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

Topics in this issue - scroll down to read: 1) READERS WRITE - 2) FIBROMYALGIA PATIENTS TREATED DISGRACEFULLY - 3) RATE YOUR DOCTOR - 4) FMS/CFIDS AFFECTS CENTRAL NERVOUS SYSTEM & IMMUNE SYSTEM - 5) THYROID HORMONE - MISSING INGREDIENT IN FIBROMYALGIA TREATMENT - 6) THE WEATHER ISN'T GETTING WEIRDER - 7) ALPHA WAVE INTRUSION CAUSING FIBROMYALGIA & INSOMNIA - 8) MEDICAL CARE RATIONING - 9) INVALIDATION OF PEOPLE WITH FIBROMYALGIA - 10) VIRUS TRIGGERS CHILD DIABETES - 11) STATIN DRUGS DESTROY MEMORY - 12) TOUCHING A BOO BOO REALLY DOES MAKE IT FEEL BETTER - 13) EAT RIGHT FOR YOUR BLOOD TYPE IS A BUNCH OF HOOEY - 14) LDN (LOW DOSE NALTREXONE) CLARIFICATION - 15) WHITTEMORE-PETERSON INSTITUTE (WPI) TO BEGIN SEEING PATIENTS - 16) MAGNESIUM DEFICIENCY - 17) DOM'S DENTAL SAGA - 18) BREAST CANCER BREAKTHROUGH - CUT YOUR RISK OF DEATH IN HALF - 19) CLOSING THOUGHTS

"I have been suffering with FMS and CFS since 2004. I had to stop working due to the pain from my illness. I just started with Fibromyalgia and Fatigue Centers. I hope to have some positive results after seeing 15 other doctors who were less than understanding and not very helpful. It's a disgrace the way people treat you when you suffer from this condition and try to seek legitimate relief."

FROM DOM: So true! See my good docs/bad docs page about emotionally shell-shocked FMS patients www.fms-help.com/doctors.htm. Also, read comments sent in by my readers who went to Fibro & Fatigue Centers - use the Google box at the end of this page. At least the docs at these centers are understanding, albeit expensive. No one has been "cured," but some have been helped to feel better. I think just knowing a doctor takes you seriously is a great blessing. I see an internist (doctor of internal medicine), and he has been very helpful for many years. A list of meds, supplements, etc. I have to take for my sleep disorder, fatigue, brain fog, etc. is at www.fms-help.com/what.htm. I consider myself "managed" - but not "cured" of FMS/CFIDS.

FROM DOM: My doctor (internal medicine) has been so helpful to me these past 6 years in managing my meds for insomnia, a condition I've struggled with since age 16 www.fms-help.com/insomnia.htm. He is knowledgable, kind and caring.

SINCE I LAST WROTE YOU, I AM STILL FIGHTING THIS DISEASE AND WAS READING YOUR NEWSLETTER. I BELIEVE WITH ALL MY HEART THAT THIS DISEASE AFFECTS BOTH THE CENTRAL NERVOUS SYSTEM AND THE IMMUNE SYSTEM, WITH SO MANY SYMPTOMS AFFECTING US - AND IT AFFECTS EVERY PART OF MY BODY FROM HEAD TO TOE IN SO MANY WAYS. KEEPING ALL IN MY PRAYERS THAT ARE AFFECTED BY THIS DISEASE."

FROM DOM: I have a lot about Dr. John Lowe's metabolic treatment of fibromylagia on my site and newsletters. Search using the Google box at the end of this page.

