DOM'S FMS/CFIDS NEWSLETTER
My husband is a bug man who enjoys photographing God's little creatures. I liked the beautiful begonias in this picture....the lizard not so much, although they are entertaining to watch. There are zillions of them here in Florida.
AUGUST 24, 2013
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Helpful Things Marriage Church Work Youtube Testimony Proofreading
http://www.cortjohnson.org/blog/2013/08/17/three-months-three-surgeries-no-relapse-a-personal-guide-to-surviving-surgery-with-chronic-fatigue-syndrome-mecfs/ - Snippet: "Luck or Due Diligence? We all know people with ME/CFS and/or FM who have had to have various types of surgeries and have ended up bedridden for weeks or months after surgery and sometimes suffered other horrendous events such as strokes or heart problems as a result of the surgeries themselves. Some have even ended up in nursing homes to recover. Some people with chronic fatigue syndrome suffer severe relapses from surgery but Pat didn’t – not even after three of them in three months. I have had three major surgeries in a little over three months and, while the healing has been slow because of low blood pressure and low blood flow to the incision area, I have not experienced any relapse inME/CFS or FM symptoms. It may very well be that I’m just one of the lucky ones, but I have a gut feeling that it’s the result of being extremely diligent about educating the surgical team and anesthesiologists before going into any of the surgeries. I am passing this information along in the hope that it will be of use to anyone who might be facing surgery in the future. My Personal Survive Surgery with Chronic Fatigue Syndrome (ME/CFS) Protocol. Read more: Three Months – Three Surgeries…No Relapse: A Personal Guide to Surviving Surgery with Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia http://www.cortjohnson.org/blog/2013/08/17/three-months-three-surgeries-no-relapse-a-personal-guide-to-surviving-surgery-with-chronic-fatigue-syndrome-mecfs/ Provide a letter from the doctor who treats you for ME/CFS and/or FM explaining that he/she treats you for this condition and is communicating specific concerns to your surgical team and anesthesiologists regarding your low blood volume state and the need for saline hydration. Saline – and lots of it – probably played a key role in Pat’s ability to tolerate her surgeries. In my particular case, the letter included the following wording: “She has a chronic low blood volume state, the severity is well predicted by her baseline pulse. She will be more hemodynamically stable with at least one liter of normal saline on board pre-op, and the line continued for 24 hours post-op to allow additional fluids, continuing fluids at 100 to 150 cc/hour to allow an additional 2 liters post-op. She should then push po fluids with electrolytes for 3-4 days to improve her recovery rate. She has a problem with detoxification pathways, which means she may have a longer anesthesia effect, drugs detoxified by cytochrome p 450 pathways may linger."
FROM DOM: Also see Topic 22 below about surgery.
2. FORGOTTEN HEAD INJURIES MAY BE THE CAUSE OF MENTAL / EMOTIONAL PROBLEMS
FROM DOM: I am thinking about what happened at age 14 when my brother and I were diving from a diving board into an inner tube head first with our hands behind our back! My 12 year old brother was very athletic and a great swimmer. Me, not so much. I was unable to make the turn once through the inner tube and into the water. I smashed my forehead on the bottom of the pool and became disoriented - couldn't tell up from down due to the violent blow. I had a HUGE (entire forehead) swelling for days. I remember that distinctly because the next day was the first day of school in our new city, which was 3,000 miles from where we had come from. The climate was completely different, I had no friends, missed my old friends, and it was just tough. I was a junior (long story as to why at that young age). I guess in those days, parents didn't take their kids to the doctor much. I wish now I had had an x-ray after that accident. Not long after this is when my insomnia and depression began - then at age 30, full-blown fibro www.fms-help.com/fibro.htm. Chiropractors who have x-rayed my neck say I have severe whiplash and basically a "soldier's neck" with no curve and a lot of pinched places. A few car accidents as an adult (fortunately none caused by me) probably finished me off.
