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What's New in Fibro-Land...A weekly online support group for those living with (or who know someone with) Fibromyalgia and other "invisible illness"

Posted Sunday, September 27, 2009, at 11:33 PM

(Photo)
Photo & blog layout by Shawna Jones

 Dividers Graphics

For those of you just joining in, I am starting a new weekly blog support group for those--like myself--who have been diagnosed with Fibromyalgia Syndrome and/or other "invisible chronic illnesses," and their friends and family, to come together and share their stories, suggestions, advice, successes (and failures), humor, and whatever feels "right."

Webfetti.com

Did you know that September 14-20th was National Invisible Chronic Illness Awareness week? If you answered no, don't feel bad, you're not alone. There just is not enough attention given to these conditions, but together we can spread the word and make a difference. Here's a surprising fact: 96% of illness is invisible. Think that seems wrong, just think about it for a minute...FMS, CFS, Lupus, RA, diabetes, heart disease, high blood pressure...the list is endless.*

I'd love to hear from any of you out there who are trying a homeopathic approach. I've been drinking the new acai juice from Wal-Mart...tastes horrible but does seem to give me a little more energy--although no noticeable benefit for pain or cognitive clarity. If you can stand the taste, I'd recommend it, even if all you get is a little extra energy to make it through the day it's worth it.

I've been in a "flare-up" again for a couple of weeks now. The first clue, aside from the horrible fatigue, was the mouth sores (ulcers) and the "hazy" vision & cognitive impairment (caused from the fibro-fog). I sometimes get confused and attribute the symptoms to allergies or sinusitis, but the mouth sores always clue me in to the flare up that's coming. I finally broke down and called the doc's office Friday to make an appointment. My husband's been bugging me for days to call because I've been "hurting" so bad, but [and I'm sure anyone with Fibro and other similar conditions can relate] I hate going to the doctor because I just feel like it's going to be more of the same...trying to determine what's wrong, prescribing different meds to see if something will help, only to find it doesn't...it just seems like there's nothing they can do so why waste my time and theirs (don't get me wrong, I love my doctor, but he'll probably be the first one to concede that medicine can only offer so much help).

But, there is ALWAYS hope, and the medicine does often help some of the symptoms to become more tolerable and/or manageable. So I do recommend you see your doctor regularly, even if nothing more than to say "hey, I hurt."

I've recently been reading some diet tips on foods to avoid that will trigger fibromyalgia symptoms. Here's what I've found:

Eating "Heavy" / "Filling" Carbohydrates will increase insulin, decrease blood sugar, and bring out fibromyalgia and hypoglycemia symptoms (40% of all men/women/children diagnosed with Fibromyalgia also have low-blood sugar (hypoglycemia).

Unfortunately, these "heavy" / "filling" carbohydrates include just about every "good" food out there--all of which I consume in quantity--such as pasta, white bread, wheat bread, spaghetti, whole wheat spaghetti, white rice, brown rice, mashed potatoes, baked potatoes, corn, whole grain cereals, whole wheat cereals, breakfast cereals, bananas, carrots, mangoes, instant oatmeal, watermelon, dried fruit, orange juice, fruit juices, raisins, baked beans, pinto beans, navy beans, kidney beans, fava beans, black beans, potato chips, corn chips, Pepsi cola, coca cola, cake, cookies, candy, ice cream, and more. And that goes for pizza, tacos, and tortillas as well, and anything with hidden sugars within them. So pretty much anything "good tasting."

All of these carbohydrates will increase insulin and lower your blood sugar because they have what's been termed as a "high glycemic load." Carbohydrates with a "high glycemic load" breakdown into a tremendous amount of sugar within your body and should be avoided as they make fibromyalgia symptoms worse.

So what can we eat? Here's a link to a holistic article which provides some very sound advice regarding a Fibromyalgia diet:

http://www.holisticonline.com/remedies/c...

In short, it recommends eating a high-fiber diet that includes plenty of servings of raw and steamed vegetables and increasing your intake of greens, as well as the inclusion of ample servings of lean protein, such as that found in fish, poultry, and fresh raw nuts/seeds.

Also advised is the eating of four to five small meals daily rather than three larger ones. This is believed to ensure that you have a steady supply of nutrients available for proper muscle function.

Avoid processed foods, and foods that are high in saturated or hydrogenated fats, such as dairy products, meat, and margarine. Saturated fats interfere with circulation, increasing inflammation and pain.

