DOM'S NEWSLETTER
21 TOPICS below. Don't miss the RED ones! Readers comments in BLACK. My comments in TEAL.
1. READERS WRITE
"It was such a joy finding and reading through your website www.fms-help.com. I thought I knew enough about FMS until I started reading the 100 tips to cope with FMS www.fms-help.com/tips.htm."
"I love these newsletters www.fms-help.com/newsletters.htm. They are soooo helpful."
"I have used many of your suggestion and love, love your website www.fms-help.com. Thanks so much!"
"I found the information on your website very amazing and informative. I have been suffering with fibromyalgia for over 10 + years now."
2. LYME DISEASE EPIDEMIC
From a reader--
"I DON'T WANT TO SCARE ANYONE, BUT LYME DISEASE IS ON THE RISE WITH NO SURE-FIRE CURE. IT HAS CONSUMED MY ENTIRE LIFE SINCE JUNE OF LAST YEAR. THIS ARTICLE FROM AOL NEWS IS AN EASY READ--
http://www.aolnews.com/opinion/article/opinion-lyme-disease-is-a-terrifying-health-epidemic-thats-going-largely-unnoticed/19494569?icid=main|htmlws-main-n|dl3|link4|http://www.aolnews.com/opinion/article/opinion-lyme-disease-is-a-terrifying-health-epidemic-thats-going-largely-unnoticed/19494569 - Snippet: "...almost overnight, I became an exhausted, headache-ridden, nightmare-plagued, memory-challenged zombie suffering from vertigo, sleeping problems, swollen glands, achy eyes, sensitivity to light and noise, fever, chills and a sore neck."
FROM DOM: Lyme and FMS/CFIDS have many overlapping symptoms. Some believe the two are related. My CFIDS story is at www.fms-help.com/fatigue.htm. I have written much about Lyme in past newsletters. Search at www.fms-help.com/newsletters.htm.
3. FIBROMYALGIA OR RSD?
http://www.rsdhope.org/Showpage.asp?PAGE_ID=162&PGCT_ID=4300 - Snippet: "Can the two diseases be confused? Can you have the two diseases at the same time? Yes and yes. As you can read by the descriptions below there are similarities in the symptoms but the causes are much different. There are also other differences such as; while Fibromyalgia can be quite painful there still exists no other chronic pain syndrome that touches RSD/CRPS in its intensity; Fibromyalgia can come and go into remission for weeks or months at a time while it is much more rare for that to happen for RSD/CRPS. There are others but you get the idea. They are still often confused in a diagnosis by some Doctors as many see so little of either. The other problem that occurs is that many RSD/CRPS patients develop Fibromyalgia and end up with both to some degree. There is even a theory being put forth that as the Fibro intensifies, the RSD lessens."
4. CITRUS PECTIN CHELATES HEAVY METALS
From a reader--
http://www.advancedbionutritionals.com/Special-Offers/201006/PectaSol-Chelation-Complex-ABS860.htm
FROM DOM: If anyone has tried this, please write dombush@bellsouth.net. I would especially be interested to know if it has helped with mold contamination - I still have neurological symptoms from working in a hurricane-damaged building in 2004-2005 www.fms-help.com/mold.htm. Also, my mouth is paved with mercury, but I am a dental phobic (my childhood dentist didn't use novocaine for drilling and filling), so I shudder to contemplate having all my fillings removed. Also, I hear from many readers who had their amalgams removed, but few experienced major health improvements. If you want to share your story about amalgam (mercury filling) removal, write dombush@bellsouth.net.
5. SECONAL FOR SLEEP
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000664 - Snippet: "Secobarbital is used on a short-term basis to treat insomnia (difficulty falling asleep or staying asleep). It is also used to relieve anxiety before surgery. Secobarbital is in a class of medications called barbiturates. It works by slowing activity in the brain."
FROM DOM: Please write dombush@bellsouth.net if you have used Seconal for insomnia.
6. MIGRAINES & HYPOGLYCEMIA
From a reader--
"Many people have headaches and don't put '2 and 2 together.' Make sure for hypoglyemia:
1) Have at least 3 meals per day (some
people do better with 5 smaller meals)
2) ALWAYS have protein with meals.
Protein is meat, cheese, eggs, nuts, seeds, tofu, nut butters etc Protein blunts
the glycemic index of the carbs so you will not have the roller coaster 'up and
crash"
3) Limit sweets, sugars, fruit juices etc. Especially alone with
out protein these foods can cause "reactive hypoglycemia" where your body
produces too much insulin which then clears the sugar out of the blood and you
are left with a low sugar
4) By consistently following the above, your
insulin levels should go down, and also your weight (if you need to lose weight-
some don't.)
The above suggestions can also help with PCOS which can go along with this as well. (I have an M.S. in Nutrition and licensed.)"
