"It has been great getting your newsletters and emails. You really are providing a valuable service!"

"Your newsletters are The BEST!!!!!!!!!!! Thank you for all the time and effort you personally put into these fine newsletters!!!"

"I can't thank you enough for the information you've assembled www.fms-help.com."

"re: www.fms-help.com/031613.htm - I wanted to respond to the readers that are wondering if you can work while you are on disability. Well, I have been working a part-time job of 16 hours a week for close to a month, and so far so good. Missed one day in 3 weeks, but I refuse to let the pain/fatigue stop me from working. Yes, I was somewhat concerned about my SSA benefits, but I am following the rules to a "T" and notified my doctor that I am in no way cured, and working only because I desperately need the money. I have a great doctor, who is very sympathetic and knowledgeable. I feel blessed to have him as my doc."

FROM DOM: I spoke with a social security representative today and was told that you can earn up to $1,040 (gross) per month when you are on disability.

"Read your article on Guaifenesin. Have you tried it? I found a place you can call and get a free sample plus free shipping. The number is 800 846 5525."

FROM DOM: I have not tried it. Many reasons given in past newsletters - try a search of my site for "Guai" by using the search box at the end of this page.

"I wish there was a way we could make our family feel the kind of fatigue we feel for just half a day. I took my daughter swimming for an hour today, and it aggrivated the bursitis in my shoulder, and totally drained ALL my energy, and made me hurt from head to foot. When my husband came home and asked me how my day was, trying not to complain (he says I complain too much) I just responded that I've had better days, and that I didn't think a swimming pass would be a wise investment. He went off on me about how I never exercise and swimming is good exercise and if I would just do it more that I wouldn't be feeling like this. After a brief shouting match which quickly revealed that he was NOT listening, and did NOT care about how I felt, I ended up just crying silently in the kitchen, wishing for death. I felt so alone, and like no on cares about me as long as they get dinner, and no one even wants to understand. Everyone thinks they're so smart telling me to exercise more, convinced it will make me feel better. It makes me hurt so much I want to die! And the exhaustion is indescribable. I can barely move. Why can't they at least try to understand?? How can we make them understand? I'm not refusing to exercise, I'm doing the best I can. I'm just trying to maintain the ability to function and have a life. :( How do other people get their family to understand they are not trying to be lazy, they're trying to function? I had 5 days in a row last week that were excellent and I got so much done. And today... one our of swimming feels like it just about killed me. I'm so discouraged. I want to feel like I did on those good days, every day. *sigh* I've found a combination of vitamins that usually helps and I get 8 to 10 hours of sleep most days. Though I've noticed if I sleep too long it makes my arthritis hurt more. I have to find a balance. I haven't tried acupuncture. And haven't been able to afford massage or chiropractor lately. I've tried to improve our nutrition levels and reduce sugar in our diet. Like many fibromites, I mourn the loss of my health, and in many ways mourn the loss of friendships I used to have. So few people really understand, they think I'm faking it, pretending just to get attention. In some ways I mourn the marriage I used to have, although I am still married. Our relationship has changed a lot. This isn't the life we signed up for, and many times it feels unfair, even lonely. Do other fibromites experience this? I'm sure they must... we all experience the same kind of invisible debilitating pain that no one believes is real. We wince when someone hugs us too tight. We are expected to keep working through our pain, while they expect to be coddled through a minor illness. And somehow we're supposed to be cheerful all the time, never complaining, smiling as if nothing is wrong so they don't feel compelled to try and "fix" us. Feels like we're not allowed to show our real condition, we're just expected to keep working until we drop, and be happy about it. But if they ever get the smallest injury we're expected to fawn over them and dote on them like the world is ending, "because we understand". In some ways I have lost my compassion for others, they demand more from me than they are willing to give, and the balance is unfair. I'm trying to fight this though, I know it is not God's way. We're supposed to love others, even if they don't show love to us, just like Jesus did. That's probably the hardest part of this whole thing... Today has been a real trial on my faith. I understand how someone could lose their faith due to this illness, if their faith was built only on feelings. Mine is built on more than that, but today was a pretty bad day. Praying for Jesus to send healing to us all. We need it so bad!"

