DOM'S NEWSLETTER
www.fms-help.com
May 5, 2007
 
A compassionate, informative newsletter for people with FMS/CFIDS/M.E.
 
Below are 22 topics in PURPLE.  My comments are in TEALI hope someone will be able to help the reader in Topic #22 who has a question about fibromyalgia and insomnia during pregnancy.  Thanks to everyone who contributed to this newsletter!  You are my FIBRO TEAM! We are all on this journey together, and I appreciate you! - Dominie
 

 
1. READERS WRITE
 
 "I really enjoy and look forward to your newsletters."
 
"Your symptoms www.fms-help.com/fibro.htm sound sooooo much like me I thought I was reading my own story."
 
"Thank God for you and for everyone who pitches in with your newsletter."
 
"You are a pillar for me to see out here in the cyber-wilderness."
 
"Love all the info you send in your newsletters. Thanks so much for taking the time and effort to help so many people."

 
2. NEW SYMPTOMS CAUSED BY MEDICATIONS
From a reader--
"Can you ask yur readers if their doctors have ever looked at 'new' symptoms as possible side effects of medication? for example after I started taking the morphine, i developed IBS. I sometimes wonder if my fibro fog is due to the combination of anti-depressants, pain and sleep medicines."  [Good question, and one I have been asking myself lately.  I've been trying to cut back on meds and supplements to only take what I truly need and has shown benefit.  Otherwise, I think I'm confusing my immune system.]
 
 
3.  MUSICIAN WITH FMS/CFIDS
Being a church musician, I could really relate to this email from a reader--
"Your story on “How Many Strings Do You Have Left?” www.fms-help.com/042807.htm really touched me.  The other day my mother was talking to a friend about how much harder it is to get up in the mornings since she has got older (she’s in her 60’s).  They laughed about how their brain is ready to run races, but their bodies won’t let them.  I didn’t say anything, but I have felt that way so many times.  My mom doesn’t understand my fatigue at all because like your letter mentioned – I look fine.  We aren’t “sick” in the normal sense of the word, so people don’t understand.  I play the organ for church and am often so dizzy that I can’t hardly play.  But, I keep on playing, trying not to think about the dizziness, the fatigue, and the nervousness of having to perform under those conditions.  Sometimes, I leave the organ and go to the foyer or restroom and have a good cry because I’m so frustrated.  I have had to learn that although I may not be the person I once was, I must accept myself for who I am today."
 
 
4. NUMBNESS & CRAWLING ON FACE
From Yvonne evieandphil@igrin.co.nz--
"I am the lady from N.Z. who had that crawling, numbness on my face. I emailed you saying that I thought it was hairspray and I took antihistamines and it seemed to be going. Well it hasn't gone and each morning I reach my hand up to my face to feel if it is still there. Its been nearly 6 weeks now. They have tested me for mini stroke and I have had blood tests and a chest xray to make sure there is no blood clot. The doctor is shaking her head and has no idea what it is, so that would tell me it probably is another bizzarre symtom of Fibro. It goes up into my head sometimes and down my arm. It sometimes affects both side of my face. One lady emailed me and suggested it is lack of oxygen which would make sense that the blood isn't flowing properly.  Anyone else had these symptoms and how long did they last.
P.S. We don't have tics in NZ so it isn't Lyme disease."
[I too have been having numbness and tingling in my upper lip.  I don't have the money to see a doctor about it, and I only go if I think they can figure out what it is.  Seems like someone suggested Neurontin for this annoying problem.]
 
