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  #61 (permalink)  
Old 09-08-2004, 12:43 PM
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Janet - those are really good ideas for fighting off the brain-fog of fibro. No one has done any research about the brain-fog we get, "they" just "know" it isn't related to Alzheimer's or dementia.

I get brainfog less now that I'm on the Guai. For those that it works on, Guai is a lifesaver!

When I'm in the depths of brain-fog, however, I have found that a small dose of caffeine helps a good bit. This involves sipping on my second cup of coffee nearly all day, or sipping on a Coke or Jolt Cola, or a Mountain Dew - not drinking it down fast, but sipping on it over a 2 to 4 hour period of time. Nothing makes me "normal," but the small doses of caffeine help.

I was on Provigil for a while, but when my pharmacy card stopped covering it, I had to stop - it would have cost me $200 a month! I can't afford that much! Wish I could, though. The Provigil made me as close to normal as I've been in years!

Cheerio!
Elizabeth
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  #62 (permalink)  
Old 09-12-2004, 12:44 AM
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As, you're talking about brain fog I kept thinking you meant something my sister calls a "brain fart." But, after reading these replies a third time, I understand brain fog. I guess I was having one of those "foggy" days.

I really thought something was seriously wrong with me. I felt as if I had to really work hard to pull the words out of my brain, I had to really concentrate on my thoughts and words and my words seemed to trip over my tongue as if I had to push them out of my mouth. I've been doing this for years and never attributed it to my Fibro. I always thought it was maybe PMS or something else but it continued after my hysterectomy. Now, it comes and goes and I can't determine what the pattern is. I'd like to know more about this. It's especially bad for in the morning hours and that is why I don't take phone calls.

Also, Janet, I would like to know more about your holistic approach. What oils do you use? What kinds of exercises do you do?

Val, thanks for all the information you dig up and share. I have found it very informative and something I can take to my next doc visit to discuss.

And ladies, I don't know if anyone will realize how this FamilyCommunity has saved my life. It's given me something to hope for, look forward to, laugh about and cry about. I have laughed more in the past weeks than I have in the last year! So, the only emotion for me is not just sadness or blues. I'm actually laughing again. I'm actually finding things to be happy about and grateful to the Lord for. I have found my spirit!

FRIENDS ARE ANGELS WHO LIFT US TO OUR FEET WHEN OUR WINGS HAVE TROUBLE REMEMBERING HOW TO FLY.

Lovingly and
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  #63 (permalink)  
Old 09-12-2004, 03:11 AM
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The following is from the Arthritis Foundation's Good Living with Fibromyalgia Workbook:

Source: The Arthritis Foundation (www.arthritis.org). Excerpted from Good Living with Fibromyalgia Workbook.
Many people with Chronic Fatigue Syndrome and fibromyalgia experience episodes of unclear thinking or cognitive dysfunction. They become forgetful, lose their train of thought, forget words or mix them up. This is what is popularly called “brain fog” or “fibro fog.”

Following are some basic memory and communication tips that can help you deal with episodes of minor cognitive dysfunction.

Here are some common-sense pointers that can help you clear the fog:

1. Repeat yourself. Repeat things to yourself over and over again. Repetition will keep thoughts fresh in your mind.

2. Write it down. Whether you write in a calendar, in a notebook or on sticky notes, if you're afraid you won't remember something, putting pen to paper can help.

3. Pick your best time. If there is something you need to do that requires concentration and memory, such as balancing your checkbook or following a recipe, pick your best time to do it. Many people with fibromyalgia say they perform best early in the day.

4. Get treated. Depression, pain and sleep deprivation can influence your ability to concentrate and remember. Getting your medical problems treated may indirectly help your memory.

5. Engage yourself. Reading a book, seeing a play, or working a complex crossword or jigsaw puzzle can stimulate your brain and your memory.

6. Stay active. Physical activity, in moderation, can increase your energy and help lift your fibro fog. Speak to your doctor or physical therapist about an exercise program that is right for you.

7. Explain yourself. Explain your memory difficulties to family members and close friends. Memory problems often result from stress. Getting a little understanding from the ones you love may help.

8. Keep it quiet. A radio blasting from the next room, a TV competing for your attention, or background conversation can distract your attention from the task at hand. If possible, move to a quiet place and minimize distractions when you are trying to remember.

9. Go slowly. Sometimes memory problems can result from trying to do too much in too short a period of time. Break up tasks, and don't take on more than you can handle at once. Stress and fatigue will only make the situation worse.

= = = = =

So this is something that is known about. Don't panic when you can't remember something. Chalk it up to "brain fog" and it will come to you later.

