For people with FIBROMYALGIA (FMS) and/or CHRONIC FATIGUE IMMUNE DYSFUNCTION SYNDROME (CFIDS), also known as MYALGIC ENCEPHALOMYELITIS (M.E.)

Below are 11 interesting topics -- be sure to see #2 and #5 - URGENT! - Dominie

"I have Post-Polio Syndrome which is similar to FMS. The constant movement of the car causes fatigue even if we are only the passenger. The memory foam or the other energy absorption foams or just a four or five inch regular foam with the custom cutout of my body prevents the body from having to constantly adjust to the movement of the auto. I have found the foam supply and foam manufacturing outlet stores have the best prices and largest number types to choose from. In the yellow pages it is under "Foam and Rubber Sponge". Thanks for the total blackout sunglasses idea. Someone told me that the blue or gray tones were more restful to look thru than other colors of lenses for her."

"When I was first diagnosed with CFS, I was so much like your reader who gets dizzy just by looking at the cars going by and even now, drivng through a street with the sun shining through the trees make me dizzy. I couldn't drive for eight months and just like your reader, I had to slowly re-learn to do it once I had gotten over the dizziness. Just trying to make my doctor's appointments was major anxiety for me even with my husband driving me because many doctor's clinics require a 24-hour cancellation notice --- and with CFS, one doesn't exactly know how one is going to feel on a given day. I love to travel and now that I'm not working I should be able to travel but I don't because I feel that I might not be well enough when the time comes. I couldn't even make plans for my 25th wedding anniversary because of the same reason. We did go out of town (3 hours drive) but that's the farthest I've been since being diagnosed in 2002 and I almost changed my mind about going. It was just my love for my husband that made me go no matter how I felt. Fresh air and sunlight makes me feel good but I have to protect myself from the wind and the rain. My doctor's new order is to walk outdoors for 5-10 minutes everyday no matter what the weather is. She also wants me to have limited use of the computer. In general, I'm doing alright except for my eyes ---- it's my main problem. Even when my whole body feels good (strong and pain-free), as soon as my eyes get tired, it makes my whole body tired ... and that's really frustrating."

"I have used a Homedic vibrating massage pad for years. Makes traveling on my "Yes, I can do that!" list. It targets 5 areas, and you have the options of 1 to 5 of them, with or without heat, 3 choices of intensity and 2 choices of speed (how fast it changes spots to pulsate). I keep it on constantly. (First pad came with directions against that, but that person must not have had FM!) Newer versions out, like Rakki are WAY too much for me. Toned athlete might think it's great, but.... We live in a smaller city, but within 125 miles of some major cities. Before this pad, we would have to allow time for me to get out at least once, usually twice, just to walk up and down the highway to get the kinks out. Pad is totally relaxing. I can sleep or read. The "overstimulation" happens only when I drive (visual problems with depth perception and peripheral views). I can handle my own smaller city because I know the area and don't have to read signs and change lanes and look out for the other driver and..., and...., and..., you know - all that stuff that bombards you in big city traffic. My wonderful husband/ chauffeur gives me one job - "Look for ________ street," and I'm 'good to go'. I can handle one thing at a time. Hope this helps someone!"