FROM DOM: We've all been where this reader is...and some of us still are under fire from family members, friends or bosses. Go to the section EXPLAINING FMS/CFIDS on my homepage at www.fms-help.com. Here are the topics under that category-- FIBROWHEEL, IMAGINE (what it's like having fibromyalgia), INTERVIEW WITH DOMINIE, LETTER TO THE HEALTHY WORLD FROM THE LAND OF CHRONIC PAIN & FATIGUE, LOSSES WE EXPERIENCE WITH THIS ILLNESS, MY NAME IS FIBROMYALGIA, OPEN LETTER TO NORMALS, POEMS ABOUT FIBROMYALGIA, SKEPTICS, SPOON THEORY (explains chronic illness to healthy people), THIEF OF MANY LIVES, and TRYING HARDER (why it doesn't work for CFS).

"I want to shout this from the roof tops! Love every person!!!! St. John of Kronstadt once said, "Love every person, regardless of his sinful state. Sin is sin, but the basis of a human being is one and only - the image of God. Sometimes, the weaknesses of people are apparent when, for example, they are malicious, proud, envious, stingy, greedy. But remember, that you yourself are not without evil, and perhaps, there may be more of it in you than in others. In any case, with regard to sin, all people are alike; "For all have sinned and fall short of the glory of God" (Romans 3:23); we all are guilty before God and we are all in need of His mercy. That is why we have to tolerate and mutually forgive one another, so that our Heavenly Father may forgive us our transgressions (Mat. 6:14). Look how much God loves us, how much He has done and continues to do for us, how He punishes us lightly yet pardons us so abundantly and benevolently!"

"Chronic Fatigue Syndrome: A Treatment Guide, 2nd Edition will be free on Saturday, April 20th and Sunday, April 21st, and again on May 10-12, on Amazon.com. The book includes over 100 effective treatments, spanning the full range of pharmaceutical and complementary modalities, an in-depth discussion of symptoms with cross-referencing to appropriate treatments, the latest research into the causes and mechanisms of the illness, doctors' protocols, coping techniques, special sections for managing chemical sensitivities, dietary restrictions and the special needs of children, as well as extensive appendices covering resources, locations of doctors and clinics, local, national and international organizations, and internet ordering information. The book also features over 2600 useful links to further reading, research articles, and patient reviews. Dr. Charles Lapp calls this the “book that every patient should have.” You don't need a Kindle to read this book! Amazon provides free apps that allow eBooks to be read on computers, iPads, phones and other devices. For more information go HERE: www.prohealth.com/library/showarticle.cfm?libid=17951."

http://kwiksurveys.com/app/rendersurvey.asp?sid=mnwykzr9g2ae1l5112627&refer=us%2Emg206%2Email%2Eyahoo%2Ecom - Snippet: "This survey is being conducted by Dr. Lily Chu and Dr. Leonard Jason's research team, not by the US Food and Drug Administration (FDA). The main purpose of this survey is to help answer questions the FDA has about ME and CFS symptoms, their impact on daily life, which treatments patients are using or have tried, and which treatments patients have felt to be effective. Your answers will help teach pharmaceutical companies about the symptoms/ severity of these illnesses while considering new medications for treatment. Dr. Chu will present the results of this survey at the April 25-26, 2014 FDA Drug Development Workshop for ME and CFS. We may also publish some of the information we gather in order to inform the wider medical/ scientific community of your experiences with this illness. Instead of asking you to type in answers to each of FDA's questions, this survey lets you choose specific answers to questions while allowing space for more comments. This may save you some time/ energy typing and also remind you to think about certain symptoms, their impact on your life, and certain treatments. It also allows us to compare your answers to others affected by ME or CFS. The information collected may be different from what you have sent (or plan to send) in to FDA so we encourage you to participate even if you have already participated in other ways. Survey responses are anonymous and will be kept confidential. The survey should take 30-40 minutes to fill out, depending on how many comments you have. Text boxes on the survey look small but will expand to fit what you type in.Since this is an anonymous survey, the program does not allow us to save partially completed responses.You may want to look at the survey first, think about/ write down your choices, and then return to fill it out when you are ready. You may also choose to have someone else help fill in your answers for you after you have informed them about your choices. If you want your answers to be part of the results shared at the FDA meeting, please complete the survey by APRIL 17. The survey will remain open until May 10 though and all responses submitted will be included in our final report to FDA in August."

