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From Our Readers – Comments & Suggestions 11-17-10

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Dr. Black on Generic Drugs

Here's some helpful advice on generic drugs that Dr. Black (Dr. Lapp's partner) posted a while back on the Hunter-Hopkins Facebook (www.facebook.com/HunterHopkinsCenterFans) – J

"…when you get your meds filled with generics, be sure to note the manufacturer brand, and then pay attention to how it works for you. When you find one that works better than the others you can have your prescription filled "Dispense as Written – no substitutions” with the generic med that works the best for you, and still pay the generic price. This is particularly important for the psychoactive and narrow therapeutic drugs (antidepressants, antiseizure meds, thyroid meds, benzodiazapines, etc.) which can all act very differently, according to additives, fillers, among other factors such as absorption rates, etc. In order to be approved by the FDA as a generic, the actual content of the drug can differ by 15%! – Laura B Black


Skipped My Magnesium – Big Mistake

I take a magnesium supplement called Natural Calm, every early evening and just love this stuff. Lately, I have been batteling a slight case of bronchitis and instead of going on antibiotics, which always make me worse, I bought a bronchitis tea from the healthfood store and have been sipping that for 2 weeks.

Well, this stuff works very very well. My congestion is way down and my cough has disappeared almost entirely and at least I feel better that way. You have to drink the tea for a while for it to work, so I was ignoring my magnesium and just didn't take it. Wow, what a big mistake, I was extra achy and in more pain, my sleep wasn't as good, and I scheduled an appointment with my massage therapist thinking that it would help, it didn't.

When I went for my appointment last week, she commented on how extremely sensitive I was. Usually, I am always a little sensitive to massage, but it does usually help me, not this time. She is aware of my FM, and she asked me if I was doing anything different, I just told her that I wasn't taking my magnesium for two weeks. She happens to think magnesium is great for FM patients and she almost yelled at me for not taking it.

At first, I thought maybe it was the bronchitis tea that I was taking that caused me to be more in pain, since I'm so sensitive, but I really do not think was it. I started again with my usual dose of magnesium (about 400 milligrams) a few days ago, and am better, not as much pain. It is always trail and error with FM. I will be mixing my drink of magnesium pretty soon for the night.

PS: The bronchitis tea is from a company called Bell Lifestyle Products and the tea is simply called Bell bronchitis tea…. I'm sure you can order it on line, or [your health food store] can order it for you. It works like a charm…. I do have to warn you, the stuff smells like dirty socks, LOL. It does take some getting used to….  – C


Terrific Letter "To Those Without Invisible Disabilities"

Another gem from the Hunter-Hopkins facebook. The author is Sally Sands, and she gives permission to copy it & give it to relatives, friends, workmates, or anyone you'd like to share it with. – J

"Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real. Most people don’t understand much about these disabilities/diseases and their effects, and many of those who think they know are actually misinformed. In the spirit of informing those who wish to understand …These are the things that I would like you to understand about me before you judge me." To read the rest, click HERE.


Family Caregivers Website

It’s caregivers’ month, and the National Family Caregivers Association website (www.thefamilycaregiver.org) has a lot to offer all of us who need help and a friendly ear. There’s a free e-newsletter, and you can look through back issues for leads on helpful resources and articles (like “Tax tips for Family Caregivers,” "When Your Loved One Isn't Very Lovable," links to video clips, a guide for finding a support group, and info about the VA’s programs for family caregivers). Check out "Tips and How-To Guides" and there’s a national network of volunteers in 30 states who will gladly help you get the info and support you need.  – W


Bee Stings and Joint Pain

I found a link on About.com to a website (http://www.beewelltherapy.com) about how bee venom helps some with arthritis (they call it "apitherapy"), and thought it was interesting & I'd like to learn more. There's a video and some other information – including a SERIOUS warning that many people are allergic to and can die from bee stings, so like they say, don't try this at home. – H


Don't Ignore Dry Eyes

I have an eye doc who is always on the cutting edge and he has the latest equipment. He just got a gadget which allows him to measure eye dryness. He also uses drops which show him what kind of dryness is taking place.

My tear ducts are wide open but the oil glands in my eyelids are not secreting the oil which prompts the eyes to make tears. This impairs the feedback to the brain which would prompt it. If left untreated, this situation can eventually cause real problems. Mine is mild to moderate so I'm thankful it was found early on.

Before we consider eye drops, I am trying 2000 mgs. of pharmaceutical-grade fish oil pills. Twice a day, I have to put moist heat packs on my eyes, and then massage the eyelids. I moisten a wash cloth and heat it in the microwave. I have a sock filled with rice and I heat that too. I put the sock on top of the wash cloth for 3 to 5 mins. on my eyelids.

