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Old 09-03-2006, 08:37 AM   #1
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CFIDS is common, and easily treated?

I was diagnosed finally a couple of weeks ago.
My doctor was bumbed for me, and told me I should get some info together for my husband and my boss so they may better understand I am not just being lazy and whining.
I think my boss hasn't looked at the info I printed for her from the CDC and Mayo Clinic. She did finally tell me yesterday that at least it is common and easy to treat so, I should be fine soon. I should really push myself to get though the day and build my stamina back where it once was. I don't even know what to say to her. Her boss, my regional manager said to me, "well I was depressed before, too. That's what's wrong with you, right, depression?"
Yes, I am getting depressed, now!

What should I be sure to emphasize to them?

Thanks!

Tawny

 
Old 09-25-2006, 08:55 AM   #2
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Re: CFIDS is common, and easily treated?

Anyone?
I don't know what to do.

 
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Old 09-26-2006, 02:09 AM   #3
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Re: CFIDS is common, and easily treated?

I'm so sorry that no one has responded to you. Is it common? I can't say but after being diagnosed with it and reading as much as I have it seems as if it is. Is it easily treated? I would have to say no becuase each person responds to differnent treatments. I haven't tried oriental medicine yet but I'm going to try it soon with the blessings of my western doctor. CFS is a tricky thing to to deal with. You have to find out what works for you. Let me tell you that most people are not going to be sympathetic. So

1. Find someone you can talk to about it preferably a therapist for Cognitive Behavioral Therapy. You will need to talk about it with someone trust me.

2. Find a doctor that specializes in CFS and knows as much as you do, cause I gaurantee you, after doing some research you will know more about it than your average doctor.

3. Deal with the rest and sleep symptoms before any other symptoms, this alone will help you alleviate some other symptoms automatically.

4. Don't let anyone tell you it's all in your head. It's not, other than the headaches, it is very real, what the cause of this very real disorder is we don't know but you are not a hypochondriac, and you don't need anti depressants unless you are depressed. And if you are depressed don't let people tell you that your depression has caused you to be sick. It's the other way around trust me. Don't buy their trash, doctors or otherwise.

5. Last but not least learn how to pace yourself and be ready to make some serious life changes.

be well


Ingram L. Jones

 
Old 09-27-2006, 09:09 AM   #4
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Re: CFIDS is common, and easily treated?

Thank you Ingram!
I have exhausted all my sick leave and have 5 hours of vacation to get me through the rest of the year. I am not eligable for Temporary Disability for another month. I struggle and have to really push myself to get through the day.
I feel that I should not be working a job with a strict schedule right now, as I am not reliable due to this illness. I am missing about 1 day a week. Should I quit? I am trying to stick it out for another month and then go out on TDI, but when I use up my last 5 hours of vacation, and can't work a full-time week, they will either let me go, or cut me to part-time where I will not have TDI benefits.
Oh my, what to do?

 
Old 10-08-2006, 06:38 PM   #5
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Re: CFIDS is common, and easily treated?

Fatigue is common. CHRONIC FATIGUE Syndrome isn't that common. I mean, it isnt like if you poll a group of people off the street you will be likely to find one with CFS-will you find one that complain of fatigue?? Probably all of them!!

CFS Is so misunderstood and it isnt just being tired. It usually involved memory problems, muscle pains (that is more FM but CFS people usually have mild muscle problems too) post extertional fatigue, exercise intolerance, weight gain/loss, appetite decrease, unrefreshing sleep (a CFS person can usually sleep 10 or 12 hours and feel like they never slept at all), insomnia, hormonal imbalances, nutritional deficiencies, and MANY and underlying infections (EBV is common, lyme, ect) or low grade thyroid problems.
Many have swollen glands. People with Fibromyalgia, which is closely related to CFS, are sometime so debilitated with pain they can hardly move.

These are devastating illnesses. I have CFS and my fatigue has made it impossible for me to work or return to college. But MANY people have it So much worse.

Simply being tired is common. CFS is a real syndrome, and while most CFS people have problems in comon, their CFS is never caused by one common thing.

The first step is a prope diagnosis, which in itself can be hard to get. I suggest doing a lot of research yourself. Education is the best thing for any CFS person! Find treatment is very hard!!

I also highly recommend a sleep study or visit to a sleep doc if sleep problems are involved. 95% of CFS people have some sort of sleep problem. Not falling into stage 3 or 4 sleep can leave a person exhausted no matter how long they sleep. Sleep apnea, insomnia, ect.