7. PAIN SPRAY
From Marilyn bobmar3@sympatico.ca--
"I have found a spray that helps pain and inflammation called Arthri-Plus. Just shake and spray and allow to dry. Usually the second spray does it.....helps my back pain as well as my burning feet. I also spray for legs before bed if paining. Arthri-Plus has helped me cut down on pain meds which are hard on our stomachs. I use this spray everyday and it has eliminated my taking Tylenol and Ibuprofen together, which is what I had used to help pain. So much better for your stomach and kidneys as well. It is herbs...menthol, eucalyptus oil, and clove oil. You just shake the 150 ml bottle, spray on desired area and let dry a couple minutes. It is approved by Health Canada. It has changed my life. I have a bottle upstairs, one downstairs, one at cottage and one in my purse. Just a quick spray takes the pain away so always want it with me. Sure beats taking so many meds that are hard on all your organs and works fast. " Write Marilyn bobmar3@sympatico.ca for more info.
FROM DOM: See more pain suggestions at www.fms-help.com/what.htm - scroll down the page. Look for RED writing.
8. RSDS DISABILITY CLAIMS
From a reader--
http://www.24-7pressrelease.com/press-release/ruling-for-reflex-sympathetic-dystrophy-syndrome-claims-157760.php - (Reflex Sympathetic Dystrophy Syndrome causes widespread burning, debilitating pain)
FROM DOM: Read symptoms of RSD at http://arthritis.about.com/od/rsd/a/rsd.htm.
9. TUINAL FOR SLEEP
http://prescription-drug-abuse.com/sleeping-pills/tuinal-barbiturate-sleeping-pills/ - Snippet: "Tuinal contains two active ingredients – amobarbital sodium and secobarbital sodium. Both of these drugs belong to a group of medicines known as barbiturates. Such medications are known to cause drowsiness and are often used to induce sleep in those with insomnia issues. When Tuinal is used to treat insomnia, it is generally only prescribed to people who are already taking barbiturate medications as health care professionals tend to avoid prescribing Tuinal to new patients. This process is in place simply due to the high potential for dependence and addiction Tuinal presents to patients."
FROM DOM: Please write dombush@bellsouth.net if you have used Tuinal for insomnia and would like to share how it worked or didn't work for you. A list of everything I've tried for sleep is at www.fms-help.com/sleep.htm. A list of what I use now and get decent sleep most nights is at www.fms-help.com/what.htm. My insomnia story is at www.fms-help.com/insomnia.htm. My sleep disorder began when I was 16.
10. NEURONTIN FOR CFIDS
http://www.cfids.org/archives/1999/1999-2-article04.asp - Snippet: "Dr. Jay Seastrunk of Texas, who has been using the anticonvulsant drug Neurontin for several years to treat people with CFIDS and multiple chemical sensitivity (MCS), says CFIDS and MCS patients usually demonstrate a brain dysfunction, typically in the left frontal lobe--a focal brain injury. The cause of the injury could be many things, from a childhood head injury, a period of oxygen deprivation at birth, whiplash in an automobile accident, a high fever or toxic exposures. An infection with an organism such as mycoplasma, chlamydia, Lyme or even a simple flu of further chemical exposure could trigger further brain injury. Dr. Seastrunk explains the Neurontin helps treat the brain injury and helps "detoxify" the brain by modulating the action of various brain chemicals."
FROM DOM: If you would like to comment on neurontin, please write dombush@bellsouth.net. Also, search for neurontin comments in past newsletters at www.fms-help.com/newsletters.htm.
11. READERS' PRAYER CORNER
Steve - has fibromyalgia/chronic fatigue and acute, chronic drug resistant insomnia. NOTHING (yet) puts him to sleep.
Dom - update on my elderly mom - out of the hospital and continuing antibiotic treatment for diverticulitis - having difficult side effects.
12. LYRICA
From a reader--
"I have been taking Lyrica for about 2 months and it is not helping with the pain."
FROM DOM: For more Lyrica comments in past newsletters, search at www.fms-help.com/newsletters.htm.
13. SHINGLES QUESTION
FROM DOM: This past week I had a mild case of shingles. The doc prescribed 800 mg of Acyclovir 5 times a day. Thankfully this shingles episode is nothing like the horrible first episode last year, which felt like an unrelenting blow torch on my left neck, shoulder and back. Horrible pain. My doc has suggested that maybe I should get the shingles vaccine, but also cautioned me that it might have an adverse effect. He said I might want to consult an infectious disease specialist, but they would probably tell me to go ahead and take it, because they usually throw caution to the wind, since only a small percentage of people end up paralyzed with Guillian Barre Syndrome, etc. However, I am often in the 1% of patients who get adverse reactions from things like surgery, anethesia and drugs. Therefore, I plan to do a LOT more research on the shingles vaccine before considering it. The doctor also told me it was very expensive, and I am a self-pay patient with only hospitalization insurance (but thankfully haven't been in the hospital for 24 years.)
A question when I got shingles for the first time last year was: How was this even possible since I never had chicken pox? However, I just found this info at: http://shingles.emedtv.com/shingles/shingles.html: "Shingles is caused by a reinfection with the same virus that causes chickenpox. The condition is characterized by several symptoms, including a rash and pain, and is most common in people over the age of 50. People who have had chickenpox or the chickenpox vaccine are also at risk for developing shingles. While there is no cure, several antiviral drugs can help reduce the length and severity of the illness....This disease is also more common in people with weakened immune systems from HIV infection, chemotherapy or radiation treatment, transplant operations, and stress."
