DOM'S FMS/CFIDS NEWSLETTER

This is the most important newsletter I've written in 13 years. DON'T MISS THE RED TOPICS!

June 5, 2009

A Christian-based newsletter for people with Fibromyalgia (FMS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS), or Myalgic Encephalomyelitis (M.E.) and their families.

32 TOPICS IN BLUE OR RED. READERS' COMMENTS IN BLACK. MY COMMENTS IN TEAL.

Dom's Quick Links: Fibro Story CFIDS Story Insomnia Story Newsletter Archives Med List Homepage Previous Newsletter

"I am so thankful for your website - wow - it is me to a tee. Your website has been a great help to me as I am at wit's end."

2. DR. STAUD'S RESEARCH ON FIBROMYALGIA

"Although Pfizer indeed messed up with their ad, I do believe that we are taking it wrong. I think that Pfizer was saying that the woman (with fibro) is NOT a lie down person. We seem to be assuming the opposite about their commercial.

I recently went to a lecture by Dr. Staud, who is studying fibromyalgia through the University of Florida's Musculoskeletal Research Center. He lectured about the brain changes that occur with fibromyalgia. This lecture, at the McKnight Brain Institute of the U of Florida, was a fantastic, detailed and interesting lecture open to fibromyalgia sufferers by invitation.

I was appalled at how many people were in the lecture room (it seated about a hundred and it was packed). I was appalled at how many suffering people this represented! Questions were allowed and the feedback was impressive.

Dr. Staud and doctors like him are being funded by Pfizer to study fibromyalgia and its causes/solutions. During this lecture the doctor mentioned the life-stopping nature of fibro, how it took type A personalities and destroyed their lives.

The testimonials flowed after the lecture during the q & a period. It was interesting to me how many kinds of disorders were coupled with fibro.

So far, Dr. Staud believes (and has proof through his and other studies) that fibromyalgia is a neurological disorder brought on by trauma of any type (virus, accident, PTSD, etc). The kind of trauma is irrelevant. He did admit some people spontaneously develop it. The nature of this neurological disorder, according to Staud, is an increase of activity in the pain processing centers of the brain that are responsible for reducing acute pain. This increase of activity leads to exhaustion of those areas and then those areas shrink. The pain processing centers responsible for reducing pain then do not function and widespread pain is the result.

Dr. Staud demonstrated this through his studies and used his study subjects as examples. It was a very interesting lecture indeed. I was one of the study subjects, although Iw as not one of the examples. My son also was a study subject. Dr. Staud has a particular interest in my son's fibro since fibro in men is less common or less frequently reported. My son is Dr. Staud's only male study subject. It breaks my heart that my son has fibro. He is 19 and has had this awful disorder since a biking accident when he was 12. He has a lifetime of suffering ahead of him unless competent physicians such as Staud find a way to stop it.

By the way, Staud handed out Pfizer's brochures on fibro, and had everyone sign an attendance sheet who had entered the room. He indicated that he was in the process of trying to make fibro more well-known so that more people would study it. He asked everyone's cooperation in publicizing the fact that fibro is real indeed.

Because of this experience, I realized that Pfizer has a strong interest in helping people with fibromyalgia (or an interest in the money they will make from it!). This poorly understood disease might find a cure yet, even though the drug company's motives are monetary for sure. Now that a pharmaceutical giant has taken an interest, fibromites might have a fighting chance!"

From a reader--

"I am undergoing tests for sleep apnea and felt the need to write as I read your struggle with sleep insomnia www.fms-help.com/insomnia.htm. I read that sleep apnea can actually cause this debilitating condition because your body?s natural defence is to steer away from sleeping. Because during the night when the body sleeps, it is constantly woken by breathing difficulties. Some people can actually stop breathing up to 100 times an hour and not even know it. I had the experience of actually waking during REM sleep, my undiagnosed apnea stopped my breathing and woke me during REM (the dreaming state). During this sate your body is paralyzed. This protects you from acting out your dreams, imagine that? So I was accidently woken, It happens with conditions such as severe sleep apnea and also narcoclepsy. I woke up completely paralyzed, only able to move my eyes. I was very frightened. It only lasted for 60 sec or so, but even then I can tell you it was awful. I was screaming inside my head to get my husband to help me, but could not speak or move. Then My body felt like it fired up again and I was back to normal, well fibro normal for me anyway hahaha. During the days I am so sleepy and ?drop? out all the time, especially in relaxing situations like the car, a couch etc... But during the evening I am too suffering from insomnia now. The time I had the sleep seizure I hadn?t gone to bed until 3 am. When sleep apnea continues on and on undiagnosed the body naturally tries to protect itself from dying, when you stop breathing there is a high risk of heart failure etc... So hence insomnia develops. The body just can?t go on without sleep. I just wanted you to know, check it out! I share a very special connection with you, I too am a piano teacher. But unfortunately I have had to give up a lot since my fibro developed 3 years ago. My brain is a mess, I can?t remember simple things. Even my typing skills have slowed right down recently, I used to be a really fast typer, fast piano player too. Please let me know if you have considered the possibility of apnea for yourself? Had a test done for it?"

And then this update:

"Sleep apnea fell through as for causing any of my fibro symptoms. I am always hoping and wanting an answer, because unfortunately no one in my circle except for my few internet fibro buddies understands my condition. I am 34 and should be in the prime of my life, but due to steroids, 60 kilos extra weight, PAIN which makes it difficult to maintain any decent exercise routine. Dr has put me on methotrexate and Arava, two immunosuppressant drugs. I am also trying Guifenesin? Pretty much a guinea pig at the moment, but that's just how desperate of a woman I am."

FROM DOM: Fascinating info. I never had a sleep study done despite 40 years of a sleep disorder www.fms-help.com/insomnia.htm. Too bad it wasn't suggested by a doctor back when I had better insurance coverage. I only have hospitalization now, and can't afford any tests or labwork. I am managed with meds and supplements www.fms-help.com/what.htm, but now wonder if I have sleep apnea. I used to know someone who would get paralyzed in the middle of the night, just like this reader described.

