From Our Readers – Comments & Suggestions 01-21-09

From a Man With Fibro

…I am the only source of income for our family and I just don’t know how much longer I can carry that burden, as badly as I want to and feel obligated to… This disease is slowly taking everything that I am and that I love in life. I used to be a martial arts instructor, guitarist, outdoorsman, etc. But now it’s just all I can do to get through the day and make enough money to pay our bills.

Being anyone with fibro is hard enough, but being a man with fibro is insane! Everyone thinks you’re a whiner and just looking for attention or a disability check. I stopped even mentioning that fibro is what I have going on and started calling it arthritis due to the stigma attached to fibro… This is real pain…NOT imagined! – B


Community Living/Daily Support Programs

I love your newsletter; get a lot out of it. However, I am seeking a supportive residential community of people dealing daily with Fibromyalgia and CFS. I’ve read they exist in Britain, but have yet to find one in the U.S.

Or a long-term, daily supportive treatment program that provides more than just medications and supplements. I do not have friends or family who can give me that positive boost to keep going. – Julie

Note: As a thought-starter, see the description in this issue of a support program for the chronically ill that Dr. Lenny Jason’s DePaul University Center for Community Research has been running in Chicago.


Childhood Stomach Pain

Re: “Recollection of childhood abdominal pain in adults with functional gastrointestinal disorders.”

So that’s what it was! And all the time the doctor told my mother that I was having “stomach migraines”! – JuliannaG


B-12 and Fibromyalgia …

Following are comments on the article “Could a B-12 Deficiency be Causing Your Symptoms?”

• I have fibromyalgia and have tried B-12 injections. I notice a difference of energy levels while taking it. Stopped for no reason and notice how my energy slowly decreased. I’m now starting injections again and will change to a pill form of B-12 for convenience. – Tohui

• I am glad to see this subject addressed. I have Fibromyalgia and have been getting B-12 shots once a month for several years. It keeps me from being fatigued and weak. I recently started taking B-12 supplements orally once a day between shots and it is helping me avoid the let down between shots. I also have been taking medicine for acid reflux for a long time too and have never [before] seen that related to B-12 deficiency. Thanks for this article. – franlea

• As mentioned in the article, a bacterial overgrowth will contribute to a B-12 deficiency. Dr. Pimentel has shown that most people with fibromyalgia have a bacterial overgrowth in their small intestine. The more the overgrowth, the more the pain. – Phattemer


Vitamin D – Supports Mood

Re: “Vitamin D and Mood Disorders Among Women”

I have been taking Cod Liver Oil capsules for many years now and if I run out & don’t replace them promptly it is only a matter of days before my mood drops considerably. Initially I took them as a simple and inexpensive supplement. Now I know that my body was leading me well & even though, living in New Zealand, I get plenty of sunshine, that extra Vit D & A is critical to improving my mood. I have ME & Fibromyalgia. – Suzie14


One Positive Experience With Lyrica®

Have you had any comments from people who have tried Lyrica [pregabalin] for fibromyalgia? I started on 50 mg twice a day and noticed a definite improvement within 2 weeks. I am on 75 mg twice a day now and am doing well. I just wanted to get the word out to people who are suffering with acute pain like I was. I am happy to say the pain is minimal now, although weather changes still affect me terribly but now are manageable. I realize I am not cured, but I do have a better quality of life. – Judy


Plans at UC San Francisco, Great News for PWFM & ME/CFS

Re: “UC San Francisco to Launch Center for Viral Diagnosis & Discovery in Early 2009”

When I was hospitalized for encephalitis the doctors tested for everything under the sun, except for what I had – EBV & HHV-6. It seems like physicians should know from their training what viruses cause encephalitis, but evidently enough don’t so this will be useful.

But even more relevant is the Viro-Chip [this center will be using] which should be able to tell us exactly what viruses are involved in ME/CFS or FM, and whether they are new or not.

What is exasperating is that the Viro-Chip is being used for diseases like SARS when there are 1-4 million people in this country suffering from CFS and 10-15% of patients have chronic viral infections.

Get CFS and FM patients in there and start testing them! Let’s find out what we’re dealing with so that we can finally get treatment!br />


Disability Hearing Judges’ Records

For what it’s worth, if you’ve been assigned a judge for an upcoming hearing, you can find his record of denials and approvals at:
– no matter what part of the country you’re in. – Victoria


Lyme Borrelia Cause of My “FM” & “CFS”

Re: Dr. Mark Pellegrino’s article: “Infection as One Possible Cause of Fibromyalgia”

How come the author doesn’t mention Borrelia as a pathogen? It’s the most obvious one but since there is no accurate test for it we will continue to suffer. 80% of people were misdiagnosed with CFS and FM on Lymenet BEFORE finding out they had Lyme disease. After 2 years of long term Abx therapy I no longer have any FM or CFS symptoms. – munch1958br />


Dairy Caused Fatigue

All my symptoms mimicked CFIDS and fibromyalgia for a long time. It seems as if I am cured? I first thought it was wheat, so I eliminated that. I know now for sure that it is dairy. It’s been two weeks and my post exertion malaise is completely gone. I have not been able to clean my house and now I’m able to clean my house without fatigue, and exercise as well. All my other symptoms seem like they’re improving. I am very grateful I have found what has been making me sick for a very long time. Not being able to do anything without fatigue was the most depressing thing.

I just don’t understand how dairy products can have such a debilitating effect on one’s body. It’s very hard for me to not do any dairy because it has always been my favorite – but it’s worth it to not be so sick! I would suggest anyone, if you suspect food allergies as your cause for illness, to eliminate top allergens from your diet.

My diet now consists of vegetable juices, vegetables, raw nuts and seeds, fruits, some grains, beans (little fish, chicken and turkey). – Deblin


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

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