BlogHer - CFS - Comments

Doctors could cooperate.

Wilma Ham — Sun, 02 Nov 2008 14:40:56 -0600

How wonderful to have found a doctor who is actually cooperating with you and of course I am sorry that it still leaves you in pain.

I have always found it strange how doctors have willingly taken over our own healthcare.
That is a lot of responsibilty that they actually and obviously cannot handle.

Why not make a model that includes us and other practicioners together?
How can they know it all on their own?
And they are only trained in looking at health in a certain way and that way hardly ever includes food or other alternative methods of looking how the body, mind and spirit works.

I love the internet and all the information that is available, At least we now have a way to reclaim that responsibility for our own health as we can have access to all that no longer sacred medical knowledge and other people who are dealing with the same issue.

Best wishes,

Wilma

www.wilmasblog.com

Thanks for linking to me

LittleMiss — Sun, 02 Nov 2008 12:34:34 -0600

Hi Catherine,

First, thanks for linking to my blog. I haven't updated there in a long time, not because I'm well, but because it seems my fibro had been in remission for quite some time or the symptoms were so mild they weren't at the forefront of my mind. So there is hope. Until this last week. I had a nasty flare up, but I'll blog about that shortly. I sure know waht you mean about the flare up after hitting the tender points. Ouch. I'm sorry you have fibro. I do think there's something about the nutritional aspect triggering the flareups, that's for sure. I'll be researching that a bit more and doing some self-testing.

Hope you are having a good flare-free day.

Claire (aka Little Miss)

Something to check

ballardia — Sat, 22 Mar 2008 23:14:51 -0500

You might consider getting an IgG and IgE blood test for food allergies. Food allergies can trigger a number of problems, including fibromyalgia.

I've suffered with joint pain and a number of other medical annoyances for years, never with an official "diagnosis". I finally resorted to getting the testing done, and discovered my body triggers a strong immune reaction to dairy products. And of course I was having several servings a day!

I'm two days in to "dairy-free"; it's a bit of a pain to adhere to, but I do feel a bit better, and anything that helps me stay off of medication is a big plus.

Fibromyalgia - help and hope - long post!

Dr. D. Light — Fri, 21 Mar 2008 00:03:08 -0500

Hello Catherine,

Wow! I just joined BlogHer today. And, this is the first post I'm responding to.

I can totally relate to where you are coming from. Approximately 5 years ago, I had a doctor in a military ER tell me 'You have something like Fibromyalgia.'. Great. I am a pre-med senior. I also have a master's of science in the field of behavioral genetics. I will state very clearly, that I could not pass any of my pre-med exams with a 'something like....' answer!

Nor, could I counsel or work with my clients with a 'something like....' diagnosis. Of course, that could be because all through my behavioral genetics program we were told 'You do NOT 'practice' behavioral genetics after you graduate and get certified. You had better _know what you are doing_!'

After several years of asking the doctors to decided "Is it, or is it not Fibromyalgia?" - if it is, then let's find out what we can do. If it isn't then let's find out what it is!

I have finally 'forced their hand' shall we say, and have an 'official diagnosis' of fibromyalgia. Plus arthritis, TMJ, degenerative disc disease (with pinched spinal nerves from L-5 through and including the sciatic nerve, migraines and tension headaches, GERD - an ulcer and a hernia, asthma and tendonitis, low thyroid, and something called Bastrup's Syndrome. (To name just a few!)

The military doctors had sent me to a neurologist for the headaches. He put me on Co-Q10, Magnesium and Vitamin B-2. He also recommended physical therapy due to the pain in my legs that felt like someone had shoved bamboo skewers between my toes, then radiated up my leg, while my knees felt they were going to collapse any second.

Back in approximately 1999, another military doctor had me have an C-scan (I think it was) on my legs. He found bi-lateral tumors in both knees, which he believed to be benign, but recommended they be followed at least every 6 months. It's been about 9 years now, and the military docs haven't done a single follow up on my knees.

Anyway - just want you to know you aren't alone. (I have also had vision problems, including amblyopia severe enough to be categorized as 'legally blind' in my left eye. (Another 'invisible handicap'.)

Now, for the good news!

Lyrica was originally developed for people who have RLS (Restless Leg Syndrome). However, I learned from reading an article in the Arkansas Democrat Gazette last year, that in studies, those who were in the study group who also had Fibromyalgia, also reported a reduction in the severity of their Fibromyalgia symptoms! Ads that are now on TV also let you know that it is the ONLY medication which has been approved for use in treating Fibromyalgia.