4. FIBRO LACK OF AWARENESS

From a reader--

"People don't understand this disease that hasn't had it or lived with someone who is ill. I decided that I have to continue doing what I do and forget the naysayers. They are NOT walking in our shoes and it is a waste of our precious energy to try and convince others. You have been wonderful in your advocacy and education. Keep fighting the good fight and maybe one day, someone in Hollywood, etc. will come forth and help us. I think only then will there be total acceptance of this horrible disease."

FROM DOM: Check out the Million Letter Campaign we tried in 2005 www.fms-help.com/letter.htm and the meager results at www.fms-help.com/update.htm.

5. MORE FIBRO MISUNDERSTANDING

From a reader--

"Thank you for your heartfelt emails. I'm almost in tears because it brings back painful memories of my family, friends and co-workers/bosses and even doctors who never believed at a young age back in the late 80's and early 90's of chronic fatigue and FMS I've suffered from.

The most painful piercing example of my own mother walling me off was when we went on vacation together. Her boyfriend, herself and I all met in Vancouver, BC, Canada. After touring half-way through out the day - I began to get violently ill from chronic fatigue and FMS pains shooting up in my joints, spine and feet. Right in the middle of crossing a street I told my mother, "I have to go take a nap now. I will meet you two later." My mother was shocked and disappointed. She insisted to know why I was abandoning them. I said "I don't feel good." She looked at me in disbelief, "What? You were fine all day and now suddenly you can't wait few more hours?" I glared at her and shot back, "I have FMS, Mom, remember?" She asked me, "What's FMS?"

Right then and there I wanted to cry. I stared at her hard and sadly... seven long years of constantly writing her long letters describing my pains and chronic illnesses and still she could not remember what FMS stood for? I refused to answer as I was so hurt of years of effort of explaining until blue in the face hoping to get some compassion went down the drain.

I stormed off and went back to the hotel so upset that I could not even relax to take a desperately needed nap. I got sicker realizing how my entire family scoffed at me and constantly insist I was lazy and such a slacker and always looking for pity and whatever they conjured. It's okay for 'older' people to experience arthritis but for young people, we're supposed to be robust and full of energy - not always the case! They forget, too, that I've been born THREE months premature and I deal with life long chronic low immune illnesses.

It does not help that I keep all my sufferings to myself - to close friends I will complain every so often, constantly describing what I'm experiencing and I often see eyes staring back at me as if to say "Oh, when are you ever going to stop complaining?" I learned to withdraw with intense spinal muscle back contractions (just like pregnant woman experiences, but instead of just few hours or 10 hours - my fits would last for 7 days). Muscle spasms interrupted my life where that I'd be on the floor, moaning and crying all alone without any witnesses - nor would I want any. I must suffer alone, I must go through hell and back by myself. No one is reliable and no one has a cure...this is what I must put up with for the rest of my life.

Friends and peers blamed me for being anti-social and being such a cop-out as it appeared I was being snobby or aloof. Not the case at all. One friend got mad that I could go to a different's friend party one week but last week I couldn't dare get out of my house. FMS is deceiving for the unaware.

With all these memories flooding my mind as I laid in the hotel room in a foreign country with a broken heart. My mother barges into my room and blurts out, "Fibromyaglia, is that what FMS stands for?"
I grimly nodded and sighed. She then complained that her boyfriend was tired too and also wanted to nap. She was exasperated of how boring we were, somehow slowing her down. Invisible walls divided us to this day.

STILL I share my experiences with my family abroad - even if they still don't understand - by not saying anything enables them to assume I am suddenly 'fine'. I continue to subtly educate them and this way they can never tell me, "You never told me this before!" This is why I have to live 3,000 miles away because if I live near them - they will force me to do physical laborious work non-stop and criticize me for not doing enough.

I have to live alone in order to pace my physical body so that it can keep up with daily demands from this hectic rat race.

You would not believe that my mother now somewhat believes my having FMS because many of her female customers at her beauty salon are sharing the same symptoms I've suffered for many years. She even referred some to me to get advice! It had to take strangers or other people to make her believe I was not lying all these years.

Now that I have Hashimoto's Thyroiditis Disease, I have more health issues to take care of. I no longer need to feel embarrassed, nor ashamed of my conditions... if others misunderstands or ignorant folks harasses me, I know now to release them out of my life.

Setting careful boundaries is crucial for our mental and emotional health - and we are responsible (ability to be able to respond) for maintaining our sacred body that we are given and it's up to us to decide what actions we are to take to care of it.

Stand strong. Think firm. Be inwardly gentle and forever patient and you will succeed. With our fibro-friends, together we can guide each other in where we need to go for a healthier path."

6. FIBRO AWARENESS LETTER

A fibro support group leader sent me her Fibro Awareness Day letter that she sent out. She said it got a good response! Here is her letter--

"Some of you know and some of you don't--I have fibromyalgia. I became very sick in 2003, but wasn't diagnosed until 2006. I've been following a plan that works well for me and is reversing my fibro (see bottom of email).

Today is Fibromyalgia Awareness Day and I wanted to share some information about fibro. There are many people out there who don't know about it. I didn't know about it until after I was sick.

Thank you for giving me your time! Feel free to pass this along to anyone who

may be interested. ~Andrea

Fibromyalgia Awareness Day: A Quick Q&A about Fibro

What is fibromyalgia? (fibro-my-al-ja)

A chronic condition or disease that affects brain and body. PAIN and FATIGUE are the most common symptoms.

How many people are affected?

About 10 million Americans suffer from fibromyalgia (FM or FMS). It's often called an "invisible" illness or disability because symptoms may seem unrelated, and medical tests are usually normal.

What are the symptoms? In short: pain and fatigue.

Symptoms and the severity of them vary depending on the person. Symptoms can also include (but are not limited to) non-restful sleep, insomnia, muscle cramps and/or stiffness, irritable eyes, nervousness, dizziness, IBS symptoms, anxiety, headaches, rashes, acne, low-grade fever, dizziness, nasal congestion, excessive sweating, and high sensitivity to light, temperature, sounds, smells, and touch.

Fibromyalgia also affects the brain. Fibromyalgics (of ALL ages) usually have trouble concentrating or remembering. Sometimes this is referred to as "brain fog" or "fibro fog".

What is the root cause of fibro and how does it start?

The root cause is still under debate. Most docs agree it relates to the body not producing enough energy. Fibromyalgia is thought to be genetic and that you do have it all of your life---even though some people don?t experience an onset of it until later in life. (Onsets later in life often occur after an accident or illness).

