Dom's FMS/CFIDS Newsletter
Dominie and Donnie Bush - at the 10th recital of the School of Music.
June 13, 2011
A Christian-based newsletter about Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E.) - sharing thoughts, research and experiences.
FIBRO STORY CFIDS STORY INSOMNIA STORY HELPFUL THINGS I USE
1. READERS WRITE
"Love the newsletter www.fms-help.com/newsletters.htm! Awesome work. Thank you for making a difference in my life!"
"When I asked a question on the web, out of nowhere you and your flock were here. I was so surprised that someone took the time to try and help, and then after reading the newsletter I saw other smart people interested in surviving this [FMS/CFIDS], instead of just complaining or doing the feel sorry for me cuz I am sooooo much worse stuff. Your site - the info, the care - all of it is like a diamond when my life is nothing but nasty."
"I was SO happy to have found your site."
"I was proud of you, when you set up your site www.fms-help.com as a Christian site. Keep it up. I will pray for your ministry."
'Thank you for posting all your information to help others with FM. We all have our individual struggles but every little bit of information helps us come closer to feeling well. THANK YOU!"
"You are doing great work."
"I read your testimony www.fms-help.com/salvation.htm. It is beautiful."
"I very much appreciate all your time and hard work on your site."
"Before I found your site several years ago, I felt alone in the wilderness of misdiagnoses,unconcerned Drs. and medications too numerous to mention. I was in total despair over what this insidious disorder has done to my life. I feel I have walked out of that wilderness into a new and enlightened day. Although, I have never met you and the thousands who depend on you for information and encouragement,I feel close to you all. I know how you feel, how you think, how you despair, how every new turn brings hopes that are often dashed. We are a family of hopefuls, different in so many ways, but related by our search! Please continue to bring us knowledge, options, comfort and HOPE!" "Your effort, time and info are all wonderful and have been for many years. I can tell you put your heart into each newsletter."
"Thank you for all your years of sacrifice."
2. DOES STRESS CAUSE FIBROMYALGIA?
Reader 1--
"I think there is something to stress being involved. Looking back, my problems began in the late 80s, after my husband was diagnosed with cancer while I was pregnant with our oldest son. Then there was a series of family illnesses, out-of-control neighbors, and many other issues; none of which I seemed able to do much about. Maybe it’s that ‘one thing after another’ “syndrome”—too many things going on that aren’t positive."
Reader 2--
"I don't think fibro is caused by stress. I do think that stress can exacerbate the symptoms if you have it..like many other diseases.. stress is just not good.. I am strongly inclined to believe that fibro is an inherited (genetic) condition as there seem to be many families with multiple sufferers..I personally have 2 nieces with it and two cousins..Additionally, I had an aunt who was always described as "sickly" or more unkindly a hypochondriac.. now, I am sure that what she suffered from was Fibro..however it was not identified in those days and her pain was never diagnosed."
Reader 3--
"This [occupations of people with fibro] list www.fms-help.com/occupations.htm is so extensive that you could justifiably say anyone can get fibro. More revealing might be to ask if they were good at taking care of themselves. I'm going to guess that we were all unbalanced towards using our strength rather than doing things to actively build it. Now is the best care I've ever given myself, and it's because I'm forced to!"
Reader 4--
"I do not know if stress CAUSES fibro but it SURE makes it worse...! and look at me home on disability you would think not much cares. but being alone a lot, (people person) (unreliable for volunteering I feel) - aches begat pains, pains begat more pains... I tell you FOR SURE emotions make fibro worse worse worse!! weather affects it.. yes jobs do, (they create emotions, stress etc.!!) Could be wrong but I think a lot of fibro people are SUPER sensitive people like me (we internalize, feel guilty, disappointed, etc.) too much... My fibro MUCH worse since home... so is some forms of stress and anxiety and DEPRESSION."