3. INDIAN SUPERBUG COULD UNLEASH NEW DRUG-RESISTANT EPIDEMIC
http://articles.mercola.com/sites/articles/archive/2013/08/17/superbugs-antibiotic-overuse.aspx - Snippet: "Antibiotic overuse is rampant all over the world, including in India where antibiotics are available for low cost and without a prescription. There, it’s estimated that more than half of bacterial infections in Indian hospitals are resistant to commonly used antibiotics, and many are also resistant to the more powerful, broad-spectrum antibiotics. A growing number of infections, however, now carry a gene called "New Delhi metallo-beta-lactamase 1," or NDM-1 that confers ‘super resistance’ to conventional antibiotics. Resistant to carbapenems, powerful “last-resort” intravenous antibiotics as well as at least 14 other antibiotics, NDM-1 is virtually unstoppable… and it’s not staying in India, either. Already, NDM-1 bacteria have been found in drinking water around New Delhi and in patients in over 35 countries, many of them ‘medical tourists’ who traveled to India for medical care then returned home to Europe, the Middle East and the Americas. As explained in Rise of the Superbugs, it takes just one or two such ‘bugs’ to transfer horizontally the genetic material that can turn other bacteria in your body into superbugs. It's very similar to what happens when you accidentally include a red shirt in the wash with your whites."
4. "BLOOM WHERE PLANTED"
FROM DOM: In thinking about my inability to travel since working in a water-damaged building in 2005 (mold and bacterial spores caused neurological problems - www.fms-help.com/mold.htm), I was reminded the other day of an old and true saying, "BLOOM WHERE PLANTED!" Wow! That's an encouragement to all of us who live with limitations from day to day.
5. GULF WAR ILLNESS (GWI) AND CHRONIC FATIGUE SYNDROME (CFS)
FROM DOM: Check out the chart comparing the symptoms of Gulf War Illness vs. Chronic Fatigue Syndrome. It's about halfway down the page. I know a young man (now middle-aged) who returned from the Gulf War to a wife who met him at the airport, told him she found someone else and handed over their two small children. He was still under the effects of the stress of the war, then the shock and grief of losing his wife, couples with instant single parenthood. He and his kids had to live in a barn while he tried to make ends meet. He was also very sick with GWI/CFS. His dentist gave him the immune powder to try, and he got well. So well, in fact, that he was able to go back to work and even told me a couple years later that he and his kids went to an amusement park and he rode and upside down roller coaster with them! Yikes! I was so happy for him, because he had been through so much stress and turmoil. He is remarried - have met his wife and she's a peach. They are doing well and they now have another child. I was thrilled when he wrote to tell me that both of his children from his previous marriage were baptized. He even sent a picture of that event. If you want info on the immune powder that his dentist recommended, write firstname.lastname@example.org.
6. SWEET BABY GIRL SINGS HER HEART OUT WITH ELVIS
7. 9 HOUSEHOLD ITEMS THAT COULD BE SPYING ON YOU
From a reader--
FROM DOM: In certain areas of our rural county, there is no internet or cell phone access. I noticed that people who live in these areas, although feeling deprived of current technology, are still SANE and HAPPY, whereas the rest of us are mired in technical problems and information overload. Technology used correctly - and if it doesn't overtake our humanity - is good. The new smartphones will talk to you...a boon for the lonely, but instead of finding a real person to talk to, we are talking to a bunch of wires. I heard on the radio about a stuffed animal that talks and coos and was making its rounds ina nursing home, where patients were telling this darling little creature their deepest hurts, such as losing a child. It made the appropriate soothing noises that a human would and was huggable. The lady who was making the rounds with this furry robot was lamenting that we have been brought down to talking to robots and not real people. Now, I will admit that from time to time in my adult life, I have slept with a favorite stuffed animal during times of stress - even talked to it, and it was a comfort. But I hope we don't regularly put inanimate objects in the place of people. I hope we are not losing our ability to communicate person to person. I saw a funny Cathy comic strip about when she went on a date with a man she met on the internet. As they sat across the table from eachother struggling to make conversation, the waitress came by and asked what they wanted to order. Cathy said, "Two laptops." So true!