Many of us, looking back to when we were younger, can pinpoint symptoms we?ve had all our lives. However, at the time we experienced those symptoms, they didn?t seem serious.

How do people cope?

Fibromyalgics need to learn to MANAGE their disease. (This is not easy!) Often this is done with a combination of drugs, getting adequate rest or sleep, exercise (usually gentle i.e. walking, yoga, stretching), physical therapy, acupuncture, alternative treatments, and diet (numerous fibromyalgics are sensitive to excess sugars and carbs).

Support groups can help individuals cope with fibro and learning how others deal with it.

REDUCING STRESS is very important---as even just a little stress can exacerbate symptoms greatly.

How do I get diagnosed?

Unfortunately getting diagnosed with fibro is difficult. There is not a test that shows if you have fibro. Most often many tests are completed to rule out any other cause of symptoms. Usually these tests come back normal and docs sometimes tell us ?nothing? is wrong with us when we know there is something wrong.

Some docs are not well-informed about fibro or how to treat it. Sometimes fibromyalgia patients are not taken seriously because our symptoms seem unconnected. Fortunatley, information about fibro is getting out there. There are great docs who are willing to listen to patients.

I've seen Lyrica on TV-- Won't that and other drugs fix it?

Lyrica and other drugs can help a person deal with fibro--they can't fix it. These drugs don't treat the root cause of fibro. Lyrica ads talk about lessening of muscle pain (not getting rid of it!) Some of these types of drugs can cause side effects that are just as bad as fibromyalgia itself! Some of these drugs will help a person, but it varies greatly by individual.

Is it possible to REVERSE fibromyalgia? YES! The Guaifenesin Protocol!
I'm living proof. Dr. St. Amand has a theory that fibro is caused by a body not being able to get rid of extra phosphates like a normal person can. To follow the protocol you take Mucinex (drug name: guaifenesin) and need to avoid salicylates (plant extracts in beauty products, aspirin & mint). It takes some work, but is 100% worth it.

At my worst I was practically bedridden, in constant intense pain. Just getting up, showering and getting ready sapped all my energy. However, today I can work full time (teaching kids, mind you), travel, help lead a support group and more. Last summer I started working as an usher at an outdoor concert arena?which includes standing for 6 + hours. Told my boss I loved my job because every night is a HUGE personal accomplishment for me. My next goal: Run 1 mile---and how many times did I complain about having to do that in high school??

Aren't there other protocols out there?

YES--there are many. I've read about quite a few. Some people say they work for them. I don't doubt that. Some do sound drastic though (taking a lot of hormones for example.) The drug in Mucinex (guaifenesin) has no documented side effects. The guaifenesin (guai) protocol works for me...and I've been in touch with numerous people (in person) and through an online support group that have had success with guai. The doctor who developed this also uses it to treat his fibromyalgia!! I've got something that works and I'm sticking to it!

"Life without hope is no life at all." - Sri Chinmoy

Helpful Resources

Information about the Guaifenesin Protocol

www.fibromyalgiatreatment.com

What Your Doctor May Not Tell You About Fibromyalgia

By Dr. Paul R. St. Amand & Claudia Marek

Information about Fibromyalgia

www.fmaware.org

Life Disrupted: Getting Real About Chronic Illness in your Twenties and Thirties - By Laurie Edwards"

7. FIBRO, SLEEP & MENOPAUSE

From a reader--

"I have had fibromyalgia for 15 or so years now, and treated the sleep disturbances quite well with melatonin and 5-HTP. But now am 47 and have just entered menopause, and nothing seems to help me sleep. It is terribly frustrating and I worry about losing my job."

FROM DOM: Wow. That sounds just like what happened to me. I am now 57. I made a list of everything I've tried for sleep at www.fms-help.com/sleep.htm. My insomnia story is at www.fms-help.com/insomnia.htm. I do get restorative sleep most nights now with sleep meds and an immune powder - see www.fms-help.com/what.htm.

8. ANTIBIOTICS & KEFIR

From a reader--

"One thing I would highly recommend if people do long term antibiotic therapy for anything is Kefir. It is a probiotic drink and you can either make it yourself www.bodyecologydiet.com (made with either milk or coconut water) or can purchase Helios or Lifeway brands (dairy or soy). This has both beneficial yeast and beneficial bacteria, and therefore it keeps good stuff growing in your gut because the antibiotics don't kill the yeast. I have had such good results with this in myself, family members and patients."

FROM DOM: I learned the hard way that you need to replenish good bacteria after a round of antibiotics. In 1987, I was prescribed 6 different powerful antibiotics for a resistant lung infection, which led to bronchitis and pleurisy (very painful). It was from this time forward that my FMS also became CFIDS - www.fms-help.com/fatigue.htm. I think the antibiotics wrecked my immune system, which is why I have to take the immune powder daily as well as use other measures to prevent immune breakdown.

9. CHEMICAL SENSITIVITY

From a reader--

"I used to feel depressed and as if there was something wrong with me. I was the one who couldn't be around perfumes or scented items, who had to have a more controlled sleep environment etc. Then I started reading alternative stuff and realized that these chemicals, poisons, "fake foods," hormones in the environment are eventually going to destroy everyone. WE who have fibro/CFIDS are just more sensitive than others. I realized that by keeping chemicals out of our home, I am saving not only myself but my husband and my child. Because of me, my child is not exposed to chemicals in her bathwater, her body, her hair and her foods and gets natural vitamins and probiotics. She is healthier than other kids because of this. So I encourage others with this dz, to think of it this way. If others in your family are willing to adapt, then they will be saved because of you. You are not IN THE WAY. They are having to go to extra trouble for you, but in the end it will be for their own good too!!! (Just one example: studies show kids in environments with more "chemical type cleaners etc" have more respiratory problems, asthma and more diarrhea). Rather than want to put us down, they should look at what happened to us and why... so they can save themselves too. Sadly, they won't, but this change in view drastically helped my self esteem. Hopefully it will help others."

FROM DOM: I can't have scented candles around my house. Have had severe allergic reactions in the past - for example, eyes that itched so bad I could have almost torn them out! Agonizing.... This happened a few years ago with a candle that was a Christmas gift from one of my dear little piano students. So I avoid candles and synthetic fragrances. However, therapeutic grade essential oils are just wonderful! See www.fms-help.com/oils.htm - these fragrances help just about every ailment you can imagine - visit www.oil-testimonials.com/6861 - click SEARCH and then type your problem in the search box to see how people are using essential oils to help. I love these!