"Facebook post from Dr. Derek Enlander on March 3 - Treatment trial for inflammation in and ME, FMS and CFS. We are enrolling patients for a treatment trial using a new nonsteroid anti-inflammatory drug. This drug reduces the C-reactive protein which is an indicator of inflammation. For further information, Please contact me and the ME CFS center at 212 794 2000 for further details. Patient should have a prior elevated C-reactive protein test."

http://articles.mercola.com/sites/articles/archive/2013/02/13/ssri-antidepressants.aspx - Snippet: "Celexa and other antidepressants, including Lexapro and Elavil, may extend the electrical activity in your heart, potentially leading to abnormal heart rhythms, which in turn can lead to dizziness, fainting or even sudden death. Nearly one in five patients taking Celexa or certain other antidepressants called serotonin reuptake inhibitors (SSRIs) had longer QT intervals that could signal an abnormal heart rhythm. Antidepressant use has also been linked to thicker arteries, which could contribute to the risk of heart disease and stroke. Many studies show antidepressants work no better than placebos, especially for mild to moderate depression; there are many natural strategies available that can help heal mental health issues at the foundational level, without dangerous side effects."

"I also had endometriosis. Also I has severe acne even till I was 26 years old!!! Painful menstruations, two miscarriages, a goiter on right side of thyroid, mumps as a kid, and a whiplash when I was 2 years old and that last item, or incident I should say, might have influenced my thyroid problems, as now they say (drs) that severe injury to the neck can cause the thyroid to malfunction. I know that thyroid problems have a lot to do or is intertwined with fibromyalgia in many cases."

Here are some responses from readers to the article at www.fms-help.com/misunderstanding.htm - misunderstandings with friends and family due to FMS/CFIDS--

"Rejoicing with you that God turned the very painful experience to good and enabled reconciliation. This is an example of how God does not waste our pain. Hoping we see in heaven even more fruits from our suffering."

"Thank you for sharing, you put everything I feel into words. I'm sorry what happened with your friend but am glad to see that it turned around and ended in a much stronger friendship. You hit every one on point especially when you said "you need to trust God more", "try harder" (actually hear this one every time I talk to my mother), " saw you laugh". I sometimes feel if I have a good day I can't show it or it's gets taken the wrong way, as you must be doing better so let's go do this. Even though that wouldn't really happen since I have no true close friends who talk to me or visit me. I don't have family where I live so it's just me, my husband and child. My husband says when the going gets tough people don't want to deal with it. I say true but I think people start with good intentions of helping but when there's no improvement, reward from it or it's too much/ overwhelming than they somehow quietly walk away but still connected (husband's facebook). I do talk to a lady from church and used to talk to a therapist. Right now I'm absolutely on nothing (for fibro,chronic fatgiue, anxiety) only Xanax. I don't take it on a regular basis unless I go out which is not often only doctors visits. I do feel very low at times, I pray for my illness to go away all the time. It breaks my heart when my child says "Mommy, when are going to get better?" or will I go see him in a school play, etc. Time is moving so fast that I'm missing out on every single thing of my son's childhood. I go through every single emotion from anger, guilt, frustration and so forth. I get desperate that I ask God, what am I doing wrong, why did this happen to me, what can I do to get better. I know God is with me, guiding me but at the times I get doubts. It probably has a lot to do with not having much of a support system, which I so desperately need and want in my life. It's difficult being physically and mentally fatigued and dealing with weakness. I hate saying it but I'm basically home bound. Every time I get sick or several months pass I feel the chronic / weakness advances. It almost sounds like MS but have done a brain MRI with the dye done, Neurologist says everything looks perfect. The next doctor I'll see, (not sure when) is Rheumatologist."

