From Our Readers – Comments & Suggestions 05-11-11

Finding the Gluten in Foods Is Key Celiac Challenge

Re: “Gluten free but still feeling ill? Here are some answers.”

The most difficult thing about a gluten-free diet is FINDING the gluten in foods. The labeling is confusing, and much gluten is hidden in the ingredients. For example, who would think that soy sauce is a big gluten criminal? When looking at the ingredients, you see: Water, Wheat, Soy. So, if you’re trying the gluten-free diet without much success, perhaps you aren’t getting rid of all the gluten after all. Changing to a Caveman (Paleolithic) diet for 3 weeks can be life-altering. Meats, nuts, veggies, fruits: that’s pretty simple. Also, if you have gluten-intolerance, you probably have other intolerances too. An elimination diet might be the ticket there…. [see for example Blake Graham’s article, “Elimination Diet for Those With ME/CFS or Fibromyalgia.”] If you feel much better and with more energy at the end of 7 days, then you likely have multiple food intolerances. Add back the foods one at a time, even the ones you’re sure are okay, because the sure-foods are the most likely intolerant foods. My current intolerances (which rotate from time to time) are gluten, corn, onions, grapefruit, MSG, and green peppers. Check it out for yourself. – S


Dealing Well with Fibromyalgia Pain While Traveling

Seen on the excellent ME/CFS Australia (SA) Inc. news site, which also covers FM and MCS: “How to Ease Fibromyalgia Pain When Traveling.” – G  

[Note: See also, “Printable Medical Forms to Carry In Case of Emergency Away from Home.”]


The US Opioid Risk Mitigation Crackdown vs. Chronic Pain Patients

Re: “Impact that government efforts to reduce prescription drug abuse may have on chronic pain patients,” by Karen Lee Richards

People who are diverting prescription pain medications are not people living with chronic pain! Even doctors who know the difference very well may be influenced by this crackdown, and reducing our ability to get needed help won’t stop the illegal drug trading problem. – T


Lives of Pain Patients – Awareness Videos

The site collected these video testimonials of people with different types of chronic pain, to help build awareness of what it is to live with pain. – H


Sleep Position & Pain 101

A short YouTube video on proper sleep position to help reduce risk of morning headache, neck and shoulder pain (Sleep Position 101). – L


Gentle Stretches and Back Pain

Here’s another short YouTube on “stretches” that even I can do to take the pressure off low back pain – and maybe more important, what we should NOT be doing (“Two Gentle Stretches to Help Back Pain Fade Away”). – L


Op-Ed – Not All Activism Is Necessarily Helpful

In the cinematic realm, good intentions are always rewarded. Real life is less forgiving than cinema. In real life, a poor strategy may be well-intentioned, but such strategy may still hurt vulnerable people  – deeply and irrevocably.

Several actions by a small minority of the CFS community are hurting vulnerable people. Like most strategies, their actions may be well-intentioned. Through their efforts, this minority may feel an emotionally cathartic release and empowerment. Yet, the best of intentions won’t keep counterproductive strategies from hurting families affected by CFS – all of us.

I love this community. Like each of us, I have suffered and experienced great loss as a result of this biomedical illness.  But counterproductive efforts compound that loss. To stand by and say nothing is to idly watch damage being done.

What strategies am I speaking of? (Click Here to Read More)

Craig Maupin at The CFS Report, May 8, 2011


MD Guide on Fibromyalgia Management

Re: “Managing Fibromyalgia: Supporting self-management brings many advantages,” by Bob Kirsch – an article with guidance for physicians in Managed Care Magazine.

I printed this article out for my doctor. It verifies that “there is no longer any question about whether fibromyalgia syndrome is a specific illness – the FDA itself states that these are patients who have gone through a change in the way their brains perceive pain.” He explains some methods doctors can use to build fibro patients’ trust & respect, how to convey emotional support, and “four ways to relate to Fibromyalgia patients.” – P

[Note: There’s also a commentary & opinion piece at that takes off on the Kirsh article (“Overcoming Barriers to Managing Fibromyalgia”).]


Fascia and Myofascial Trigger Points – Source of FM Pain?

Re: “Effects of Treatment of Myofascial Trigger Points on the Pain of Fibromyalgia”

The last of my body challenges to get solved was my pelvic pain, which turned out to be trigger points… I had this recurrent severe pain in my upper abdomen which no one could figure out (endless tests!)… I went to see a physical therapist… Turns out I had trigger points in my abdominal rectus muscle (the long wide one that runs from your pubic bone to your ribcage). My abs weren’t tight in a way that made them strong and healthy but were contracted in a way that causes pain when nerves are pressed and tissues around that area are inflamed.

She was able to do trigger point release (using her hands to press on the trigger points in a way to get them to let go) and taught me stretches and exercises to do at home to prevent pain from coming back. It helped IMMENSELY.

I really want to share this experience with more people because I gained so much from finally understanding what was going on with my body. From research I’ve been doing on myofascial pain (caused by trigger points) and what’s called “chronic myofascial pain” (CMP) I think this all has a TON to do with fibro and CFIDS pain. This started in me through the first year of my illness and then has been recurrent even with the massive reduction in the rest of my symptoms.

Trigger points can cause a WIDE variety of symptoms all over the body, depending on where they are located and what nerves they are affecting. What are trigger points? Info here:

Trigger points are different than tenderpoints! More info here from Devin Starlanyl:  – E


One Person’s Sleep Recipe, After 10 Years’ Trial & Error

One thing I get is a pretty good night’s sleep. I tried so many different combos over the last, maybe 10 years, and finally found what works for me: 2.5mg Melatonin (low dose), 500mg Inositol (B-like vitamin), and usually 500mg GABA. I take this combo at about 7:30 pm – and just before I hit the pillow at about 11 pm or so, .25mg Lorazepam and now 1 Calms Forte. And I have interesting dreams….. I’m usually out like a light and usually wake up once for the BR and then again about 7:30 am or thereabouts…. – J


Recent Articles About Lyme

These recent articles about Lyme may be of interest: in a Virginia newspaper, “The Great Imitator” (explains that there are so few Lyme doctors that patients often don’t get diagnosed, and have to travel long distances to see one); and in New Hampshire, “Lyme Disease a Continuing Threat” (mentions a bill to protect doctors in the state who prescribe antibiotics for long-term effects of Lyme, to keep them from having to send patients to another state for treatment). – N


Make Provisions for Your Pets In Case You Become Ill Unexpectedly

In case something happens to you, keep a wallet card that alerts emergency responders that you have pets, and whom they should contact to care for them. There was an article in the Arizona Republic about a service that provides special pet tags and cards for that purpose too ( – T


Dizzy When Standing – Panic

Re: “Maggie’s Panic: When CFS and FM Team Up” by Dr. Bell

I have had fibromyalgia for a number of years. Lately I’ve been experiencing a change in some of my symptoms, most notable an increase in fatigue and what Dr. Bell described when Maggie was made to stand for 20 minutes. I need not be standing for this to occur, just more tired, then the blood drains from my face and I experience the other symptoms. This is resolved by lying down or resting, and avoiding stress…. – S


Information About Lab Tests Online

This site – – is hosted by the American Association for Clinical Chemistry. It is peer-reviewed and non-commercial, designed to be “a public resource on clinical lab testing from the laboratory professionals who do the testing.” There is a searchable list of hundreds of tests and synonyms, cross referenced with a list of conditions and diseases, plus tips on deciphering your lab report, information on reference ranges and what they mean, and more.


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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