsided.  However, I have become very sensitive to gluten, and can get sick at the least contamination, by an unseen amount, just touching something that a gluten-eating person has touched, then snacking without washing my hands."
There's a comprehensive website about celiac disease and gluten intolerance at www.celiac.com - I am really interested in this.  Maybe some of our FMS symptoms can be alleviated by avoiding gluten???  I am just beginning to investigate this.  However, I do wonder about Reader 4's experience - can you become ultra-sensitized to gluten by avoiding it?  I'm not a doc, and I think even the docs can't help us at times, although they try.  There are some medical mysteries that only God can solve.  I am just so thankful for the internet where we can share information and ideas.  Maybe because I'm 56 and the internet just became a reality when I was in my 40's, so I well remember the days when you had to go the dusty public library and search for health information, which often was hard to find, if at all.  No wonder people relied to much on their doctors back then!  If you want to read an interview about my early days with fibro (1982), see www.fms-help.com/interview.htm.  Younger folks take this wonderful blessing of the internet for granted, because they have always had access to it.  (Hey, I'm from the days when there were door to door salemen for Britannica Encyclopedia.......knowledge is now exploding so fast that only a flexible medium like the internet can keep up with it!  In fact, this is why I haven't written a book on fibro, although I have often been asked.  I am fairly sure that if I write something, it will become outdated rather quickly with all the new research going on.  So I have chosen to write this newsletter instead.)


6. LYRICA
From the kind husband of a fibromite--
"My wife has had FMS for many years. I spend hours every month researching on the Internet for any information which would help my wife. About a year ago I found the results of the university study that first indicated pregabalin (Lyrica) could successfully treat Fibromyalgia symptoms. I then went to a web site that used to be http://www.remedyfind.com but has now been subsumed into something called "Revolution Health" www.revolutionhealth.com which is much harder to use than the original, but oh well. Anyway, I read a LOT of testemonials about Lyrica. It seems the "sweet-spot" for relief is about 300mg per day, taken 150mg in the morning and 150mg at night. (This reflects what the researchers found as well.) The recommendations went as high as 600 per day, but based on the testemonials it didn't seem increasing above 300-450 had any benefit, and the side-effects begin to outweigh the benefits. Obviously, the lowest dosage you can take that results in reduced pain is the one you should use. Yes, there can be a weight-gain tendency for some people, but not everyone experienced this. My wife is allergic to gabapentin (Neurontin), but not Lyrica, which is a refinement of gabapentin. It's important to note that you should titrate up to this level slowly over a period of time. We started her at 50mg once day, then 50mg twice a day, then up by 50's, staying at each level for at least a week. Since being at this level (taking more actually makes her feel sick) her pain level due to FMS has decreased significantly, sometimes disappearing completely. She's been on Lyrica now for about two years, and it is still effective. There is also documented evidence that it helps with "Generalized Anxiety Disorder", and it did seem to help my wife in that area, but the FDA did not approve Pfizer's application to have GAD be an "on-label" use of Lyrica. In Europe they use it for this as well as FMS.  Also, some people reported no uncomfortable withdrawal symptoms, ranging all the way up to the extreme mentioned in your article of being so depressed as to be suicidal. This is why it is even MORE important to GRADUALLY reduce your dosage when going off of Lyrica. One way to do it would be to go down by 50mg and stay at that level for at least 2 weeks, and continue this pattern until the very end. You could even go down to 25 for the last cycle. A doctor also told me that when going off of a med that you take multiple times in a day, that you should try and preserve the timing of each dose, but just reduce the amount of that dose. So your daily dosage would change like this: 150/150, 100/150, 100/100, 50/100, 50/50, 25/50, 25/25, 25, 0. These 8 cycles would take a minimum of 16 weeks. Some say you should stay at a given level for 3-4 weeks, which would mean it could take up to 8 months, but this seems excessive to me. But of course it depends on the sensitivity of the person. If you can go faster, go faster. If the withdrawal symptoms are too much, go slower.  I think it's important for people who are considering Lyrica to know that it can take a whole lot more than 50mg to 150mg to find the right amount for treatment. And a SLOW titration up to the effective level is important, as is a SLOW titration down when going off of it.."
 
 
7.  DOM'S SUPPORT GROUP
Do you have a question about fibromyalgia, chronic fatigue and immune dysfunction syndrome, or myalgic encephalomyelitis?  My newsletter readers now have access to their very own message board called Dominie's Support Group on Yahoo at http://health.groups.yahoo.com/group/dominie.  If you want to ask a question, get feedback from others with FMS/CFIDS, share information, or just vent about this illness, visit the site and click on JOIN THIS GROUP.  If you don't want a lot of emails, sign up for either DAILY DIGEST (once a day) or NO EMAIL (visit the group when you have time).  There's a lot of discussion of fibro going on there and lots of support and caring people!
 