 
5. DIFFUSING THE FRENZY OF THE FDA INITIATIVE
From a reader--
New FDA Initiative Circulating the Net
Does NOT Warrant Alarm or Action – Dr. Joseph Mercola
April 27, 2007
“I have received dozens of requests to promote a response to the FDA Guidance for Complementary and Alternative Medicine Products issued by the FDA in February 2007. There have also been many people posting about this on Vital Votes.  It has never been my intention to cry wolf and encourage response to any government initiative unless I was convinced it warranted it.  So, I invested in a legal consultation and paid one of the top FDA Washington DC lawyers $500 an hour to review the initiative and provide his impression of the proposal. My take is that this proposal does not warrant a response. The primary reason for this? The Guidance does not create any new regulations; rather it’s an explanation of how the FDA applies the existing regulations.  The Guidance explains the differences between foods, food additives, dietary supplements and drugs, and it explains how the same item may be considered a food, a dietary supplement, or a drug depending on the labeling and claims made.   Meanwhile, the Guidance does NOT prevent access to CAM providers, nor does it prevent the use of supplements/herbs by medical professionals in their practice. It also will not directly impact consumers/patients or prevent doctors from recommending the use of healthy foods to patients.  This is not meant to minimize any of the underhanded dealings going on at the FDA (like the fact that the majority of funding for the FDA comes from the very companies that it is seeking to monitor and evaluate), just put our efforts where they’re most needed.”
 
 
6. INFLAMMATION, ACIDITY & FIBRO TREATMENTS
From a reader--
"I flipped over the last newsletter www.fms-help.com/041807.htm - the brain cell death info.  I have always counted on my spirit to keep me upright with the pain, and after getting my brain scanned and finding nothing wrong I was confident the dysfunction was not permanent..
Reading the drugs may be the  cause cell death was a blessing...I've always been more afraid of the drugs than of the fibro.

I live with frustration of those who would like to help me with a simple solution, pills... now I can tell all those helpful souls I have a good reason for resisting meds.

I no longer have health insurance so experimenting with treatments isn't an option. But I watch a friend with fibro go to a pain specialist  and tries everything from electrodes, shots, prescriptions, herbs, diets, etc.
and while she good moments, the fibro finds its way around every treatment in a few day so I dont feel bad that I cant go to the doc....

But then inflammation IS a known cause of brain cell death and that is still something to think about...
Some people take asprin to protect the brain from inflammation
(althought some fibro diets refuse asprin.. Dr Amand.)

In that view of consideration, there is a book called The Anti-Inflammatory Diet..  an other one called Eat Papayas Naked..
both geared to reducing acidity that causes inflammation and enviroments that cancer thrive in.. candida and a host of other problems.

Speaking of acidity..  sugar becomes acid
I stopped sugar and caffiene  few months ago (after years of resisting this suggestion) and found my overall inflammation reduced so much that some days I wonder if I really have anything but a dietary problem ..   (however I still hurt in spots , get hurt easily.. and nerve pain gets me whenever I do much of anything)

The idea of stopping sugar seemed overwhelming, actually impossible  - but after a few days it was easy to choose the multi grain roll instead of the pastry ...I am pretty proud of this change in my diet.  I like saying, does it have sugar... ah, no thanks.

Caffiene turned out tougher to give up altogether.. I still have a cup at least once a week for the treat of the energy..
Giving up caffiene used to make a HUGE difference in pain spots but now it takes away a general feeling of rust in my muscles when I first move out of any position but the general pain remains the same.  After 20 years, I never had a regular MD doctor tell me to quit either coffee or sugar...Never......hmmm."
[This reader makes a lot of good points.  I too am a self-pay patient, except for hospitalization--and thank God I've been able to stay out of there for twenty years now, so my financial situation greatly limits what I can try for tests, treatments, etc.  However, even when I had insurance years ago, I exhausted just about all options for FMS/CFIDS that doctors could give me, except for finding a few meds here and there that helped some (such as sleep meds).  I think the "Fibro Virus" (is there such a thing?) finds its way around just about every treatment, diet or lifestyle change.  I hear from people who think they are getting better, but write back a few days/months/weeks/years to say they are bad again or worse than ever.  FMS/CFIDS seems unconquerable, but at least there are some things we can do to help ourselves, which has been the subject of this newsletter for the past 11 years.  The only people who understand this illness are those of us who have it!  Also see my 100 Tips for Coping with Fibromyalgia and Insomnia at www.fms-help.comm/tips.htm.]