I find that when I don't panic about it, the brain fog bothers me less. In fact, when I panic about it, it seems to get even worse! We're not crazy. We have brain fog. It's not a fake, it's real.

But that doesn't mean we should just sit back and blame all our faux pas on it, it means we need to recognize it and "take arms against it" using all the little hints and helps we can!

Exercise (not excessive) really *does* help! With fall coming along, it would be good to get out in the cool, crisp fresh air and walk as briskly as we can - and enjoy the fall color changes. It will help you feel less depressed, too!

I'm thinking about getting a couple of bicycles (outdoor variety) so dh and I can ride around the neighborhood - partly for his cardiac rehab, partly for my fibro "rehab" exercise. ZIt would be kinda fun, and I expect it would help a lot.

I'm looking at some other ways to exercise, too. I have these wonderful tapes "walk away the pound" so I can "walk" in front of the TV on bad, rainy days. It's more fun than on a treadmill, I can tell you! On days I'm not doing as well, I use the "pre" tape (slower, shorter" and on better days I use either the #1 or #2 tape. My goal is to get so much better I can actually use the #3 tape regularly! (It may be a vain hope, but better to have a goal than not have one!)

Well, got to get the living room cleaned up - it went to "pot" while I was having a bad bronchitis attack. I'm not "well" yet, but I'm better enough that I want to get the place looking better! Anyone want to come over and help? We could have a and share all our crafts and ways to fight our fibro! That would be sooooo

Cheerio!
Elizabeth
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  #64 (permalink)  
Old 09-17-2004, 09:32 AM
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Ive Got Some Questions for all you Wise Women.

Is FM and CFS something that sneaks up on you or is it an overnight kind of thing? I am reading about the symptoms and it is so me. I dont want to have this but if i do i want to find help. where do i begin? How do i approach my doctor about this? How do i get them to look beyond the change of life thing that everybody tells me about? I dont want to be looked at as a hypochondriac, and i dont want to hurt anymore. Has anyone found any relief in pain from chiropractic care? I saw a little bit about natural remidies,what do you use and for what symptoms?

Ok so its just a few questions. LOL I remember having those growing pains as a kid. My Mom also believes i had CFS of Epstien Bar in my early 20s but nothing was ever done. Now she just keeps reminding me i am 40 now lol.

Thanks for your help.

Blessings!
SueG
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  #65 (permalink)  
Old 09-17-2004, 10:01 AM
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Sue G.

Fibromyalgia, is just one of the diseases of the autoimmune system..for some reason, due to a virus, or an accident, our autoimmune system gets hypersensitive, and out of wack. There are alot of theories why...so there is no set rule about Fibro. It can come and go, meaning you will have flare-ups of increased pain, flu symptoms, insomina, fatigue, etc. then it can also go into remission...that is how mine is, I have flare-ups, then I have a remission...

some unfortunate souls have it all the time, 24/7 and require powerful meds to help them just get through the day...and their sense of a normal life is altered greatly.

This link can help you more and there is a ton of information out there. The best thing to do is talk with your doctor. Usually a family doctor will refer you to a rheumatologist, to make sure this is what you have.

http://www.fmaware.org/

Now I think the most important thing you have to learn is that there is no cure for this, at this time, this disease was not caused by something you did, and you must learn to adapt to the changes in your life.

It slows you down at first, but you soon learn what you can do, before you overdue, and learn to live with it...

For this is the hand that was dealt us, and the goal is to learn how to play it, and enjoy life again.

Sometimes that means baby steps too.

Myself personally I found when I first had it, it was the worse thing...now I have learned things that have worked for me, and most of the time, I can do things I want.

Hang in there Sue, and please feel free to email me or PM me if you need to chat more. I am there for you, along with everyone else on board here.

God Bless,
janet
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Last edited by janet; 09-17-2004 at 10:04 AM.
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  #66 (permalink)  
Old 09-17-2004, 02:52 PM
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Sue G -

According to some theories, FMS and CFIDS are part of the same disease continuum. I think the worst part of my FMS is the fatigue component. I can deal with the pain and stiffness, and even the IBS (irritable bowel syndrome), but the fatigue and the "brain fog" are what I have problems with. Because I have to use my brain in my work, and on "foggy" days, I can't figure out what's happening in the cases I'm reviewing (I review and summarize medical cases for attorneys).