10. LOW DOSE NALTREXONE (LDN)

From a reader--

Could this beat cancer and autoimmune diseases?

FROM DOM: LDN has been a topic in several past newsletters. Search at www.fms-help.com/newsletters.htm.

11. CFS & FMS PODCAST WITH DR. JACOB TEITELBAUM

From a reader--

"Fibromyalgia and chronic fatigue syndrome are both elusive and debilitating conditions. They are difficult to diagnose and even trickier to treat. Many physicians chalk them up to psychosomatic problems and don?t have much to offer patients. The CDC counts these as real disorders: fibromyalgia affects up to 5 million Americans, and chronic fatigue syndrome affects between 1 and 4 million at any given time. Although these problems seem mysterious, they are treatable. Guest: Jacob Teitelbaum, M.D., is Medical Director of the Fibromyalgia and Fatigue Centers (www.fibroandfatigue.com) nationally. His Web site is www.vitality101.com. He is also the co-creator of the iPhone application, Natural Cures."
http://www.peoplespharmacy.com/archives/free_podcast/724_chronic_fatigue_and_fibromyalgia.php

12. SUNSHINE IN A BOTTLE

http://products.mercola.com/vitamin-d-spray/?source=nl - Vitamin D3 - why we need it and how to get it from sunshine or supplementation.

From a reader--

14. TRUE NATURE OF M.E. (CFS)

From a reader--

http://www.prohealth.com/library/showarticle.cfm?libid=14579 - Dr. Kenny De Meirleir Announces He has Revealed the True Nature of ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) in London Press Conference titled ?ME: End of an Era of Medical Negation." This doctor from the Netherlands refutes some of the medically held opinions of his colleagues, which include statements like these--

Some quotes from members of the ?Commission CFS? of the Medical Research Council of the Netherlands:

Dr. E Borst-Eilers ? President:

"ME patients can be cured with ?graded exercise?.?

Prof. Dr. Jos van der Meer ? member:

?I contradict the existence of a physical cause of Chronic Fatigue (Syndrome)."

Prof. Dr. Gijs Bleijenberg ? member:

?Patients suffering from CFS often feel they do not have any control over their symptoms and that there must be something physically wrong with them.?

Prof. Dr JJ Heijnen ? member:

"I see no difference between ME/CFS and Burnout."

Fascinating slides of this enlightening presentation by Dr. Kenny de Meirleir at the London Press Conference can be found at: http://bit.ly/15fr3o - this will be of interest to many patients and scientists.

FROM DOM: From now on, skeptics be gone!

15. URINE TEST KIT DEVELOPED FOR M.E. (CFS)

From a reader--

Great site for M.E./CFS sufferers in the UK--

17. NO QUICK CURE FOR LYME DISEASE

From a reader--

"I have copied and pasted someone's comments from your latest newsletter www.fms-help.com/052309.htm below. How sadly misinformed this person is. Her statements contribute to the general public's misunderstanding of chronic illness. I will copy a quote from her statements and comment. What she has said is the equivalent of someone on a Lyme (it is NOT Lymes, it is Lyme Disease) forum stating that FMS is CURABLE with a simple treatment. Would that offend anyone here? Would anyone feel this statement was false and contributing to misinformation given about FMS??

Here's what was said: "I have no doubt that in a decade they will determine that fibro is a chronic infection (probably mycoplasma) and have a quick cure just like they do for Lymes now."

My comment: This is an outrageously misinformed person! There is NO CURE for Lyme disease. And there certainly is NO "quick cure" as this person has stated. If a doctor actually tests for Lyme in the very beginning, antibiotic treatment MIGHT help. There is no proof or even evidence that Lyme will not come back to disrupt one's life after this early treatment. It could be weeks, months or even years later and, like FMS, can be triggered by a stressful event, other illness, surgery, or injury. For many patients, this early treatment does not do the job and symptoms are battled for a very long time if not forever. It is not the norm for Lyme to be caught in the very beginning. When it isn't, it almost inevitably becomes chronic and is a lifelong battle of debilitating symptoms. When it is caught early, many doctors do not treat long enough to get the job done. They are sadly misinformed and many are afraid of losing their licenses for treating a Lyme disease patient with long term antibiotics. Funny how it's ok to treat an adolescent with long term antibiotics for acne, yet not for this deadly debilitating disease.Testing for Lyme disease is unreliable and there is NO way to tell if it has ever been completely eradicated from one's body.

THERE IS NO CURE. This really boils my blood. This person wants people to understand about FMS, as we all do, yet she makes blatantly false statements about a chronic disease that has no cure. One in which those suffering are fighting to get the general public, as well as the medical field, to understand and treat appropriately. Clearly this person has done zero research on the subject. Nothing wrong with that if you aren't spreading falsities about a very serious, potentially fatal disease. There are many of us who have both Lyme, and FMS, and some like me who have CFIDS as well. I believe CFIDS, for me, was caused by HHV-6, Mycoplasma and Chlamydia Pneumoniae. I also believe that it was Lyme disease that played havoc on my immune system making it impossible for me to fight off these infections when I acquired them, as the tick bite preceded all of my symptoms."

FROM DOM: I'm sure no offense was intended. Thanks for this additional info on Lyme. See my page about mycoplasma infection at www.fms-help.com/mycoplasma.htm.

