A Christian-based newsletter about Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E.) - sharing thoughts, research and experiences.

22 TOPICS below. Don't miss the RED ones. Readers comments in BLACK. My comments in TEAL.

1. READERS WRITE

"Thank you for your informative site www.fms-help.com on Fibromyalgia."

"Found your website. I am a Christian who has fibromyalgia as the result of an accident in 1977 but not diagnosed until 2004. Every so often I have another try at making progress with the condition and finding out if there have been any new ideas about ways to help."

"My story is same as your story www.fms-help.com/fibro.htm."

"I’m so glad you have a website again. I had received newsletters from you many years ago and then you weren’t on the internet for a while. It’s good to find you again. You always had good information."

"Your site www.fms-help.com is very informative and straight-forward."

"I just thought to write and thank you and all others who contribute to this fabulous resource www.fms-help.com/newsletters.htm. You are all a strong rod for my sometimes wavering backbone."

"Thanks for your wonderful site. Lots of great information there on FMS… reinforced some things I knew … opened my eyes on other things I was not aware of."

2. BLOOD THICKNESS

From 100 Tips for Coping - http://www.fms-help.com/tips9.htm#100--

Tip #100 BLOOD THICKNESS - A newsletter reader wrote to ask if there could be a link between blood thickness and conditions like FMS/CFS and also if anyone had received heparin injections and if so, did it work? See the article below: Hypercoagulation Theory Viable Explanation for Some CFS & FM Symptoms http://www.immunesupport.com/library/showarticle.cfm?ID=3110 Here's a snippet from the article: "Dr. John Couvaras, an infertility specialist in Phoenix, AZ, and HEMEX, began to research infertility in women. We found a hypercoagulable state due to a coagulation protein defect, existing in women that we tested who were infertile and/or had recurrent spontaneous abortions. In 1996, Dr. Couvaras noted that when he put women on low dose heparin in order to become pregnant, the CFS/FM symptoms, pelvic pain, and migraine-like headaches diminished. He asked us, "Why?" As a result of this scientific curiosity, we performed a retrospective study on 30 patients with chronic illness symptoms, and determined that all had coagulation system activation. As the hypercoagulability was decreased by heparin injections, the chronic illness symptoms diminished. This was the first clue to the connection between coagulation and chronic illnesses." OPC's can also help red blood cells work more efficiently and not clump together. Write me at dombush@bellsouth.net for brand.

3. SULFUR BATHS

From a reader re: www.fms-help.com/100410.htm--

"In Europe there are several places where people can sit in mud baths that are rich in sulfur. People always claim that afterwards they are free of pain for a long time!! Better run and look for my MSM bottle!!!! I do know that MSM make the walls of your cells more permeable so that in the case of barometric pressure the MSM helps your body to get rid of the pressure in your body because the fluid can go easily through the walls of the cells, instead of staying locked in the cells. Would like to know if others have had good results with MSM??"

FROM DOM: Here's what I say on my tips page about MSM http://www.fms-help.com/tips6.htm#63. You can obtain an excellent MSM here. (Click on your country, then type MSM in the search box.)

4. MEN WITH FMS

From a reader--

"I was a very successful businessman [until recently]. I have been suffering with chronic fatigue and severe fibromyalgia. I have all the symptoms on your web page list. Your description is the only honest description that I can relate to. I have been searching and searching for anyone out there that I can relate to. Why don't any of these other web sites write truly about what it's like living with this disease? Does anybody care? It took 2 years to get a diagnosis and approx. $20,000 and many doctors. Why does it take so long? I gave every doctor a long list of my symptoms and had to write them down for each new doctor, because I have been so bad with this - bedridden for 2 years and could not communicate well enough to doctors because it affected my brain. If only the world knew just how devastating this disease is."

FROM DOM: I hear from many men with FMS. I have a special page for males with fibro at www.fms-help.com/men.htm. I totally agree with this reader. Few understand how debilitating FMS/CFIDS can be. A list of FMS symptoms is at www.fms-help.com/signs.htm and a description of CFS/M.E. is at www.fms-help.com/ME.htm. A list of occupations of my readers with FMS/CFIDS is at www.fms-help.com/occupations.htm. I am working very hard for more awareness of this illness, e.g. www.fms-help.com/congress.htm and www.fms-help.com/letter.htm.

5. ELAVIL

From a reader--

"In regard to Item #4, www.fms-help.com/100410.htm about Elavil for pain. The only thing the low dose of Elavil did for me (most doctors start at 10mg maybe going up to 25mg per day) was that the daily headaches I had for 20 years went away after 3 days of being on the 10 mg dose (Don't ask me why it worked at that dose,but didn't help me when I was on antidepressants for a total of 4.5 years - Paxil and then 150 mg of Elavil at night to help with sleep). Scandinavian studies showed that the Elavil usually works for chronic pain for a period of about 90 days and then nothing after that really. That is what happened for me..I read this study AFTER being on the Elavil and complaining to the doctor that I was at a standstill."

