Letters From Our Readers – What Works for Me 05-28-08

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Gluten Allergy Discovered

I had “irritable bowel syndrome” (IBS) for years and was told through tests with a doctor that I did not have food allergies. It seemed every time I ate, I was sick 20 minutes later. I went to [a doctor] who specializes in Fibromyalgia who sent me to a naturopath who diagnosed me with gluten allergies. It was diagnosed through hair, skin and blood. I feel so much better and wonder how many suffer this horrible allergy and it is not getting picked up. – Agnes

Note: Her “gluten allergy” may be celiac disease (see Columbia University’s Celiac Disease Center website for more information about this). Celiac disease is in fact “one of the most common genetically based diseases that physicians will encounter” but owing to lack of MD awareness has been vastly underdiagnosed. The “gold standard” celiac test has been small bowel biopsy, but recent research in the UK indicates a preliminary blood antibody test could avoid biopsy in a majority of suspected cases.



New Zealand Patient’s Solution

I live in New Zealand and have had FM for about 6 years. The best relief I have had is with Neurolink and homeopathy. I just thought I’d share that with you. – Karalyn

Note: We visited a Neurolink website, which indicates their protocols somehow use muscle tests to “assess and address the neurophysiological function of the muscular and glandular systems” to focus on “causes for complaints and not the symptoms themselves.” In this brief search we did not find references to journal articles/clinical trials or a technical explanation of how exactly the measurements and treatments are accomplished.



‘Alternatives’ Much Better than Pain Meds for Me

ProHealth is one of the most informative newsletters today. I am a 64-year-old woman living with Advanced Osteoporosis, Osteoarthritis, Fibromyalgia and Spinal Stenosis. I have found over the past few years that a regular schedule of moderate exercise, good rest, massage therapy, and deep meditation/prayer has done more for me than all the pain medication in the world. Learning to respect my body and its limits, and trying to maintain physical and emotional balance has proved to be most successful.

Although I am no longer an active member of the work force since 2003, I have written and published my first book (Embracing Life – Living With Chronic Pain) which was published in 2005 and am currently working on the sequel, to be entitled Healing Hope.

Finally, I am the CT representative for both the American Chronic Pain Association and the American Pain Foundation, currently volunteering my time in the “Power Over Pain” program. I am recommending your newsletter to both of these organizations. – Lois

Note: The Power Over Pain Action Network involves grassroots volunteers in raising public awareness of pain issues and advancing pain policy, practice, and education. The American Pain Foundation offers a free e-newsletter upon request.



LyricaR Relieved Pain

I’d like to let you know what my rheumatologist recently prescribed for me. He gave me Lyrica for the pain [the first prescription drug to be FDA approved explicitly for FM] – I have a very severe case of FM. I am on 150 mg. of Lyrica twice a day, and I have NO pain! What a relief… It also helps with sleep. – Sandy



Hot and Cold Packs Help Pain in Different Locations

Rather than a heating pad, I use what I call my “heat bag.” I have a square one and an oblong one that I put in the microwave. It helps my knees mostly, but for some reason, I need cold on my neck.

When I have difficulty sleeping due to neck pain and feeling hot (which I think is an FM symptom) I get cold gel packs out of the freezer and place on my neck, up to and including those 2 bones at the base of the skull. These gel packs are very inexpensive. I keep half a dozen and keep getting cold ones until I fall asleep. I never thought cold would be what puts me to sleep, but it works for me! – Debi



Deep Relaxation Does Ease Stress

Re: “The Healing Power of Deep Relaxation – Simple, Proven Techniques for Calming Your Mind and Body.”

I’m delighted with the way Dr. William Collinge shines a light on how stress affects our bodies. I think one of the biggest take-aways from this article that anyone can remember is this: “As long as your mind is busily engaged, your body is unable to totally relax. Every thought and feeling that passes through your mind has an effect on your body and its chemistry, however subtle.”

I work with clients challenged by stress and illness and have found that the majority have no idea what true relaxation looks or feels like. Many of Dr. Collinge’s exercises are similar to exercises I train my clients to do. I have seen profound effects from deep relaxation exercises where the body and mind refrain from busy activity.

We live in a society where stress is the “norm.” I often find that it takes an illness to get some people to the point where they choose to make lifestyle changes that refrain from stress inducing activities, thoughts, feelings, and behaviors.

Stress reduction is something we can all accomplish. I find that practicing three relaxation techniques a day (like the ones William mentions in his article) work wonders for my clients and myself. The truth is, if we hold ourselves accountable to practicing these techniques and skills daily for just 15 minutes at a time, the benefits we will reap are astounding.