8. PEOPLE DON'T CARE TO BE INFORMED ABOUT FMS/CFIDS
From a reader--
"These are ALL wonderful articles on your homepage at www.fms-help.com about our devastating condition. But what if you have family that is not even INTERESTED in hearing or reading about your condition and just tunes you out?? I am sure many of us are faced with this awful dilemma."
FROM DOM: Sadly, too often this is the situation. That's why I have kept my newsletter going for the past 17 years...to provide the kind of support that I never got FMS/CFIDS. (Thank God for the internet!!! Prior to 1996 it was a VERY lonely battle for me - read my interview at www.fms-help.com/interview.htm about how it was when I was first diagnosed with fibro in 1982.)
9. WHAT DO YOU SEE IN THE MIRROR?
From a reader--
FROM DOM: A wake-up call!
10. DRUG MUGGERS CAUSE PALPITATIONS & LEG CRAMPS
FROM DOM: Check out the part about acid reflux meds and magnesium deficiency.
11. DRAINED BY FMS/CFIDS
From a reader--
"I’m having a tough time this summer with energy shortages, but I’m more at peace with myself, so I’m celebrating that. I guess everything drains me, even work on a part-time basis."
FROM DOM: For a list of occupations of my readers, see www.fms-help.com/occupations.htm.
12. THE UNHEALTHIEST OF "HEALTH FOODS"
http://articles.mercola.com/sites/articles/archive/2013/08/19/unhealthy-health-foods.aspx - Snippet: "Many of the foods commonly considered to be “health foods” are not good for your health. Eleven of the most common unhealthy “health foods” are discussed—including fruit juices, whole grains, agave nectar, vegetable oil and sports drinks. Real health foods are fresh whole foods, grown sustainably and preferably locally with the laws of nature in mind, free from pesticides, fertilizers, growth hormones, antibiotics, preservatives and other chemicals."
13. MAN SUFFERING FROM SEVERE INSOMNIA
From a reader--
"Thank you for telling your story www.fms-help.com/insomnia.htm. I too suffer from the maddening, painful, lonely condition of insomnia. Watching my family deeply sleeping in the middle of the night is sooo painful. Have you tried a hypothalamus glandular extract? I skipped the hypothalamus & went w/ kava powder & dhea. They both have helped a lot. I'd like to encourage you to ask your doctor to do a dhea-s blood test. If its low & I can almost assure it is, try 25mg/day for a few days along with 2 Tablespoons of Wakacon Kava mixed in 20oz of whole milk (any really fatty liquid). This stuff is amazing for relaxation. It's non-narcotic so you can't become chemically dependent. There's no hangover, just deep relaxation that just might help you. I hope it does because dhea AND kava have this past week certainly improved my sleep significantly."
FROM DOM: I've had to rely on meds for decades in order to sleep. They are merciful after suffering from decades of little and poor sleep which left me in a tortured state day and night. A list of things I use is at www.fms-help.com/what.htm. Various essential oils www.fms-help.com/oilsstore.htm can also affect the limbic portion of the brain. RutaVala has been the only essential oil that has influenced my sleep in a positive way. Others have helped with anxiety, stress or relaxation. I used DHEA and Kava in past years. The DHEA was for my wacked out hormones and the Kava helped anxiety. I remember a 72 year old man who called me many years ago who had not slept since he was 18. He told me his insomnia started in boot camp. He said, "If you think boot camp is rough, try it without sleep!" (I shudder to consider.) He was near tears when he called because he told me that the immune powder (that I found in 2001) helped him sleep for the first time. He told me how everyone in his senior condo complex was talking about the terrible storm they had the night before, and he realized he had slept through it! He was near tears with joy and amazement. (My theory is that the stress of boot camp and possibly even the vaccinations he was given, did something to destroy the "sleep function" of his brain.)
14. HONEY MAY WORK AS WELL AS COUGH SYRUP
http://articles.healthrealizations.com/FoodsForFibromyalgia/2013/08/19/Honey-Works-as-Good-as-Cough-Syrup-1.aspx - read about what type of honey to use.