 
7. ACUPUNCTURE, SLEEP & LUNESTA
From a reader--
"I've had intermittent insomnia since Jr HS.  When the CFS was bad, I needed sleep medication all the time.  I've gradually been able to shift to using it only when I need it with the help of my acupuncturist.  In fact, that was the first change I noticed when I started acupuncture years ago...when I was able to fall asleep, I knew I'd been deeply asleep.  That gradually changed to being able to sleep deeply for longer periods of time.  I just use the Lunesta now if I have a couple of nights' run of no sleep or I have a lot on my mind that won't let me fall asleep."
 
 
8. SILVER COULD BE DANGEROUS
I have used colloidal silver for years (as needed) for various infections and problems, and it's worked pretty well for me.  However, here is a site warning about the use of silver - http://www.cqs.com/silver.htm.  So let's all beware and use things in moderation.  The Chinese use food as their medicine.  Maybe we should try to do the same, or as much as possible.
 
 
9. HAIR COLORING & CHEMICAL SENSITIVITIES
[revisited from www.fms-help.com/042807.htm]
From a reader--
"I have multiple chemical sensitivities (terribly!) and have just recently switched to all natural cleaning products for my home, in addition to having used fragrance & dye-free personal care products for 5 years.  I color my hair at home, then go to the salon and have highlights put in. I
bring my own perfume & dye-free shampoo and conditioner to the salon--they don't mind.  The least potent over-the-counter brand I have found, that I can actually tolerate (and I can't tolerate MUCH!) is "Garnier 100% Color".  (Available at Target, drugstores and Ulta).  It does not cover the grey as effectively as the "Garnier Nutrrisse", which I formerly used, but I could not stand the smell of the Nutrisse and would get sick for days from it. I can use the Garnier 100% color, without having a reaction to fragrance or chemicals.  It also doesn't make my scalp itch for days afterwards.  I hope I can continue usining it without problems...Just DON"T use the little packet of conditioner inside the box.  MAJOR TOXIC PERFUME SMELL."
 
10.  E.V.O.O.
From my sister-in-law (who has a Ph.D. in virology)--
"Yes, olive oil and other monounsaturates are the oil of choice among dieticians etc. because of their antioxidant content. Aside from cancer reduction, they reduce LDL and raise HDL levels. This means they are helpful in treating and above all preventing cardiovascular disease. Avoid trans fats, the fats used in processed food. These are inflammatory, which is especially important for people with immune problems. Avoid processed food. You should be eating whole, ideally organic foods, most importantly whole grains and vegetables; your oils should be oils, no fat (solid at room temp.), particularly monounsaturates."
My sister-in-law also included this Info from the net--
"Extra-virgin olive oil is another interesting cancer fighter. It is what we call a monounsaturated oil, meaning it will not go rancid. You can cook with it, but I would use coconut oil instead. If you do use it, you need to add turmeric to the oil to keep it from being damaged by the heat. A number of studies have shown that extra-virgin olive oil prevents cancer in both laboratory animals and people. People living on the island of Crete consume great quantities of the stuff, and shockingly, despite being one of the heaviest-smoking populations in Europe, they have one of the lowest lung cancer rates. The oil contains a number of cancer-inhibiting flavonoids, as well as oleic oils. A recent study found that extra-virgin olive oil not only prevented new cancers but could also be used to fight those that had already developed it. Researchers found that the principle fat in olive oil, oleic acid, inhibited a gene (Her-2/neu) known to make some breast cancers extremely aggressive. Oncologists use a drug called Herceptin to do the same thing, but it produces a significant number of complications. They also found that the oleic acid, when combined with even a small dose of Herceptin, could dramatically suppress this aggressive gene. Extra-virgin olive oil contains more of this oil than almost any other substance."
 
 
11.  I.Q.
From a reader who responds to a comment in a recent newsletter that stated: "Once being Mensa qualified to now feeling l can't learn my own phone number"--
"I took an online I.Q. test a few years ago and scored fairly high.  I even took the test twice and came very close to the same score.  I recently repeated this same test (about two months ago), and my score decreased about 7 points.  I blamed my medication (ativan), but now I'm starting to wonder if CF/fibro could be the culprit?"
 