"Yes, I have become sooooooo angry at times at people, because they were whispering behind my back, and they made me feel that I was an idiot!!!!!! I was rather shy for many years, even as a child, but back home, things were fine, people at least treated one another with respect! And although I already had exhaustions and fatigue as a child and teenager, I find that here, with the Hollywood culture, it is worse, and of course, we are in the end of times, so probably in Europe that old fashioned politeness has suffered as well!! At different jobs, I could see with my own eyes that they were whispering about me, and when I came closer they would be very fake "nice" but then their moods would change towards me. No, I am not imagining it!! I was ill so many times, not only from the formaldehyde fumes, but later also from all the medications.... heart medications that caused a toxic liver and terrible pains in my body, (not once, but many times) and the betablockers from which I almost died, not even to speak of the regular fibromyalgia. I try to keep the Lord in front of my eyes, even now I am thinking about a letter I will write to that nurse practitioner who was soooooo angry that I am taking natural supplements, and if she had looked in the file she would have seen how terribly sensitive I am to medication and that I have to take natural supplement. A short, polite, but to the point note saying she was incorrect in giving me a sharp reprimand and that there is a reason why I must take natural items (like liquid magnesium to keep my heart from going irregular or worse: atrial fib) and that she can take my file and go through it because it is all in there!) After that note, I will feel better, we still have the right to defend ourselves. Also, I may not let them "lord it over me" because the Lord is my Lord over me!! HE is above me, and not these people who try to "run" us, manage us, and try to tell us how to live, how to "be", how to behave, or whatever they try to do with us. THEY CANNOT be above us, because the LORD is ABOVE US. Dr Oz understands us, we need to pray that more doctors would follow his example. Well, must go to bed, was blowing off steam also!! and letting you know that I understand all your frustrations!"

"You sure are correct about friends and family and their lack of understanding for our illness www.fms-help.com/misunderstanding.htm. I deal with all the same complaints, which is why I love your newsletter so much. It helps me deal with my frustrations better, knowing other people such as yourself deal with the same type of issues with their family and friends too."

"The CFS/ME (connection) should not be severed. It's too late anyhow. There is no need to sever CFS & ME when we can come together. We need to use the less-sick CFSers to do the advocacy work for the severely ill. "CFS/ME," a brand, just needs to be rebranded "NON HIV AIDS," and join forces with all the other acquried neuroimmune dysfunction illnesses (CFS / ME / AUTISM / GWS / FMS / LYME / AIDS / MS) under one advocacy umbrella. The #1 objective being to defund HIV. Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) is a syndrome, hence its name. Acquired Immune Deficiency Syndrome (AIDS) is also a syndrome. CFIDS & AIDS are not diseases. A syndrome is a syndrome. Myalgic Encephalomyelitis (ME) is a disease, just like malaria or MS (with specific hallmark biomarkers). So, CFIDS is AIDS-like (both syndromes), while ME is MS-like (both diseases). CFIDS & ME are not the same (one is a syndrome, the other is a disease). "CFS/ME" is not accurate, and is not interchangeable. ME patients do not have CFIDS. And while millions do...not all CFIDS patients would qualify for a ME diagnosis (by the International Censenus Criteria (ICC). Just like a CFSer cannot just wake-up one day and decide: "hey, I have malaria," you cannot just wake-up and arbitrarily decide that you have ME. Until the day comes when a doctor diagnoses you with ME, then you have CFS --> a syndrome. Syndrome or disease, patients suffer and die of both. CFIDS (syndrome) patients like to align themselves with ME (disease) patients because it helps give their syndrome the dignity and respect that it currently lacks due to the silly name the government (political) gave it. I coined this phenomenon "disease envy." Advent of "disease envy": http://cfsstraighttalk.blogspot.com/2005_07_01_archive.html. I understand why CFSers' do it, but CFIDS patients have to understand that theyare stealing the name of a legitimate disease, ME. This is the reason why ME patients don't like to be lumped-in with CFS patients, because "CFS" dilutes the meaning of ME's very well-defined disease. I don't blame 'em, if I were a ME patient I would not want a CFS patient lumped in with me either. CFIDS & ME will never be the same, because diseases and syndromes are two different things."

"I was reading your tips on coping with fibro at www.fms-help.com/tips.htm and definitely learned a few things from it (even learning one new thing is helpful). One odd thing is men have more serotonin and might be less likely to get it, but when we do get it we tend to be even more depressed than the females (part might be the fact that it's somewhat seen as a womens disease and we don't feel strong and energetic anymore which definitely hurts our ego."