And no, this is not an Advertisement for Lyrica. I use it though. I'm not sure how much it has helped. I also signed up on the National Fibromyalgia Association web site. They sent me a little flyer, which was quite informative. But, their subscription/membership rates are a tad more than I feel comfortable spending at this point in time.

I too worry about the genetic implications. I have several children, and now grandchildren. Not only do women get it, but boys and men can get it too! My Mom had cancer twice, and her sister died from breast cancer. And, my Mom and both grandmothers lived into their mid to late 80's. No mention in any family history that I have been able to access, have I been aware of any one else having symptoms of this!

I often wonder if it is linked to our dietary habits, and the various pollutants we have grown up with?

Although I have plenty of 'diagnoses' which qualify me for a "handicapped" tag on my van, I thought it was interesting that my P.A. had noted 'Chronic Pain' and checked 'Permanently Disabled'.

The other things I can tell you, that I hope you will find helpful - swimming seems to help. Laughter is always good medicine. Finding something you can focus on - other than the pain, is also good. Putting a small pillow between your knees when you sleep is helpful. If you are married or in a long term relationship, a good orgasm also releases some very potent endorphins, which help to ease the pain as well!

When you hurt, STOP! Get rest. Don't apologize for your illness! Drink plenty of water, and fruit and veggie juices. Make use of the crock-pot if you have one. If you don't have one, get 1. You can cook once, and eat for the better part of the week. Soups are good too.

Do what exercises you can. (I can't do much, but I keep a small 1 lb. weight in my closet, and I do 10 reps of curls with each arm, and 10 reps of vertical stretches on each side. I try to do this every day. (I don't want 'bat wings'!) Also, when I have to use my wheelchair, I will often use my feet to propel me where I want to go. It may look 'strange' - but it is good for me to get some circulation going in my legs, without the weight pressing on the nerves in my torso as much.

I also have a few of those small 'travel pillows' (child sized) that I keep in the van. I can put one behind my back while I drive, or am being driven. I also take them to meetings with me. Some chairs and benches don't provide the support I need, in order to sit up for more than a minute or two. It may look 'weird' - but it sure beats being on bed rest for a week to recuperate!

I'm also all for 'blinging up' my 'accessories'! I have a marvelous walking stick, that I use for 'short trips' - like from the house to the driveway, or the parking lot to inside the store where I can get a motorized cart. I originally got the walking stick when I was a Cub Scout leader. I have my leatherwork on it, an Eagle symbol (Scouting), and some of my 'achievement beads' from my scouting days. I also have been adding my own 'achievement beads', some are bells! Some are just pretty pony beads, that I can lace onto the leatherwork. I don't often go anywhere, without someone commenting on how much they like my walking stick!

I also have a cherry red walker, with a seat and a basket. I use it for slightly longer walks. Not much longer, but it is a help! I'm thinking of wrapping some silk ivy along the legs, and back bar. Now, for the wheelchair - having worked with the handicapped in the past, and doing research on public relations and the handicapped, I am seriously considering 'blinging up' the chair, too! If I can get enough energy, I might even hot-glue some silk flowers to the axle where the wheels join the body, installing a kids bicycle bell on the right side, by the arm rest, and putting some pin wheels on the upper handles (where my husband or son would push me, when we need to go their speed). I've even thought about looking for some of those lights that some of the kids put on their bike spokes, and maybe even an old playing card clipped so that the spokes on my chair will make noise as I wheel around!

I know that Fibro, CFS, TMJ, and everything else can drain every speck of energy and sometimes even the goal of 'having some fun' from you. But become visible! Do what you can to get a 'Whee!!!!' - that won't hurt you even more! (You should see me coast downhill in Michaels parking lot!)

Two last things.

1 - Depression is always waiting to engulf you. Psychology is based on 'self-reporting'. The facts are that Fibro, and many other of our 'invisible diseases' do in reality change our lives, and take away many of our previous pleasures. Can't change it. All the talking in the world is not going to 'make it better'. And, a visit to Disneyworld is a LOT less expensive than the same amount of time in the hospital - and probably 10 times more healing!

2 - ANY TIME, you want to talk, or compare notes - feel free to contact me!

P.S. - The "Dr. D. Light" is a psydonym!

May your relationship be filled with bliss and delight!

I have heard that too...

Catherine Morgan — Tue, 18 Mar 2008 13:50:37 -0500

I have also heard that Fibromyalgia could be hereditary. Although, I hope for my daughters sake they are wrong about that.

Thanks for commenting...I wish you didn't have to feel my pain.

