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Miss_Tardy
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| Posted: June 04 2007 at 9:25am | IP Logged
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Hi folks
I'm new here and wanted to know if there are any other people out there who are trying to keep their home/homeschool/life running whilst coping with fibromyalgia/fibrosytis (which I have) or chronic fatigue syndrome (which is sort of similar).
Cheers ~ Marina in South Australia
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mavmama
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| Posted: June 04 2007 at 10:06am | IP Logged
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Hi Marina,
I have had fibromyalgia since 1991, when I contracted Lyme disease on vacation. That was before much was known about it, and apparently, I did not get the correct antibiotic. Please feel free to pm me if you'd like to talk further 
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Liz
Blessed by 4 wonders
dd11, dd911, ds9, ds8
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Anneof 5
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| Posted: June 04 2007 at 6:14pm | IP Logged
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I am pretty sure I have fibromyalgia. My doctor cannot make up his mind, one time saying I do and then later he isn't sure. Tests have never found another reason for my symptoms. My sister is an occupational therapist who works with many fibro patients and says I have it. So, it is very trying at times but I find changing my diet, regular exercise and taking supplements has made things somewhat easier. Getting good sleep is a major priority. I have gotten to know my limits and try to stay within them. I have to depend on the help of my older kids to do some things that are hard for me physically.
What are others doing?
Anne
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mavmama
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| Posted: June 04 2007 at 8:46pm | IP Logged
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Like you, Anne, staying within my limits keeps me on track for less pain. Sleep is another issue---and I need to get a handle on it--I just don't sleep. A usual night is about 5-6 hours. Of course, that's not enough!
Too much refined sugar (AKA: junk food)is a trigger, and I do everything within my power to avoid a chill. That seems to be my BIGGIE. This winter was actually the first in many years when I didn't have a flare because we moved south in Dec.(job realted)and we are not living in an old, drafty farmhouse. The extra sunshine helped, too. 
I have been on meds. for my fibro for about 10 years. Would love to get off of them, but the last time I tried I had a major flare. Not worth it, but I had to try. 
For me, the greatest difference was when I fianlly decided to live with it instead of against it. I detirmined my limits and began to create ways to live within them. Some examples:
Chapstick in my purse, van, bedside, cupboard. It's a small luxury that makes me feel better. Same with lotion--it's everywhere, and I use it after every hand washing.
Never having an open collar when it's cold--no drafts, no chills.
I bought a great water bottle and carry it everywhere. Lots of water helps flush out toxins.
I try to anticipate problems before I am struggling. For instance,I am stiffer and foggier in the mornings, so I set up breakfast before I go to bed. I have a pill box filled, so I don't have to open child proof lids with sore hands.
Stuff like these examples help me a great deal. How about you?
Good topic!
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Liz
Blessed by 4 wonders
dd11, dd911, ds9, ds8
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KerryK
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| Posted: June 19 2007 at 11:15pm | IP Logged
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I just saw this post today, and wanted to jump on and say that I struggle with fibromyalgia as well. I am new to homeschooling and also have a new baby, so it is a real challenge right now. I'm glad to hear I'm not alone here!
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Kerry
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AnaB
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| Posted: June 20 2007 at 2:09pm | IP Logged
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I have Epstein Barr/chronic fatigue. I've never known what it's like to not have it; I got mono when I was 5 yrs old from a water fountain and was out a year with it. I think since then I've had alot of trouble with fatigue and headaches. I've tried so many thing, but have yet to find something that works.
The heat (I live in Miami, FL), and doing too much make it flare. I spent most of last week on the couch.
It is very hard to deal with. My energy gets real low and I don't feel up to doing anything so then I just sit at the computer and parent from my chair. Then I feel terrible that I didn't do anything (I still manage to get meals and laundry done). I'd love to hear how you all adjust your lives to make the most of your low energy.
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His By Grace, AnaB blessed WIFE to Jeff and mama to 4 blessings!
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mavmama
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| Posted: June 20 2007 at 2:31pm | IP Logged
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Ana, that is interesting about the heat.....
We recently moved here from the midwest, and this week it has gotten HOT! I have not been feeling very well either. Perhaps there is a connection in that for me as well.
Right now I am fighting a sinus infection that woke me up in the night with a headache. Maybe it's all that together.