Reader 5--
"OH...and YES, stress is now and has always been my main trigger! I was raised in an abusive home. I can't remember a night I went to sleep w/o being at least a little afraid. My first marriage was much the same. My second one was stress of a different kind...the cheating kind. All of my jobs have been lots of responsibility and stressful. Even now, I am "the rock" at the moment of stress, but I'm down for the count as soon as the situation is over. My other triggers are heat, humidity, allergies, too much physical activity or over-exertion, cold and dampness, and any kind of illness...a cold or such. As bad as the pain is...and I live continuely with a high degree of it...it's the FOG that's the worst for me. I hate fogging...I feel so stupid. I cycled for YEARS from well to sick but don't know what's wrong until finally one day I couldn't just take a few days off and be better... I was 33 years old. I'm now 46. Life is better. I am blessed. FMS is hard...but there are worse things."
Reader 6--
"Personally, I’ve come to think that stress does not *cause* fibromyalgia, but triggers a person’s system that is already imbalanced. In other words, the balance of X system was compromised by something that injured it and thereafter stress tolerance is lessened. The person has less capacity for life stresses than previous to the injury. It now makes complete sense to me that something in the past injured my X system, which is my neurological system, and it became imbalanced. Since then, the various, say, sub-systems connected to my nervous system are therefore thrown off and affected: immune system, hormonal system, digestive system, etc. Helping my neurological system regain a better balance, though likely not fully 100% regained, is making dramatic improvement in all these subsystems, also as long as they too are getting specific recovery support; like, for example, progesterone cream, appropriate vitamins, etc. I just posted something related to this at http://hubpages.com/_dsref/hub/A-Treatment-Approach-to-Fibromyalgia-and-Migraines-that-Works."
Reader 7--
"I think stress unleashes fibro - or is the trigger. I think eventtually an organism or virus or combo thereof will be detected which is the cause."
Reader 8--
"To say that stress causes fibro might be misconstrued by some to mean that fibro is all in our heads because we are stressed out. Perhaps a more correct (safer?) way to phrase this would be that 'stress exacerbates the underlying cause of fibromyalgia'."
3. APPLE CIDER VINEGAR
From a reader--
"They say if vinegar will break up the hard water build-up in a tea kettle... that it'll clean our pipes & arteries too. I hope so. What I've personally noticed most is that if my Mom or I either one feel a UTI coming on, a single dose of apple cider vinegar knocks it out. Also, being that it's so bittery sour, this is very hard to believe... but it is the ONLY THING that knocks out my terrible acid reflux or gerd pain. I absolutely HATE the taste of it, and it's sometimes a last resort. But the pain relief and being able to sleep is worth it. Plus it's dirt cheap." Natural Apple Cider Vinegar is a wonderful natural cure for a number of ailments which usually require antibiotics and other medications that have a number of side effects. In particular, Apple Cider Vinegar has been known to: Reduce sinus infections and sore throats Balance high cholesterol Cure skin conditions such as acne Protect against food poisoning Fight allergies in both humans and animals Prevent muscle fatigue after exercise Strengthen the immune system Increase stamina Increase metabolism which promotes weight loss Improve digestion and cures constipation Alleviate symptoms of arthritis and gout Prevents bladder stones and urinary tract infections
FROM DOM: I reported on Apple Cider Vinegar (ACV) in past newsletters and gave it a good long try myself (it tastes vile) with no benefit. However, I'm for whatever helps people. The ACV referred to here is the cloudy type from the health food store, not the clear type from the grocery store. If you want to comment on ACV, write dombush@bellsouth.net.
4. HYALURONIC ACID FOR JOINTS
From a reader--
"In a previous newsletter, you said you are having some arthritis in your hand now. I've had it in both hands (and knees) for a few years and have tried several things. The last few months I have been taking hyaluronic acid in liquid form and it completely eliminates my hand pain. (My knees have additional issues that might require surgery.) I took it every day for about a month at first, now only need it once a week to ten days. I am enclosing the address for a little squib about it by Ray Sahelian because I really like him and his site but there are several sites with more info than this. http://www.raysahelian.com/hyaluronic-acid.html I take about 120 mg at a time. I started with a tablet form with only about 16 mg per tablet and it did nothing for me. The liquid brand I have also has glucosamine and that gave me very serious diarrhea for a while but I have gotten over that. I think it's relatively expensive but in my condition, anything is worth it to reduce pain. BTW, I used DMSO for arthritis for a while, and it seemed to work at first but then didn't work anymore -- the usual fibro story. Hot wax is good for stiffness (I got a crockpot at the thrift store, and paraffin at the grocery store) but it doesn't take the pain out like hyaluronic acid does. The hyaluronic acid has worked for several months, and I don't see any diminishment of efficacy so far."