 
12.  NOT EVERYTHING IS RELATED TO FIBRO
Response from a friend of a newsletter reader--
"I see people talking about things that don't help, or may not help everyone or may even be bad for some people, but maybe you could reply next time regarding the fact that not everything is related to fibromyalgia.  For example, I think I told you about this gene from my mother's side that affects how we metabolize B vitamins, and that when she was paralyzed from the flu when I was very young (about 7, I think), her treating doctor (not from the U.S.) prescribed B-12 injections (with something else, which you had reminded me of), which she has been on since then, most of her life, until one doctor discontinued them, and she became very, very ill.  They did some sort of test, and found that she has a gene (inherited from the maternal side) which adversely affects the way her body/central nervous system metabolizes B vitamins, especially B-12. So even on high doses, she always test very low normal or lower than normal for this in her blood.   I didn't think anything about it until I started on the shots...I felt a great improvement. And it turns out that the level of B-12 in my blood is below normal or just at the lowest of normal without the shots, and even with the injections has never gotten to even mid-normal. On the other hand, I don't do them as often as I should.  But there are genetic things that have nothing to do with fibromyalgia, and I think sometimes people forget about that. I think I read somewhere something like, 'Just because you have fibromyalgia does not mean you can't also have other health problems.'"
 
 
13. PROZAC
From a reader--
"Regarding Prozac, I am living a much happier life while taking it.  I used to get angry and depressed over every little thing.  Also, it has been a life saver for my daughter, literally.  People need to realize that those persons who killed others or themselves after starting on antidepressants were depressed to begin with.  In some of those cases, they weren't on medication long enough to get relief from their symptoms yet.  It can take 4 to 6 weeks to feel the full effect.  They should also keep in contact with their doctor or counselor.  Please don't let people tell you that antidepressants kill, until you've heard how many lives were saved because of them."
[Having been on Lexapro for a year after my dad's death www.fms-help.com/eulogy.htm, I know that antidepressants can be a blessing.  I was not able to function and was completely exhausted physically, mentally and spiritually from all that had happened in the last months of his life.  A kind friend finally took me to her doctor who prescribed Lexapro.  My husband called these my "numbing pills."  I was able to talk about my dad without crying all the time.  Eventually, with enough time, I was able to get off Lexapro.  Now I use Omega Blue (capsules) and a few essential oils that help me emotionally and with relaxation.]

 
14. SLEEP AT THE FLIP OF A SWITCH
From a reader--
"Researchers at the University of
Wisconsin-Madison have found a way
to stimulate the slow waves typical
of deep sleep by the use of
transcranial magnetic stimulation
(TMS) to send a harmless magnetic
signal through the skulls of
sleeping..."
http://physorg.com/news97172057.html
 

15. NATIONALITY & FMS
A few years ago, I was in a group of three women interviewed for a TV segment on fibromyalgia.  Interestingly, we were Caucasian, Asian (me), and African-American.  One thing I mentioned to the interviewer was that we all had the same symptoms despite our differing ethnic backgrounds.  This remark did not make it to the broadcast, but I thought it was insightful.  During the past 11 years of having an FMS/CFIDS website at www.fms-help.com, I have heard from people on every continent except the North and South Poles!  These FMS/CFIDS sufferers have differing cultures, lifestyles, diets and genetics--yet they all have identical symptoms.  Most who write to me are women, there are many men as well - see my men's page at www.fms-help.com/men.htm.  FMS/CFIDS is indeed an "equal opportunity" illness!
 