6. READER NEEDS CHEAP OR FREE VALCYTE FOR HHV-6

From a reader--

"I'm rather quite convinced my CFS is caused by the HHV-6 virus. I've got all the symptoms to match that - and I've tried everything else. I am still hunting everywhere for discount, or free Valcyte. Not generic. I don't want to trust spending $45 or so on a generic. The only thing I've come across is an internet, online Canadian Pharmacy that will sell Valcyte for half price. (So, what would be $3,000 a month would be 'only' $1,500 a month) I know I'll need 6 - 18 months or more of the treatment because I 'wasted' my time - like 10 years - trying antidepressants and all these other treatments that didn't help, but made me all the more ill. I did try Valcyte once for 4 months - but ruined it all by not having the correct protocol. #1 - you NEVER take opiates/narcotic painkillers while on Valcyte. My pain Dr. had me on the worst - oxycontin. I could tell that Valcyte was starting to work. I had the 'herx' reaction so fiercely that first week - but quelled the pain by allowing the pain Dr. to double my ocycontin. stupid, stupid,stupid. That narcotic stopped Valcyte in its tracks. After that first week, I gained no improvement whatsoever. NOW... due to the clinical studies released on Valcyte and HHV-6, CMV, and Epstein-Barr, I have the protocol. I will do it RIGHT this time. Now, all I need are the meds... DOES ANYBODY KNOW OF PROGRAMS FOR CHEAP -or- FREE VALCYTE???"

FROM DOM: Write dombush@bellsouth.net with any info you have on Valcyte. I found this list of antivirals that are best for HHV-6: http://www.ivpresearch.org/drugs.htm

7. OLDER FIBROMYALGIA SUFFERERS

From a reader (nurse)--

"Please tell the older folks that it isn't just newer chemicals causing fibro. There were plenty of agricultural and industrial chemicals around in the old days. In addition, growing up malnourished can lead you to not have adequate nutrition for your body to detox these things."

8. OXYGEN CONCENTRATOR

From a reader--

"I have been using an oygen concentrator while sleeping for the past 4 years and it has greatly helped. I was orginally put on it for sleep apnea when I wasn't a good candidate for a C-pap. I had surgery, which was a big turning point, but my Pulmonary Specialist kept me on the machine because it seemed to help FMS patients."

FROM DOM: That's very interesting about the oxygen concentrator! I am a little confused right now about adding oxygen (which I am doing with oxygen drops) vs. taking ANTI-oxidants, like OPC's. I have sent this question in to a highly recommended doctor and am awaiting a reply, which I hope to get this week. Will report in next newsletter, hopefully.

9. GET OFF YOUR BUNS

From Dr. Crandall's Heart Health Report http://w3.newsmax.com/newsletters/crandall/issues/chh8/crandall_chh8_8.pdf--

Snippet: "Get Off Your Buns! Human beings were made to move, but in the information age we spend hours and hours every day just sitting. As I have long suspected, the way we live now, including how we spend our leisure time, is so unnatural that it’s killing us! Alpa Patel, a researcher at the American Cancer Society, analyzed survey data from 123,216 people, studying the number of hours per day that they were sedentary, or sitting. Then the people who took the survey were tracked from 1993 to 2006. Even among the study subjects who exercised vigorously, those who sat for long periods each day had a much higher mortality rate. And the results were worse for women than men. Women who sat more than six hours per day, when not on the job, were 37 percent more likely to die during the study’s time period. Men who sat for the same time period were 18 percent more likely to die. Those who did not exercise died at even higher rates. In this group, the women were 94 percent more likely to die and the men 48 percent more likely. It appears that a daily period of exercise does not compensate entirely for simply keeping on the move. The researcher, Patel, believes that prolonged time sitting has a major impact on metabolism, influencing triglycerides, HDL, LDL, plasma glucose, and blood pressure. Think of the constant movement required of our ancestors as they farmed and hunted and kept a household. We just don’t do that anymore. We have to find ways to keep moving, even if they don’t involve common survival tasks. So instead of sitting down after dinner, take a walk — even if you worked out that morning."

10. GLAMOR PHOTOS

FROM DOM: I heard about a man whose wife had some glamor photos taken. They had only one car, so she took him to work in the mornings at 5 a.m. in her bathrobe, then went back to bed. One day her husband was proudly showing a co-worker the glamor photo in his wallet. The person said, "Well, if that's your wife, who is the lady that brings you to work every morning?"