My fibro "crept up" on me. I started out with arthritis in my hands and feet. The Drs thought I was developing RA because my mother had died from an incredibly bad case of RA. But it wasn't, and I never got the joint destruction of RA or even OA. Just swelling, pain and heat that would last several days, then go away, leaving me feeling tired and "foggy." Then my forearms started hurting - and I thought I had tendonitis from toting around a really heavy briefcase. Then my back and neck started getting painful and stiff, and muscle spasms started happening. Still thought it was arthritis, just wasn't sure what kind.

All that started back in 1979. It wasn't until 1996 that I was diagnosed with fibro! And it was getting worse all the time. It was in 1997 that I started having to walk with a cane, and I had to quit working outside of the house.

I'm quite fortunate that I have the preparation for doing what I'm doing now. And that the internet, FAX, and FedX/UPS/DHL were in place and at the point that I can do everything I need to from home.

Each of us with fibro has a slightly different experience with the disease. We each have pain, but where may differ. Also, the degree of fatigue and brain fog will differ. Some of us have severe muscle spasms, and some don't. Some are unable to walk, others don't have that problem.

And we each react to the various challenges of our disease differently from each other. Some get angry. Some become depressed. Some are grumpy, some are cheerful. And all of us have each of those reactions at one time or another.

Many people are able to continue working, although they may have to "cut back" some. Others have to go on disability, or even on welfare because they can't work at all.

There is no "stereotype" of the person with fibro.

But we all have pain, fatigue and brain fog. And we all need to cope with those things, plus the reactions of the people around us. Some people think we are faking our symptoms because they vary so much from one day to another. That's one of the things we cope with - not being able to plan ahead - having to cancel out on things we had really looked forward to doing.

So, that's my diatribe about fibro! It's a nasty, insidious disease that affects us much more than we realize when it first starts.

I have found a great deal of relief using Guaifenesin - according to the theory of Dr. Paul St. Armand (a board-certified endocrinologist in California). His website is:
http://www.guaidoc.com
You may want to explore the website. He does offer his book for sale there, but most of the information in the book is on the website. I take 600mg of Guaifenesin morning and night. It took about 3-4 months before I started noticing a difference. It doesn't make me "well" and it doesn't "cure," but it has reduced my symptoms to the point I no longer take pain medications, muscle relaxants and trazodone every single day. In fact, I seldom take any of them - this is after about 5 years of staring off into space because I was so medicated and so "brain-fogged." Others on this forum have had no relief from it. I'm grateful that it works as well as it does. I do have to be very careful not to use any lotions, shampoos, etc that have aloe or witch hazel in them, not to take anything with salicylates in them (and it's amazing how many things have salicylates in them!), not to use any "herbal" products for hair, makeup, etc. These interfere with the function of the Guaifenesin. That means I can't take aspirin - even for anticoagulation for my heart. Since I don't have any heart problems, that isn't much of a problem at the moment. But if I do develop problems, I'll have to go on an every-other-day dosage of aspirin and Guai. If the gal at the beauty shop uses a shampoo with herbals in it, though, I'm doomed for about 4 days! It really interferes!

Cheerio!
Elizabeth
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  #67 (permalink)  
Old 09-17-2004, 06:51 PM
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Elizabeth, I'm so glad you mentioned the salicylate part of the guai treatment. I do remember reading that the guia will only work if all products with salicylate be eliminated from our daily life. I'm seeing my spec. on Monday and I'm going to talk with her more about this.

Janet, you are so lucky to have remissions. I'll have flareup days and then nonflareup days but it never feels to be in remission. But, it is getting better each day. so, when it's in remission, do you feel that you can function like you use to? Are you able to regain strength to clean, work, chores, etc??

My FM felt more like a sinking feeling that kept getting deeper and darker with each day. The past 10 years I have had several surgeries and so I attributed all my aches and fatigue to these illnesses and surgeries. It wasn't until my last back surgery was on the mend about 18 months that I came down with a mystery flu-like sickness which then settled into a burning pit in my stomach and then the hot spots. It took 2 years to get a full diagnosis and a health management plan in place. Now I'm working on each facet of this plan a little at a time, introducing each step slowly. That's the part that's hard for me - taking it slowly and steadily but my doc says that the only way I will survive my FM and depression.

I've been sick this past week with a doozy of a head cold and viral throat infection. I hadn't been sick like this in 7 years - not since my tonsillectomy! (That was a big ouch!!!) I'm still coughing but I went out today for the first time this week and when I got home, I rested. It was a good day!

Hugs to all (gentle hugs)!
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  #68 (permalink)  
Old 09-17-2004, 08:40 PM
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cynstenquist,

Yes, When I am in a remission, I almost feel normal again...I have alot of energy then, and I am actually singing around the house, just like I did before. I can do more chores then. What I have to be careful is that I don't over due or I am thrown back into a flare-up.