"Felt compelled to respond to one of the points (from a reader) in this issue [Dominie's FMS/CFIDS Newsletter - Oct. 7, 2006]. In #7, he/she is passing on incorrect information about HC or Cortef being benign. Granted HC (generic for Cortef) is "more" bioavailable than Prednisone or Dexamethasone, but there is no "identical" cortisol replacement. HC & Cortef contain more mineralcortaid than the stronger medications mentioned, but neither is identical. Each is SYNTHETIC. As an Addison's patient, I correspond with Addisonians the world over. Very few of us excape the side effects, although we are only taking the least amount of Cortef possible to keep us alive. Those who have not yet suffered adverse effects are either quite young, were recently DXed or have no other endocrine ailments. Personally, I developed osteoporosis after being on Cortef three years. Cataracts are another bugaboo. Gastric complaints plague many. At the risk of sounding contentious, I strongly disagree with anyone (patient or M.D.) who indisciminately takes hormones. Our bodies are beautiful machines with systems that operate in sync. The endocrine system is perhaps the most delicate. It was the last of the nine systems to garner interest in the medical community. In fact, very little was known about the mysterious glands until the 1950s. Today, we know little more than we did 50 years ago. You're likely familiar with complaints among thyroid patients. 'Tho a simple synthetic pill is "supposed" to cure an underactive or overactive gland, there are countless patients who never seem to adjust. Sugar diabetes patients have more success yet suffer from the brutal disease. What I have learned both personally & thru research is the more hormones one ingests, the more problems ensue. Why? Endocrine glands function like a stack of dominoes. Move/Medicate one, & others disalign. Countless FMS/CFS patients suffer hypothyroidism. Tinker with the adrenals, & thyroid meds need adjusting -- & adjusting -- & adjusting. Each of us is individual & entitled to his/her opinion. It strikes me as less than responsible for doctors to make misstatements. Unless we are deplorably deficient in cortisol, it is dangerous to supplement with HC, Cortef or Prednisone. The HPA axis works quite well on its own. To mess with it is playing with fire. I've met 100s of women who were RXed Cortef for adrenal deficiency -- me included. Problem is, few docs actually test cortisol before RXing the drug -- mine included. Many complementary physicians go by symptoms. Sometimes that works out well. In my case, I actually did have a pituitary adenoma & a host of pituitary deficiencies. Since I already was taking Cortef, it skewed the ACTH stim test, the hallmark of DXing Primary or Secondary Addison's. Another point worthy of mentioning is that cortisol drugs mask other illnesses. Should one require surgery or meet with emergency illnesses, merely taking a form of cortisone complicates treatment. Many who began taking Cortef to "bolster" the adrenals found they were unable to taper off as promised by physicians ::sigh:: In most cases of adrenal deficiency (even DXed Addison's), a change in lifestyle is NECESSARY! Although I highly respect the complementary doc who initially RXed Cortef for me, he is unaware that Addison's patients worldwide have been encouraged to cut the erstwhile dose of 30 mg a day. Why? Nasty side effects. After four years, I finally was able to taper to 15 mg a day. Sadly, many of the docs who jumped on the bioidentical bandwagon are the same docs who pushed horse pee [Premarin] down our throats a few short years ago. It's apparent that the submitter of #7 & his/her doctor is misinformed. Per above, HC/Cortef & Prednisone are NOT the same drug. Anyone willing to take Celebrex today needs to do considerably more research!!! In closing, I'd like to say that a hormone is a hormone. A wee bit may help, but the jury is still out. All we fibro patients need is one more drug, eh?"

"I have problems with computers. That's the main reason I couldn't get a regular job --- it's because the main tool is the computer. My former profession was in the field of accounting and finance where one has to be detail-oriented and has to stare at a computer all day long."

4. TRADITIONAL CHINESE MEDICINE

From a reader--

"I am reading your newsletter less than I use to because I am so much better - it only took 15 years! I use to have a terrible time with travel, especially in cars; for months I could not drive at all; then I could only drive in the morning; now I can travel by car but not on more than one consecutive day at a time and not without frequent rest stops. Driving when you are fatigued is worse than driving drunk so beware. Even now, I find driving in my husband's Dodge Ram very difficult because of the noise of the diesel engine. I cannot fly at night; I become depleted very quickly and usually end up with a bad cold. How did I get as well as what I am - a year of treatment by a Doctor of Traditional Chinese Medicine who treated me with weekly acupuncture, herbs, moxibustion; meditation; rest; retirement; sun especially a mid-winter break to a warm sunny climate as we live in an area that tends to be socked in with cloud; continuing mild meds for sleep and pain. I just pray that I don't relapse."