It's very soothing. Then, I massage the lids and put the heat back on for just a bit. I'm noticing a difference in how moist my eyes feel. I feel truly blessed to have this doc who is so up to date and conscientious. – M


Check Out The #mecfs Daily – Twitter News

This daily Twitter news site, at http://paper.li/tag/mecfs is published every day. It is a newspaper built from all the articles, blog posts, videos, and photos shared on Twitter using the hashtag: #mecfs – and features a few of the most interesting. You can ask them to alert you by email when the paper is updated. – S


Celiac Chicks Site Helps Locate 'Safe' Restaurants in US

Here's a fun website (http://www.celiacchicks.com) with handy information for all people who are gluten intolerant. It lists gluten free and gluten-free-menu restaurants and bakeries in every state, has all kinds of recipes, news about products and unique opportunities like gluten free group travel adventures, and lots more. You can submit and comment on posts. Check out the archives too. – P


NIH Makes Major Investment in FM Cognitive & Emotional Training Trials

Re: NIH Invests $3.4 M in Michigan Team's Fibromyalgia Research – Recruitment Begins Feb 2011

I can't believe NIH funded this with XMRV and variants implicated in FM as well as ME/CFS! So much for the new SEP [grant review process] at NIH. – V

Review by a SEP is only the first step in grant approval, so I doubt the most recent SEP had anything to do with this. In addition, researchers don't have to go through the SEP. They can ask for an NIH Institute or Center to review their proposal. That's what may have happened here. The researchers may have gone directly through the NIAMS, the National Institute for Arthritis and Musculoskeletal and Skin Diseases. I'm not saying this isn't a collosal waste of money. I just want to point out that the latest SEP panel really is good news. – M


FDA OK's Cymbalta for Joint and Muscle Pain

Re: FDA Approval of 'FM Drug' Cymbalta Expanded to Cover Chronic Joint & Muscle Pain

According to the news release from Eli Lilly, 30 million people in the US have used Cymbalta (I assume many millions are taking it for fibromyalgia symptoms), so now add to that millions with arthritis and lower back pain. Quite a market. – S


Here's a Really Helpful Cleaning Tool

When I find things that have helped me or made my life better, I like to share. Most of us have unique problems and every once in a while, something comes along which really saves my poor old bod and energy level.

One day as I was trying to scrub mold and hard water residue from my bathroom, I thought how wonderful it would be if someone would invent a power brush, kinda like a battery-operated sonic toothbrush but larger for cleaning. Lo and behold, I found such a tool at the grocery store. It's sold under the Scrubbing Bubbles brand but is actually made by a different manufacturer. It's called the "Scrubbing Bubbles Sonic Scrubbers Power Cleaning System."

The basic handle comes with one brush and a little pointy rubber brush. The little pointy brush gets into the tightest corners of the shower. I got the extra attachments which included two brushes and a scouring tool. One of the smaller brushes is perfect for under the toilet bowl edge. I keep it apart in the bathroom and all I use that one for is the toilets.

Bottom line is that it takes a fraction of the time to clean toilets, tile and tubs. I don't really scour pots and pans so don't use the tool in the kitchen. My tub has those little strips of non-slip material and they always look grimy. The brush cleaned them better than anyting I have ever tried. The best part is that it takes no pressure nor moving one's hands to clean. The tool does it all.

There is an extension handle which is difficult to find. I want it for the tub so I don't have to kneel down to clean. It's not just the kneeling which is so hard; it's the kneeling and then twisting, reaching and scrubbing which is the killer. I ended up ordering the handle from Amazon. Even with S&H, it is probably about the same cost as it would be at the store, if I could find one in a store. I looked everywhere.

Even when I got well enough to go to work part time, it was still a HUGE challenge to keep my place clean. When I wasn't working, I was resting so I could go to work again. Now that I'm in a relapse, but not as bad as 10 years ago, I'm again looking for easier ways to clean. Hmmmm, I wonder whether the battery in my old Romba will still take a charge.

I also recently found a Hoover floor scrubber with a row of brushes. It dispenses whatever cleaner I want to use, scrubs the tile floors, and then sucks up everything. It leaves the floors sparkling and dry. Still, the Romba would be nice to clean up dry dirt and lint in between. That Romba saved me when I was bedridden most of the time ten years ago. But, I digress… Just wanted to share some info that might be helpful. – M


Gluten-Free Flour Guide

Dr. Scott Olson has posted a Gluten Free Flour Guide on his website (http://olsonnd.com). It lists 17 different flours with photos and links to sites with good recipes and sources for flour. In addition to well-known almond and rice flours, I didn't know there's also chestnut flour, coconut flour, and garbanzo bean flour, for example. – T

Note: This information has not been reviewed by the FDA. It is generic and anecdotal and is not intended 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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