15. FACE THE LIGHT
FROM DOM: Our pastor had surgery last week, so an elderly pastor in our congregation preached Sunday morning. One thing he said that stayed with me was that when we face the Light (Jesus), shadows fall behind us. But when we turn away from the Light, we are facing the shadows and things look dark. His wife died 2 years ago and he misses her every day. Yet he is always joyful and trying to help others. I know he knows about shadows. A wonderful devotional book I read every day is "Streams in the Desert, Vol. 1" by Mrs. Charles Cowman. It is a wonderful collection of spiritually consoling readings for anyone who is suffering. The book was given to me many years ago by a retired missionary to Japan. My copy is marked and underlined on every page. This classic book has brought me vast amounts of comfort and encouragement even on the darkest of days.
16. CARCINOGENIC CHEMICALS IN ALL MUNICIPAL WATER SUPPLIES
http://articles.mercola.com/sites/articles/archive/2013/08/21/tap-water-carcinogens.aspx - Snippet: "Environmental Working Group (EWG) just released a report finding “probable human carcinogens” in every single municipal water sample tested, from 43 different states across the United States. Chlorine and other water treatment chemicals react with ordinary organic particles in the water to create hundreds of extremely toxic byproducts (disinfection byproducts, or DBPs), which aren’t regulated at all. Some DBPs are 1,000 times more toxic than chlorine and include trihalomethanes, VOCs, and haloacetic acids; trihalomethanes are linked with bladder cancer, miscarriages and stillbirths, among others. Some of the most dangerous DBPs come from water treated with the disinfectant chloramine; nitrosamines, for example, are 1,0000 times more toxic than chlorine. EPA regulates only nine of the more than 600 DBPs generated by chlorine and chloramine water treatment; farming is a major source of organic pollution in drinking water and a major contributor to DBP formation."
FROM DOM: Could this explain the explosion of cancer in our society from infants to the elderly??
17. WHAT NOT TO SAY TO A CHRONICALLY ILL PERSON
FROM DOM: Excellent! I'm so glad someone made this video!
Responses from readers--
"Wow! This is classic – ALL the horrible unhelpful things said to me over the years… IN ONE VIDEO. And, even though I’m a diagnosed Celiac and not a Fibro patient anymore – this is STILL what I hear from ignorant, unwitting people. Really? What does it take for our society to wise up and treat invisible illness patients with the same respect given to addicts and criminals?"
"LOVE that! What? Going to the bathroom AGAIN????? funny......though all true."
18. DEFINITION OF CANCER TO BE REDEFINED
http://articles.mercola.com/sites/articles/archive/2013/08/20/cancer-redefinition.aspx - Snippet: "The National Cancer Institute has suggested narrowing the definition of 'cancer,' as mounting research shows that many harmless tumors are being overtreated, thereby causing more harm than good. About one-third of women currently diagnosed with breast cancer have harmless tumors that pose no threat to their life. Only ONE out of 2,000 women screened regularly for 10 years will benefit from screening due to early detection of breast cancer while 10 healthy women will be misdiagnosed and treated unnecessarily. Research into the health of our ancient ancestors suggests that cancer is a manmade disease—a byproduct of a variety of harmful environmental- and lifestyle factors. Preventing breast cancer is far more important and powerful than simply trying to detect it after it has already formed. My top tips on how to help prevent breast cancer are included."
19. TODDLER PIONEERS SURGERY FOR PFEIFFER SYNDROME
From a reader (the grandparents of this little fellow go to her church)--
20. USE IT!
FROM DOM: Article below used by permission of the Joni and Friends International Disability Center www.joniandfriends.org/jonis-corner/. Joni became a quadraplegic at age 17 when she dove into a lake and broke her neck. I love her books and writings! You can sign up for Joni's daily devotionals on her site. A male newsletter reader told me about this a few years ago, and I have benefited greatly from his suggestion. Now for one of Joni's devotionals that I got this week--
"Therefore, as we have opportunity, let us do good to all people, especially to those who belong to the family of believers." - Galatians 6:10
Tyler Law, age 9, strode in front of the gurney that was to take him to surgery for his cancerous arm. "Can I walk?" he had asked the orderly who came to get him. "Sure, kid," the orderly had said, as he fell in line behind the brave patient and joined the parents. The three of them watched as Tyler marched ten paces in front of them. He was raising his bad arm in the air and pumping his biceps in and out.