FROM DOM: I will look into this! The joint formula I take faithfully has hyaluronoic acid as well as glucosamine, chondroitin, etc. It used to help until recently. Now with osteoarthritis progressing, the cartilage is gone in 2 finger joints and breaking down, I fear, in other finger joints based on the pain I have when playing the piano, shaking hands with people, etc. - so I don't know what to do! Playying the piano is becoming more painful and also damaging, as the bones grate on each other at the joints. I don't want to destroy my hands worse than they are now, yet this is what I do for a living, and I also want to keep serving my church, as I am desperately needed there. I wish there was some kind of injection that would put a cushion between the joints. I know they can do this for backs (or insert a disk), but I am going to the best orthopedic clinic in NE Florida and they have only done the cortisone shot and pain patches - neither of which has helped. They don't do joint replacements on musicians, the doc said, because they don't ever get their mobility back like they need. So that leaves me wondering about disk replacements for fingers?? I will look into the HA liquid! I began taking Meloxicam (Mobic), an NSAID, but frankly, it doesn't help either. I just ordered Synthovial 7 (an H.A. product) to see if that will help. I noticed that I actually reported on Synthovial 7 - but in relation to Fibromyalgia - in 2003 and 2005 newsletters www.fms-help.com/newsletters.htm.
5. PLANT GROWTH ACCELERATORS SAFE?
http://articles.mercola.com/sites/articles/archive/2011/06/03/why-are-nonorganic-watermelons-exploding-in-china.aspx - about watermelons
6. FOOD FOR THOUGHT
From our church bulletin--
"IT MATTERS NOT - It matters not if I’ve been hurt; it matters not at all That sometimes from my weary eyes, the scalding teardrops fall. What matters most – is if I’ve erred and not confessed the sin, And through my lack some needy soul has failed to follow Him. It matters not if cherished friends, on whom I lean in vain, Have wounded me by word and deed and left me with great pain. What matters is – Can I forgive again and yet again? It’s not, “Have they been true?” but,“Lord, have I been true to them?” 'Twill matter not, when evening comes how rough the road I’ve trod, If only I have walked with Him and led some soul to God!" - Author Unknown
7. YEAST INFECTION NO MORE
From a reader--
http://www.yeastinfectionnomore.com/Yeast-Infection-Candida-Cure.html
8. BRAIN ENTRAINMENT SPIRITUALLY SAFE?
From a reader--
"re: topic in previous newsletter, I looked up the Mentallion website for the Entrainment....it could be good...but I shy away from things that require feedback, listening to beats, etc. I realize music and the different beats affect our brain different ways (baroque is suppose to to wonders if listened while studying) but I just do not want to take the risk. For instance, Yoga is just one of many therapies that we Christians have relaxed ourselves into. As long as we don't do the prayer or the bowing, etc. we believe it will be safe. Yoga was "birthed" from the Eastern religion....how can it NOT affect us? this might be very safe (Mentallion), and it DOES sound good, but personally, I just cannot take the spiritual risk."
9. DISABILITY COMMENTS
From a reader--
"I was an RN who worked in Medical/surgical. Same day surgery. Hospice care. Home health case manager. I moved to all different areas of nursing. When I could no longer do any type of nursing I just kept cutting my hours and patient load. I waited three years to apply for disability. I was told I should not have waited so long..My monthly amount was not as much as it should have been because I was stubborn thinking I would go back to work."
FROM DOM: See disability tips from readers at www.fms-help.com/disability.htm.