18. ADDERALL & FIBRO FOG

From a reader--

"I took one of my husband's Adderall (for his ADD) one morning because I was having trouble concentrating and we were trying to discuss a business decision. I had come home from work each day for years and layed on the couch and rested -- the same each weekend. Many times during the day at work, I would go into an emply office and lay down on the floor. The firmness of the floor and stretching seemed to feel good, but only when I was doing it. I was often near tears. I felt most of the time like I had the flu -- achey with malaise. It was horrible. I am a recovering alcoholic - 25 years sober- and am treated for chronic depression. I took Prozac, then Prozac and Effexor. When Cymbalta came out, my psychiatrist put me on that. I am high functioning in a demanding job that I've had for 15 year and have always been employed. But it had taken everything I had to continue working for several years. At any rate, an hour after taking the Adderall xr (not sure it was 20 or 30 milligrams) my pain and malaise were gone. I am not exaggerating. I was amazed. I have taken Adderall XR for about 5 years now (20 mgs twice a day). I quit several times early on because of the side effects, but always started taking it again because I felt so bad without it. What I discovered is that like antidepressants, the side effects lessen and disappear over time. I don't have the side effects anymore except for an increased heart rate for a little while about 2 hours after I take each dose. But nothing major. Recently, I was running low on Adderall and it has to be mail ordered, so I had cut my dosage down to once a day. I got so sick -- sicker than ever before. My feet hurt to walk on, my hands, shoulders, neck -- throbbed. It even hurt to brush my hair. I corrected my dosage and was feeling almost normal within two hours. I don't know what it all means, and maybe it doesn't work for everyone, but it eliminated my pain almost immediately. I believe I read that it increases the blood flow to the frontal cortex(?). Maybe that has something to do with it. I was lucky because I had a previous diagnosis of ADD and because of that, my doctor was willing to prescribe it for me. It was kind of a fluke that I took the Adderall but I feel like it has saved my life -- at least a life worth living."

FROM DOM: Wow! This really intrigued me. Have reported on Adderall in previous newsletters www.fms-help.com/newsletters.htm, but this first-hand "testimonial" is quite amazing. I wonder if the 2 things I use for fibro fog help because they carry oxygen to my brain (I refer to the OPC I found and the essential oil). Hmmm.....always learning new things about FMS!

RESPONSES FROM READERS ABOUT USING ADDERALL FOR FIBROMYALGIA--

"I just read your email on how much adderal helped and I had to
send you an email. I recently changed Doctors and she brought up the
idea of taking a stimulant to help my Fibro. I was willing to try
anything because I work a significant amount and the fatigue and pain
were very bad. I stared with Adderal, but got really bad headaches
towards the end of the day so she switched me to Vyvanse and I have
been taking it since. I am doing very well on it and am able to do so
much more and have a much higher energy level. If I forget to take
it, I am miserable. I can't get my thoughts straight, exhausted, pain
all over. I think there is something to this, but know that now all
doctors agree and it is controversial."

"On Adderall - while I have not been diagnosed with Fibro I very well could have.   I believe many times the
diagnosis of Fibromyalgia is made when they do not fully understand what is going on.
Until they find out the underlying etiology many different remedies can
be tried.   They treat the symptoms and not the underlying cause.
Adderall gives a boost to dopamine and probably other neurotransmitters
in the brain. This will increase energy, focus and probably will help
other areas of the body which rely on the effects of proper dopamine
levels in the brain.   It is likely the the brains of some people have
altered pain perceptions in which pain signals get amplified. Adderall
at least for the patient that wrote the letter probably altered this.

I was exposed to so called Toxic mold which cascaded into a domino effect.

I had tried adderall which greatly increased mood and focus. It was a band aid though.

The underlying cause in my case was found to be a spirochete infection along with co-infections.

If what caused the neurotransmitter dysfunction was a hit and run then
manipulation of neurotransmitters via adderall, zoloft etc maybe the
best choice. However if the cause is a chronic attack of the central
nervous system then it must be addressed. I fear that many people are
being given band aids while the underlying disease is left unchecked.

Any person with seemingly acquired mood swings and cognitive changes
(including chronic pain without an obvious source) should be worked up
for an infectious cause.

Causes:

1. Biotoxin illness - Cause from low grade exposure to maybe 10 of the
50,000 types of molds found on the planet. Urine and antibody tests can confirm
2. Lyme - need Western blot tests
3. mycoplasma bacteria
4. Many others.

Most physicians do not put these causes into the differential
diagnosis. Many are sent to psychiatrists.

In my case I had chronic lyme which was mostly held in check for years
by my immune system.   When I would get a cold it would be a super cold
knocking me out for a week vs a few days.   When I encountered
Stachybotris mold from a flooded basement it made us all sick I was the
only one that did not recover.   The biotoxins wiped out my already
taxed immune system.   This allowed the lyme and other co infections
(Cytomegalo and epstein barr) to run out of control.
These were never addressed, only the systems were treated.   Chest
infection was treated as adult onset asthma, weight gain was thought to
be from deconditioning, massive pulmonary emboli (almost killed me) was
never explained, only treated with coumadin.   Neurological issues were
thought to be adult onset ADD or even bipolar. Extreme blood pressure
rise was simply treated.

Of course they were all incorrect.

1. Asthma - caused from mold exposure and infection. It was actually
pneumonia which also has asthma like symptoms.
2. Weight gain - mostly from lyme along with biotoxins. Its technical
as to how toxins bind to fat cells so I won't go into it.
3. Fatigue - cytokine reaction from virus, lyme and biotoxin
4. Emboli - toxins and chronic inflammation changed blood clotting factors
5. Hypertension - damage to sympathetic nervous system from
inflammation and biotoxins.
6. Neuro cognitive changes - from lyme, toxins and cytokine
inflammatory factors.
7. Multiple chemical sensitivity - nothing more than chronic
inflammation that caused hypersensitive immune response and
hypersensitive sensory nerves.

1. 6 week IV antibiotics to kill the lyme bacteria. (not a 100 percent cure)
This will increases the immune system which then should be able to
keep the co infections (virus) in check. If not antivirals may need to be used.
2. Questran - helps remove toxins from the body from mold and lyme die off.
3. Possible use immuno therapy where antibodies are injected into the
body in order to boost ones natural immune system.

Once this is done the body then can start to heal itself. If there is
residual damage then drugs like adderall will need to be used to boost
what's missing.

My rheumatologist and I plan to write a case study on this. She has
never encountered a case like it. The goal is the help educate doctors
so treatable causes do not go unchecked.

I have not put all the pieces of the puzzle together but in the end I
will."

"Good to hear of another FMS comrade who is getting good results from Adderall. I know that for me, I don't think I could function at ALL without it. I still have very rough patches and have days where I can't get off the couch but they don't last for months like they used to when all I did was sleep. It definitely helps with the energy."

"I am sure Adderall would work for Fibro Fog, but it would be difficult to get it prescribed unless one has a diagnosis of ADD."

