From Our Readers – Comments & Suggestions 08-12-09

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This Patch Really Helps My Sciatica

Salonpas has a new, larger patch that emits heat for 8 hours and does not have a bad odor. [This patch employs capsaicin, the compound responsible for the ‘heat’ in chili peppers, which acts by depleting the nerve-inflaming irritant called ‘substance P’.] I recently went to a three-day convention and before I left I was having a bad flare-up with my sciatic nerve. I used the patch in the middle of my lower back for two days and it was wonderful. NO PAIN! I didn't have to use it at all the third day. This was three days of sitting from 9-5 with a 2 hour break and walking two blocks to the parking lot. Not something I can usually do. – P


Dr. Pall’s ‘BH4 Theory’ of Why Sauna Heat Helps FM, MCS & ME/CFS

Re: “Do sauna therapy and exercise act by raising the availability of tetrahydrobiopterin?” by Dr. Martin Pall, PhD.

I've never heard of tetrahydrobiopterin [BH4] before. I guess it's not a very widely used word. I had my Infrared Sauna set up over a year ago and read quite a bit about them. This term was omitted from everything I read. Thanks for the info! – T

I have FMS & have been having a sauna once per week for the past 5 years. I have a little home steam cabinet (it only cost $100 on ebay). I know for a fact that it definitely assisted in restoring the function to my right leg which was going "dead" & difficult to walk on when I first started saunas. After 30 to 40 minutes of sauna (depending on the weather!) I get straight into a bath using a "bubble mat" plus one cup of Epsom Salts – it is wonderful – like having your own personal masseuse. I always feel so refreshed, relaxed & energized at the same time – highly recommend it. – F

Does this include the "dry heat" saunas that are on the market? I've used them and think they are wonderful, so I would like to know if they will produce the same results. – D


Sister Says Gluten Sensitivity Causes FM-Like Symptoms – I'm Skeptical

Q: I was just diagnosed with fibromyalgia and have just started treatment. My sister said she was told she had it but she cut gluten out of her diet and her symptoms disappeared. Is this possible? Can food allergies or intolerances really cause symptoms of fibromyalgia? I am skeptical to say the least because fibromyalgia is the first thing that has made sense of my many symptoms and chronic pain, but my sister is pretty insistent. What do you think? – L

A: Celiac disease is really an autoimmune disorder involving genetic susceptibility that is present in about 1% of people in the US & Europe. Symptom onset can occur at any age and apparently is often triggered or worsened by a physical or emotional stressor. Some believe today’s diets including more-refined gluten-containing foods explain a greater incidence rate. A lack of awareness/testing in the medical community until recently has allowed most people suffering the many symptoms of this illness to go undiagnosed.

Over time the disease damages the small intestinal villi needed to absorb nutrients from food, so multiple serious nutrient deficiencies develop that put patients at high risk of developing a multitude of ailments – including almost everything associated with fibromyalgia. And if untreated it shortens patients’ expected lifespan. For more information, see Frequently Asked Questions at the Columbia University Medical Center’s Celiac Center.


“Unsafe Food/Ingredient List” and “Safe Food/Ingredient List” for Celiac

In addition to wheat, other grains that have gluten are barley, rye and (in the US) oats. For a link to an “Unsafe Food and Ingredient List” and a "Safe Gluten-Free Food List (Safe Ingredients)" click here. The lists are extensive and helpful when looking at items with many ingredients. – E


Also for Celiac Patients – Website Offers Info on Drugs that Contain Gluten

I have celiac and had to find out the hard way that one of the drugs I was taking contained gluten. This is a website recommended to me by a rep from the FDA ( It lists all the meds ingredients including gluten. Hope this helps. – M


For Painful Bladder (Interstitial Cystitis)

I highly recommend this book, Solving the Interstitial Cystitis Puzzle, by Amrit Willis, RN. It has over 300 pages of self-help ideas to reduce your pain & suffering. – S

There is an excellent forum called IC Network run by nurses – B

I drink lemon in water or eat lemons all the time [for bladder pain] and that really helps. Lemons are very acidic but they alkalinize the body when ingested. Same with Limes. – T

The pH of urine in IC can vary. Some have already alkaline urine (which can also irritate the bladder) & some have very acidic urine (obviously corrosive). And then there's the theory that alkaline urine results from the body's attempt to alkalize acidic product from the kidney. That way some of us get burned twice. Some people are helped with the acid/alkaline theory, but not everyone responds & some people may worsen when implementing that idea. – S


Useful Diet Guidelines for Fibromites

Re: “Why Weight Gain is a Problem with Fibro, and What to Do About It,” by Dr. Pellegrino.

