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  #11 (permalink)  
Old 10-14-2002, 09:17 PM
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CFS

A lot of the advice given by the ladies here is fantastic.
When you examine yourself from head to toe and
realize that every part of you aches, you wonder
first of all - what did I do to myself to get this way?
I was interested in what you said about feeling
badly as a child as well. I can remember sore aching
legs and feet well back in my teen years.

I have not been diagnosed with CFS or fibromyalgia
but doctor says that we can treat it as such somewhat
and take the recommended approaches for treatment.
Diet changes to lose weight and gentle exercise
on a regular basis are absolutely key. Drop the ice cream
and the cookies, and choose fruit and whole grains
more often. I just heard that white bread spikes insulin
production or something.

So,
Diet changes - critical
Exercise - gentle stretching
Walking - every day (yah I know you'll skip a day or
two but make a point of at least getting out there
with a good intention).
I also am trying MSM (natural inflammatory), but am
also taking VIOXX and this at least is giving me some
impetus to get out there and do some of the gentle
stretching. See a physiotherapist. DO NOT OVERDO
the stretching or you'll be out for the count the next day.
Make sure you also start taking Calcium and magnesium,
as well as Vitamin E if you are 40+. Selenium too.
Gentle weight bearing exercise helps stave of
osteoporosis and I have feeling that many women
are going to end up with this as they might not be
drinking enough milk through their teens and 20's.

The most enlightening thing I have discovered is
to stay off the computer as much as possible
as neck and back muscles take a beating.

When I look back and wonder when I started to feel
badly, I think it was when I was running more than
my "homeshow"; having fingers in school pies, church
pies, job pies, etc. are generally far too much for the
average woman with children. We tend to get depressed
when we cannot even find the time to back a batch of
cookies or stir up a homemade soup with left over chicken
bones. Our house is may be organized but we are just
a step away from insanity. When you find yourself say,
"I can't handle that right now....or I'll scream", it's time
to do a lifestyle check.... Stress is caused by:
being overweight; moving; someone dying; job changes;
school problems; puberty in our teens; you name it.
Lack of communication with our spouse is a huge stress
causer. The making of lists was a stress causer for me
because my spouse was not a list maker. When I
realize (daily) that my spouse is a procrastinator, I
happily procratinate with him now (one could say
I've "given up" on ordering him around). Rather, I
am discovering that listening to his dreams will save
me a lot of frustration - it might just be that those
dreams are similar and you'll fit right into them.
(a man is supposed to leave his mother and cleave
to his wife...).

Can't say what to do about the job, but money
isn't everything. I have worked at various
partime jobs to bring in 5000-6000 a year, just
enough not to pay income tax, but enough
to improve the immediate financial situation.
These jobs have always proved to be too hard on me
physically (standing, lifting, etc.). Desk jobs were
not attractive because of the pain of sitting too long.

Getting yourself well is going to be long process
so don't get discouraged. You'll have set backs
daily. Your job may actually help you set and achieve
goals better as you have to get up and get going.

It may take you several years to come to a point
where you are feeling better about yourself.

Keep talking to your husband; don't overload
him with pain talk, but do your best to be positive.
However, if you really need a day to yourself,
let him know that you are not cooking and are
spending the day sleeping - could he please
take care that the kids are not neglected too much....
and to keep the noise down in the house if possible.
Put in ear plugs and lock your door.
Then sleep, read, exercise a bit, do your nails,
soak your feet, get a backrub, put the heating
pad on yourself all over.....generally make
yourself unavailable to the household. Come
out at supper and don't do the dishes.
Be cheerful and thankful for your time
"away" and tuck your kids in at bedtime.
Hire a babysitter if your husband is going
to be overwhelmed with all the kids.

Aach. Don't give up.
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Change your thinking.
Celebrate Creation.
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www.chp.ca
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  #12 (permalink)  
Old 10-15-2002, 07:21 AM
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shocking Fibro treatments

This post list provided you with the same information it took me 5 years to accumulate before my Doctor finally diag. me.