"I?m curious if this gal were to use Masquelier?s OPC-85 (which I take) combined with a good Omega 3 fish oil EVERY day (promotes blood flow to the brain) if she would have the same results as she does with Adderall? This more natural approach might be healthier than taking an addictive substance like Adderall. Interestingly, I am considering asking my doctor for one prescription of Adderall because I think it would be handy to have a back-up plan for vacations, family events so I don?t get exhausted. If the doctor agrees to that, I will not take Adderall every day. No way. I would use it purely for a day when I have something big planned and only if my natural supplements are not doing enough that day. It is important for fibro patients to have a back-up plan because it takes some of the stress out of knowing you have a big event planned. I am happy for her though, I just wonder if she could the same thing more naturally on an everyday basis rather than relying on Big Pharma (an industry that I USED to be employed in)."

READER 6--

"I have been taking Ritalin for several years to help combat the fatigue/sleepiness, and I can fall asleep on it. I will be asking my doc about this next month at my next appointment."

"Adderall sounds interesting too! But it is a chemical compound again. I would rather take the naturals."

"I have had CFS/Fibro for over 20 years, along with migraines, insomnia, and hereditary depression and panic attacks. For years I was told the pain and other bodily sypmtoms (digestive, urinary, and immune) were psychosomatic (the polite term), and it has only been in the last few years that I have been offered treatments for those symptoms. I tried Adderall a few years ago, for depression and EDS (excessive daytime sleepiness). It definitely give me energy and focus, but raised my blood pressure too much and stayed in my system long enough to keep me awake at night. It can also increase anxiety. I don't recall that it improved my pain levels any. I am now trying Concerta, another ADD med. I have not been on it long enough to make a decision about continuing, but have not had any negative side effects so far. It does make me more productive, less likely to procrastinate, and less foggy. I can't say yet whether this one impacts pain levels."

"I could see taking Adderall for Fibro/CFS. I would caution that after it first came out, they did find some side effects that can be problematic even for the otherwise healthy. It increases norepinephrine instead of working on dopamine. I used to take Provigil, and while it didn't hit the pain, it did take care of the brain fog and gave me more day."

"My doctor prescribed Methylin (generic for Adderall) as an adjunct to my antidepressant (Lexapro). I have had chronic depression for many years. This is the only thing that has worked after many years of trial and error. I have no pain, have energy and most of all I am NOT depressed!"

"I'd think twice -- make that 20 -- times before playing around with Adderall. Just what you need, a drug that will keep you awake, eh? I get about 4-5 medical newsletters a day from both allopathic & holistic sites. Can't say any source is waving flags for this drug. Further, it's really hard on the liver. www.drugs.com/sfx/adderall-side-effects.html. No recovering alcoholic should touch drugs in this classification. Might as well take a drink....28+ years recovering. See http://www.adderall.net."

"I haven't taken Adderall, and given my penchant for eliminating drugs from my life, I think I will look into alternatives that would increase blood flow to the frontal cortex. It makes sense."

"The article says Adderall is used for persons who have Attention
Deficit Disorder, ADD. It also indicates that it might give people
a racing heart for a few hours......Then it would not be for me
to use it... I already do not tolerate many medications, and if it
would cause heart-racing, Adderall would be a NO-NO!! (My pacemaker
does not control racing heart or atrial fibrilation)."

"This is darn dangerous...... One ought never to take another person's prescription medications... it can kill you."

"I have been using generic Adderall for several years and it has done wonders! I take 20 mg a day, well I take cut the pill in half and take 10 mg in the morning (6 am) and than the other 10 mg at 12 noon. Any later and it's impossible for me to get any sleep. Most Dr's know this drug works but don't advertise it because its another controlled substance issue. I have two side effects, I cant sleep at all or very little. I have major sleep issues anyway so taken this drug early and not past 12 noon is the best way for me to work with this drug. My system is very sensitive to most drugs anyway and caffeine can give me trouble!! It also helps with the appetite, it needs to be used carefully since it is a controlled substance. 2nd side effects are sharp chest pains, a very quick, sharp jolt across the chest, about 1/2 second and happens once or twice during the day, not all the time but sometimes. It isn't for everyone but it helps my pain, gets my body in the "MOJO" motion so I can do more when the day needs me. It doesn't help my Fibro Fog. But it does make me talk a whole bunch! Using it everyday is something I don't do with this drug. Just when the flare ups are bad or I need that extra push. I do recommend the drug and 60 pills in the generic form 20 mg costs about $35.00 at CVS Pharmacy."

READER 16--

"I use Adderall sparingly. I guess it depends on 'your particualr diagnosis' regarding ADD/fms/anxiety & depression. I love the fact that my focus is sooo much better and it definitely helps with my depression at least 80% of the time. As far as pain goes? I'm not sure. I never gave it much thought since, the weather, my mood, my menstrul cycle, and any stress in my life have all an effect on me. I will pay more attention to the possibility that it might help with my pain."

READER 17--

"I take Adderall XR 40mg. every morning. I was on it for awhile, then stopped for a few months and restarted again in Feb. Initially I noticed an improvement in both heavy fatigue and depression. This second time around it's not worked as much on the fatigue (I may have a reactivated infection - EBV, CMV, HHV6 etc.), but it has helped tremendously with my depression when other conventional anti-depressants have failed."

READER 18--

"Four or five months ago my sister had mentioned to me that the doctor had given her adderall for depression and being tired. She does not have fibromalgia. My physician doesn?t have a problem with most drugs but he said that he would not give out adderall because it is basically speed. I do not know much about it but this was unusual for him to say anything about any drugs."

FROM DOM: I sure hope we aren't becoming like Elvis and other "stars" needing uppers and downers to get through life. Just seems our bio-rhythms are off, particularly in the sleep department. That part of our brain just doesn't work right. (See Topic 26 below.) My guess is that our hypothalamus has been impacted by viruses, mycoplasma or injury. Also, see Topic 23 below about a sleep patch. Whaddya think?

19. CYMBALTA

"On the subject of Cymbalta...I tried it a few years ago because it was supposed to be the Magic Bullet, and it made my fibro massively WORSE! I couldn't believe it. I had miserable unstoppable pain and disabling fatigue on that drug. I was wondering...Has anyone else out there had Cymbalta make their FMS worse? It was horrible!!!"