5. ULTRAM / TRAMADOL WARNING - SEVERE WITHDRAWAL!

From a reader--

Here is a warning to your readers who may be taking Ultram/Tramadol. I have been taking tramadol for less than a year, only 2-3 50 mg tabs a day. Some days are worse than others, so I would take 4 on those days. Not a whole lot to worry about. At least that’s what my doctors told me. Until my prescription ran out. I was without it for just 2 days, and I experienced the worst pain I’ve ever had. I had been considering going off all medication and start on a more natural approach because I was afraid I would become dependent on one medication to ease my symptoms of fibro. After just 2 days of pure hell, I couldn’t take the pain anymore, and refilled my prescription. At first I attributed it to the fibro, but something in my heart told me it was more than that. Not only did I experience severe pain, but also tremors, chills even in a warm environment, profuse sweating during my bouts of chills, twitching muscles, a feeling of uneasiness, difficulty sleeping, dizziness, lethargy, irritability, and the body aches were much worse than before taking tramadol. The pain was so bad that I would collapse on the floor after work and sob until the pain became so intense that I had no choice but to stop crying. I also experienced such severe depression that for the first time in my life I considered suicide to be the only solution to the end of my pain. I couldn’t even comprehend ever recovering, and had no hope for it. I was so desperate, and my thoughts were not at all rational. Whenever I talked to people about it, the depression was so overwhelming that I would break down sobbing. I could not imagine living my life that way for the rest of my life, and that’s what I thought I would have to do. As soon as the pharmacy opened on Monday morning I ran over there to fill my prescription, and for the first time I didn’t care what I would have to pay for it, as my medical assistance expired the previous week. Like I said, I was desperate. This happened little over a month ago. The whole time I have been taking the tramadol, I have noticed that when I would delay my dose, I would start to experience these symptoms, but always attributed them to the fibro. And even after experiencing the 2 days of hell, I still did. But it was pain I had never experienced even before taking tramadol. Prior to tramadol I had been on darvocet, and even tho I would take as many as 8 a day, when I discontinued taking them, I never experienced what I went thru when I stopped taking tramadol for those 2 days. My denial still told me it was the fibro.

About 2 weeks ago my good friend, who also has fibro and who also was taking tramadol, checked herself into the hospital for withdrawal symptoms from abruptly stopping tramadol. Her symptoms were very similar to mine, however multiplied by 500%. She has been out of the hospital for a week now, and she is still experiencing severe withdrawal symptoms. Her doctor told her the same thing mine told me, “tramadol is not addictive.” However, everything that both of us have read over the course of this past week, has told us differently. Tramadol is NOT intended for long-term use! Tramadol is a derivative of opium and heroin. It is similar to morphine. It is an opioid. It is addictive—both physically and psychologically. When you either delay doses or discontinue taking it, the withdrawal symptoms are FAR worse than the fibro itself. My friend’s fibro is usually controlled and not severe, but these past 2 weeks have put her in a condition I have never seen her in before. She is in constant unbearable pain and sweats while she’s shivering. While she was in the hospital, her withdrawal was so intense that she compared it to what you would see a heroin addict go thru. For the first time in her life she also considered suicide as the only alternative. It scared me enough to want to stop taking it myself. Because she was told that tramadol is not addictive, she trusted that her physician knew more than she did, and assumed that she would be able to stop taking it without any problems. She warmed me about a week before going into the hospital that she was becoming addicted to it, and that when she would delay her doses she would experience a less-intense form of withdrawal symptoms, and what she described was exactly what I was going thru during my 2 days of hell. She is determined to help me go thru the withdrawal, as I slowly decrease my intake of tramadol, until I no longer have to take it any more. I know both the physical and psychological addiction withdrawal symptoms first-hand. The physical is obvious, but the psychological isn’t. It’s not that I want or crave it, but I am afraid of the symptoms I will experience when I stop taking it. I work full-time and have to in order to support myself and my 7 year old son. If the pain becomes too intense I cannot function at work. I cannot afford to go on social security, nor do I want to. I cannot afford to go on welfare, and do not want to do that either. I know when I stop taking the tramadol I am going to experience at least what those 2 days were like for me when I didn’t take it. But knowing that, I can prepare myself and wean myself slowly, not abruptly like I had intended. I have very little discipline and for me “cold turkey” is the best method of giving up anything. While weaning myself, I am taking liquid supplements that are cleansing my body of all toxicity so I can start with a “clean” slate. I know it will take a while because it took years of “toxic living” to build them up.