10. MCS (MULTIPLE CHEMICAL SENSITIVITIES) - LEGAL HELP
http://walkuplaw.com/ - This attorney has MCS himself and has helped many get disability.
11. XMRV, AUTISM, CFS & MOUSE VIRUSES
From a reader--
http://www.ageofautism.com/2011/03/a-theory-of-xmrv-creation.html
Snippet: "Dr. Deckoff-Jones writes in her blog, "My guess is that passing lots of human tissue through mice and then culturing in the laboratory for now more than four decades has produced the conditions to enable a very unlikely event-by giving it many chances to occur. A probable place for this to have happened was in the creation of live attenuated virus vaccines where virus is made less virulent with multiple passes through animal cells in tissue culture." She also notes that scientists were "fiddling with mouse viruses in the lab in the 1930s." The first documented autism patient, Donald T. in Leo Kanner's original monograph, was born in September of 1933. The first outbreak of chronic fatigue syndrome/ME happened at the Los Angeles County Hospital in 1934. Close to the end of her post she states, "Putting it all together, it seems quite plausible that batches of vaccines containing retroviruses that are infectious to humans have been going out for over half a century. Much of what I've written here has been known but ignored for a long time. The assumption was made that endogenous animal retroviruses couldn't harm people. It's becoming clear that this was a very incorrect assumption." When Dr. Elaine DeFreitas found evidence of a retrovirus associated with chronic fatigue syndrome/ME back in 1991 the CDC failed to follow her testing procedure and as a result her funding was withdrawn. At the end of her article Dr. Deckoff-Jones asks if the CDC had acted responsibly at that time whether the autism epidemic could have been prevented? It is a question both the chronic fatigue syndrome/ME and autism communities want to have answered."
12. PASTORS WHO ARE WOLVES IN SHEEPS' CLOTHING
From a reader--
http://www.nowtheendbegins.com/blog/?p=1366
13. LYMPHATIC DRAINAGE
"Re:topic in a previous newsletter, I read your post I agree. I see the CFS Specialist at University of Miami and she does not believe in LD for CFS patients...she feels, it spreads the toxins throughout the body...from what I have been reading, if you drink plenty of water...you urinate the toxins out. All of this is so confusing!"
14. WHO GETS FIBRO?
www.fms-help.com/occupations.htm - occupations my readers had at the time they developed fibromyalgia.
15. "BOULDER-ROLLERS"
From a reader--
"re: www.fms-help.com/occupations.htm - Apt expression, Dom! "Personally...whenever I get a "breather" from this illness, I think to myself, 'Wow! It sure is easy to do everything if you are a NORMAL person!' " Hammer. Nail. Head. It stuns me whenever I have 2-3 hours where my energy and overall disposition are better: I actually can manage to smile and be patient without ANY strain at all. Unfortunately, those short windows are few and far between. The rest of the time, EVERYthing people-related is extra burdensome, and of course all the other mundane matters, too---but the people stuff is worst of all. As a fellow CFSer/FMer once said, "I could easily and comfortably live as a hermit."
FROM DOM: I find talking on the phone very exhausting and also one-on-one conversations. This - plus many other facets of FMS/CFIDS - has put the damper on my social life and I have lost touch with many friends and feel badly about it. I must save energy for the necessities of life.
16. CFS/M.E. SUFFERERS PERSECUTED IN THE U.K.
From a reader--
"This history of CFS outbreaks is puzzling
(http://www.name-us.org/ResearchPages/ResEpidemic.htm#M.E._Epidemics): notice that they started the year after Hitler came to power. I've wondered if his "scientists" unleashed some sort of virus that caused CFS, altho I also know that a CFS-type disease called "neurasthenia" was part of medical terminology in the 19th century, but it would appear that prior to 1934, there were no massive cluster-outbreaks of it anywhere (unless they simply weren't documented?). I also find it very bizarre the way M.E. sufferers are persecuted in the U.K. What's up with that? The whole thing is just downright suspicious."
FROM DOM: See www.fms-help.com/mycoplasma.htm.