"I am glad to see that you connect fibromyalgia to your quality of sleep. I wholeheartedly agree with you. In my 30�s, I started experiencing fibromyalgia after an extended and intense bout with insomnia. For weeks, I did not sleep for 3,4,5,6 days in a row. It was horrible. This was in the early 1990�s. At that time, doctors rarely acknowledged the existence of fibromyalgia and certainly did not associate sleep disturbances as a cause of it. The doctor said I was just stressed out and I was prescribed anti-depressants. I did the best I could, on my own, coping with it. I have had two sleep studies in my life. One about 6 years ago wherein I was told that I did not have the (3) sleep disorders that sleep studies look for: sleep apnea, restless leg syndrome or narcolepsy. So I was deemed �just fine� and sent on my merry way by the sleep specialist. I knew I wasn�t �just fine�, so I hobbled along until I recently had a second sleep study done. I was told I have Alpha EEG sleep anomaly or Alpha wave interrupted sleep. Here is a website that explains it: http://ezinearticles.com/?Alpha-Wave-Interrupted-Sleep---What-Problems-Can-Occur-With-This-Condition?&id=1540763 I always had a hunch that my sleep was directly affecting me, now I know I was right. Unfortunately, there currently is no cure for Alpha EEG sleep anomaly and likewise I was told by my current sleep doctor that there are many, many other sleep disorders that doctors have no idea how to treat. I go through the same routine that you do, when I wake up during the night, I try various supplements and sleep aids to get back to sleep. Did you know that sleep deprivation has been used as an effective means of interrogation? Menachem Begin, the Prime Minister of Israel from 1977�83, described his experience of sleep deprivation as a prisoner of the NKVD in Russia as follows: 'In the head of the interrogated prisoner, a haze begins to form. His spirit is wearied to death, his legs are unsteady, and he has one sole desire: to sleep... Anyone who has experienced this desire knows that not even hunger and thirst are comparable with it.' Unfortunately, I can relate to Mr. Begin�s experience. Restorative sleep is just as essential to the body as food and water. Without them, we suffer. I would be interested to know if there have been others that report that they have been diagnosed with this sleep anomaly."

FROM DOM: Sleep is a subject dear to my heart! My insomnia story is at www.fms-help.com/insomnia.htm. I have mentioned alpha wave intrusion many times on my site www.fms-help.com. You can try a search for "alpha wave" using the Google box at the end of this page to find information on my website. I also have mentioned that sleep deprivation is a method of torture used in prisoner of war camps. In the civilian world, people just don't know what we go through - having to work, smile, function, etc. - with such horrible distress from sleep deprivation. Lack of sleep will wreck your health and immune system, since the body can't repair itself. My insomnia began at age 16. I am now 59 and finally medicated adequately www.fms-help.com/what.htm to where I do get some restorative sleep at night. I AM SO GRATEFUL!!! Sleep or lack thereof totally determines how I feel the next day. Years ago, I had several conversations with a man in his 70's who hadn't slept since age 18 when he was in boot camp. He said, "If you think boot camp is rough, try it without sleep!" (Shudder!!!!!) Who knows whether this man's insomnia was caused by military vaccinations or by stress?? He went on to have a life filled with medical problems. Such a dear man - so kind and even sent me a large reference book on fibromyalgia. Strangely, I never get "sleepy." I just get "wired and tired" or feel kind of "ill." That is how I know I need to sleep. My sleep clock is broken. Without the meds I'm on, my life would revert back to being a living nightmare.

http://www.youtube.com/watch?v=8HnkxIh62dQ - Dr. David Janda explains the new health care bill - 6 minute video. Doctors will have to ration care based on cost effectiveness.

FROM DOM: A newsletter reader sent me info from Fibro Guys about a survey regarding invalidation of people with fibromyalgia. The survey is for both men and women who have FMS. If you want to take a few minutes to weigh in on this subject, the survey is at http://www.surveymonkey.com/s/53LSLWG. I took the survey, but wish they had mentioned fatigue and insomnia - not just pain - as the main subject of most of the questions. Also, there was a confusing section of questions toward the end of the survey. See my "Men with Fibro" page at www.fms-help.com/men.htm. You can read a list of occupations (or former occupations) of my readers at www.fms-help.com/occupations.htm. Also, check out my comments about "fibromyalgia skeptics" www.fms-help.com/skeptics.htm.

http://enterovirusfoundation.org/enterodiabetes.shtml - Snippet: "Enterovirus and Diabetes - Virus 'triggers child diabetes'
A common virus may be the trigger for the development of many cases of diabetes, particularly in children, UK researchers have reported. Immune trigger: The researchers suggest that, in children with a genetic predisposition to type 1 diabetes -- an autoimmune disease in which beta cells in the pancreas are destroyed -- enterovirus infection can trigger the immune reaction that kicks off the disease process. With type 2 diabetes -- the type often linked to obesity in adults -- the researchers speculate that the infection affects the ability of the cells to make insulin, which in combination with the greater demand for insulin in obese people, is enough to set off the disease."