My best remission time is in the summer...I excel with warm weather, the sun feels like a huge heating pad on my body. I have the most problems in the Fall of the year, when the weather fluctuates so much.

After a spinal block for leg surgery, I was in remission for 6 months...I almost forgot that I had fibromyalgia..and this was in the winter months too..so maybe the anesthetic unjangled nerve paths or what..but it was wonderful...the doctors could not explain it. maybe a side effect? It was a pleasant 6 months.

The part of this disease is the brain fog, and depression.I can tell when I am in a downward spiral and I head to the doctor for antidepressants. The brain fog is getting less and less now, I also try to work my brain by doing word games, memory games, and keeping using my brain..I take online courses, and try to keep my mind active.

Sometimes simple remembering can be a problem...like, what was that movie about again, or what was I suppose to pick up, or what is their name...or did I eat today? lol


Hope tomorrow is a good day for you,

Love Janet
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Old 09-18-2004, 08:03 AM
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Lists, lists, lists, and lists to remind me to take my lists with me!

Some days I can't remember squat!

The IBS is bothering me more these days than it has in the past. I dunno what's going on. Very strange.

It's funny (not ha-ha funny) how various aspects of FMs and CFIDS will exacerbate at different times. At the same time, I'm having major problems with muscle spasms in my back, shoulders, chest, hands and feet. Wonder if the muscle spasms are related to the IBS? But I don't feel any internal spasms.

part of this probably has to do with all the weird weather we're having here in the SE. No matter where a hurricane hits, there are major changes in weather and pressure in Atlanta, and my FM just goes berzerk.

But even so, I'm better on the guai than I was off of it!

Cheerio!
Elizabeth
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Old 10-29-2004, 07:37 AM
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WOW! Ya'll are telling MY story!

I've had symptoms of fibro for years. I've been tested for lupus and RA (both negative) and treated for depression, but nothing seems to explain all my aches, pains, brain fog, etc. as well as fibro.

I'm constantly tired, but I sleep poorly (which is why you'll find me posting here in the wee hours of the morning. ) Simple things like housework & shopping wear me out! I often wuss out in a store and just go wait in the van. Everything aches! And I get sharp pains that just take my breath away, especially in my arms and hips, that seem to have no cause. I especially get pains in my arms and hands, and they have absolutely no strength in 'em. Now, I'm a heavy woman, so I expect pain in my knees and feet, but in my arms? I just poured a couple of big cups of coffee, and it was all I could do to carry them into the living room. Awhile ago I went through a spell where I couldn't raise my arms enough to slip on a jacket without breaking into tears. My DH can do something simple like hug me or rub the back of my shoulder, and I cringe. It hurts! He's so bewildered and apologetic, but it's not him. He's almost afraid to touch me for fear it'll hurt. I can't write legibly freehand anymore, because my hands hurt so bad, but typing doesn't seem to faze 'em.

I hadn't realized, until reading these posts, that "brain fog," or as I've called 'em for years, "brain farts," were a symptom of fibro. My memory is practically nonexistant; I blank on people's names, even folks I've known for years, and am always searching for words I know, common, little words. I'm easily distracted; I tend to interrupt people in conversation, because, if I wait politely to speak, whatever I meant to say will have already fled my brain.

I have headaches and am very sensitive to light. I can't drive when the sun is low, because I'm blinded by it. Headlights coming towards me kill me, too.

Unfortunately, I'm uninsured, so I can't afford a rheumatology workup. I left work a couple of years ago because the pain and stress kept me in tears. I've been struggling with the SSDI process since, and am waiting for an appeals hearing. I was diagnosed as bipolar back in '89, although at least one therapist has told me since that he doubts the diagnosis. He said that I'd developed coping skills for other problems that mimicked bp. The worst thing about the bp diagnosis is that, once a doctor learns you've been diagnosed with a mental disorder, they quit looking for physical causes for your complaints. The doc who had me tested in the hospital for lupus did so because I had had what looked like a stroke. My CT scans were normal, so he wondered if it could be lupus. When the neurologist came in, he heard about my bp and immediately said that that was the problem. Before the lab results even came back, he'd convinced my doctor that basically "it was all in my head." Well, if my brain can make me ache all the time, hurt when the oddest places on my body are merely touched right, and want to sleep every few hours, the brain's an even more amazing organ than I thought!

I feel like some cranky hypochondriac, but I'm not. Despite having worked around doctors for years, I don't like to go to 'em. I don't like to take meds. I just want to not feel like an old, old woman in a middle-aged body!
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