I also found this: Who should not get the shingles vaccine: http://skindisease.suite101.com/article.cfm/is_shingles_vaccine_effective - "According to the CDC, the vaccine is restricted for use in the following categories of people: Those allergic to gelatin, neomycin or any other component of the vaccine. Those with immune deficiency disease like HIV/AIDS Individuals who are on immune suppressing medications like steroids or anticancer drugs. Patients suffering from cancers of bone marrow or lymphatic system like leukemia or lymphomas Untreated tuberculosis cases Is pregnant, or is likely to become pregnant within 3 months CDC does not recommend shingles vaccination for those below 60 years of age."
With all the vaccinations I had as a child, I am almost positive the chicken pox vaccine was one of them. Regarding childhood illnesses, my brother had chicken pox, but I never did but had measles twice. If you have had the shingles vaccine and would like to share your experience, please write dombush@bellsouth.net.
14. HIV
http://en.wikipedia.org/wiki/HIV - Human immunodeficiency virus (HIV)
www.fms-help.com/aids.htm - Is CFIDS related to AIDS?
15. SUBNORMAL BODY TEMPERATURE
http://www.squidoo.com/wilsonssyndrome - Snippet: "Does This Sound Like You? --
16. "RSD IN ME"
From a reader--
"My friend Barby Ingle from Arizona who heads up The Power Of Pain Foundation locally (powerofpain.org) recently went through successful Ketamine Coma in Philadelphia for full body Reflex sympathetic dystrophy (RSD) or also known as RPS (Regional Pain Syndrome). After being dx with fibromyalgia in 2007, I endeavored to research everything about not only fibro but all chronic, persistent pain conditions and autoimmune pain conditions. I have bonded with many who live with intractable pain. Seems like we share many overlapping symptoms. We can comfort each other and educate each other. I recently attended an RSD support group and they wanted to know all they could about fibromyalgia while I wanted to know more about RSD. That was a LONG meetingJ. But, we became partners in pain and support. Barby Ingle just published her book “RSD in Me” and it can be found on Amazon. Perhaps it may help some of your readers also. I know her proceeds go back into research and speaking engagements. Thanks for addressing additional chronic pain syndromes in your newsletters."
17. PAIN MEDS FOR BREAKTHROUGH PAIN
http://www.webmd.com/pain-management/features/pain-relief-breakthrough-pain?ecd=wnl_fib_062910
18. TUMORS
From a friend--
"My mom had a PET scan around Christmas that showed three tumors. She chose to approach things naturally, instead of doing chemo. She started taking a mushroom complex from Jarrow, some added vitamins C, E and caroteen complex; and, twice a day, she did a capsule with 5 drops each of frankincense, myrrh and wild orange oils. Just last week, she had another PET scan. It showed that two of the tumors are completely gone and the third is all but gone. We're truly thankful for this great blessing."
FROM DOM: Wow. That's really interesting. Guess there's more than one way to handle ones health problems. I've had really good results with essential oils www.fms-help.com/oilsstore.htm and various supplements for dealing with my health challenges. My complete list (including meds) is at www.fms-help.com/what.htm - based on 28 years "experience" as a fibromite!
19. WHAT IF...
"I wonder what would happen if we treated our Bible like we treat our cell phones?
What if we carried it around in our purses or pockets?
What if we turned back to go get it if we forgot it?
What if we flipped through it several times a day?
What if we used it to receive messages from the text?
What if we treated it like we couldn’t live without it?
What if we gave it to kids as gifts?
What if we used it as we traveled?
What if we used it in case of an emergency?
What if we upgraded it to get the latest version?
This is something to make you go…hmmm…where is my Bible?
Oh, and one more thing. Unlike our cell phone, we don’t ever have to worry about our bible being disconnected, because Jesus already paid the bill!"
20. DOM'S UPDATE
It's a good thing I took a picture of our neighbor's century plant (see previous newsletter). We had a big storm yesterday with high winds and rain and the poor plant got beat up, twisted, broke in two and collapsed! Sure is sad to see it that way! I think it was still supposed to flower some more.
I've been feeling okay for a fibromite. Had a slight flare-up of shingles last week, though. Went to the doc right away and got on the usual (800 mg. of Acyclovir 5 times a day for 7 days). Fortunately, this antiviral stopped the shingles from progressing. Whew! Have been busy with music teaching and playing for my church. Thankful to God for all of my blessings. A list of helpful things I use is at www.fms-help.com/what.htm.
Til next time,
Dominie
Fibromite since 1982: www.fms-help.com/fibro.htm
www.fms-help.com - check out the many fascinating articles about FMS/CFIDS on my homepage!
P.S. I try to read all of my email, but can't answer personally much of the time. However, I would love to see more pictures of my readers! If you have a picture you can send to dombush@bellsouth.net, I promise it will never be published! I would just like to put a face with a name. Many of you have been with me for over 10 years now - maybe longer! (I began writing the newsletter in 1996. Archives from 2003 forward at www.fms-help.com/newsletters.htm.) I appreciate all of my loyal readers!
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.
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.
