Letters From Our Readers – What Works for Me 2-21-07

Bring Back the Waterbed

Just read the letter from the person who found the heating bed pads to be a blessing. I have found another bed blessing. My husband has restless legs syndrome and I have FMS & CFIDS, so we both have a very hard time resting, getting adequate sleep, and keeping warm… We decided to check into the old fashioned waterbeds. We had one 20 years ago, but no one carries them anymore. Finally we found a waterbed kit, and my husband made a plain-Jane frame.

We set it up, turned up the heat, and oh my goodness! What a relief! It's soft, comfy, and warm, and we are actually getting a few hours of sleep. When I'm feeling extremely achy, I lie under the covers just to have the heat. Maybe this "old product" can have a renewed use for some other FMS/CFIDS patient. – Sandi


This Test May Help Others

For 13 years doctors told me I had Fibromyalgia…Over the years I tried every cure, from vitamins, pain killers, new mattresses, therapy (mental and physical), and massages to protein drinks and special Fibromyalgia medicines. Doctors had me hooked on lethal amounts of OxyContin® and Soma® [prescription painkillers]. And none of it worked.

That is, until I met a holistic doctor who understood hormones. Once he took my blood and had it tested he found there weren't any measurable amounts of hormones in my system and prescribed me a natural hormone regimen… Within six weeks I was 80 percent cured of my physical pain. Ten weeks in I felt like I was 21 again.

Now I walk four miles a day. I stopped smoking and I feel better than I have in years, all due to the hormone therapy. Maybe between having a strong will to live a better life and the hormones, I was able to get where I am today… So women and men out there who are tired of being tired, go get your hormone levels checked just to be sure that hormones aren’t the problem… – Relieved and Happy


Pain Doctor Aided Sleep & Even Dreams

About two months ago my pain management specialist started me on Topamax® [anticonvulsant] for my extreme leg pain, which keeps me awake at night. I take several medications for my legs at different times of the day…then at bedtime I take 100 mg of the Topamax®.

The best part is I think I may have hit on something good. Not only am I getting better pain relief, but more important, for the first time I am able to sleep! As with any medicine, it takes a few minutes to start working but when it finally does I dream! There are nights when the FM is so bad I have to get up after three or four hours and take a Loritab® [codeine-like pain reliever] but I am able to go back to sleep. This is a first for me and I want to pass it on. Maybe someone else can be helped too. – Barbara


Lyrical About Lyrica®

I have been so very discouraged with my Fibromyalgia for so many years that I'd given up all hope of getting any relief from pain that seemed to be worsening over time… About a month ago I had a routine appointment with my rheumatologist. Instead of seeing him, I saw the new nurse practitioner. She was awesome! She put me on Lyrica® and within a day the pain was lessened.

I'm taking it three times daily, have no noticeable side effects, and am taking very little of the pain medicine I'd been taking every four hours before. If the Lyrica® hadn't worked my next step was going to be heavy-duty narcotic pain meds. But Lyrica® worked!

I won't say I'm pain free. However, the pain level is usually tolerable. When it's not, just one dose of pain medicine a day usually takes care of it. I had read that this drug was being tried successfully with some Fibro patients. I'm just thankful to the Lord that I'm one who has success with it. – Mickey

Note: Lyrica®, or pregabalin, is a drug that “lowers the number of electrical signals in damaged nerves” and was designed to treat diabetic nerve pain or pain after shingles. Our archive includes abstracts of several recent pregabalin trials for Fibromyalgia symptoms, such as “A Six-month, Double-blind, Placebo-controlled, Durability of Effect Study of Pregabalin for Pain Associated With Fibromyalgia,” http://www.immunesupport.com/library/showarticle.cfm/id/7521


Food as Medicine

I have been researching the concept of “Food as Medicine” for nearly 20 years and have concluded that different foods have a great impact on my mental & physical well-being. In mid 2005 I had a three-month remission from chronic pain, lethargy, & IBS by following a strict grain free (including rice and white potatoes) diet.

I have followed a 97 percent dairy free diet for nearly 20 years and have tried to avoid wheat most of the time also… I also changed my multi-vitamin to a vitamin/herb blend that had a few more therapeutic ingredients, continued my long-term intake of a complete calcium supplement, and doubled my intake of pure salmon oil.

I was finally diagnosed with Fibromyalgia in May 2006. Three weeks ago I re-started the grain free regime and have improved dramatically with pain, lethargy, and mental clarity (once again). I don’t know how long I can keep it up, but if I can get over the cravings and maintain the willpower socially to say “No, thank you” when offered food from my forbidden list, I should be ok.

Do any other CFS or FM patients have any success, or dramatic improvement with their symptoms following a simple thing such as changing their diet? If so, I would very much like to read about their experiences. – Victoria

Note: Many patients report that diet changes have helped. You can read some of their stories on the ImmuneSupport.com message board under the topic, “What Works For Me.” See also the Elimination Diet that Clinical Nutritionist Blake Graham outlines for patients with CFS, FM, and other chronic diseases, at http://www.immunesupport.com/library/showarticle.cfm/id/7689


Thank You for Helping Me Help My Son

It has been a blessing to have access to the information you provide while treating my 12-year-old son who has Fibromyalgia and Chronic Fatigue Syndrome.

The range of topics and articles regarding these illnesses is mind toppling at first. However, it fully describes the aspects to which one should apply for treatment. After 20 months of intense vitamin and physical therapy, my son has recuperated from a severe form of these illnesses. He was wheelchair bound for 10 months… Today he is swimming, riding a bike, and preparing to go back to school. Thank you for providing us with the material for [help] and hope. – Stephanie


Note: This information has not been evaluated by the FDA. It is not meant to diagnose, treat, cure, or prevent any illness, condition, or disease. It is very important that you avoid making any change in your healthcare plan or regimen without researching and reviewing it in collaboration with your professional healthcare team.

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