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Letters From Our Readers - Comments & Suggestions 10-10-07

  [ 396 votes ]   [ 5 Comments ] • October 9, 2007

Frustrated But Not Depressed

I recently met a young woman (younger than me, at least) who asked me, "Don't you get depressed with this Fibromyalgia?" My response to her was this: "I have suffered with Fibro for almost 30 years. Sure, I get frustrated with the limitations all the time, but depressed? No. Because I know that this certainly is a "life-altering" condition but it is not "life-threatening" and for that I am grateful. How we feel can change, not just day to day but from hour to hour. But we will be here tomorrow and the next day and the next day to embrace whatever comes our way." - Peggy


My Triple-threat Treatment Combo

I was diagnosed six years ago and tried treatment found on the first website I searched: Fibromyalgia Treatment Center. I started taking [large doses of] guaifenesin. I went into remission almost immediately. I stayed on this dosage until the nurse at FTC responded to my e-mail by stating my body couldn't handle that dosage. Once I lowered the dosage, the symptoms returned. I found a chiropractor who used the Palmer method plus direct, deep massage on the FM spots, followed by traction for 10 minutes - all the difference in the world. After visiting four different specialists, I convinced a physician’s assistant to let me try MirapexR as [found in an article on] ProHealth. I have found this and guaifenesin plus chiropractic is absolutely required to live with the disease. I teach high school students, put in 10-12 hours a day, and I'm 56. - MC

Note: We’re pleased you have found a treatment combo that works for you.Your story is a good example of what so many FM patients have found - that it often takes a combination of both medical and alternative/complementary treatments to successfully manage Fibromyalgia.


LyricaR Success Story

I was recently put on Lyrica, the FDA's newly approved drug for Fibromyalgia. The first two weeks I was dizzy and spacey. After that, I've got more energy and a clearer mind than before Lyrica. My sister has been on Lyrica for a few months and is able do things like to tear down walls for her new kitchen and work all day long. - Lora


My Kinship With Karen

Thank you so much for you article about Karen Richards. (“Karen Lee Richards - Making a difference in the lives of those living with Fibromyalgia and Chronic Fatigue Syndrome”) I feel a kinship towards her in a lot of ways. I was finally diagnosed with FM by my doctor in the early/mid 90s, after years of suffering and putting off doctor visits because I would go from "it's probably all in my head" to "it's probably terminal, and I don't want to know." …I felt like many have said they did, elated because I finally had a name for all of the problems I had been experiencing; and confused because at the time there was precious little info available on the disorder… I am so grateful for ImmuneSupport's abstracts and articles. Now there are shelves of books at bookstores on the subject and the Internet is loaded. I read and research as much as I possibly can.

I have pretty much been in a constant flare for over two years… I can't work anymore. I pushed that envelope about five years longer than I probably should have, but I had a job I loved despite the stress. I'm single and that was my only means of support. I have struggled mentally, physically, emotionally, and financially - especially financially… Things, belongings, etc. don't mean as much to me anymore. I've found it's easier to just hang onto my memories - they are much lighter and easier to move around and carry.

I have found, like Karen, that it helps to: 1) pace myself; 2) know/acknowledge/respect my limitations; 3) learn to either say no or just be stubborn and don't show up. I no longer "drag" myself to get-togethers, meetings, etc., when I'm tired; 4) eat when I'm hungry, drink when I'm thirsty, and sleep when I'm tired; 5) be creative. I love to make jewelry, artist trade cards, and mixed media pieces. I've found this not only relaxes me, but takes my mind off the pain when I'm creating… I, too, now realize that this illness is a blessing. God needed me to slow down and reorder my life… Please know ImmuneSupport has helped and is continuing to help and be a blessing to me… I even have you listed on my blogsite. - Joni


Asking Oprah

Let’s ask Oprah Winfrey to do a show in CFIDS and Fibromyalgia. And include the personal debt we are all suffering under while trying to hold our bodies together. - Pam

Note: While we would never discourage anyone from writing to Oprah, it’s worth noting that for at least 10 years individuals and groups have organized letter-writing campaigns asking her to do a show on one or both illnesses. Thus far none has met with success. However, it never hurts to keep trying. Who knows? Your letter may be the one that makes the difference.

Note that this information has not been evaluated by the FDA. It is generic and is not meant to prvent, diagnose, treat or cure any condition, illness, or disease. It is very important that you make no change in your health care plan or health support regimen without researching and discussing it in collaboration with your professional health care team.

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Article Comments Post a Comment

Asking Oprah to help
Posted by: jsellie
Oct 10, 2007
Dear Pam: I have tried with Oprah for ages, too. She simply does not respond. Dr. Phil might be a MUCH better venue....his wife Robin was very ill and only through SALIVA TESTING were they FINALLY able to diagnose and treat her. Through SALIVA TESTNG is the ONLY way that I have been able to find help. Traditional doctors are a WASTE of time...they have NO idea what Fibromyalgia is or what causes it... I have had it for 4 years now and as I was a very well known trainer of horses, my life has been greatly limited. It is depressing but more than that, it is FRUSTRATING. I have tried so very many treatments, and have come to the belief that everyone who suffers from this illness and CFIDS is different, and that not one treatment works for everyone. SO MANY PEOPLE SUFFER FROM THIS HORRID ILLNESS, YET THE MEDICAL COMMUNITY KEEPS ON SAYING "IT'S IN YOUR HEAD, HERE ARE SOME MORE ANTIDEPRESSANTS". RIGHT. THAT WORKS. IF YOU WANT TO PURSUE BRINGING THIS TO DR. PHIL'S ATTENTION, I WOULD LOVE TO HELP. I HAVE BEEN THROUGH THE MOST HORRIBLE, INCREDIBLE, LEARNING JOURNEY OF MY LIFE SINCE I ACQUIRED THIS ILLNESS. EDUCATING THE PUBLIC IS ALWAYS WHAT WE HAVE DONE WITH HORSES, AND IF I COULD HELP TO EDUCATE THE PUBLIC ABOUT THIS ILLNESS, I WOULD FEEL LIKE I REALLY HAVE CONTRIBUTED SOMETHING TO THIS WORLD. LET ME KNOW... AND G-D BLESS. TAKE CARE OF YOURSELF. BEST, JOCELYN
Reply Reply

ok. so which type of saliva testing re you talking about?
Posted by: wentworth228
Oct 11, 2007
Thanks, Nancy


Saliva Testing
Posted by: sharli
Oct 10, 2007
What is 'saliva testing'? What did it reveal in Robin McGraw? How does it produce a diagnosis? Thanks :)
Reply Reply

saliva testing
Posted by: strivin2bwell
Oct 14, 2007
You can purchase a saliva testing kit through your Dr. or health care provider or directly from a compound pharmacy. The test is simple, involves drooling in a test tube the prescribed number of times per day and mailing it off. My test revealed adrenal glands not producing enough cortisol. Cortisol effects so many areas of your life. I take adrenal supplements twice a day and the life altering fatigue I had is gone. An Internal Med. Dr. told me my fatigue (I couldn't stand up, sometimes I couldn't raise my arms) was because I had 4 teenagers, he wrote it on my chart ignoring me calling after him, I LIKE my teenagers...which I do, very much, they invigorate my life!! My 19 year old was struggling in college and she took the saliva test as well, she is now on supplements and carrying a full load of classes. Sometimes adrenal fatigue is hereditary, sometimes caused by too much stress over too much time. Not sure about Robin McGraw?? PS once on adrenal supplement and correcting a progesterone deficiency the Fibro went into "remission" (no muscle pain) for 6 months!


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