Avoid caffeine, alcohol, and sugar. These substances enhance fatigue, increase muscle pain, and can interfere with normal sleep patterns.

Believe it or not your diet can affect your health to the extent or increasing and/or decreasing symptoms and/or pain. Try altering your diet for two weeks--even if it is something as simples as just reducing your carbs and sugar intake by half--and see how you feel? Give it an honest go, if you cheat, you'll only be cheating yourself. If nothing else you might drop a few pounds in that two weeks. If it means even a little relief, I'm willing to try anything.

BUT ALWAYS discuss any diet plan with YOUR DOCTOR FIRST, so talk with him/her about it...I don't know of any doctor that would be against decreasing sugar and [bad] carbs and increasing raw vegetables and "healthy" foods.

REMEMBER, JUST PUT ONE FOOT IN FRONT OF THE OTHER, ONE DAY AT A TIME.

For more detailed information about Fibromyalgia Syndrome visit http://www.fibrocenter.com/symptoms_abou... or talk to your doctor.

*RESOURCE:

http://www.prlog.org/10000703-96-of-illn...

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Comments
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I did not know quite what to say about your first blog on this topic Shawna, but I hope this blog gets a lot of discussion and tips going.

For numerous years I have been going to the doctor and say, "I just feel lousy all over" but since Fibromyalgia predominantly seems to affect women, it was never a real topic of conversation. Chronic Fatigue Syndrome was briefly discussed, but again, never seriously.

Each and every time I go in, they take a blood sample and say that the Barr Epstein virus shows to have been recently active, but that stops there as well. I understand the frustration and even embarrassment of sounding like a hypochondriac, but nothing has helped.

In all my visits, they find "other" things wrong, but to-date, nothing that stops the over-all body pain and tiredness. Compared to your symptoms however, I might have to agree that I don't have Fibro. Maybe Chronic Fatigue but I think that might be a diagnosis that says, "we acknowledge your pain and tiredness, but we don't really know what it is".

Similar to being told by my allergist that I have "non-allergic rhinitis" . He knew my sinuses were closed, but could not determine the reason. All allergies that they test for come up negative.

That brings me to the belief that most of the congestion and probably the aches and pains are brought on by man-made environmental pollution and diet.

By the way, the only thing that makes me feel good (no, GREAT) is something I can not take for long periods of time, prednisone.

I will now click on your link about diet and see what is new. Thanks.

-- Posted by stevemills on Mon, Sep 28, 2009, at 9:02 AM

Steve, I wanted to thank you--sincerely--for sharing your story. I know that it takes a great deal of courage for one to admit to an illness/condition that most people think is "all in his/her head."

Fibromyalgia Syndrome [FMS] can take many forms, being extremely symptomatic for some while less "noticable" for others. From what you've described, I would recommend you see a doctor who is knowledgable in the area of FMS and broach the possibility. As I've mentioned before, knowing won't make the condition go away--currently there is no "cure" for Fibromyalgia Syndrome--but it can offer you some sense of peace to put a "name" to that which is plaguing you, and the medications prescribed to treat the condition can often help make life a little easier.

And don't be too quick to scratch FMS off the list just because its "targets" are predominently female. "Statistics indicate that during the 1997 and 2002 time period, about 38 percent of all cases of suspected fibromyalgia were registered in men. At present, the estimated ratio between female and male patients with fibromyalgia is 8:1. However, this ratio is considered to be inaccurate, given the fact that large numbers of male persons who show signs of fibromyalgia are rarely diagnosed with the disorder simply because they are men."

Here is a link to a website forum dedicated specifically to men diagnosed with Fibromyalgia:

http://www.menwithfibro.com/home.html

I wish you all the best Steve, and I welcome you to join in our new support blog each week (or as the mood strikes you) and share your thoughts, experiences, stories, "daily gripes"...or anything that just makes you feel "connected."

Alternative Resource:

http://ezinearticles.com/?Does-Fibromyal...

-- Posted by shawna.jones on Mon, Sep 28, 2009, at 10:38 AM

The possibility of FMS was first brought up by and Ear Nose & Throat person who was looking at reducing my nasal turbinates. HE said he could do iut, but asked the question about what was truly bothering me. When I explained both he and his nurse said get checked for FMS first.

I went to a Neurologist who sent me to a neuro-surgeon because of 4 vertebra in the spine pinching my spinal column. A neck fusion was necessary but it really did not solve my initial issue.