When they arrived at the prep room his dad asked, "So what was that arm pumping thing about?" "Oh," Tyler answered. "I just wanted to get as much use out of it as I could in case they have to cut it off."
Tyler lived on the brink of losing his arm and took every opportunity to use it for that which it was intended - movement. Muscles tightening, tendons flexing, joints moving, neurons firing. Not a second of enjoying that arm was going to be lost while Tyler still had the chance.
Tyler's words also reveal more than his bravery. They strike a chord of truth about our lives: Use it. Now. I fear that, in our modern Christian world where we are quick to "avoid burnout," we have not used our lives as they were intended. Paul admonishes us to take advantage of the opportunities afforded us to do good. Our lives have so much potential for doing good. We take for granted our time, our talents, our energy, and assume that it must be saved for some great purpose later on. God's purpose for us is not later, it is now.
The opportunities to use our lives for that which they are intended - loving God - are now. Find those opportunities today. Pursue them to the end, bravely, knowing that it might be the last day afforded for such work.
Lord, I'm taking inventory of my life. What do I have that I'm not using? Where can it be applied, today?
Joni and Friends
21. INTRANASAL DELIVERY DEVICES
From a reader--
"I thought this article (link below) might someday be a possible cure for Fibro, as well as dementia. This looks like the beginning of a whole new area of medicine. The brain is the 'final frontier.' I find your website www.fms-help.com so fascinating." http://news.yahoo.com/sniffing-strategies-fight-against-alzheimer-disease-113000757.html - Snippet: "Sniffing Out New Strategies in the Fight Against Alzheimer's Disease - The newest chemical under investigation for managing Alzheimer’s disease (AD) is actually not new at all. Insulin, the therapeutic hormone all-too familiar to individuals with diabetes, has been around for decades. In fact December will mark 90 years since its discoverers earned the Nobel Prize in Physiology or Medicine for the extraction of insulin for clinical use. Yet to say that insulin has been under our noses all these years wouldn’t exactly be correct. Because if it had been under our noses, we might have sensed its neurologic benefits sooner. The latest insulin therapy is not delivered via injection like its diabetes-treating counterparts, nor does it come in the form of a pill or a patch like the cholinesterase inhibitors often prescribed to patients with AD. Instead this novel therapeutic enters the body through the nose—the only entry point that gives insulin a chance of reaching the brain....'It had been known since the early 1900s that a number of different viruses that got into the nose would travel up the olfactory nerves and the trigeminal nerves—both of these are nerves that go directly from the nasal mucosa right into the brain. The idea that came to me in this dream in 1989 was: if bad things can do it, why can't good things do it?'"
22. FIBROMITE AVOIDS SURGERY
From a reader--
"Hi Dom, I'm a candidate for knee replacement surgery but I won't be having it for two reasons:
1. I did not wake up from anaesthesia after my last two surgeries. I believe my fibro condition makes me more sensitive to those drugs -- I was overdosed both times. I was very lucky to be rescued the first time (almost 12 hours after I was sedated in the morning), but when I told the anaesthetist for the second surgery about that previous experience, he just pooh-poohed me, and then the same thing happened. For that surgery, I had arranged for my daughter to pick me up, and when she came late in the day and found me unconscious, she called my surgeon. It still took him a couple of hours to get there, and I was still unconscious -- 10 hours after surgery.
2. When I recently asked my orthopedist about his success rate with fibro sufferers and knee replacement, he said they were all successful. Well, Mayo Clinic did a survey that found that fibro sufferers only have a 50% success rate for knee replacement as compared with the general population that has an 85% success rate. (By success, I mean that replaced knee joints are not painful after healing.) Looks like a certain orthopedist was either lying or stupid.