17. CHRONIC PAIN CAUSES BRAIN DAMAGE
FROM DOM: A reader sent me a fascinating article from Discover Magazine about chronic pain causing changes in the brain. If you want me to send it to you in .pdf format, write dombush@bellsouth.net. Also, stealth viruses cause brain damage www.fms-help.com/stealth.htm. Try a search for "brain damage" references on my site - use the search box at the end of this page. You will find some fascinating information!
18. WEAPONIZING DISEASE
From a reader--
http://www.consumerhealth.org/articles/display.cfm?ID=20000830164126 - Absolute GOLLLLLDmine of info! Snippet: "The U.S. Public Health Service also closely followed the progress of biological warfare research and development from the very start of the program, and the Centers for Disease Control (CDC), and the National Institutes of Health (NIH) in the United States were working with the military in weaponizing these diseases." AHA! This explains why the CDC has been so hostile about CFS research! Another quote: 'The advantage of this crystalline disease agent is that it does not show up in blood and tissue tests because the bacteria has disappeared and only the pure disease agent remains.'"
19. BROTH CAN HEAL
From a reader--
"The most nutritious source of gelatine comes when you simmer bones when making soup stock. The Weston A Price organization explains it very well. And the basis to a great soup is the stock it is made from. Good broth will resurrect the dead," says a South American proverb. Said Escoffier: 'Indeed, stock is everything in cooking. Without it, nothing can be done.' http://www.westonaprice.org/food-features/515-broth-is-beautiful."
FROM DOM: Chinese medicine is based on food that heals and herbs. When my father www.fms-help.com/eulogy.htm became very sick while visiting his family in China, the hospital there treated him with broths and other protocols not used in Western medicine. He recovered and lived to be almost 92.
20. DOES FMS/CFIDS WORSEN WITH AGE?
From a reader--
"In my opinion, stress plays a big part in fibro symptoms. But I honestly think (in my case anyway), it takes a traumatic trigger (or two) to start the downhill spiral. Has any of your readers mentioned that as Fibromyalgia and Chronic Fatigue sufferers age (or possibly as the diseases progress), they find they become unable to continue working full-time or become totally disabled? I was diagnosed with both of these when I was 22 after being in a car wreck and a short time later suffering a miscarriage at 18 weeks. The symptoms started fairly quickly, but I was first diagnosed with depression, then lupus, and finally FM & CF. I am now 44, and struggle to make it work every day. I usually do pretty good until I’ve worked 3 or 4 hours, and then I am so exhausted. Not sure how much longer I can continue this struggle. I also suffer from Polycystic Ovarian Disease which has caused me to have High Blood Pressure, High Cholesterol, Diabetes, and Thyroid Disease. I am taking medications for most of these, which also leaves me very fatigued every day. I started out dealing with all of the symptoms fairly well, even though they changed my life dramatically during a time which should have been the best part of my life (early twenties). I thought I could continue working until I retire but just seems as each day progresses, the harder it is to continue. Just curious if anyone else has mentioned their progression like this."
FROM DOM: Write dombush@bellsouth.net with feedback.
21. CHEMTRAILS vs. CONTRAILS
From a reader--
"I have never been able to get my head around the reports I have read – in past years regarding what is known as Chemtrails. To the non- initiated this refers to chemicals being deliberately sprayed from aircraft. I do not mean what you might see when a field is being sprayed for insect or blight prevention etc. This Chemical Spray is done without your knowledge, across civilian populations, containing wicked poisonous chemicals… and would you believe it (sarcasm) your government denies it is happening. Your government has denied it for many many years, telling the non-initiated that what you are seeing in the skies is simply the result of so called ‘normal’ CON TRAILS. After all, why on earth would someone spray cocktails of various chemical on the human population? It makes no sense does it. http://justmeint.wordpress.com/2011/06/07/chemtrails-are-real-new-information/."