I would suggest you realize one thing, what works for some fibro patients, does not work for all. GOOD Sleep and MILD exercise seem to be common factors among all of us, but as to supplements, vioxx, and foods to avoid, every one of us is different. Vioxx did nothing for me -- Ultram took away most of the pain -- The more carb's I took out of my diet, the more energy I had and the more weight I lost... I am on a "modified" Atkins diet (more towards the Zone) with alot of healthy fats (no margarine - butter -- whole milk etc) and I am feeling better than I have in YEARS!!!!

Carbs are my killer, but my aunt (who has FMS) took refinded sugar out of her diet and she is better than she has been in years. She eats complex carbs, no white bread, low fat no sugar -- go figure.

Good luck! The hardest part is not knowing WHY you feel so crappy, once you know, and can empower yourself!
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  #13 (permalink)  
Old 10-15-2002, 08:40 AM
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OK, you caught my atention... in my organizing journal - those of you who read it know its a journal that most of the times have nothing to do with organization ...at least not in the more simpler way... - I've had a couple of ladies saying tht my chronic depression might be fybromialgia (sp?) but the aching points made me be sceptycal about it... now I dont know anymore. When my body aches, its like if I was a loaf of bread that someone had beatten before going to the oven...get the picture? It aches evenly, all around my body, from head to toes. And I do have trouble focusing - not every day, but in phases, when I get"cloudy" I stay like that for days... and I crave sweets and chocolate, always. There are times - and these are rare, I have to add, that I get tired just by walking a few steps in my living room...I sit on the couch and just cant move for a period of time that goes from 15 min - 1hr...

Ya think this might be it, and that I was miss diagnosed all this years? Better yet, that this beeing tired all the time should have made the doctor think about it?

What ya think?

Fatima

I'm sorry, seems that my spelling and my english are rotten today!...
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fatima

"Stones in my path, I pick them all up: one day, I'm going to build a castle!" - Fernando Pessoa, (portuguese poet)
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  #14 (permalink)  
Old 10-15-2002, 09:05 AM
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Fatima, I want to encourage you to go to your Dr and tell him or her exactly how you feel....they have years of education and can tell if this is your problem or not. Other diseases affect your body and mental health the same way. It is always good to get a check-up once a year anyway....you deserve to feel the best, call and make your appointment today.

You are in my thoughts and prayers.
janet
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  #15 (permalink)  
Old 10-15-2002, 09:55 AM
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Fatima

You can have both fibromyalgia and Chronic Fatigue Syndrome. I went from doctor to doctor for 2 years until I was diagnosed. Many days I could barely get dressed, and my husband would have to help me. The good news is that you can get better. I have some bad times, like everyone else, but I feel like I have my life back.
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  #16 (permalink)  
Old 10-16-2002, 07:25 AM
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CHRONIC FATIGUE SYNDROME

LISTEN UP! I've had this exact same problem. I'm 99.9% sure you have an UNDERACTIVE THYROID. I also have recv'd misdiagnosis and "I don't know's" from Dr's. Dr's are too busy to look for details. Your diagnosis/solution is up to you to fix. Research UNDERACTIVE THYROID symptoms on the internet. If you have some, not all, of these symtoms, get tested for "T4" & "T3" levels. If your current physician won't help you, find another. I tested normal for TSH, normal for T4 and 30 points lower than the bottom range of T3. Since I've been taking my prescription, I'm a new woman and my kids have a new mom!

I know you said your finances are dreary, but good health is key to fixing your low income. Get tested, buy the prescriptions.

Additionally, exercise sounds great, but it will burn what little energy your thyroid is producing faster. Fix your thyroid, then exercise.

Also research low estrogen symptoms as many of them match underactive thyroid symptoms.

Good Luck! My prayers are with you!

Nanci
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  #17 (permalink)  
Old 10-17-2002, 03:38 AM
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Pinkie Winky Re: Chronic Fatigue Syndrome

Hi there,

You have certainly gotten alot of great responses to your posting. This is my first time posting to the forum and your note really caught my eye.