11. FIBROMYALGIA AND CHRONIC FATIGUE & IMMUNE DYSFUNCTION SYNDROME

List of FMS symptoms: www.fms-help.com/signs.htm

Dom's Fibro story: www.fms-help.com/fibro.htm

List of CFIDS symptoms: www.fms-help.com/ME.htm

Dom's CFIDS story: www.fms-help.com/fatigue.htm

Things that help me stay functional: www.fms-help.com/what.htm

12. THE ENCOURAGING WORD

From our plumber--

“God blesses those who patiently endure testing and temptation. Afterward they will receive the crown of life that God has promised to those who love him.” (James 1:12 NLT)

13. TAI CHI

From a scientist--

http://www.nytimes.com/2010/08/19/health/19taichi.html?_r=1 - Tai Chi helps fibromyalgia.

FROM DOM: My guess is that Tai Chi uses the brain to calm the nervous system, as well as being a gentle physical activity. However, during my early fibro days, I doubt I would have been able to do Tai Chi - I was in so much pain for 14 years - here's how it was for me when first diiagnosed: www.fms-help.com/interview.htm.

14. WHAT IS A FIBRO FLARE?

From a reader--

Feeling

Lousy

And

Really

Exhausted

15. READERS' PRAYER CORNER

Don - His music minister, Dave, has malignant cancer - age 36 and married with 3 children.

Helen - Her cousin, Jack, was in a serious motorcycle accident.

Reader with fibro - Has serious marriage problems involving separation and possible divorce - children are involved.

Reader with CFS - Is facing a disability hearing with mostly unsympathetic judges.

Susan - "Please continue to pray for my fibro friend's daughter Megan - see www.prayersformegan.com. [Recap: When Megan was in labor with her first baby in July, doctors discovered that she had leukemia, despite a perfect blood test just 2-1/2 weeks before. She was taken to oncology for cancer treatments to save her life immediately following delivery.] Now, in October, Megan had been doing so well after she received her brother's bone marrow, they were hoping she could go home to Ryan (her husband), and Rylee (newborn) would come home from Grandma and Grandpa's house early next week. Unfortunately, Megan's had a severe set back. Again, she's been put on a drug induced coma, in ICU. She's having difficulty getting her heart and lungs to cooperate at the same time. She has a severe infection in her lungs or heart...and Ryan went over immediately from school, and for the first time, he wasn't allowed into her room. Our friend Dianne has gotten a Run4Megan in downtown Sonora... I was planning on attending, but after having a fever of over 101-102...I checked in with my doc (waiting for 4 days...I really believed it was going away) I have bacterial pneumonia! I'm just disappointed that I can't be there to support the women (woman) that is putting it on. Pam, Meg's mom has gone to Seattle to help with Rylee. Since Ryan is in Dental School, Rylee went back to spend some quality time with Grandma Boyack and Grandma Smith. I know you have a lot of people that you can connect with, and I know how much Pam (Megan's mom) would appreciate it. I don't know how she's doing this with her FMS. Ryan has up a Facebook page about Megan at http://www.facebook.com/pages/Prayers-For-Megan/119177548129242."

16. ACCUSED OF BEING A DRUG ADDICT

From a reader--

"I am only two months, possibly 3 months, from my disability hearing. Out of the five disability judges in my city, only 3 are sympathetic to fibro/CFS. Even so, my pain clinic doc put me on narcotics for a year. What a mistake that has turned out to be!!! All my medical files sent to the courts are full of accusations calling me a "drug addict," "always taking more than her dose required.." "always going to multiple doctors just to get more narcotics," (hardly!) etc... Family members are the worst - they don't think I'm ill with anything - I'm 'faking' it just so I can get prescription narcs. I can hardly believe it! Why would I even want to snarf narcs if I was a person who never touched an aspirin prior to CFS days?!??! I used to run marathons!! used to be a missionary! CFS has knocked me off my pedestal as far as my family is concerned. They'd just as soon throw me into the gutter. Even now, I do volunteer work - when I am able to take low-low-low dose morphine and adderall - to make me coherant enough. The lady I volunteer under has a son who has CFS so severe, he's bed-bound - can only move his big toe to type on a keyboard to communicate - and a laser strapped to his forehead so he can point to things. I asked my 'boss' if I could talk to him about the possiblity of looking into the viral treatment. Unfortunately, she sounded very disgusted with him. Poor son. Sounds like his family has thrust all their support out from under him as well! There's a verse in the epistles that says 'if you do not help the needs of your own family when they are in need, you are worse than the heathen.' I've seen CFS and Fibro produce such a heathen-like response in families. It does make me draw nearer to the Lord - as He is the ONLY one who understands."