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Liz
Blessed by 4 wonders
dd11, dd911, ds9, ds8
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hylabrook1
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| Posted: June 20 2007 at 3:21pm | IP Logged
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Absolutely, heat and humidity are the surest things to cause a flare for me. In general I try to keep the balance in my days by alternating times of working (like cleaning) and being quieter (like schooling, reading, knitting). The problem with the heat getting to me is that then I can't walk in the summer because it's just too much. But then exercise helps keeps my muscles from cramping up -- what I call *getting crinked*. I really would love to have a treadmill to use in the house, but that's not in the $ plan right now. Does anyone have a recommendation for an exercise video that is particularly helpful for fibro?
Peace,
Nancy
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AnaB
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| Posted: July 06 2007 at 9:05pm | IP Logged
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I'm now having daily, persistent headaches along with the fatigue. My dh was just in the hospital again. He has a chronic heart condition and has been in the hospital about 6-7 times this past year. Last week he was in the hospital for 3 days for bowel obstruction. He's fine now. I didn't sleep for two nights staying up with him and then we came home. He recuperated very well, PTL! BUT I have had the WORST bout of fatigue and headaches and weakness and brain fog that I have ever had.
Days like this I wonder if it's possible to homeschool? We've somehow (by God's grace) homeschooled always for the past 6 years. But I've never felt this bad. Have you all found anything that brings relief?
Right now I'm trying to find a doctor who believes CFS is for real and who can help me. I don't know where to start. I would also love for my dh to believe this is legitimate and would come along side me rather than blame me for the way I feel. He's an RN and needs the hard facts but won't read any of the literature. Please pray that the Lord would work in his heart. It's been very lonely.
Grace & Peace
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His By Grace, AnaB blessed WIFE to Jeff and mama to 4 blessings!
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CathinCoffeland
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| Posted: July 07 2007 at 10:24am | IP Logged
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I struggle with chronic pain/fibro and sometimes can get really down about when i start comparing.
Mrs s is taking her kids rock climbing, mrs z's kids are reading plato at 4 , mrs x is building models of dams in the back yard 
My neighbor God Bless her is so energetic I remember looking out the window one time and there she was pick axing the garden 8 months pregnant with # 5 and here i was complaing about being in so much pain with #2 
i read somewhere that comparison is the death of hapiness and boy is that true. but it is hard not to do
mostly i get frustrated at the limited physical activities i can do, we tried ti join a bunch of local hs'rs from the parish on weekly nature walks but i couldnt keep the pace even with everyones toddlers in tow ive been a bit embarrassed to tell them.
i once had a doctor tell me i should contracept because it would be selfish to raise kids when i hurt so much.
I do wonder about my homeschooling but my best hours are morning/midday and i would miss them if my kids were gone all the time.
Yeah my house is a mess a lot. I cant clean and teach and parent. Dh helps me overhaul the house on his days off. It helps that he is totally supportive .
Somedays we just sit and read and read and read and talk and watch signing time.
SOmetimes we eat fruit and sandwhichs for all our meals on a blanket out back looking at the clouds because im too tired to stand and cook.
Sometimes we do school in our pj's cause I didnt get to the laundry.
Its not everyday and i try to take it as i go. Dh is very big on "one day at a time" Often before work he will rub my shoulders and hug me from behind saying that.
I try to focus on that and when i see the joy my kids have playing together and just being together. Seeing the 6 yrold read book after book to the 3 yrold while we all lay in the big bed while i nurse the baby because she is too heavy for me to nurse sitting up I know that the doctor was wrong.
Maggie
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AnaB
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| Posted: July 09 2007 at 9:58pm | IP Logged
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Today, I was very slow and by afternoon had the familiar pounding headache that has been debilitating me for almost two weeks. I tried to lay down but I couldn't sleep. But the fact that I even tried to lay down is a big deal for me. Often I will push myself and not listen to my body and get worse and worse. These headaches are so bad they stop me in my tracks. It's forcing me to listen to my body. And you know what? Everyone survived without me!
CF is teaching me to be kinder to my body. I can at least be thankful for that. But so many well meaning people completely misunderstand my limitations. One person told me, "Welcome to motherhood" when I mentioned the fatigue. Wouldn't I already know about motherhood from having an 11yo and twin 9yo boys? Others just don't understand why I'm not getting together with them or doing more outside the house. They don't understand how shot my day is from one outing.
I also started thinking about how I can rearrange my schedule to make the best use of my energy and time and allow time to take a nap if I need to. Any tips?
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His By Grace, AnaB blessed WIFE to Jeff and mama to 4 blessings!