I have insurance, I could have it done but the risk is too high because of my fibro."
FROM DOM: Wow. I hear this reader's concerns loud and clear! I've had HORRIBLE reactions to anesthesia every single time it's been used for both major and "minor" surgery...anytime I'm knocked out. They OD'ed me once and I was thrashing around uncontrollably in the recovery room when I came to. I heard a nurse say, "They gave her too much." They injected me with something to counteract the anesthesia. I also become violently ill (nausea and vomiting) for days after surgery. I mentioned it to an anesthesiologist and he assured me that things had improved since the last time I had surgery and said I wouldn't have any of these problems. Guess what?! The same thing happened - violent vomiting for days - torture when you're cut across the abdomen. So I avoid surgery at all costs. The next time I might not make it through. I really appreciate this reader sharing her thoughts on knee replacement surgery. We fibromites are different from the rest of the population. WE NEED TO STAY INFORMED, SHARE OUR INFO, AND BE OUR OWN ADVOCATE AND RESEARCHER. We are definitely high risk. (See Topic 1 in this newsleter about low blood volume and why we should ask for IV fluids prior to surgery.) If you want to share your experiences (positive or negative) about having surgery when you have FMS/CFIDS, please write email@example.com. And if anyone knows the name of a general anesthesia that won't cause severe nausea, I would be most grateful for that information. My husband doesn't want me to have a bad molar cut out (requiring general anesthesia) because he says I won't recover. I'm holding off on this procedure as long as possible, because I don't heal well. It takes me about 10 times longer than the average person if my skin is cut open for it to knit back together. Anyone know why? Also, I can't afford to miss so much time at work.
23. CHILD TRAINING BIBLE
FROM DOM: This looks cool!
24. HOW TO UNDERSTAND SOMEONE WITH CHRONIC PAIN
From a reader--
25. COLLEGE STUDENT WITH FIBRO
From a reader--
"I am only 20 years old and I've been looking for relief of my fibromyalgia pain for quite some time. I was so happy when I found what you have written and experienced because for the first time I felt like I had someone who knew the pain I was experiencing and that I wasn't crazy like everyone else said I was. I can't function in my my college classroom and it's a struggle to even get out of bed. Thank you for your story www.fms-help.com/fibro.htm."
FROM DOM: I hear from many teens and young adults with fibro. My heart goes out to them. Life is just beginning, but they are so out of sync with their healthy peers. I also hear from parents of children with FMS/CFIDS. See my page about children and teens at www.fms-help.com/teens.htm. Check out my 100 Tips for Coping with Fibromyalgia at www.fms-help.com/tips.htm. A list of everything I have found helpful is at www.fms-help.com/what.htm.
26. MIGRAINES LINKED TO ABNORMAL BLOOD VESSEL STRUCTURE IN THE BRAIN
http://articles.mercola.com/sites/articles/archive/2013/08/22/migraine-causes.aspx - Snippet: "Migraine is one of the most common health conditions in the world—more prevalent than diabetes, epilepsy and asthma combined. An estimated 13 percent of the world’s population suffer with migraines. An observational study recently found that people who get migraines have a different blood vessel structure in their brains compared to those who do not get migraines, causing greater asymmetry in hemispheric cerebral blood flow. Environmental factors appear to play a significant role in triggering a migraine attack. This includes certain foods and drinks, hormonal changes, stress, external stimuli like scents or lights, dehydration and changes in sleep cycle. Both aspartame and MSG are notorious for causing headaches and triggering migraines. Aspartame can also trigger other neurological symptom such as visual disturbances and tingling in the extremities. Preventing migraines begins by avoiding the triggers. Most often this means eating healthy whole foods (avoiding most processed ones) and managing your stress effectively. Following my eating plan seems to reduce migraines by about 80 percent."
FROM DOM: This was interesting to me in light of the recent finding that fibromites have abnormal blood vessels in their hands (use search box at end of this newsletter), and many fibromites also suffer from migraines.