22. "MEAN MOTHERS: OVERCOMING THE LEGACY OF HURT"
http://www.amazon.com/dp/B0043GXYHS/ref=pe_113430_20117360_pd_re_dt_d1
23. CHRONIC PAIN IN THE AGING POPULATION
http://justmeint1health.wordpress.com/2011/06/07/tip-of-the-iceberg/
24. "STAY CALM, DAD"
From a reader--
http://www.youtube.com/watch?v=WJbh7FIWt3Y - adorable 5 year old! This will give you a smile if not an outright laugh!
25. LIPITOR & FIBROMYALGIA
Reader 1--
"The discomfort that users of cholesterol lowering medications known as STATIN’S suffer from can range from mild and manageable muscle aches to totally debilitating life threatening effects. That is a no brainer to those of us who have developed system wide pain after being prescribed drugs like Lipitor, Crestor, and Zocor etc. Over the years sufferers have been able to read the studies and evidence of some great scientific minds, who have dug deep to discover – exactly why it is these so called ‘Miracle’ drugs – as the pharmaceutical companies would have you believe, do cause our body system to feel as if they are closing down. http://justmeint1health.wordpress.com/2011/06/11/the-damage-caused-by-taking-statin-medications/."
Reader 2--
"I am convinced that my Fibro started within 2 weeks after starting Lipitor for high cholesterol. Have you heard of any other drug-induced FM?"
FROM DOM: Write dombush@bellsouth.net with responses. BTW, the side effects of Lipitor are at http://www.lipitor.com/aboutLipitor/sideEffects.aspx?source=google&HBX_PK=s_lipitor+side-effects&HBX_OU=50&o=23127370|166376222|0&skwid=43000000210101631
26. LIST OF MSG SUBSTANCES & DANGERS
From a reader--
"Everywhere you look today you read that ‘salt is evil’ and must be reduced. Not that there is much in the way of scientific proof to show that by reducing salt consumption you will live long and prosper! If your diet does not consist of high amounts of processed foods, you have no need to reduce your salt intake. Because the Government has stated this reduction must take place, the food industry must comply, and is doing its part to find ways to reduce the salt in the processed food supply, but without reducing the flavour of the food. After all, take out the salt and you would be left with virtually no taste in processed foods. http://justmeint1health.wordpress.com/2011/06/08/industry-seeking-ok-to-use-flavor-enhancer-620-after-reducing-salt-in-food/."
27. "GREAT TASTE, NO PAIN"
From a reader--
http://www.greattastenopain.com/great.asp - food combining is the secret to relieving digestive ills, such as IBS, Crohn's, diarrhea, constipation, gas and bloating
FROM DOM: I've reported on Great Taste No Pain in past newsletters). Basically, not eating protein and carbohydrates together. Use the Google search box below to find these references.
28. FOR DOG LOVERS
Quote sent in by a reader--
"It came to me that every time I lose a dog they take a piece of my heart with them. And every new dog who comes into my life gifts me with a piece of their heart. If I live long enough, all the components of my heart will be dog, and I will become as generous and loving as they are." - Unknown
29. CAN YOU GET FIBRO FROM DENTAL WORK?
From a reader--
"i am a forty five year old male recently diagnosed with fibro and began feeling ill after having three crowns on my molars. all three teeth had amalgam fillings in them and were ground down. i believe i was hyper exposed to mercury at that time and this acted as a trigger. Do you know of anyone who truely got rid of their fibro symptoms by removing the fillings and chelation therapy?"
FROM DOM: Use the Google search box at the end of this page to search for references to mercury, amalgams, fillings, and chelation in my past newsletters. If anyone else would like to comment, please write dombush@bellsouth.net. I am supposed to have a TON of dental work done this summer to replace broken amalgam fillings that have decay underneath. I'm dreading this. Waiting for a break in my responsibilities to have some of this done, as I don't know how it will go for me. The last time I went, I had ear pain for 2 months afterwards, and that was just for the xrays and exam.