"I have been on Cymbalta 30mg for 3 months and got my energy back the specialist has just put it up to 60 mg yesterday, he said I might get rid of pain on that dose, I hope so, it was encouraging to get this email tonight gave me more hope.The specialist was so excited as I have been going to him for 9 years and everytime I go I say no change and when I told him about my energy, he said, there is nothing beats honesty, cannot believe it after all this time.

From a reader--

"Has anyone tried Indocin for fibro?"

21. MARSHALL PROTOCOL

From a reader--

"Just wondering if you?re familiar with the work of Dr. Trevor Marshall? A classmate sent me some info as her mother followed his protocol when she was very sick with some sort of blood condition, I believe. Marshall?s premise is that Th1 inflammatory conditions are all bacteria-based. She recommended these sites: www.curemyth1.org, www.marshallprotocol.com (look at the Phase I document) http://autoimmunetyresearch.org/phase1.pdf and also www.bacteriality.com."

22. SAVELLA (MILNACIPRAN)

I received several letters from readers this week asking if anyone has tried Savella, the new fibro drug. Please write dombush@bellsouth.net. Also, you can search my archives at www.fms-help.com/newsletters.htm for SAVELLA or MILNACIPRAN - it has been a topic in past issues.

Here's a letter I got last week from someone who tried Savella--

"SAVELLA - approved just for FMS - did nothing for me. Has it helped anyone out there?? I am a 50 year old male and have had FMS/CFS for 10 years."

23. SILENT NIGHTS SLEEP PATCH

http://www.lifewave.com/silentnights.asp

FROM DOM: Has anyone tried this patch for sleep? Write dombush@bellsouth.net.

24. GLUTATHIONE PATCH

From a reader--

"As of lately i feel really good doing the life wave patches / esp. the glutathione patches http://www.lifewave.com/yage.asp. amazing. i learned about them especially in susan somer's book called, "breakthough". you can't put that book down...sold at walmart/barnes and noble, and such. she did an entire chapter on www.lifewave.com - the owner/inventer and i really researched it. you can you tube it as well. i put a glutathione patch on a acupressure point/breast bone...and in minutes all viral /lung junk is gone! I use the carnosine patches as well every other day. they sell energy patches and weight loss patches too. but this glutathione stuff is wonderful. something for you to look into and i have found all this quite amazing. this doc from NASA invented it for space use...and then the rest is history."

FROM DOM: I have reported on glutathione in past newsletters www.fms-help.com/newsletters.htm, but this is the first time I've heard about the patch. Intriguing!

25. CHOCOLATE

From a reader--

"There is an article in the Woman's World magazine 6/08/09 written by a lady who claims her FMS/CFS was cured by eating chocolate! She was bedridden at one time. The chocolate has to be very high in cocoa--like 70%. She read about the ancient Mayans eating chocolate for inflammation while spending her days in bed. The article is on page 22 and very informative."

26. DAMAGED HYPOTHALAMUS CAUSES FMS

Please reply to Carol carolwhitern@gmail.com--

"I have been going to the Fibro & Fatigue Center now for about 3 months. My doctor their has put me on thyroid medicine (for low free T3 and High reverse T3), cortisol (for low adrenal function), Nystatin (for chronic systemic yeast infection), High doses of Valtrex (for chronic viral infections-HHV6 & Ebstein Barr) and many other supplements. I am a nurse and have been researching Fibro for several years now and I believe that at the Fibro & Fatigue center they are on the right track on treating this devastating and complex disease. I have also been getting colonics done and massive amounts of yeast have been coming out of my body everytime I get it done. I think that Fibro is caused by a virus, bacteria or car accident that damages the hypothalamus of the brain, and once this is damaged everthing goes crazy from your thyroid to your adrenal glands to the receptors in our brain and entire nervous system. Once these things are out of whack it makes us prone to more viruses and other illnesses. Since our immune system is now weakened we have the inablity to fight off these infections properly. So, I believe that it is very important to boost our immune systems the best that we can with proper nutrition and supplements. Anyway, this journey to wellness has been very difficult so far. When I first started the antifungals I felt horrible because the yeast was dying off, but I made it through that difficult 3 weeks or so. I am wondering if any other Fibromites have been to the Fibro & Fatigue center and if so how are they doing now? - Carol carolwhitern@gmail.com"

FROM DOM: See my page about hypothalamus over-activation at www.fms-help.com/hypothalamus.htm.

27. SKIN DISCOLORATION

Please reply to Carol carolwhitern@gmail.com--

"I was wondering if any other fibromites get splotchy discoloration of their skin when they go out in the sun. My mom and I both have Fibro and this happens to both of us! - Carol carolwhitern@gmail.com"

28. BREATHING & GLUTATHIONE

This was forwarded to me--

"I checked out the Fibro & Fatigue Center in this area. Basically they
just throw everything at the patient at once treating thyroid & adrenals
infections, etc. I've done all the therapies they offer in with
different doctors. They are just treating the effects of the syndrome
and not the cause. Patients may have temporary relief as I did to some
of these protocols but problems will continue to pile up. Fibro is not
caused by a virus, a bacteria or car accident although stressors like
these can make things worse. The cause is a combination of restricted
breathing and glutathione depletion. These two fundamental pillars of
health are so compromised that the immune and nervous system are under
tremendous stress. The Fibro & Fatigue Center is a few years behind in
their full understanding of how to treat fibro. They have not put all
the pieces of the puzzle together. Also their treatments are very
expensive and for the most part not covered by insurance."

29. DOES MONO OR EBV CAUSE FIBRO?

From a reader--

"I got back my blood results. It was very thorough. According to the results, I have Epstein Barr. The doctor is sending me to another doctor that uses alternative medicine. Do you have any good sites I can visit to know more about this? I wonder, what did I get first the Fibro, or the mono? Doctor thinks that the cause of the fibro is the mono. Have you ever heard this before? Do you think this is the root of all this? I started the Lemon/olive oil drink, have you heard of this? It is suppose to help to detox and flush out toxins, and it is to help the lymphs. I am going nuts from so much going on."

FROM DOM: Yes, I have lots of info in past newsletters about mono and Epstein Barr (EBV). Search at www.fms-help.com/newsletters.htm.