I have been diagnosed with Chronic Fatigue Immune Dysfunction (another name for CFS) and Fibromyalgia since 1997. But I can tell you, that I know that I had all of the symptoms long before my diagnosis. I guess after talking with so many people with these illnesses that my diagnosis was a quick one within a matter of months time frame of trying to search for answers. But the answer I got from my doctor I didn't think was very satisfying! Like you, he told me to rest as much as I could and take time off from working full time! I was like, hello??? How am I supposed to support myself and my young daughter? Anyways, I slept a good 18 hours myself during my initial lapse when I was diagnosed back in 1997.

Ugh, I'm not sure why I'm going into all of this. I will tell you that the Fogginess and loss of concentration is part of the CFS/FMS cluster of symptoms and it's not you, just part of the illness. What has helped me the most is the fact that I know that I'm not lazy and that all of that I'm going through is part of the illness and talking with other people who have this illness and knowing that they are struggling sometimes at different levels but still struggling with their illness too.

I want to stress the fact that many people have suggested exercising to give you energy....please, please, be cautious with this. When you have both illnesses, and even if you don't you still have to listen to your body and not do a typical type of 'strenuous workout'. Even after all of this time, I still crash after walking/exercising too hard or too much. This is a strange illness and what works for one person, doesn't necessarily work for another person. And everyone has varying degrees of this illness and it's different stages. The most important thing that I can suggest is to listen to your body...hard at first, I know. And it's also doubly hard when you have so many children and a demanding husband who are expecting so much of you! You really need to sit down and educate your husband about this illness. I have found that I go in cycles with this illness. I have somewhat found some balance, but my quality of life (meaning what I was able to do and activities I was able to do prior to becoming ill, has really, really diminished). You even need to educate your kids, no matter how young or old they are. This is going to have to be a joint effort on everyone's part. You have to reserve as much of your energy as possible. I'm not trying to be negative here, I'm trying to tell you that although, everyone has given you great suggestions about diet, exercise, etc. that it also takes having supportive people in your life. And don't beat yourself up, although it's very hard, I will admit, about things that you can't get done in a day. Give up the fact that you are a SuperMom, that title is over-rated anyways! LOL

As you can see, I could go on and on and on. Try finding a support group either online or in your community, it will help you immensely in not feeling so alone and isolated in dealing with this illness. I understand you hardly can keep up with life as it is right now, just offering some other suggestions to help you manage and understand this illness better! It may help in the long run. Take care of yourself and I wish you the best of luck with everything! Hang in there and keep up hope! And enjoy those small (low-energy) things in life....they are the best kind!

Sleepeyed
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  #18 (permalink)  
Old 10-17-2002, 03:42 AM
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chuckle Re: Chronic Fatigue

Oh, I forgot to mention one other thing...the depression is a secondary symptom of the CFS/FMS illnesses! Of course you are depressed. You feel horrible all the time, and you can't keep up with the things you have to do in your life. Who wouldn't be depressed. It's a very tough thing to take on when you have so many demands in your life. The depression is part of the illness, trust me, although, you may have some other underlying things going on like your thyroid, the depression isn't the first illness. Take care and know that you are not alone!

Sleepyeyed
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  #19 (permalink)  
Old 10-17-2002, 06:23 AM
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Chronic Fatigue Syndrome

Please don't accept your Dr's lack of attn. There is a cure for fatigue, not a disease that has to be lived with. I've lived 16 yr's with Chronic Fatigue and got the same answers from all of my Dr's as you. I researched fatigue on the internet where I found the symptoms and causes. I took the info to my Dr and told him what I wanted to be tested for. After the Dr recv'd my lab results, he said, "Oh, I guess you have an under active thyroid.". You need to be smart, even if your Dr is stupid. I feel like I've waisted 16 yr's of my life.

Good luck.

Nanci
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Old 10-17-2002, 06:43 PM
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Nanci,

It was interesting reading your post...I have read something about the other tests for underactive thyroid and often wondered if that was part or all of my problems. Like I said, I have felt this way for most of my life. I have been tested for thyroid problems four times in the last 15 years, but all the results came in as normal. There is problems on both sides of my family with thyroid (Mom's sister is overactive-Dad's sister is underactive).

I have talked to my local health dept...they recommended a complete physical for me. The Dr didn't even do that! I am going to get one just as soon as I can go there without the kids.

Thanks again to everyone who replied.
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