30. FIVE DEADLY FOOD LIES
From a reader--
http://justmeint1health.wordpress.com/2011/06/09/5-deadly-food-lies/
31. PROSTATITIS, FIBROMYALGIA & CFS
From a reader--
"Is my prostatitis common in older men who suffer from Fibro? The most frustrating thing for me is that none of my family and GP believe that I have Fibro - they think it is all in my head and tell me to snap out of it: if I did not have access to your website www.fms-help.com, who knows where I would be. You got me through my first major Fibro attack 11 years ago."
FROM DOM: Comments on prostatitis and fibro, please write dombush@bellsouth.net. There are forums online for men with fibromyalgia - might be a good place to ask the prostatitis question. The only reference on my site about CFS and prostatitis is at www.fms-help.com/aid.htm - see Men With CFS Can Develop Chronic Prostate Infections - about halfway down the page. Here are some other links that will help regarding skeptics-- www.fms-help.com/men.htm www.fms-help.com/skeptics.htm www.fms-help.com/relationships.htm www.fms-help.com/occupations.htm www.fms-help.com/what.htm www.fms-help.com/misunderstanding.htm www.fms-help.com/mnif.htm www.fms-help.com/congress.htm www.chronicprostatitis.com.
32. TENS UNIT & FIBRO
From a reader--
"In regard to TENS, the newer version - ETPS 1000 from Acumed is way better and easier to use. Google ETPS for more information. It is @$475 and is a wand type applicator that works on acupunture points and trapped trigger points and any painful point in about 10 seconds. Covered by Medicare, though it has to be rented first for a month, before purchase, it is endorsed by the Fibromyalgia Network and they have published articles about it. Many physical therapists, chiropractors and others are starting to use it in their practice because it provides real relief. I use mine every day whereas the TENS did not provide relief and was limited to one or two areas 30 mins. per day. There are lots of books on acupuncture and acupressure that can be purchased used, such as "Acupressure's Potent Points - a guide to Self Care for Common Ailments" by Michael Gach which lists condition specific points, including those for CFIIDS and Fibro. Before I found this I was losing the use of my right arm through chronic pain and can now perform more functions. If the pain flares I give myself a treatment."
33. PSYCHIATRIC LABELING OF FIBROMYALGIA & CFS?
From a reader--
"From the Phoenix Rising Advocacy site http://phoenixrising.me/?page_id=2 --
The American Psychiatric Association is attempting the change the rules of the road in regard to...gulp... diagnosis----the very issue that has bedeviled ME/CFS for so many years. The APA is not attempting to change the diagnostic criteria for CFS...it's doing something much subtler than that: it's attempting create a new diagnostic category for psychiatric disorders called Complex Somatic Symptom Disorder
(CSSD). A close look at the title itself is enough to give one a few shivers...
It's "complex"---meaning that it's not clear---meaning that there's a lot of wiggle room, and we have experienced what has happened with wiggle room in the past. "Somatic symptoms" generally refer to symptoms that are unexplained.....leaving us with a new category focused on "complex disorders characterized by many unexplained symptoms" (Ouch). There is no specific mention of CFS in the definition of the category (altho IBS is mentioned), but one wonders how CFS could NOT fit into here, considering the lack of clear explanation of its causes and the many symptoms that accompany it.
This APA attempt to change the DSM-5 categories it uses to categorize disease could create a hole, a kind of black hole, which future researchers could attempt to tumble CFS (and other poorly explained disorders) into.
What can you do? Submit a request that the APA not create this new category. The hour is late: just six days remain before the deadline for submissions is reached (June 15th) but the path is clearly laid out and the job is not difficult. You could emphasize that:
(a) The highly subjective nature of the definition (which relies on unexplained symptoms and "concern" about them) is too broad and could easily lead to the inclusion of what will ultimately to be found to be non-psychiatric disorders into a psychiatric box---as has happened in the past.
(b) The definition is illogical in its assumption that "excessive concern" after six months of unexplained symptoms is indicative of a mental disorder. This is particularly true in the case of CFS which is accompanied by severe fatigue associated with reductions in work, play and social interactions. It would be hard to understand why this set of circumstances in any person would not cause substantial concern, yet the APA asserts that such concern is enough to fit a person into its new category of mental disorders.