 
8.  TINNITUS (RINGING IN THE EARS)
From a reader in the UK--
"ON SEEING AN HOMEOPATH DOCTOR I HAVE HIGH AMOUNTS OF MERCURY POISONING IN MY EARS , ESPECIALLY TOUCHING THE ACOUSTIC NERVE. THE DOCTOR SAID HE HAS TREATED PATIENTS IN  THE PAST WITH GOOD RESULTS.  HAVE YOU EXPERIENCED SIMILAR CONDITIONS?"
Yes!  I have had tinnitus for decades.  It is better now than it used to be, but it used to be a loud roaring noise.  Now it is more like a hissing noise.  I have many mercury fillings in my teeth.  I don't have them removed because: first,  I am a dental chicken (having had my teeth drilled without novocaine when I was a child) and second, because I don't have the money to have them replaced.  I would be most interested in what you learn about this condition.  I understand that many people with fibro have tinnitus.  I think mine may be related to having no cartilage left in my jaw joints (long story).  Also, I had TMJ for years, but not anymore.  Would love to know if you are helped by the homeopathy.   I always carry foam ear plugs with me, because I am very sensitive to noise.  Loud noise make my tinnitus worse for days.  Anyone else with tinnitus (or a way to get relief)? Write dombush@bellsouth.net.
 
 
9.  EDUCATIONAL DVD ABOUT FIBROMYALGIA
From a message board member--
"I just watched this video,very interesting. It will be on ITN TV stations soon, but you can watch it on line.
Click the link below to go to full article and the link to watch it."
 
 
10.  INFERTILITY & FMS
Question from a reader--
"Also have you heard of any cases in which infertility is present in FMS patients of childbearing age?"
My answer was YES!  Me and lots of other women with fibromyalgia.  My condition was called endometriosis.  I had a hysterectomy at age 34.
 
 
11.  CHRONIC LOW-GRADE INFLAMMATION & SLEEP DEPRIVATION
From a reader--
"Please read how we all have to deal with "chronic low grade inflammation" as we age and the havoc it raises with the body.  It is there and we don't see it.  Choice of foods and cooking method  has a lot to do with it .  It is a lengthy article, but it could save ones health and life. Many chronic diseases cause can be traced to it - http://www.lef.org/protocols/prtcl-146.shtml."
 
 
12.  ICY HOT RECALL!
From a reader--
"URGENT Voluntary Nationwide Recall of Icy Hot Heat Therapy Products (Feb. 8, 2008) - http://www.fda.gov/oc/po/firmrecalls/chattem02_08.html - "Chattem, Inc. announced that it is initiating a voluntary Nationwide recall of its Icy Hot Heat Therapy products, including consumer samples that were included on a limited promotional basis in cartons of its 3 oz. Aspercreme product. Chattem is recalling these products because it has received some consumer reports of first, second and third degree burns as well as skin irritation resulting from consumer use or possible misuse of these products."
 
 
13.  BRAIN & SLEEP DEPRIVATION
Article from a reader--
Brain Region That Can Be Stimulated To Reduce The Cognitive Deficits of Sleep Deprivation Identified
Science Daily Feb. 7, 2008
*************************
Columbia University Medical Center
researchers have reduced the
deficits in working memory
associated with extended sleep
deprivation by using transcranial
magnetic stimulation on the left
lateral occipital cortex....
http://www.kurzweilai.net/email/newsRedirect.html?newsID=7955&m=26263
 
 
14.  CAN CELL PHONES CAUSE INSOMNIA?
http://articles.mercola.com/sites/articles/archive/2008/2/16/can-cell-phones-give-you-insomnia.aspx

 
15.   EYESTRAIN & BREATHING RELATED?
I've been reading a most interesting book lately called TOO LOUD, TOO BRIGHT, TOO FAST TOO TIGHT by Sharon Heller, Ph.D.  It's about people with sensory sensitivities and they sound a lot like people with fibro!  Anyway, the whole book is fascinating, but she mentions in one section that if you focus your eyes on something very hard, you tend to hold your breath.  Try it and see!  Then breathe deeply and try to focus intently.  It's hard to do!   Maybe tense muscles and fatigue are caused by focusing too intently with our eyes on computers, etc.  I also noticed many years ago that when trying to fall asleep, if I rolled my eyes upwards and tried to wiggle my toes at the same time that it helped my body relax.   Most fibromites have tight, tense muscles and tend to hold their breath - me included.
 