FROM DOM: It is so hard to have a chronic invisible illness, because you get virtually no sympathy. So in addition to physical suffering, you also have social, emotional and mental suffering - not to mention the financial suffering. Besides the Lord, the only people who understand FMS/CFIDS are others who have it. I've got lots of support for people in this predicament - here are just a few pages on my site addressing this problem--

www.fms-help.com/misunderstanding.htm

www.fms-help.com/skeptics.htm

www.fms-help.com/misery.htm

www.fms-help.com/congress.htm

www.fms-help.com/occupations.htm

17. BROOKLYN TABERNACLE CHOIR

FROM DOM: My newsletters get pretty heavy and depressing at times, so I try to lighten them up with uplifting things that come my way. Here's a video of a great gospel choir: http://www.youtube.com/watch?v=uiJK_bfs1RI&feature=related! - I read a book by their pastor (Jim Cymbala) called "Fresh Wind, Fresh Fire." An awesome story about how this unlikely church was started. And here's some info about Carol Cymbala, the pastor's wife, who is Brooklyn Tabernacle choir's director and songwriter: http://www.brooklyntabernacle.org/Choir/Carol-Cymbala/. As a church musician, I am amazed at her story! I love our choir at church! Our music director had a chance to visit Brooklyn Tab last year. Must have been a great experience!

18. FIBRO & LUPUS

From a reader--

"Like another reader of yours, I too have just (finally) been diagnosed with SLE (Lupus). Part of me is really happy that I have a diagnosis, part of me is not happy after reading that SLE is incurable and system wide. But ----- it does explain why so many different parts of my body, organs, are involved. It has taken 8 plus years to finally get to this diagnosis, now I have to learn to adjust, and seek ways of treatment that do not involve too many ugly drugs. Currently I have started Plaquinil and am struggling with headaches and nausea, but I do not want to take another drug to deal with the side effects of the first drug. I am sure many of your readers will understand this conundrum. Doc has assured me that Fibro and Lupus can be had in the same body, in fact he seems certain that I have both. The sunsensitivity is bothering me right now. I am not a sun worshipper, but now I must take care to almost hide from UVA and UVB rays..... long sleeved clothes, sun hats and a 30 plus sun screen are now in my arsenal! A sunscreen which does not contain all the horrid toxic chemicals was a first priority for me."

19. CAUSES OF FIBRO

From a reader--

"I was just reading the latest newsletter www.fms-help.com/100410.htm and came across the stuff I wrote to you last week. At the end of one chunk, you included the link to your list of causes of fibro www.fms-help.com/causes.htm. I haven't read it for a while so I clicked right on over, and wow!, found a reminder about magnesium that I've been needing for several days. I had been debating whether I should make a dr's appt to get some muscle relaxers but there was your list instead. Thank you so much."

20. BRAIN FOG & LUPUS

From a reader--

http://jenlynn401.wordpress.com/2010/10/07/brain-fog-and-lupus/

21. HAPPY ANNIVERSARY

From a reader--

"Today is the anniversary of the Science paper. Thank you Whittemore Peterson Institute! One year ago our world was shaken by an "earthquake" of unparalleled size, news that seemed unbelievable, the discovery of a retrovirus [XMRV] - like HIV or HTLV - in our blood! As the initial shock wore off ...and title wave of emotions calmed, we began to see the amazing impact this news carried, a tsunami wave that could tear down decades of government denial and physician misunderstanding. A year later the "aftershocks" continue to ripple, gaining momentum through ongoing research breakthroughs, cracking the foundations of the status quo, and carrying us on waves of renewed hope. I am off to UCLA today to hear Dr. Mikovits speak."

FROM DOM: See my page about AIDS & CFIDS http://www.fms-help.com/aids.htm.

22. BARBIE'S 50TH

From a friend--

It's about time this happened to her......

And here's a Barbie joke:

What does "Divorced Barbie" come with?

Answer: All of Ken's stuff.

====================================================

FROM DOM: Well, that's all for now. As you can see, I'm getting silly!!!! (It's getting late.) Seriously, I have never liked Barbie dolls.....totally unrealistic.....so this cartoon amused me and I could sure relate to it! Happily, I'm doing very well (for a fibromite) these days. A list of helpful things I use to stay functional (not "cured") is at www.fms-help.com/what.htm. I've been busy planning our annual fall recital for my piano and guitar students www.fms-help.com/students.htm for next Friday night, October 15. My students are working hard, so I hope it will be a lovely event! I have to pace myself so that I don't get too stressed out or worn out - see my 100 Tips for Coping at www.fms-help.com/tips.htm. (Of course, sometimes life cooperates and sometimes it doesn't!)

'Til next time,

Dominie Bush

www.fms-help.com

dombush@bellsouth.net

II Corinthians 1: 4 - "[God] 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.