27. HELP FOR MOSQUITO BITES
FROM DOM: Basically, this testimonial gives a way to relieve the itch of mosquito bites: soak a cotton pad with witch hazel and put a few drops of lavender oil and melaleuca oil on it and then swipe the bites. You can also find ways to avoid bug bites in the first place at www.oil-testmonials.com/905788. To read a list of essential oils (plant extracts) that I use and for what purposes, visit www.fms-help.com/oilsstore.htm.
28. EXTREME ENDURANCE EXERCISE DAMAGES THE HEART
http://fitness.mercola.com/sites/fitness/archive/2013/08/23/extreme-endurance-exercise.aspx - Snippet: "Several recent scientific studies indicate that endurance exercises, such as marathon and triathlon training, pose significant risks to your heart, some of which may be irreversible and life threatening. Long-distance running can lead to acute volume overload, inflammation, thickening and stiffening of the heart muscle and arteries, coronary artery calcification, arrhythmias and sudden cardiac arrest. A safer and more effective exercise is high intensity interval training (HIIT), which consists of short bursts of intense exertion; HIIT maximizes the benefits for your heart, and optimizes your HGH and insulin levels. Keep your intense workouts to less than 45 minutes, and if you run, keep your distance under 20 miles per week spread over two to three days, at five miles per hour or less, to minimize risks and maximize benefits. Allowing your body to fully recover between workouts is critical, including eating an appropriate post-workout meal that gives your body the nutrients it needs to recover and rebuild."
FROM DOM: Not that any of us have to worry about extreme endurance exercise (getting through the day is enough for us), but some of us may have friends or loves ones involved in this. I have a very close personal friend who our family has known for 40 years. He was an endurance athlete most of his life and collapsed 5 years ago from total heart failure while roller blading. He was actually dead for a short time. He was unconscious for a week and packed in cold in intensive care to reduce inflammation in his heart, and then had several heart procedures. So, you CAN hurt your heart by too much exercise. And for people with CFIDS, even a little exercise can be too much because of low blood volume and cardiac issues involved in CFIDS. That's why "graded exercise therapy" can kill a CFIDS patient. Have talked about that in other newsletters. (Use search box at the end of this page.)
29. DOES NEURONTIN (GABAPENTIN) HELP FIBROMYALGIA PAIN?
From a reader--
"I've just had a light go on. Since 2005 when I crushed the nerves in my left foot, all FMS symptoms have seemed to disappeared except in unusual situations. In 2005 when I crushed the nerves in my foot, the Dr. prescribed me Gabepentin 600mg (2 caps) 4 times a day. Since I've read that there are theories that Gabepentin does help FMS. I'm wondering if anyone else has been on this high of a dose of Gabepentin for relief."
FROM DOM: Very interesting. I've been 95% pain free from fibromyalgia since 1996 - see my story at www.fms-help.com/fibro.htm. However, I do suffer other effects of the illness, such as insomnia and neurological problems. Getting back to gabapentin, I take 300 mg at night along with two other meds to sleep. A list of everything I use or have found helpful is at www.fms-help.com/what.htm. This is a good list if you are looking for something you may have missed in your search for relief of symptoms. If you have comments about neurontin (gabapentin) for fibromyalgia, write firstname.lastname@example.org.
I had an amazingly good day yesterday! I woke up feeling "normal" and tackled a project I've been wanting to do for 11 years! I painted a wall in our dining room and applied a border. The whole project cost just 53 cents.....yes, that's right! The paint was free from a local hardware store that was running a promotional, and I found the border in a pile of junk at a thrift store for 50 cents plus 3 cents tax. (You have to be resourceful when there is no money for extras. Decades of health problems have created financial havoc, so my thanks to all who help to support this newsletter!) The project came out BEAUTIFULLY, and I was soooo delighted! It has been many years since I've been able to do something like this. If I felt this good every day, I would be human dynamo!!! (Only residual the next day was sore leg muscles from all those deep knee bends...ha!)
'Til next time,
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DOMINIE'S FIBROMYALGIA & CHRONIC FATIGUE SYNDROME HOMEPAGE
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.