(c) The poor efficacy of the treatment interventions (CBT) cited in this category suggests that the creation of the category runs the risk of balkanizing research and treatment efforts in a field with reduced upside.
It should be noted that CBT is used both in psychiatric and non-psychiatric disorders to equal effect. CBT's efficacy in CFS---a disorder whose symptoms would, if interpreted in one manner, appear to meet many of the CSSD criteria---is unclear with the large PACE and FINE trials providing negligible benefit and a recent longterm study reporting negative results.
(d) Considering the tendency of the psychiatric profession to mislabel disorders later found to have physiological origins, and the damage this has caused to progress in the research arena (and to the patients themselves), we suggest that it is simply not appropriate for the APA to create large categories that rely on 'unexplained symptoms'."
34. FORCED ABORTIONS IN CHINA
From a readaer--
35. HYPERCOAGULATION, FIBRIN & CFS
A reader found this post online--
"About Chronic Fatigue Syndrome & thick blood, I now have a book, "The Encyclopedia of Medical Breakthroughs & Forbidden Treatments." Page 100, under the heading of Hypercoagulation, states that based on studies in the early 90's, more than 80 percent of people with CFS also have hypercoagulation of the blood. They state this is an immune response to any number of causes and it "forgets" to switch off. This causes an accumulation of fibrin in blood, and the cause of CFS in these people. When I discovered this, I had a fibrin test. My fibrin was 1200, when the high reference is about 300. Since then I have been on a phlebotomy schedule, plus taking natto (a fermented soy blood thinner). My fibrin level is now 395. I am breathing much better, have more stamina, and my blood pressure is down. My point is, the cause of CFS does not have to continue being mystery. It does have an identifiable cause for many many people!!! Hypercoagulation. So, it need not fall into this 'trap' being laid by the APA, whereby they grab up 'mystery' diseases [the psychologizing of unknown illnesses - see Topic 33 above]. If you or someone you know has CFS, look into it! Please! Hemex Lab does the blood test. www.hemex.com. They say it's typically covered by medical insurance. Medicare covers it for me."
FROM DOM: For more info about hypercoagulation and fibrin, use the search box at the end of this page to locate references to these issues on my site. A fascinating topic indeed!!
36. OUR DAILY BREAD
FROM DOM: I've been reading this wonderful, inspirational devotional booklet since the 1960's! Every day there is a Bible verse, a short interesting story, a poem, and a thought for the day. My husband's employer provides these booklets for her employees and our church has them available in the lobby. You can request a free 90 day "Our Daily Bread" at https://secure.rbc.org/odb/signup/. Below is the poem for June 4, 2011.
"O Christians, remember, you bear His dear name,
Your lives are for others to view;
You're living examples - men praise you or blame,
And measure your Savior by you."
Anonymous
37. DOM'S UPDATE
We just had the 10th Recital for the School of Music on Friday, June 10. It was a blessed night with 33 students performing (ages 7 through adult), plus special guests: Peter Belk, from the University of South Florida, and Jason Weathersby, school founder, who now serves at Central Baptist Church in Waycross, GA.) It was a wonderful program and we had a packed house! Everyone did a fantastic job! The goal of our school is to train more church musicians (piano, guitar, and voice). I was glad that my mother, nearly 90, was able to attend. She is in great health and spirits and can run circles around me. (My brother quips, "You're older than Mom.")
Many thanks to all of my wonderful readers who have made donations to support the newsletter. It is greatly appreciated! If you have not yet donated and would like to, please click on the donate button below. Due to the enormous amounts of time and energy it takes to compile the newsletters, it has become necessary for me to ask readers who wish to continue receiving them to make a one time donation of any amount to stay on the list. My newsletters have been a "labor of love" for fellow fibromites for the past 15 years. If you have already contributed, no worries - you will always be on my list unless you unsub. If you change email addresses, be sure to write dombush@bellsouth.net so that we can stay in touch.
With heartfelt thanks,
Dominie
DOMINIE'S FIBROMYALGIA & CHRONIC
FATIGUE SYNDROME HOMEPAGE