…A useful summary of diet details that persons with FM should be aware of. One new suggestion to me was the ingestion of the protein food first when eating a protein/carb meal. Overall, a good summary to have on hand when a Fibromite is feeling in despair over weight gain and their diet, because the review of the basics can help to restore a sense of control over one's life; being that loss of the sense of control over our bodies is one of the great sources of distress of FM. – S


Preparing for MD Appointments WILL Help

Re: “Improving Patient-Doctor Communication” by Karen Lee Richards.

…Bottom line: These preparatory plans WILL make for a better appointment and better long term outcome. I recalled the times I had been a less than civil patient. Those times I was unable or unwilling to prepare as you suggested, my appointment and care were unsatisfactory. It's not always the caregiver’s fault. And to be completely honest, it's not the much maligned (in my case) insurance carrier's fault when our encounters with medical providers are negative. We, as Fibro's, can be a surly lot. My own PCP has told me there are patients with Fibro that he “dreads,” yes he used that very word, to see. …I had to come to a place of admittance that I have a responsibility to do all I can as a patient to foster a positive relationship.

I think this advice would be especially helpful to the newly diagnosed and overwhelmed Fibro sufferer. – W


FM for 42 Years and Haven’t Found Adequate Doc Yet

On the MD communications article… I've been mentally and verbally abused by quite a number of physicians who are supposed to be helping me and getting paid quite a pretty penny for doing so. …Twice when I went into docs’ offices and before I said a word, the doc said, “I don't give out pain meds.” Are you kidding me? If I didn't have pain meds I'd be in the hospital almost daily looking for help. It’s easier to get drugs off the streets for that matter. I've had fibro for 42 years, and I try to keep my complaints to myself. Having gotten worse over the years (and yes, doctor, it is a progressive disease, duh), I need all the help I could get. But after all this time, I still haven't found an adequate doc. – J


The Many Symptoms of Omega-3 Deficiency

Re: “Essential Fatty Acid Deficiency – Signs & Symptoms, Treating vs. Testing,” by clinical nutritionist Blake Graham.

Good information on fatty acids. The article by Dr. Leo Galland [to which the article links] is also fascinating, particularly the case studies. These show highly individual reactions to essential fatty acids (EFAs). It appears to be very worthwhile to find the best combination for each person. I really don't have the money to spend on more testing, so will start with the self-treatment approach which Graham discusses here. One thing – adding large doses of oils to the diet may trigger diarrhea. Some of us may need to start gradually.

Note: See also the article titled “Cardiologists conclude omega-3 fish oil’s heart benefits justify recommended daily intake guidelines”


I Disagree with Article Disputing Chiropractic’s Benefits for Fibro

Re: “Chiropractic treatment for fibromyalgia: A systematic review”

I do not agree at all with this article. After going from doctor to doctor, physical therapy for years and years, the only thing that has given me back some of my old self is chiropractic treatment. Sure there are good chiropractors and bad as well as good medical doctors and bad. I found a good chiropractor and he has made a huge difference in my everyday life. – G


Adverse Effects from Taking Levaquin Just Might Point to Lyme

A reader recently posted his story of adverse effects from taking the antibiotic Levaquin. Levaquin is a Bartonella drug. The symptoms he mentioned reminded me of Bartonella symptoms – a tick borne disease. Bartonella can give foot and heel pain among other symptoms. These symptoms could possibly become worse upon the use of Levaquin.

I realize Levaquin has its own known adverse effects. [But] Many with Lyme disease have greater symptoms after taking or starting antibiotics. I hope this reader has seen a good Lyme literate medical doctor (LLMD) to have themselves tested for Lyme and other tick borne diseases. A Lyme literate doctor is suggested, as testing for Lyme is not straight forward. I, myself, was misdiagnosed for 8 years with FM and CFS, but I really have Lyme. – N


Vitamin D Supplements – In My Case, Slow Build-Up Was Needed

I was blood-tested for Vitamin D, and my levels were low. So, I bought a high dose Vitamin D3 supp (2400 IU). I took it the first day and was fine, but then I had a huge migraine the next day that would not respond to medications (that doesn't happen to me). Since I only add one new thing at a time to my regimen, I stopped the D3 to see if the problem went away. It did. A few weeks later, I tried again, with the same results. Instead, I bought 400 IU capsules and slowly worked my way up. I got up to 1200 and started having trouble with the migraines again, so I dropped back down to 800 IU each day. This seems to work.

So, moral of the story is that you may have to start this SLOWLY. Get the 400 IU capsules, and take ONE for a few days, then add the second one for a few days, etc., and watch your symptoms. Good luck everyone! – S
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 condition, illness, 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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One thought on “From Our Readers – Comments & Suggestions 08-12-09”

  1. satin5552000 says:

    i have fm for about 14yrs it is a real bite no beleveis you when you say you are in pain from morning to nitebeen to so many doctors either drug you up you cant get out of bed in so much pain family doctor does not belevie in it so what do you do i am 59 can not bear toget up every day if some is getting help with there fm please e-mail me what you do to get throw a day
    ty please

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