I noticed that other people that write to you are taking tramadol already, and I hope my testimony will help someone considering either going on tramadol, or someone who is wanting to stop. The withdrawal is horrible! Don’t stop taking it without first talking with your physician so he/she can recommend a method to wean yourself slowly. Don’t start taking it until you do your research. I wish I had, but like my friend, I trusted mine and assumed they had done the research themselves.

6. FULL SPECTRUM LIGHTING

Winter is approaching. Dr. Mercola is selling full spectrum light bulbs. These can help us avoid S.A.D. and depression during dark winter months. Check out his site or others selling these bulbs.

7. FUNGUS AND LIGHT SENSITIVITY

From a reader--

"i've always had problems with severe light sensitivity and have been forced to wear oversized and very dark sunglasses for quite some time. the rheumatologist, who technically diagnosed me with what i already knew i had, said my symptoms went back to my mid to late 20s. what i have learned since then makes me think it started in my childhood. allergies were the so called cause of my health issues at that time. the more i learn, the more i am convinced fungus is the key to the problem to all of the above, the stem of fms/cfids, and i've had them since childhood."

8. TOXIC MOLD

I have had 3 devastating encounters with toxic mold in my lifetime--the latest being last year in my place of work. A kind reader sent me a book called "MOLD WARRIORS" by Dr. Ritchie Shoemaker. This doctor has treated many people who have had neurotoxin exposure (such as mold) that causes symptoms the medical establishment doesn't know what to do about. He uses cholestyramine and other protocols to help patients.

9. D-RIBOSE (revisited)

From a reader--

"i have used D-Ribose for over a year. it helps greatly with muscle pain. when dr stephen sullivan, a brilliant cardiologist, gave d-ribose to his heart patients, he accidentally discovered that it especially helped his patients who suffered with fibro, chronic fatigue and other forms of arthritis. drs teitlebaum, sullivan, cass ingram, drazin, wilson or wilson's temperature symdrome..dealing with low thyroid and directly connected to fibro and chronic fatigue, patrick quilin and others from a wide field of medical specializations are frequent guests on 'your health' hosted by dr richard becker and his wife cindy. i have been following dr becker, doug kaufmann and their brilliants guests for a year and a half. they have made a huge impact on the quality of my life, and, most of all, given me hope. that is where i learned so much about the need to treat for systemic yeast/fungus and how to do so with naturals. dr becker's book,,'foundations for healing', is great, as is teitelbaum's 'from fatigued to fantastic'."

10. HUGE MESSAGE BOARD FOR FMS/CFIDS PATIENTS

This one is operated by ProHealth--

http://www.immunesupport.com/chat/forums/

The ProHealth story begins back in August 1981, when at the age of 23, Rich Carson woke up one day with severe flu-like symptoms. Rich saw a specialist who ran tests for strep throat and mononucleosis, but the results for both tests were negative. Sometime later, while still feeling extremely ill, Rich spoke with an internist who informed him that he may be suffering from either a chronic cytomegalovirus or a chronic Epstein-Barr virus infection. Pointed in the right direction, Rich telephoned every researcher he could find to investigate his illness, which has since come to be known as Chronic Fatigue Syndrome.

By 1986, Rich was spending two or three hours a day on the telephone with CFS patients and researchers, and started one of the first and largest CFS support groups in the country. Rich’s determination to help CFS patients soon lead to the creation of ProHealth, Inc. Founded in 1988, the company’s mission is to provide a comprehensive resource for people with Chronic Fatigue Syndrome and Fibromyalgia.

