Wednesday, May 11, 2011

Fibromyalgia and Diabetes Winners

I've mentioned before, and I'll say it again. I have Fibromyalgia. I wrote often in a blog of mine about Fibro and the ways to combat it and improve every day living. I do really well, but I won't lie, every day is a struggle to keep up my good pain days. I have pain every day. The trick is in managing pain. I have a chemical sensitivity that keeps me from taking pain medication, so I've had to take some drastic measures. I have to push through pain every day to workout. But working out keeps me feeling energized. It's how I'm able to write, clean, and basically get out of bed every morning, but it's a constant battle against not only pain, but lack of ambition, tiredness, and a constant urge to give up. My brain is telling me I hurt too much to do anything and I have to argue with it. LOL

Some of the crazier symptoms of Fibromyalgia (Like random pain for no reason isn't crazy enough):

-small or non-existent "moons" on the fingernails while thumbnails have dramatic crescents.
-delayed reactions to pain. The first time I knew something wasn't right was when I pulled my heavy carry-on baggage out of the overhead compartment, and my arm felt like it was going to fall off two days later.
-short term memory impairment. In the past, my family used to think I was joking when I'd go into the kitchen for something and stand their for five minutes, unable to remember what brought me in there. This happens to everyone sometimes. It happens to me about 20 times per day.
-skin sensitivity. When I shave my legs, it feels like I'm shaving off a layer of skin. Sometimes I can't wear anything to bed and I can't have the covers on parts of my body. If there is a crumb in my bed, I feel it like it's a rock. Fibro Mates and I call this the "Princess and the Pea" syndrome.

"No Way! Constant pain and weird symptoms? You must be making it up. You must be bored, or looking for attention...etc." People, for years, have made fun of the diagnosis of Fibro and though the stigma is lessening, it's still there. My current Neuro is sure that I have a birth defect that's as of yet been discovered. But I feel doctors who aren't ready to accept what's in front of them, are really missing the mark.

Allow me to introduce you to another sufferer. Virginia Kentner, wife of author David Kentner. She was kind enough to do a quick write-up of HER experience with Fibro.

"Fibromyalgia…I was diagnosed with this disease in 2002 after many tests to rule out other diseases. I originally went to the doctor because I was not able to pick up a cup of coffee without severe pain in my left arm. I went thru a lot of tests before it was correctly diagnosed. When I went to the rheumatologist, he knew within ten minutes of examining me, including touching my pressure points that it was indeed fibro. I am not sure when I first got it but I know that I suffered with a lot of pain throughout my middle age.



Being diagnosed was the easy part, now what to do about the disease. The doctor put me on Celebrex and that seemed to help for about 2 years. Then the pain kept getting worse and when I would go to the Doctor he just kept telling me there was nothing more that he could do for me, so depression set in for about a year.



Along with fibro I then started having back problems (herniated disc) and sciatica. I went to another doctor to get my disc taken care of which involved injections to fight pain, but with such intense pain he finally prescribed a fentynal pain patch, which not only helped my back, but also helped with my fribro. There are mornings that I have a very hard time getting going, and sometimes when I get up from sitting I have to make sure my legs are as ready to go as I am. If I miss my pain medications I cannot function, as the pain is so intense that all I can think about is the pain until I get some kind of relief. Other factors that will send me into a fibro attack is stress, activities and weather (I cannot handle any cold…weather, wind, air conditioning, ice packs) those factors make me want to stay on the couch all day and do nothing at all except sleep to escape the pain.

I believe that it is inherited since my Mother (never diagnosed with Fibro) had many of the same symptoms and several of my sisters and brothers show the same complications (I am the youngest of twelve), some have been diagnosed and others just never went to doctor to be technically diagnosed.

Another major side effect of fibro is called fibro fog, which affects my memory and concentration. I know at my age that it gets harder to remember names, dates, places, etc but the fibro fog makes it more intense.

Another major side effect is sense of feeling, sometimes it hurts to just have someone hug me or to let my pets sit on my lap, and holding a baby has to be limited since it feels like you have held them (your arms just ache) for an hour and it’s only been fifteen minutes.

Another side effect is the clothes that you can wear, nothing over the head cuz it hurts too much to put on, no blue jean material because it makes your legs ache twice as much, layers of warm, soft clothing (I wear insulated underwear seven months out of twelve), nothing too tight that will make you ache more.

Another side effect is that it has basically changed your whole life and taken over all aspects of what you used to be."


Thank you Virginia, for sharing your story with us today.

If you'd like to help lessen the pain of millions of women, please consider donating to:

American Fibromyalgia Syndrome Association <~~~~Donation link!