Contributing Editor Catherine Morgan
CatherineBlogs, The Political Voices of Women, Care2 Election Blog

Fibromyalgia

jdjferg3 — Tue, 18 Mar 2008 12:55:39 -0500

Hi Catherine, I know what you mean! I have Fibromyalgia, depression, and headaches. The doctors believe my Fibromyalgia was brought on by a car accident I was in - in 2005. But, my mom also suffers from Fibromyalgia, CFS, and Chronic Pain. So, I definitely a believer that Fibromyalgia maybe Hereditary.

I just want to let you know I feel your pain!

Thanks so much Jill...

Catherine Morgan — Tue, 18 Mar 2008 10:07:33 -0500

Hi Jill. Thanks so much for your comment, and for being one of the people who helped me out last week. I greatly appreciate you kindness.

Contributing Editor Catherine Morgan
CatherineBlogs, The Political Voices of Women, Care2 Election Blog

Thanks Rachelle...

Catherine Morgan — Tue, 18 Mar 2008 09:27:14 -0500

Hi Rachelle. Thanks so much for your kind comment. I'll have to check out those books. I do read a lot ( or at least I try), so recommending a book is always a welcome.

:-)

Contributing Editor Catherine Morgan
CatherineBlogs, The Political Voices of Women, Care2 Election Blog

Thanks for sharing

Jill Miller Zimon — Tue, 18 Mar 2008 07:15:58 -0500

My husband's cousin's wife as both and I met a 17 year old at the Cleveland Democratic debate who is home-schooled because of fibromyalgia. I developed TMJ in my late teens and I remember how I hated going to the doctor in my parent's health plan because he was treating me for something he didnt' think existed!

You have a lot of company and know how to make people understand what it is you live with. Thank you.

Jill
Writes Like She Talks

The Hidden Illness of Women

Rachelle Mee-Chapman — Tue, 18 Mar 2008 02:27:47 -0500

Catherine,

I'm so sorry to hear that you are in pain. I have chronic migraines and know the complexities of living with a pain condition that most people just don't understand.

A friend of mine who has rheumatoid arthritis gave me two books that helped me with the emotional & spiritual battle that comes with CFS, fibromyalgia and the like. They were--and are--good companions to me.

I know that when you are sick with something like this, everyone has a suggestion and an opinion. So feel free to completely ignore this recommendation!

Much Warmth and Good Wishes,

What Her Body Thought, Susan Griffin

Voice Lessons, and, The Bone House, Nancy Mairs

Rachelle Mee-Chapman
http://www.magpie-girl.com

Macrobiotics

Cherre — Wed, 20 Feb 2008 18:21:35 -0600

I'm super curious about the role diet plays in health and specifically chronic conditions. Jessica Porter is a macrobiotic authority who really made me think it's possible to change things around. Would love to hear more about other people's experiences. In my own life, a whole foods plant-based diet has alleviated anxiety issues, but I have no firsthand proof of other chronic illness!

Michelle
http://doesabodygood.blogspot.com

Re: Hoffman

pfuerbringer — Wed, 20 Feb 2008 15:29:02 -0600

He also has a seminar series coming up in early March (1st to 2nd) on total wellness. Dr John Demartini from the Secret will be speaking there as well. Considering he is like the Dr Oz of Canada, thought it worth mentioning as non-quacks can be hard to come by in the field of wellness. He's the real deal.

Here is a timely blog idea.

pfuerbringer — Wed, 20 Feb 2008 15:25:25 -0600

Catherine, I like your approach. I recently came across a story that disturbed me on infant toxicity in babies using baby cosmetics. Seems you have a following, so what you write will likely be looked at. I will give you a contact for an expert on the topic, as well as another story written which I think does not go deep enough.

Contact: Dr Bruce Hoffman - (403) 206-2333, www.hoffmancentre.com

Give him a call and perhaps you can put together a blog that enlightens mothers on how to avoid inadvertantly toxifying their children.

STORY: Study finds high levels of chemicals in infants using baby cosmetics

Babies exposed to lotion, shampoo and powder had more than four times the level of phthalates in their urine as those whose parents had not used the products. Previous research found that the substances altered the children's hormones.

Los Angeles Times, February 4, 2008

Infants and toddlers exposed to baby lotions, shampoos and powders carry high concentrations of hormone-altering chemicals in their bodies that might have reproductive effects, according to a new scientific study of babies born in Los Angeles and two other U.S. cities.

The research, to be published today in the medical journal Pediatrics, found that as the use of baby care products rose, so did the concentration of phthalates, which are used in many fragrances.

The lead scientist in the study, Dr. Sheela Sathyanarayana of the University of Washington's Department of Pediatrics, said the findings suggested that many baby care products contain a variety of phthalates that enter children's bodies through their skin.