An important part of Rich’s treatment plan includes alternative therapies that greatly relieve many of his symptoms. The Health Resource Catalog was published to share with other patients the supplements he found to be most effective. Additionally, Rich realized the Internet is a great way to spread useful, up-to-the-minute information to the many thousands of CFS and FM sufferers worldwide, and so ImmuneSupport.com was created.

11. THANKS FOR THE SUPPORT

[FROM DOMINIE: There was an outpouring of supportive emails this past week in response to the disgruntled reader. It gets discouraging at times when sick people write mean, hateful or accusatory things....maybe they are having a bad fibro day, or perhaps they forget that I too am sick, not invincible or infallible, and have real feelings. No one has to buy anything that will benefit me personally, as there are thousands of outlets for these things the net. My newsletter has been free since 1996. I could keep my research and findings to myself, but feel a moral obligation to share this ever-growing body of information with people who have the same problems I struggle with and who ask to be on my list. I also post a lot of information on my ever-improving site at www.fms-help.com. Below is one of many letters I received that were a comfort and an encouragement last week. Thank you, readers, from the bottom of my heart!]

"Dear Dominie, I have been somewhat distressed by several critical e-mails you have gotten of late and would like to give my opinion. I think readers should realize several things. First and foremost, this is your newsletter. You are a fellow sufferer who has been kind and caring enough to use your experience and information you've gathered and shared it with the rest of us. You do this out of the goodness of your heart. You are merely trying to help other people who have this disease. You are quite clear that you are not a medical expert. You are also quite clear that this is your personal newsletter. Like the rest of us, you feel like heck most days, yet in spite of that, you are still kind enough to do this newsletter. I, for one, am very grateful. I have learned so much from you. This is your newsletter and you have every right to your opinion. If someone out there does not like your opinion or doesn't find what you write helpful, they should unsubscribe from the newsletter. If they receive an occasional piece of information that is not helpful to them, then there is this amazing key on the keyboard called the delete button. All they have to do is delete the particular e-mail. I do not think they have any right to criticize you or complain. If you represented an organization, then sure, speak up, but you don't. I personally purchased some of the essential oils because the advice came from you and I know you don't push products on people. You merely share with others what does and doesn't work for you. If anyone else had recommended those oils, I would never have bought them, but I knew you could be trusted. Thank god I did listen to you as the oils have been wonderful. You don't claim the oils will cure CFIDS, but if they will help a particular symptom, hooray! Why shouldn't we do all we can to feel better? I can feel your enthusiasm and excitement and that was what got me to try them and, like you, I find myself wanting to shout from the rooftops how much they have helped. I am sorry you have gotten some critical e-mails of late. You do not deserve them. I hope others will think twice before writing these kinds of notes and remember that you do this to help others."

Dominie here again....I have been feeling much better this past week! I attribute this to wearing dark wrap around sunglasses while driving or riding in the car (my husband's suggestion), plus continuing with many excellent protocols that I discovered over many years - see www.fms-help.com/what.htm. We are all different, but these are things that work for me.

My fibromyalgia story is at www.fms-help.com/fibro.htm. My chronic fatigue story is at www.fms-help.com/fatigue.htm.

I also have 100 tips for coping with fibromyalgia and insomnia at www.fms-help.com/tips.htm.

For a list of things I tried for sleep and how they worked (or didn't work) for me, see www.fms-help.com/sleep.htm. My insomnia story is at www.fms-help.com/insomnia.htm.

In personal news, my students' music recital (piano, guitar and voice) is this Saturday, October 14. I have 27 students performing in this program as part of our new School of Music. Looking forward to it!

If you would like to be on my new oils mailing list and receive fascinating info (and good news for a change), write me at dombush@bellsouth.net.

Also, there are TONS of great articles on my homepage at www.fms-help.com. I know you will find a lot of help, understanding and encouragement there! I address issues like bad doctors, men with fibro, brain problems, dealing with skeptics, etc. Check it out!

Til next time,

Dominie Soo Bush

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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.