I went to a totally different internist and in blood tests determined I had prostate issues and it resulted in radiation treatment for that, which I am recovering from now. It kind of scares me to keep going back, since next time they might decide that I am really dead and just don't know it yet.

Seriously, (as you know) one just gets tired of going to doctors and the medical bills are putting someone through college, but not helping our budget one iota.

Thanks for the other links. I will check them out.

-- Posted by stevemills on Mon, Sep 28, 2009, at 10:56 AM

I agree, it gets tiresome and very expensive. Even after my diagnoses I kept seeing other doctors and researching symptoms hoping that I would find out that I instead had a condition that was more "treatable" (you know, something for which the doctor could write out a prescription and I'd be all better). That, of course, was just wishful thinking. But admittedly, I still find myself searching the web for a different answer sometimes, even after six years of "knowing better".

If you eventually decide to see someone new, I would recommend Dr. Bill Atalla here in Shelbyville. I've treated with doctors at Vanderbilt, Murfreesboro, and Franklin, but Dr. Atalla has been the most helpful to date. He first diagnosed my FMS after treating me for whiplash and post-consusion injuries in 2003. Were it not for his insitefullness, I can only imagine how long I would have continued to wonder..."am I dying?"

It does sound like you are receiving the care you need. There is not much to be gained from being labeled with a definitive diagnoses anyway, aside from the knowledge and relief gained in "knowing" versus "wondering."

My prayers are with you and your family. Just remember...you are not alone, and we are here for you. If you or your loved ones ever need to talk, or have questions, or you want someone to go to the doctor with you, just email me and I will do my best to be there, or find someone who can go in my place. Email me anytime at homeschooltrend@aol.com

-- Posted by shawna.jones on Mon, Sep 28, 2009, at 4:13 PM

Thanks for your kind words and offer Shawna.

I figure the Lord never said we would be here forever but it would be nice to go out feeling better, if that makes any sense. Which it doesn't but......

-- Posted by stevemills on Mon, Sep 28, 2009, at 5:27 PM

I'm so happy there is a local support of people with Fibromyalgia. I've had Fibromyalgia for 6 years now and it has changed my life forever! I like you, am a mother (but of only 3...lol), "had" a good job, was always on the go 24/7...I have a photography business which is my passion in life, I was "superwoman", until 6 years ago when I started having widespread pain, forgetting things, weak, and always sleepy. The doctors tested me for lupus and everything under the sun....to find I had FMS, CFS and RA....from there started the depression. I didn't want to except the fact that I had to slow down in life, that I couldn't do everything. I was a very strong person, still am but not in the body form. I finally excepted it all when I had worked 3 jobs, one which was working until midnight or longer...nonestop on my feet and couldn't sleep. A day later my son woke me up, which was NOT how we did every morning. I always wake my children up with a hug and smile..saying "Good morning sunshine" and sometimes sing, but they don't like that part :)

When he woke me, I couldn't move, I had such pain that I couldn't even bend my toes, blink my eyes, etc...the simple things we all take for granted. I was so scared, they got me to the doctor for them to tell me "that's just part of it, as time goes by you will have good, bad and worse days to deal with," I had a really bad "flare up". Since then I have calm my life down, slowed down, only do my photography, and pray 24/7.

I always say with FM its not take one day at a time, its take one minute at a time, then tackle the day. I am so happy about this blog!!!!

Today I take meds and am doing ok, but I still watch what I do and do have bad days! Thank you so much for allowing us to hear your story and share ours, may the good Lord bless you!

-- Posted by luvnfootball on Tue, Sep 29, 2009, at 8:36 AM

luvnfootball--

I apologize for not writing you sooner. I have been busy trying to organize a multi-family yard sale with the Homeschool Enrichment Program mom & dads. As you well know, it takes us "Fibro" moms (and dads) much longer to get things done...even at warp speed, we're only slightly faster than a snail's pace. And how about that thought-process...my brain feels like it's been through the puree cycle of my blender. I carry a PDA at all times, otherwise I could never remember my daughter's soccer schedule to pick her up from school.

Anyway, I did want to take a moment to thank you for sharing your experience. Although I would never wish this condition on anyone, I am so glad to find out that I am not alone. Sure, you read or hear about all the others with this affliction, but it is not the same as that sense of "oneness" you get in knowing that there are others right here in your own town who truly understand how we feel. I can describe it to my husband until I am blue in the face, but he can never really get the full effect of this "illness."