Be checked for active infections.

Take care!

 
Old 10-08-2006, 06:44 PM   #6
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Re: CFIDS is common, and easily treated?

Oh and No, CFS it is NOT easy to treat! I cant believe ANY doc would say that. That is absurd, and insulting to those who suffer with this every day for years and years despite seeking out many different docs and many times spending thousands of dollars on treatment that does not work. It is VERY hard to treat because no one thing causes it, each person is different. Sometimes NOTHING abnormal in bloodwork can be found and docs usually just scratch their heads in confusion.

I have been sick for 2 years and have only gotten worse despite treatment. Sometimes you have to dig deep and find some underlying condition.

I am most people believe CFS is a SYNDROME and shouldnt be taken as a final diagnois, because there are almost always some underlying condition that causes Chronic fatigue. You cant just accept that you have CFS and try resting and think that will cure it (like so many docs do) because for 99.9% of people that does not work.

IF you can find an alternative medicine doc that would be a good start. Also I would recommend an endocrinologist in addition to a sleep doc. If you have any docs who deal with bioidentical hormones, those can be of great help. I havent had much luck with infectious disease docs but you do need someone to do a thorough infection screening.

Also-check your diet!!! No processed food! Lots of veggies and fruits and water!!

AND STRESS CAN REALLY MAKE CFS WORSE. Many people get ill at a time when they are under a great amount of stress. Stress can really make a person ill.

Last edited by Cats0000; 10-08-2006 at 06:47 PM.

 
Old 10-09-2006, 10:52 AM   #7
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Re: CFIDS is common, and easily treated?

Sorry for your stuggles. I have been diagnosed with FMS and it is closely related to CFS. If I over do it or am over stressed I am completely wiped out for a day or two.

An important part of my life is I found work I can do at home and on my own schedule. Most of the time I am fine now that stress has lessened, but making my own schedule is huge because it also minimizes my stress, though it has increased my weight.

I don't know what kind of work you do, but if you are in sales, there are jobs that allow a home office and those that have schedules where you decide what office visits you want to make or allow for all at home hours.

 
Old 10-26-2006, 01:29 PM   #8
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Re: CFIDS is common, and easily treated?

Thanks for your replies! Sorry I didn't get back here sooner. I had the oportunity to go to Bali, as I got FIRED.

My doctor did diagnose me, and she is great! It was my Regional Manager who said that about "being depressed" and easy to treat. My doc is great, and is sorry for me as she knows it is not easy to deal with.

 
Old 10-26-2006, 05:43 PM   #9
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Re: CFIDS is common, and easily treated?

Is there a cure for chronic fatigue? I am new to this message thread thing so please bear with me.

Thanks,
Makia

 
Old 10-26-2006, 05:58 PM   #10
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Re: CFIDS is common, and easily treated?

I do not know all the laws but have you checked into the disability act, you might need to ask your doctor for a note stating that you need to only work a few days a week, your are covered under the american disabilities act or something like that. I wouldn't quit your job until you check into all your options. Most employers are not so understanding unless of course you have cancer or something

Makia

 
Old 12-01-2006, 12:17 PM   #11
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Re: CFIDS is common, and easily treated?

CFS isn't exactly COMMON, and it's definitely not easily treated. I've been suffering with both CFS and Fibromyalgia for over a year now; if anything, I've gotten worse.

Statistically, only 30% of CFIDS sufferers ever recover; but by recover I mean they don't have symptoms for a while. It's a chronic disease, hence the name, and it's not something that should be taken lightly.

Also, DON'T PUSH YOURSELF. please. I promise you, if you push yourself, you'll only get worse. A lot of ignorant doctors have it in their head that if people with FM and CFS "just exercise" they will get better. It's not true. You'll regress if you push it too far.

You DO need to get out...but as they say with all CFS or FM patients, you need to know your limits. If you stray too far from those limits, the CFS WILL flare.

I don't mean this in a mean way, but it doesn't seem like your doctor knows a whole lot about CFS. I'd suggest finding someone who does, because if she keeps pushing you, you won't recover.

And there is absolutely no easy treatment for CFS. They have no idea what causes it, or what CFS actually IS. Hence, they use experimental treatments. Sometimes they just give you antidepressants, sometimes other things.

I'm on concerta so I can get through my day, but I ALWAYS ALWAYS crash when I come home from school.

CFS is a brutal illness; don't take it lightly. And learn your limits =]. You'll be thankful for it.

 
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