 
16. DISABILITY
From a reader--
"I finally have to admit I have a disability.  It is so frustrating though because I only see I am tired.  I don't see I have no focus.  So I think I am ok but I am not.  I have tried diet, I have tried vitamin pills, I have tried and tried and tried web-specials and other medications to sharpen focus and nothing works.  My annual review suffered because of the lack of focus and while everyone says I have a tremendously great work attitude they cannot work with me because they are afraid they will need to redo whatever I have done.  Did that ever happen to you and if so how does one deal (a) with a loss of self-esteem from comments like this, (b) with the grieving of things I used to do easily, (c) with finding the inner strength to take this all with a grain of salt and keep on keeping on?  It is just soooooo hard.  Any thoughts?"
[Your situation sounds soooooo familiar!  Been there, done that.  It hurts, it's awful.  If you want to read an interview about my early days with FMS, see www.fms-help.com/interview.htm.  Did a lot of grieving then.  I have a lot of consoling and supportive pages on my site - look in the yellow box on the left at www.fms-help.com.  There are sooo many of us with this same situation.  It is shocking to us when our minds are not as sharp as they used to be - I remember trying to study for a course and having to read the same information over and over. It just wouldn't sink in, yet I was an honors graduate from UCLA.  Check out this site too http://www.anapsid.org/cnd/diagnosis/mastersymptoms.html.]
 
 
17. FLOUR
From a reader--
"I am now trying to wean (hah) myself off flour.  Wish me luck.  It is my main comfort food and there seems to be evidence tying it to fibro fogginess and intestinal issues.  My first thought was to just have tortillas or matzoh I can because I figure  those are yeast free but sadly they still have flour and I need to give this a decent trial."
[Years ago I had a dear friend who was diagnosed with FMS.  Then the docs changed her diagnosis to RA, since she had red, swollen joints.  But it turned out to be gluten intolerance (celiac disease), which her husband discovered on the net.  She went on a gluten-free diet and became painfully thin, but I think she felt better.  She used a gluten-free cookbook.]
 
 
18. CURES FOR FMS/CFIDS
Recently two thoughtful newsletter readers sent me lengthy e-books with success stories of people cured from fibromyalgia and chronic fatigue syndrome.  If I learn anything from these books that isn't already in my newsletters (visit the archives at www.fms-help.com/newsletters.htm to search by topic), I'll let you know.  Having had FMS/CFIDS since 1982, I think I've heard of everything.  A list of things I currently use is at www.fms-help.com/what.htm.
 
 
19. RASH
From Kathy.Lucas@mid.state.ms.us--
"I am having a bad flare - I have not hurt this bad in about 2 years.  I have had pain in my lower back for the past 3 days and in my elbows.  I woke up yesterday morning with the worst headache (sinus) and could not get rid of it till late last night.  Also, I have this weird rash (red blotches) on my left leg.  It is only in certain areas below the knee:  behind my knee, on my calf and ankle, and now today I noticed I have some on my right leg, behind my knee.  It really itches - I have tried everything to get rid of this rash, and nothing has worked.  Does anyone have any suggestions?  I do not want to go to the doctor, because I can't take off from work.  I would appreciate the advice."
[Please send feedback to Kathy.Lucas@mid.state.ms.us.]
 
 
20. FREE PAIN RELIEF SAMPLE
From Whitney infinite242@gmail.com--
Dear friends and family members who have any kind of pain,

Great news. The company who manufactures the new pain relief cream ALCiS has sent me over 100 samples of their product to help support my cause to help others find efffective pain relief for their ailments. 
Here is some info on the product: 
 
ALCiS is a patented liposome delivery system that is advanced, innovative technology. ALCiS Daily Relief contains patented microscopic "envelopes", known as liposomes, which deliver our key nutrients and active ingrediants for pain relief. These liposomes penetrate your skin layers quickly and deeply, providing long lasting relief without skin irritation. ALCiS Daily Relief delivers noticeable relief from aches and pains in as little as 5 minutes. It is engineered therapy for muscles and joints. Natural scent, no strong smell with irritation like other competitors.

Available only at: 866-ALCiS-iS or www.ALCiS.com - More info on website!