Ask yourself; “Is 45 minutes a day of engaging the relaxation response doable for you?” Everyone can carve 45 minutes out of their day. I think you will also find that doing so will create time, focus, and the energy you crave to get everything else done. – Diana



Natural Laxative for IBS

Re: “Irritable Bowel Syndrome (IBS) Concurrent with Fibromyalgia – Surprisingly Frequent.”

This is a very important article and was very well presented. It covered the multiplicity of causes, symptoms and possible aids. I currently am treating my IBS by making sure I get a good measure of fiber, usually through fruits and veggies, and by monitoring my bowel activity. I never allow more than 24 hours to go by without using a natural laxative to help me obtain a regular bowel movement.

I find that motility is more problematic than anything else. I’m hoping that these studies will lead to a more helpful way to control IBS for Fibro patients. – moineau



TENS Has Been Lifesaver for Neck & Shoulder Pain

I have recently added supplements to my daily meds. I noticed a difference right away on the first three:

  • CoQ-10
  • Probiotics
  • Green Tea Extract
  • Grape Seed Extract
  • Vitamin D
  • Malic Acid 825
  • Vitamin C
  • Vitamin B Complex & B-12
  • Ginkgo Biloba

I have also heard some good things about drinking green tea, so going to try that also.

My TENS unit is a lifesaver when I am really hurting. It works great on my neck and shoulder pain. I can hook it up and you can hardly tell I have it on. – springfling

Note: TENS stands for Transcutaneous Electrical Nerve Stimulator. It produces low-intensity electrical impulses that stimulate nerves to block pain through unbroken skin. A recent review in the journal Pain concluded “it is an effective treatment modality for chronic musculoskeletal pain.”



Pain Dissipated with Yoga

Yoga has been extremely beneficial to me. I am 55 years old and began last fall. My pain dissipated within a couple of weeks. Unfortunately, it just returned when I was put on Red Yeast Rice Extract for high cholesterol. I was happy to take that instead of Lipitor because I’m aware of the side affects of statin drugs.

As soon as my muscles aches, pains, and twists returned, I went off of it, but it’s been a couple of weeks and it remains. I continue with my Yoga, which always helps, and the Malic Acid seems to be helping along with magnesium and CeladrinR. Celadrin cream works wonders for me. It can take the pain away (in my knees) in 5 min, so I can return to sleep. Not only is it a supplement, but the skin cream is proven to penetrate the joints and lubricate them. Other ingredients cool the area and topically, it feels better quickly. – Debi



This Combination Really Works for Me

The best thing for me was attitude: I try to do things that are meaningful even if they make me tired. Better to live your life tired than just to sit around. I try to stay engaged with my life and with people.

Next best: Naps, naps, and more naps. Also resting, or lying prone on the couch. And no, they do not affect my nighttime sleep. They help me to sleep better.

Then: CymbaltaR is a great antidepressant. It helps some with pain. LyricaR is good too, and helps (some) with migraines.

Supplements: Vitamin D in large doses, helps with foggy brain, and neuro symptoms. Magnesium helps with painful legs. Probiotics and inulin fiber [considered a “prebiotic” – beneficial for probiotic activity in the intestinal tract] help with digestive troubles. Colloidal Silver helps sinus infections and sore throats.

Exercise is overrated. I try to exercise to lose weight, but always feel completely wiped out afterwards – even after swimming. What is much better for me is stretching and yoga. Also physical therapy, although my insurance stopped paying for it. – luvdogs


Note: This information has not been evaluated by the FDA. It is generic 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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2 thoughts on “Letters From Our Readers – What Works for Me 05-28-08”

  1. j13 says:

    I’m new to the message board and as I read over the posts today it struck me how differently each of us deals with FMS which I’ve had for 40+ years. For example, gingko biloba works for one – gives me a gigantic headache. Malic acid, ditto. Cymbalta had side effects,no benefit. I rely on magnesium, CoQ10, Omega 3, and a variety of food supplements. My cabinet is also full of food supplements that made me sick. I agree exercise is over-rated as it always causes a flare-up afterward, sometimes severe tendinitis. Stretching is wonderful. And there’s always rest/meditation as my absolute necessity. To sum up, I don’t think the FMS is different, but our bodies certainly are. It’s interesting to read about everyone’s experience.

  2. lakerce says:

    I also bought this supplement when I was told I had high cholesterol. When I researched it on the alternative medicine website at “about.com” I found that this supplement no longer contains the necessary cholesterol lowering ingredient. You may want to research this. Thanks

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