You and I seem to have a lot in common. I was also diagnosed with FMS, CFS [and possible Myasthenia Gravis] 6 years ago after being tested for Lupus, RA and others, and it resulted in the loss of a middle management job. I do have six children, but only three left at home (the others are 18 and older), and I have a passion for photography and digital graphic design. You can see some of my favorite photos here:

http://jpgmag.com/people/ClicChic

I hope some day we can all experience a "good day" together and celebrate the positives in our lives that keep us going through the "bad days."

Thank you!

-- Posted by shawna.jones on Thu, Oct 1, 2009, at 1:22 PM

Hi all. I've had MS for about 9 years and have been on meds for that,which has helped immensely. Unfotunately I have osteoarthritis all over the place too. I had my knees replaced over a year ago and am still having pain there. My Neurologist just informed me that my pain is due to Fibromyalgia. Percocet helps the pains in my hips and my back, but not my knees. Do you think that water aerobics would help Fibro in the knees? Does anyone have experience with this?

-- Posted by Naomi on Thu, Oct 15, 2009, at 7:38 AM

Hi Naomi, I'm glad you brought this up. When I was firsed daignosed with FMS the doctor sent for water therapy. Like you, I was having swelling and pain in my knees to the point of barely able to walk. Traditional excercise was impossible, but because of the "weightlessness" of water therapy/aerobics, I was able to strngthen my knees without the "stress/pressure."

I would defenitely reccommend water therapy for both your MS and FMS. Please keep me updated on your progress and email me anytime for assistance.

Best of luck, Shawna

-- Posted by shawna.jones on Fri, Oct 23, 2009, at 1:09 PM

What a wonderful idea. I wish I had thought of it. I have had FMS for 30 years. Pain has been my companion for most of that time and sometimes it hurts to get up out of bed but I keep on a-truckin' :) Here's my tip of the day. Don't ever ever ever let yourself get really tired. When you feel tired. Lay down and rest. The worst thing you can do is let yourself get worn out because it takes days or weeks to recover. Get on pain meds. You won't need them every day, but when you know they are there you can function. For someone that is pain ridden, that is important. Water aerobic are wonderful in moderation. Don't get overly tired. I cannot stress this enough. I also tried pilates. As long as you don't overdue, it is very good for strength as is light weight lifting. Muscle toning is really important. I find walking difficult because I get tired so quickly, others find it great. So whatever works. And one more point, (love the ideas of diet, exercise and all the points made) We are an obese nation, everyone needs to eat better and cut back on sugar and fats. Be kind to yourself. DOn't let people make you feel guilty because you say, "I don't feel like it." If you don't, give yourself permission to say "NO"...May you find peace, harmony and contentment in all you do right now. The future is coming fast enough :)

-- Posted by grannyoldknow on Sun, Oct 25, 2009, at 8:03 PM

May I suggest that people who have a problem losing weight, are very tired, and have a lot pain, and just down right don't feel right check into Cushings. This is caused by the body producing too much cortisol and will effect every aspect of you that is related to hormone ( yep just about everything) This condition is diagnosed by a 24 hour urine cortisol level test, and in may cases must be requested. I went from a thin framed active healthy girl to a woman 2x that size and barely able to walk to the mailbox and back without being whipped out for the day. It took 13 years to get diagnosed, and then it was only because I begged them to test me for it. Mine was caused by a tumor on my pituitary gland.

Many of the symptoms are the same as FMS, so if they have ruled that out and have no answers, ask about this and insist on being tested, they told me it was so rare they did not think it was necessary to. We need to be proactive and research to best of ability so we are prepared in our appointments,in may cases we are our best advocates.

Going from doctor to doctor, being told our symptoms are the results of other symptoms, saying your ill because of your weight when you know you have done everything possible to lose it, being told to exercise when you can barely walk or stay awake just to name a few things, wears on your mind and at times we even begin to believe it is all in our minds. Don't give up and believe in yourself, and above all else do not give up.

-- Posted by KaiteJones on Sat, Nov 20, 2010, at 9:29 AM


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A once self-proclaimed entrepreneur with a strong background in photography, computer assembly, and digital arts/graphic design, Shawna is a dual-major graduate who was forced to leave a middle-management position after a serious accident and illness left her unable to work. As a mother of six and former teacher, she is now homeschooling her two youngest children and volunteers her time as an educator for the Bedford County Enrichment Homeschool Program.