FROM DOM: I hear from many men with fibro. Their suffering and sense of social misunderstanding from family, friends, employers, etc. is even worse than for females, since men are expected to be strong, providers, solid support, etc. I have a special MEN WITH FIBRO page at www.fms-help.com/men.htm with stories from a number of male readers who have given me permission to share their fibro experiences.

FROM DOM: See my essential oils page at www.fms-help.com/oilsstore.htm for a list of my favorites and what I use them for. They have kept me from so much unnecessary misery.

FROM DOM: I've had scary high cholesterol for years. However, I had some labwork done a week ago and my cholesterol is now in the normal range.....amazing. I've been taking niacin (hit or miss) for a few months now. I also have been avoiding sugar almost totally and have lost 7 lbs. I take other supplements (see www.fms-help.com/what.htm) and meds, but I really don't know for sure what has made the difference. My chiropractor told me today about niacin lowering cholesterol, so I looked up this article. I can't say enough nice things about my chiropractor, Dr. Bryan Bell. I have been going to him on an "as-needed" basis for 20 years. I see him about 2-3 times a year when my scoliosis causes me pain or when I wrench my neck or back. He can fix my problem in one visit. I have tried at least 6 other chiropractors since I moved to another county 10 years ago, but either they didn't help me, or actually made my situation worse! So I drive back to see Dr. Bell and I am so thankful for him....and the friend who told me about him 20 years ago.

"....but though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; while we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal." - II Corinthians 4:16-18

"Like many fibromites, I believe that medical doctors are useless. I've gotten all my best information from sites like yours, on the internet. Even a local support group was of no use because we weren't allowed to mention specific brands, drs., therapists, etc. that we might have had an opinion of. (They shut down for lack of attendance.)"

"I used to list everything. MOST of the things listed were "self induced needs". I began asking myself why it was important to make sure all the clothes were ironed? I had always done ironing all one one day and got it out of the way...BUT that is impossible now. my husband needs his clothes pressed nicely for work, but now he helps with it...he has been helping with it when I can't get to it, and now he has pretty much taken over ironing his own clothes. But I realized I have so many things on the list and then the LIST actually causes MORE stress. I know I have that list waiting for me and it causes me unrest until the list is completed! My calander does the same thing to me. For the past 17 years, I have spent two and three days in doctor's offices for my different specialists and that isn't counting the time spent waiting for my regular labwork and the time spent in line at the drug store getting my prescriptions filled (about 18 of them). Going to all my appointments causes me great pain and fatigue, and it is always stressful for me to make sure I do not miss those appointments. My forgetfulness has caused this a couple of times last year and the doctor was so upset about it and let me know. I called the same day to let them know what happened, but it was "unforgiven" and if I do it twice in the same year, I will be dropped from his care. Well, this month, I began to remove responsibillities from my list. I had becme a slave to that list. and as far as the calender is concerned, I have made a decision to stop going to all my specialists. I decided to keep a regular visit with my cardio, dentist, GYNO annual,and rheumy. The rest I will go when things are just too difficult to live with. Those I will not be seeing on a regular basis are my neuro who keeps ordering tests and finding more wrong; my gastro, unless symptoms make it unbearable....I have esophogeal problems from the scleroderma and my dermatologist. My cancer check can be done at the primary doctor. my psoriasis I am handling a different way. There a few others I am no longer seeing on a regular basis...and if I DO need to go, I wll 'alternate". NO MORE seeing every one of my specialists on a regular basis - because that keeps me in doctors' offices every single week, and I just can NOT take it anymore. My mother has been given a short time left due to kidney failure. She has decided that unless the pain gets bad, she, too, is going to stop sseeing all her doctors. they have all told her there is nothing more they can DO...so WHY do they need her to go through the difficult trip to see them all the time? I could not believe it but for the past two weeks, I did not have ONE SINGLE APPOINTMENT!!! It was GLORIOUS!"