Manufacturers do not list phthalates as ingredients on labels, so it is unknown which products contain them.

The researchers at the University of Washington and the University of Rochester stressed that the potential effects on babies were uncertain.

But previous animal and human research suggests that early exposure to some phthalates could reduce testosterone and alter reproductive organs, particularly in males.

The three phthalate compounds found in the highest concentrations in babies in the study were linked to reduced testosterone in a 2006 study of newborns in Denmark.

Some scientists theorize such changes in hormones could lead to fertility problems and male reproductive disorders.

Representatives of the fragrance and cosmetics industries said they were surprised by the findings and questioned their validity. They said only one phthalate compound is used in baby products, and it is found in such low levels that they doubt it could explain high concentrations found in the babies.

In the study, doctors tested the urine of 163 children between the ages of 2 months and 28 months born in Los Angeles, Minneapolis and Columbia, Mo., between 2000 and 2005. All had detectable amounts of at least one type of phthalate, and more than 80% had seven or more types.

"Phthalate exposure is widespread and variable in infants. We found that mothers' reported use of infant lotion, infant powder and shampoo was significantly associated with . . . urinary concentrations," the scientists wrote in the new study.

In the study, babies exposed to baby lotion, shampoo and powder had more than four times the level of phthalates in their urine than babies whose parents had not used the products. The highest levels were reported in babies under 8 months old, and those exposed to lotions.

Previous studies have focused on a different route of exposure for children:
sucking on soft, vinyl toys. Phthalates, in addition to helping cosmetics retain fragrance and color, are used as plasticizers in some vinyl. A recently passed California law will ban six types in children's toys and feeding products, beginning next year. But no federal or state law in the United States prohibits their use in personal care products or cosmetics.

The study is the first to report that skin transfer may be a main route of exposure for babies.

In their report, the scientists advised parents who want to reduce their baby's exposure to stop using lotions and powders unless their doctors recommend them for medical reasons. They also suggested limiting use of shampoos and other products. Many adult lotions and other personal care products also contain phthalates.

John Bailey, chief scientist for the Personal Care Products Council, an industry trade group, said diethyl phthalate, or DEP, is used in the fragrances of some baby lotions and other baby products.

But DEP is used at "very low levels, in the part-per-million range, below what could possibly account for the levels they are finding" in the babies'
urine, Bailey said. "All of the other phthalates, if they're present, have to be coming from someplace else," such as plastics or other products, he said.

Bailey said he couldn't explain why the researchers found such high concentrations in the babies that used lotions and the other products.

But he said the scientists shouldn't have advised parents to stop using them because they did not test any products and cannot prove they were the source.

"The results that are being presented and the conclusions being made don't make a great deal of scientific sense," Bailey said. "There's a lot that makes you question whether their findings are valid."

Europe has banned some phthalates in baby toys and cosmetics, but not the DEP found in fragrances.

More than half the mothers in the new study reported using baby shampoos on their infants within 24 hours of the urine tests, and about one-third had used lotion, and 14% used powder within the same time period.

No link was found to baby wipes or to diaper creams.

The highest concentrations in the babies were for a phthalate known as MEP, which comes from DEP, the compound used in fragrances. One baby had an extremely high level of MEP -- 4.4 parts per million.

Cheers,
PF

When you don't LOOK sick.

Catherine Morgan — Mon, 18 Feb 2008 18:00:14 -0600

Hi Winter. Thanks for your comment.

I totally know what you mean about people not being able to "see" your illness...In some ways it's nice that we can get through the day without everyone we interact with knowing that we aren't like them (healthy)...but then it's also frustrating when others can be so judgmental.

Contributing Editor Catherine Morgan
CatherineBlogs, The Political Voices of Women, Care2 Election Blog

I suffer from severe asthma

Winter — Mon, 18 Feb 2008 15:51:24 -0600

I suffer from severe asthma and rheumatoid arthritis. I don't really know what it's like to live without pain or have long stretches without breathing problems. I was shocked a few years back to discover that people who suffer from auto immune diseases are more likely to end up with a second one as we get older. And I never would have thought of asthma as an auto immune disease until my pulmonary specialist explained it to me.

It's hard to have a chronic illness that others can't really see. My co-workers just think I'm being rude when the woman wearing too much bad perfume comes in, and I start coughing and choking.

Keep your chin up! It's good to know you're not alone out here!

Winter
“I was naughty. I wasn't bad. Bad is hurting people, doing evil. Naughty is not hurting anyone. Naughty is being amusing.” - Sydney Biddle Barrows