I've been using this product for almost 2 months now and it is AMAZING!! The relief for me is not within 5 minutes because my pain is so bad BUT definetly after 20 minutes, I can feel a noticed difference in my pain levels. It's easy to appy, non-greasy and smoothes your skin - doesn't stay sticky or greasy like other creams do and there's barely an odor. Just massage a small amount into affected area and wait at least 20 minutes. This is also a product that works better over time. So after a week of using it, it was working better and faster. I use it on specific trigger points, muscle knots and areas of great pain like my neck, knees, shoulders and anything else that is hurting excruciatingly! I believe in this therapy and I highly recommend anyone who is in pain to at least give it a chance.

I have plenty of samples to help everyone + your friends and family to try to product and make up your own mind. ALCiS offers different product sizes and tubes for sale. I have discount coupons that I will include with your request, as well as a brochure explaining and detailing everything you want to know about the product. They have a money back garentee and they are willing to give me a group discount, if in the near future, a bunch of us would like to order from the company (which I plan to), it'll be cheaper to do that through me.

The samples are small enough to fit in your pocket, purse, drug bag, toiletry kit, etc. The are 5 ml each and I can cover all of my painful places with one packet, sometimes less than a packet. There is no real limitation for use, they recommend up to 3-4 times per day as needed.

So if you'd like to try it, please let me know how many sample packs you want and send me a SASE medium or large manilla envelope to my address below with your order amount. OR you can pick up your samples at my house in Alameda - I would request a day that you're available to swing by and I would leave a bag or envelope on my gate with your name on it. I'm not asking for donations at this time for the product but I'm instead going to just send you the samples if you pay for the postage.

One packet contains 3 samples + the brochure and discount form. So one .41 cent stamp (first class postage changes from .39 cents in May) per sample should be sufficient. I've already weighed an example and it only required one stamp. You can also just send a business sized envelope to me and I could probably fit everything into it just fine. If you want two samples, then put a .41 cent stamp and a postcard stamp on it, or use two .41 cent stamps - whichever is easiest for you. Please send request and SASE to the address below.

And if, after you try the product, you'd like to continue using it, just ask me for more samples and send another SASE!  Thank you for listening and I really hope that everyone who wants to, can try this product out because it is making the world a better place for me at this time! I'm very thankful to the company for helping us all out and donating their product to my cause.

My mailing address is:

Whitney K Walker
433 Cola Ballena
Alameda, CA 94501
infinite242@gmail.com
 
 
21. FOOD INTOLERANCES
Got this Interesting page from a reader http://www.foodcanmakeyouill.co.uk/true/tsindex.htm with testimonials from people with food intolerances, which cause symptoms similar to FMS, as well as migraines.  There's also info on this site about salicylate intolerance which I have discussed in previous newsletters (search for topic at www.fms-help.com/newsletters.htm).
 
 
22.  INSOMNIA DURING PREGNANCY
From Tara ttoleman@utmem.edu--
"Just found out that I'm about 5 1/2 weeks pregnant!!!!  Have any of your past newsletters had any tips on dealing with insomnia during pregnancy?  The OB said it's okay if I stay on Ambien, 5 mg, because I absolutely cannot sleep without some sort of sleeping pill and if I don't sleep well, my FMS flares up really, really badly.  But over the past few months the Ambien isn't really working anymore (I think my body is getting tolerant to it)...it only puts me to sleep for about 5 hours, then I'm awake the rest of the night.....so I was taking Soma with it...which was great, that let me sleep great.....but my OB says it's really not good to take Soma when you're pregnant.  I haven't slept much in the past 2 nights and my FMS is already starting to get bad.  My muscles are starting to ache more, my memory is starting to go, and I can't come up with words very easily when I speak.  I told the OB, but she said basically I just have to deal with it, at least until the first trimester is over.  UGH!!  Any of your readers have any tips?"
 

 
Well, that's all for this newsletter.  I hope you have found some topics of interest.   Be sure to visit my homepage at www.fms-help.com for many fascinating articles on FMS/CFIDS - look in the yellow box on the left.
 
Dominie Soo Bush
 
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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.