FROM DOM: I am a list-maker as well. It can be helpful or oppressive. Life doesn't seem to cooperate with my lists many times, so I've learned to be flexible with accomplishing the tasks on my lists. I use a daily planner to keep track of my students, church and family responsibilities, but I have been shortening my entries so that I don't feel bad when things don't get done...but I do like to check off the important things that get done. It's a good reference to have when you need to look back to make sure a matter was taken care of. On a separate calendar on the wall above my desk, I write in the bills I need to pay on each day, to whom and the amount. For many years I've kept a separate daily planner to keep track of my meds and sleep. (I stopped keeping a written track of my supplements, because I take certain ones based on how I feel that day www.fms-help.com/what.htm and what my needs are at that time.) On my medical planner, I also include a short comment for the day, such as "insufficient sleep" or "felt good all day."

http://articles.mercola.com/sites/articles/archive/2013/03/24/modern-medical-errors.aspx - Snippet: "One in four patients in a hospital is harmed in some way from a medical mistake. An estimated 30 percent of all medical procedures, tests and medications may be unnecessary – at a cost of at least $750 billion a year. For the past two years, the American Board of Internal Medicine Foundation, one of the largest physician organizations in the US, has released reports on the most overused tests and treatments that provide limited or no benefit to the patient, or worse, causes more harm than good. The list currently includes a total of 135 different tests, procedures and treatments. Once you’re hospitalized, you’re immediately at risk for medical errors, so one of the best safeguards is to have someone there with you. This is particularly important for pediatric patients, and the elderly. Helpful tips and questions to ask to help prevent avoidable medical errors are discussed."

FROM DOM: With Easter approaching, I played "The Via Dolorosa" for an offertory last Sunday. The Via Dolorosa (Latin for the "Way of Grief" or "Way of Suffering ") is a street, in two parts, within the Old City of Jerusalem. It is said to be the path that Jesus walked, carrying his cross, on the way to his crucifixion. Here's a youtube link of this song: http://www.youtube.com/watch?v=h6dwOX6N_Tk. Pondering the sufferings of Christ (the betrayal by Judas, the beatings, the cat-of-nine-tails whipping that tore flesh off his body, the torture, mockery, slapping, spitting, ripping out his beard, failure of Peter his disciple and friend to acknowledge that he even knew Jesus out of fear, the crown of long, sharp thorns pushed into his head, the utter Satanic hatred unleashed against Jesus as he bore the sins of the whole world on the cross)....greatly eases our own suffering: "He is despised and rejected of men; a man of sorrows, and acquainted with grief: and we hid as it were our faces from him; he was despised, and we esteemed him not. Surely he hath borne our griefs, and carried our sorrows: yet we did esteem him stricken, smitten of God, and afflicted." Isaiah 53:3,4 We who believe on Jesus have eternal life, because His blood has washed our sins away. Jesus was resurrected from death, was seen by hundreds of people for 40 days http://godandus.org/40days.html, and was taken up into heaven (ascended). My story of when I became "born again" at age 36 is at www.fms-help.com/salvation.htm. Below are the words to "The Via Dolorosa"....they always touch my heart!

Down the Vía Dolorosa in Jerusalem that day
The soldiers tried to clear the narrow street
But the crowd pressed in to see
The Man condemned to die on Calvary

He was bleeding from a beating, there were stripes upon His back
And He wore a crown of thorns upon His head
And He bore with every step
The scorn of those who cried out for His death

Down the Vía Dolorosa called the way of suffering
Like a lamb came the Messiah, Christ the King,
But He chose to walk that road out of
His love for you and me.
Down the Via Dolorosa, all the way to Calvary.

The blood that would cleanse the souls of all men
Made it's way through the heart of Jerusalem.

Down the Vía Dolorosa called the way of suffering
Like a lamb came the Messiah, Christ the King
But He chose to walk that road out of His love for you and me
Down the Vía Dolorosa, all the way to Calvary.

"The added stress of self-condemnation for not being able to provide for your family due to physical limitations of FMS/CFS can create a mental prison that accompanies the physical prison of this disease for those who are expected to provide the family income. The financial reality of mounting debt from doctors adds to the stress of not being understood and therefore denied disability completes the debilitating scenario that has makes surviving a daily challenge."

FROM DOM: I totally understand! This is a really tough problem! I have a page on my site for MEN WITH FIBRO at www.fms-help.com/men.htm.

II Corinthians 1: 4 - "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.