Giveaways:
Allure Van Sanz EBook (your choice of Noble Books)
Allure Van Sanz T-shirt,
Erotic Author KevaD eBook Sunday Awakening



Winners of Giveaway for Diabetes: (Please email me at allurevansanz@aol.com)

Allure Van Sanz EBook (Your choice of Noble Books) - Sarah J McNeal
Author Lisa Beth Darling’s EBook Dream Weaver - Debbie Laurie
Author Fiona McGier’s print copy of Secret Love - Lori McPhetridge

Congratulations. And thank you for your continued support.

All my best,
Allure

18 comments:

molli said...

And lets not forget the ever popular "But you don't LOOK sick" I just love that one...not.
hugs
molli
(diagnosed in 1999)

DA Kentner said...

Thanks again for what you are doing here, Allure.

Dena Celeste said...

Thank you for posting this! Yes, "But you don't look sick." is by far the most insulting thing I've heard. The memory impairment is probably one of the worst parts about it for me (besides the pain...hate the pain). Bad pain bad.

May you have extra spoons in your day and much love in your life.

<3,
Dena Celeste
(diagnosed in 2001)

Cornelle Keveen said...

Virginia, there are so many who would benefit from your testimony on this page. So much needs to be done to raise awareness to this affliction. Your voice is one of many that cry out for this cause. It hasn't fallen on deaf ears, I'm certain. Thanks so much for your courage.

Allure, kudos to you for setting the stage.

I wish you all the best.

Cornelle Keveen

Nancy G said...

I feel such sympathy for all of those who suffer from this, and thank you for making us all more aware of this disease. Strangely enough, I have many of these symptoms, and have been attributing all my aches, pains, dizzy spell and distraction to increasing age, but maybe I should have my doctor look into this. Thanks for all you're doing for awareness this month.

Evanne said...

What a terrific post to raise awareness of a misunderstood disease. Thank you for the education. Gentle cyber hug. :)

Gillian Archer said...

What Evanne said. A very thoughtful and informative post. I had no idea what a daily struggle fibro was.

Lauren Fraser said...

Fantastic post. Thank you Allure and Virginia for sharing your experiences with us.It makes it so much more real to hear from people who actually have fibromyalgia and what they go through on a daily basis.

Debbie Vaughan said...

Thanks Allure and Virginia, for your testimonials. Fibro is so often misdiagnosed. My former sister-in-law suffered for years often being told it was "all in her head". Much more needs to be learned about this disease and better methods of treatments perfected.

Helen Seely said...

Wow i must say i truly had no clue about the trial's folk's went through with Fibromyalgia and i have a higher respect for you... This is such a touching post..
Helen Seely
Cute and Cuddly Quilts

Amber said...

I'd heard of Fibro Fog, but vaguely understood all that forgetfulness meant painkillers were making the old light bulb flicker.

Virginia said...

Thank you all for your comments and interest in this Horrible disease, I appreciate them very much. Hope this writing, as brief as it is, was able to help those with fibro, and those who live with people who have fibro. Take Care.

Susan said...

I was diagnosed during the late 90's, and have been living with it sonce then. I too don;t take pain meds, and some days are just so hard. The Fibro Fog is so bad - that is the most frustrating part for me these days. Thanks for helping to bring light to this dibilitatins disease.

Susan R

AllureVanSanz said...

Blogger is having issues.

I'm hoping the other comments come back soon. If you posted before and you don't see your comment, feel free to leave another. I'll hold off on the giveaways for a few days in hopes people will return to see if they've won and see this. LOL

Dena Celeste said...

I was diagnosed in 2001, age 15, and I remember how scared I was, wondering what was WRONG with me. I don't have any health insurance now, so I'm just living with it, day by day, and pushing through. But it's real, so horribly real, and it's good to have others realize that just because we may not look sick, doesn't mean we're not.

Virginia, thank you so much for posting! May your days come with many spoons!

Blessings,
Dena

Cindy said...

I heard of fibro before, but never really knew the symptoms. Wow. I feel like I have half of them myself, but I can't even imagine someone living with such pain every day. God bless all of you who suffer from it.

molli said...

I was diagnosed for the 'first' time in 1999. Different doctors had different diagnoses, but the majority now say Fibro, so we go with that. No pain meds here either, they just don't work
hugs
molli

Bonnie F. said...

I was diagnosed with fibromyalgia three years ago. That, combined with extremely painful problems with my feet, caused drastic changes in my life. However, six months ago, my doctor diagnosed borderline hypothyrodism. Medication for that has greatly lessened the fibro symptoms and made my life so much better. Sometimes the thyroid numbers don't indicate a problem. I would recomment anyone with fibromyalgia persist with this medical avenue. As well, a mild anti-depressent helps with both sleep and pain. Pain medication is fairly useless. Sad to say, but a bottle of wine helps me better than a narcoticl, not something I want to depend on, for sure.