30. SUPPORT HEALTH INSURANCE COVERAGE FOR FIBROMYALGIA PATIENTS

View and sign the petition at http://www.thepetitionsite.com/2/support-comprehensive-health-insurance-coverage-for-fibromyalgia-patients. I am signature #277 - read my comments there. The goal is 1,000 signatures.

31. 7 FOODS TO AVOID WITH FIBROMYALGIA

From WEBMD: http://www.webmd.com/fibromyalgia/guide/fibromyalgia-the-diet-connection - also read my 100 Tips for Coping with Fibromyalgia & Insomnia at www.fms-help.com/tips.htm - these 7 foods are discussed there as well.

32. DOM'S UPDATE

I've been feeling great and keeping up with everything lately. Life sure is wonderful when you feel good! I have great piano students and also play the piano and organ for my church. I've had plenty of energy to take care of home responsibilities - no pain, fatigue, fog, or depression. Sleep has been pretty good lately (for someone who has to take sleep meds for a 40-year-long sleep disorder www.fms-help.com/insomnia.htm). I've had interesting dreams, as well! My current list of meds, supplements, and lifestyle helps is at www.fms-help.com/what.htm - we are all different as to what helps us manage our symptoms.

Of course, living in an imperfect world and having an imperfect "fibro-body," something is always wrong. The nuisance right now is a large cold sore. When I get them they don't go away for 2-4 weeks...ugh! I have always been a "slow healer" from illnesses, surgeries, and wounds. I could write a book about all the things I've tried for cold sores that didn't work. All of the so-called "tried and true" remedies (lysine, etc.) don't do a thing for me. I decided not to use Acyclovir for awhile, because it didn't seem to make a difference unless I stayed on massive doses, which isn't good for your kidneys. Yesterday the doc prescribed a massive dose of Valtrex, that you take in just one day. It's supposed to stop the virus replication. Well, let's hope so. (See my page about similarities between AIDS and CFIDS at www.fms-help.com/aids.htm.)

Although it has been a productive week and we enjoyed glorious weather here in Florida, it was also a sad week. One of my friends found her husband dead when she came home from work! He was a sweet, kind, older gentleman who was very active. He had not been sick, so his death was totally unexpected. I played for his memorial service on Saturday. Over the years, I have played for numerous funerals for the young and the old. It is always sobering to sit through these services and see how a life is summed up in 45 minutes - a "punctuation mark" on that life. What do people remember about you? Food for thought.

We always have stirring Bible messages at Madeira Baptist www.madeirabaptistchurch.com, but recently there was a message about the coming of the Lord being soon now. The signs of the times are already here. Our world is changing, getting ready to accept the Anti-Christ. The associate pastor asked if we are ready for the return of Christ. He used a story Jesus told about 10 virgins waiting for the Bridegroom - the 5 wise ones had oil in their lamps (the Holy Spirit), but the 5 foolish did not--

"Then shall the kingdom of heaven be likened unto ten virgins, which took their lamps, and went forth to meet the bridegroom.

And five of them were wise, and five were foolish. They that were foolish took their lamps, and took no oil with them: But the wise took oil in their vessels with their lamps. While the bridegroom tarried, they all slumbered and slept. And at midnight there was a cry made, Behold, the bridegroom cometh; go ye out to meet him. Then all those virgins arose, and trimmed their lamps. And the foolish said unto the wise, Give us of your oil; for our lamps are gone out. But the wise answered, saying, Not so; lest there be not enough for us and you: but go ye rather to them that sell, and buy for yourselves. And while they went to buy, the bridegroom came; and they that were ready went in with him to the marriage: and the door was shut. Afterward came also the other virgins, saying, Lord, Lord, open to us. But he answered and said, Verily I say unto you, I know you not. Watch therefore, for ye know neither the day nor the hour wherein the Son of man cometh." - Matthew 25:1-13

A great delusion is coming on the earth. We are living in the end times before the return of Jesus Christ. The Man of Sin (the Wicked One, the Lawless One, the Beast) will soon be here, if not already here! We are very close to the rapture of the church out of the world, and the beginning of the Great Tribulation that will affect the whole earth. This will be a time of such trouble and sorrow that has never been in all the history of the world. The Bible predicts a "falling away" from the faith before the return of Christ. (See Matthew, Daniel, Zechariah, and Revelation.) Our spiritual "cisterns" should not be TV preachers or devotional books, but the Word of God. The Bible is such a short book, but so many professing "Christians" have never read it, much less studied it. Don't let a day go by without opening your Bible and reading at least a few verses to let the Holy Spirit touch your life and draw you closer to God. Here are some scary verses that describe the times we are living in today--

"This know also, that in the last days perilous times shall come. For men shall be lovers of their own selves, covetous, boasters, proud, blasphemers, disobedient to parents, unthankful, unholy, Without natural affection, trucebreakers, false accusers, incontinent, fierce, despisers of those that are good, Traitors, heady, highminded, lovers of pleasures more than lovers of God; Having a form of godliness, but denying the power thereof: from such turn away." - 2 Timothy 3:1-5

Last night President Obama made a proclamation that the month of June is now "Lesbian, Gay, Bi-Sexual and Transgender Pride Month." (Gives whole new meaning to the term "June bride," doesn't it?!) However, President Obama did not participate in the National Day of Prayer. He also has abortion at the top of his agenda. These are two things that fly in the face of God's authority and His creation. We know that God destroyed Sodom and Gomorrah, so how can we expect God to bless America? Recently I heard this statement: "We are not in a recession or a depression. We are under the judgment of God." I agree with that!

Well, our FMS/CFIDS woes are miserable but temporary. Heaven's bliss awaits the child of God, but unbearable suffering is just ahead for those who reject Christ. People don't talk much about hell anymore (except to use it as a curse word), but people are going there every day. Time is short. TODAY is the day of salvation. We are ALL sinners and need the FREE GIFT of salvation, paid for by Jesus when he atoned for our sins. "Being good" won't save us from eternal punishment. I was "religious but lost" for 36 years. I was finally born again on May 11, 1988. My testimony is at www.fms-help.com/salvation.htm. Don't depend on yourself, or a system of religion, for something as important as your eternal destiny.

"Jesus answered and said unto him, Verily, verily, I say unto thee, Except a man be born again, he cannot see the kingdom of God." - John 3:3

Your fibro friend,

Dominie

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.