"While I enjoyed reading the article www.fms-help.com/021011.htm (Topic 14) written by a physician about LDN, I got the impression that most people who take this medication have a drug addiction problem. Nothing could be further from the truth!! I have been taking LDN for some time for fibromyalgia, and have never had an addiction problem. Alot of people who take LDN do not have addiction problems. I think this needs to be clarified in the article."

"Your reader in Topic 17, www.fms-help.com/021011.htm, needs to get in line for the Whittemore Peterson Institute. They will start seeing patients in May, (projected), no idea how long it will take to get in, since so many want to go. We are on the waiting list. They are not taking insurance, but I think this will be worth it. This is Dr. Jamie Deckoff-Jones' blog, she is the medical director for the WPI. X Rx See the blog post for Thursday, January 27."

FROM DOM: If you are not yet familiar with the discovery of the XMRV retrovirus regarding FMS/CFIDS, see www.fms-help.com/XMRV.htm.

"Almost two-thirds of people in intensive care hospital units have been found to be magnesium deficient. Deficiency may also occur in people with chronic diarrhea, pancreatitis, and other conditions associated with malabsorption. Fatigue, abnormal heart rhythms, muscle weakness and spasm, depression, loss of appetite, listlessness, and potassium depletion can all result from a magnesium deficiency. Magnesium levels have been found to be low in people with chronic fatigue syndrome."

FROM DOM: I used to get excruciating cramps in my feet and legs - the kind that had me screaming and sweating profusely from the pain. Nothing would stop the torturous cramping - I couldn't walk it off, bend my toes back, or find any way to stop it. It took about 10 minutes before the cramp would subside on it's own....that is, until next time! Once I got a sudden and horrendous cramp in my foot while in a ladies dressing room at the mall! My poor husband had to come into the dressing room and cut off my shoe with scissors because I couldn't bear to have the shoe touching my cramping muscles! Customers were fleeing from the dressing room, not knowing what was going on. It was very humiliating to walk out of the store with one shoe, and knowing I had caused a disturbance. (Red face!) However, I found a solution.... I began taking CalMag Plus, which has both calcium and magnesium in a highly bioavailable phytozyme base. I have not had any more cramps since I began using this 2-3 years ago. What a blessing to be rid of this horrible curse! I take 5 tablets per day.

Well, I have an appointment with my internist to ask him what sedation meds I can take for having my dental work done (crown to replace cracked molar filling, etc.), given that I am on a number of meds for sleep www.fms-help.com/what.htm. Specifically, I want to ask him about taking a Halcion (a hypnotic sleep tablet) prior to using nitrous oxide. If I get more radical with this thing, there is also IV sedation available using versed and phentanyl. I have been researching, and some people have a real bad time with these drugs that cause lingering mental symptoms. Wow. Now that's something I sure don't need! Still, with the level of dental anxiety I have, the 24/7 tinnitus (which is made worse by loud sounds like drilling), and my sensitivities to sound, pain and bright light, I am not looking forward to this event. My childhood dentist only used novocaine for extractions, not fillings, so I think that's where I developed the dental fear. I'm hoping my good doc can help me make some decisions about how to manage the dental work with the right drugs.

FROM DOM: I have read that our spouses need comfort, just as we do who have these challenging health situations. They have had to grieve their losses also! For instance, I can't travel more than about 30 miles by car without a brain crash. This keeps us from being able to go anywhere. And that is a severe loss for my husband. I am grateful for his support, but so sorry that he has to visit the grandchildren by himself, unless they come to visit us. My 89 year old mother can run the roads, eat anything she wishes, go to church, social gatherings, etc. No wonder she can't figure out what's wrong with her 59 year old daughter who has to balance her life "just so" or she "crashes." Unless I had this illness (FMS/CFIDS) myself, I'm sure I wouldn't understand people who had it either! See my 100 Tips for Coping with Fibromyalgia & Insomnia at www.fms-help.com/tips.htm. Also, see the FibroWheel, sent in by a male reader to explain his symptoms - it's on the men's page at www.fms-help.com/men.htm - it's a great way to explain your situation to someone (right click on the Fibrowheel image, save to computer, then print.) I am going to print a few copies to keep in my purse for when questions inevitably arrive.

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.