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denise3578
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| Posted: July 10 2007 at 5:57pm | IP Logged
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If I may suggest, have any of you ladies researched low blood sugar - hypoglycemia? My daughter has had similar symptoms for most of her life - headaches, muscle fatigue. We finally stumbled on this, put her on a sugar-free, white flour free diet, very little fruit also, and the results have been dramatic. I just thought I would offer this as a possibility for relief of maybe some of your symptoms. We found a fantastic book - The Low Blood Sugar Handbook. I'm sorry I don't know how to link, but it's on Amazon.
Denise in VA
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missionfamily
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| Posted: July 23 2007 at 11:03pm | IP Logged
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I do not personally struggle with these difficulties, but my closest friend is a homeschooling mom who ahs Epstein-Barr/adrenal fatigue. The low blood sugar diagnosis and diet change as well as following the blood type diet have improved her condition tremendously. You ladies are all in my prayers.
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Colleen
dh Greg
mom to Quinn,Gabriel, Brendan,Evan, Kolbe, and sweet St. Bryce
Footprints on the Fridge
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CKwasniewski
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| Posted: July 24 2007 at 3:49pm | IP Logged
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I also want to add that you should look into candida overgrowth (candidasis). I started having chronic fatigue and pains like those of fibro... Turns out I was fighting a systemic candida infection in my gut.
It also produces low blood sugar symptoms, and affects hormones like thyroid and adrenals--which affect your energy.
Worth looking into anyway.
prayers for you,
CK
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KerryK
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Ck,
If you don't mind me asking, how did you find out you had a problem with candida? Was there a test for it, or did you just fit the profile?
Thanks!
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Kerry
Mom to
Matthew (10)
Mary (6)
New baby Samuel 2/26/07!
and 9 angels in heaven
The Eyes of My Heart
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CKwasniewski
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| Posted: July 24 2007 at 4:58pm | IP Logged
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Kerry,
Tests are very unreliable since everyone has some candida in their gut. You can do the "spit test." First thing in the morning before you eat or drink anything spit into a glass of water. Check the water every 15 minutes or so for up to one hour.
If you have a problem, you will see strings (like legs) traveling down into the water from the saliva floating on the top, or "cloudy" saliva will sink to the bottom of the glass, or cloudy specks will seem to be suspended in the water.
I did this test, and also worked with a nutritionist who had me fill out a loooong questionaire. It all fit when you put the picture together.
I have begun feeling waay better since going on the diet and taking the supplements!!
If you want more info, why don't you pm me? We don't want to hijack this thread!
CK
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Sharon B.
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| Posted: July 24 2007 at 5:45pm | IP Logged
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I have fibro in a split level house. I am actually having quite a flareup right now. I usually will ask the older kids to help with things like washing the floor or vacuuming (the movements are painful and the vacuum is too heavy when things are bad). The two younger kids can make the trips up and down the steps just with errands or laundry. Sometimes things as simple as bending over to take laundry out of the dryer require me to take a siesta on the bed to stretch my back out.
I also think that the humidity (we live in Northeast Ohio) is a huge factor although I have also read that stress can aggravate it. I work part-time and we lost a co-worker recently. The boss wanted those of us who were remaining to absorb her work. It has been stressful to say the least.
Has anyone else had other irritants? I thought I read once too that you should avoid caffeine. I am a HUGE tea drinker and have been unable to kick the caffeine habit at all and wonder if anyone else finds that it effects flare ups.
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Sharon, Wife and mom to ds, 16; ds, 15; dd, 8; and dd 6
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CKwasniewski
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| Posted: July 24 2007 at 6:12pm | IP Logged
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Sharon,
Things were always worse for me if I ate sugar or dairy.
Humidity makes everything worse!! Aches and pains, and candida too. So does stress!
Caffeine is not so good for you. And the tannins in tea, esp. black tea interfere w/ digestion. Try weaning/switiching to good organic green tea. I live on it!!! (note the picture) Don't overbrew!
However, if you're drinking tea for energy that's a sign that your adrenal glands need help, or maybe thyroid problems?
I recently got an herbal adrenal gland supplement that was great! Dr. Christopher's adrenal formula. Worth a try.
love and prayers to you all,
CK
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CKwasniewski
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| Posted: July 24 2007 at 6:15pm | IP Logged
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For brain fog try sublingual B12 (methyl B12) This has helped me a lot since I found out about it! This is the b vitamin that your brain needs most.
CK
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4Real Forums : Our Lady of Good Remedy and Care
Topic: Fibromyalgia and Chronic Fatigue Syndrome