 
16.  DOM'S UPDATE
I received this email from a reader, which encouraged me to stop worrying so much--
"I've taken so long to contact you about your Christmas CD www.fms-help.com/CD.htm.  I bought three of them, one for me, one for my mother-in-law and one for my mother, and we all just LOVE it!!!!  I still listen to it even though it is after the holidays!  It is just so soothing to me!! And as you know, any of us with FMS that can find some relaxation is wonderful!! So that you VERY much for taking the time to make this CD, and I hope you will possibly make another, maybe a all seasonal one.  Also, in your February 4 newsletter www.fms-help.com/020408.htm, I was so touched by the story of your friend and his possibility of losing his legs.  His trust in Our Lord is what I could really relate to. I have found through the years dealing with FMS and all it brings with it, that handing our troubles to Him has helped me a great deal!! I always believed in God but I would have to say honestly that I didn't have full trust & faith?!  I always felt it all was ALL up to me to deal with!!  I always was overwhelmed with pain, stress and worry about everything!!!   And I just came to a point in my life where I did have trust and faith in Him, I had no one else!  Not even myself anymore!  It is unbelievable the changes in my life since I finally accepted I can't do it ALL myself, and that's VERY hard for me to admit!  And when I hit rock bottom I tell Our Lord, "I can't do it all myself anymore and I need Your help and guidance. And I need to hand over to you my worries, pain, etc...."  It has brought so much peace in my life!!  I'm ashamed to admit I didn't have this faith earlier in my life, but so very happy I realize it now!! I know deep in my heart that no matter what happens in my life He will be beside me and take care of me, there's no doubt in my mind of that!!  So thank you so very much for sharing that story and song with all of us!!"
Wow.  I was soooo inspired by this reader, because I am such a worry wart and always have been!  My mother (rightly) says, "It's a sin to worry!"  The Lord tells us to not be anxious about anything and to cast our cares on Him.  I sooo want to do this more!!!
 
I've been battling a respiratory virus for the past 10 days and trying to keep working www.fms-help.com/students.htm.   I probably caught this from my students, most of whom have been sick!  Also, the pollen here in Florida is awful right now.  I struggled along for 10 days but finally gave in and went to the doc this week.  I'm now on an antibiotic for the bronchial infection.  I hate being on antibiotics because they make me feel depressed (they mess around with your intestinal flora) and sometimes cause yeast overgrowth too.  Ugh!  However, I am feeling 95% better now from my respiratory illness, so I'm thankful for docs and meds.  I have heard from many people around the country (and in our community) who are ill with viruses right now and many don't have FMS/CFID/ME to pull their immune systems down like we do, so I think these viruses are becoming meaner than ever!!
 
Now, for some light-hearted home news.....
My husband and I are "empty-nesters" in our mid-50's.  Things are quiet and peaceful around here now, but we are entertained by our two little dogs: Cheeto (my adorable white long-haired chihuahua who is 11 months old) and Buster (our 5 year old black, white and tan rat terrier with a little chihuahua mixed in).  Cheeto, the puppy, has been very mischievous lately!  He has taken our remote controls and other objects into his cage...such as my bra (hahahah!!!), a container of cuticle ointment, my slippers, bookmark, daily devotional guide, etc.  He keeps us laughing, even if he is a bit destructive....he is such a cute and happy little guy!   Buster, my husband's dog, was a horrible puppy (much worse than Cheeto) but has turned into the best lap dog ever!   My husband is very attached to him.  Anyway, Cheeto is very fast and almost impossible to catch when he does mischeivous things, so we have to watch him like a hawk or keep him on a leash.  I called the vet to get some suggestions, and they told me that Cheeto needs to go to obedience school!  However, I told the vet's office that he wouldn't like it!!!  Then said I had to hang up now because Cheeto was barking for me!!! (Hahahah!!!!!!)  Anyway, I thank God for a little humor and fun in our otherwise serious lives.
 
I have been pain free from my FMS for 12 years - but had severe pain during the first 14 years www.fms-help.com/fibro.htm. I mostly struggle now with fatigue when I overdo it and have to watch my stress levels, which means saying "NO" to many things I would like to do. For a list of things I use, visit www.fms-help.com/what.htm. We are all unique, but these are things that help me live a relatively comfortable life. My main problem is that I never know how I will feel, so we can't plan anything. (In light of all the other problems in the world today, this is not a biggie....just disappointing at times.)
 
I'll close now with one of my favorite Bible verses which sums up the purpose of my FMS/CFIDS/ME website www.fms-help.com and newsletters: 
 
II Corinthians 1:4 - "Who comforts 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." 

Til next time,

Dominie
 
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DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME HOMEPAGE

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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.