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Discussion Starter · #1 ·
My doctor is sending me to an internist for the possibility of having Chronic Fatigue Syndrome. I have been bone-tired and such for a few months now. I went from feeling rested on 6 hours sleep a night, to sleeping 10 hours a night, and still wishing for a nap by noon. This is very odd for me. I am normally a very energetic person, so this is really affecting me. My doctor ran quite a few tests on me. He checked me for anemia, thyroid disorder and diabetes, etc. He did a complete CBC on me,too.I am new to this, so I was wondering what tests have you had run? How did your diagnosis come about? Who diagnosed you? How has this affected your life? Any other information that you think would help, would be greatly appreciated. Thanks!!!!
 

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i havent been diagnosed cfs,but i feel for ya.having aways been a energitic person its gonna be real hard to learn to pace yourself.me,i was born lazy,and still have trouble.good luck.denny
 

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Hi Byh20:Welcome to the board. I'm sorry to hear that you have CFS. I have had fibro for 14 years and like a lot of the members on this board we've gone through the gamut of tests and doctors. As for myself I found at the beginning it began with insomnia and lethargy. I was constantly tired. I was like you, full of energy never wanting to stop. My family doc tested me for everything, blood work, thyroid, mono, sent me to see a neurologist, ear/nose/throat, gastroenterologist you name it, I was there. Everything came back okay. I did start feeling a bit better 6 months later when I saw Allergist. He said I had candida albicans and started me on a regimented diet and Nystatin for the overgrowth of yeast. Combined with chiropractic treatments I got some relief. But the fm never went away. In 1992 a friend suggested that I see a rheumatologist (because it sounded like I had the same thing she had - fm). When I went to see the rheumy he confirmed the fm - gave me a prescription for amitriptylene and sent me home. Unfortunately, the amitriptylene didn't work for me. Over the years I have to learn things myself and through trial and error have found things that work for me. I try to take a warm bath every night. I do yoga and walk. My new rheumy says that walking (getting the heart rate up) is beneficial for us. I also find massages beneficial. The biggest thing is to learn to pace ourselves. Which is difficult to do at times. But we must. Diet seems to play a very important role too. I'm not very good when it comes to controlling my foods, but I do think there is some truth to it. And lastly, being with the people in this group has helped tremendously. The ideas and suggestions have been very helpful. Everyone here understands what you are going through. Knowing that there is someone here to listen helps me through each day. Never give up hope. Take care.
 
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Discussion Starter · #4 ·
Thanks for the information! I am already starting to learn that pacing yourself in key. This is very hard for me to learn, but I know that I need to. Anyone else have suggestions? I will take all of the help I can on this! I appreciate everyone's help on this.
 

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Hi there, it is good to see you here.I have got FM and had it for a very long time before finally being diagnosed. I had blood tests for nearly everything you can think of but with fm, nothing shows in the blood work.I try to pace myself too, it does help heaps.I have also started using lavender oil as a massage. That not only takes the mild pain away it also relaxes and helps me to sleep a fair amount of the time.What I think is most important though is try your best to think positive. If you feel down, jump onto this site and you will find all the support you need.Remember, days will get better so just think of those times.Brooke
 
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Discussion Starter · #6 ·
More questions... I notice that I am sore a lot, in my back and legs. I thought this was from working out, but this should have gone away by now. Is this common? I don't even know when I get to go to the doctor yet, I am still waiting on my referral which could take another week (not mention how long it will take to get an appointment). But I am not complaining, it could be worse.
 

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Pacing yourself is important!! I don't follow that good advice much---and I pay for it! Take for instance today, Leaf removal day for us----we have a big yard and lots and lots of leaves to clean up. Ugh!! We rented a powerful blower and while Hubbie was pushing that around and blowing the leaves to the edge of the woods, I was raking and doing all the movements that practically kill me. I was the one that did all the heavy duty work---it should have been the other way around, but it never is around here!!!! Now I'm hurting and I will be very sore for days. Need to get me some of those oils that Gillian and Shrinky are talking about. I plan on ordering some soon. I spent an hour soaking in the tub with the water level to the top!!
I've had FMS for about 16 years, possibly longer----just never been diagnosed with it until recently. I also have IBS and I swear I have CFS, too. I'm so tired all the time I have to literally drag myself around. I force myself to move and do things. Some days are not so bad and I have lots of energy and then I'll have days where I'm really dragging. Perhaps mine is more the wear and tear on my body from the Fibro pain and depression mixed in. I'm so tired of being tired and hurting!!! I try to lead as normal a lifestyle as this will allow. I don't want to let this defeat me. I would just like to find more relief than what I am getting now. I am still waiting to hear from Mayo Clinic on an appointment. I hear it may take 6 months or longer to get one!!! Will my patience hold out?!?! Hang in there. This is a wonderful board. I have learned alot. I'm sure you will, too.Take care.------------------There is a silent strength within each soul, and that strength is multiplied for those who remember that they do not walk their path alone. Thomas J. Edwards
 

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Hey Fiesty,You sound like me---good days bad days. I cleaned the basement today and am paying for it. havnt even begun to tackle the leaves yet.My IBS is acting up too_One more week and i am down to 3 days per week of work.Debbie
 
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Discussion Starter · #9 ·
Thanks for all your help, everyone. I will be seeing the specialist tomorrow, for the first time. Hopefully, he/she can come up with some tests, or a diagnosis, or something. We'll see. Wish me luck!
 
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Discussion Starter · #11 ·
Ugh! I went to the doctor yesterday... it went okay. He examined me, took a complete medical history, etc. It went well for a doctor's visit. This doctor isn't convinced it is Chronic Fatigue Syndrome. He is running a few more tests to rule out some other problems. I am getting very sick of doctors who tell me one "thing", send me to another doctor to confirm that "thing"- only to have that new doctor come up with something else. In the meantime all I want to do is go take a nap!Anyway, now that I am done venting, I want to thank all of you for your help. This hasn't been easy for me.
 

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Good to hear from you. Hang in there! I know exactly what you mean about the Doctor's. They like to run a person in circles!!! And we know our bodies better than they ever will!! Why don't they want to listen to us? Keep us posted as to the results of the tests you had done. We can all learn from one another.Karen
 

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Hi Byh20:Gosh, I know what you mean about going from one doc to the next. I think we've all gone through it. I became so discouraged (almost hoping that they would find something), because I knew it wasn't all in my head. Finally, when the diagnoses was made I felt such a big relief. Then it was time to figure what I had to do to cope with this. Everyone has a different pain threshold, so when you have those bad days remember to relax and take care of yourself. I've had days where I would be in bed most of the day. Please hang in there and keep in touch.
 
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Discussion Starter · #14 ·
The doc. now says the last test he runs will take 3 weeks for the results to come back. Atleast, I will be out of town for most of the waiting time. I will let you all know of the results when I find out! Thanks for all your help.
 
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Discussion Starter · #15 ·
Well, this test came back negative, too. So, who knows. I am still dealing with the fatigue and "bone-tiredness". Atleast it isn't something serious (I guess). But, it sure would have explained why I slept for 14 hours straight when I was in Paris (not something you want to do when you are in the City of Love with your hubby- no matter how understanding he is!). Oh well, just wanted to update you all!
 

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What test did he do that took 3 weeks for results?are they now saying fm/cf?Hope you get to the bottom of this soon. I am newly DX myself and no what a pain it is to go from Dr to Dr and waiting and more waiting.Hang in there.Debbie
 

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Hi BYH20I just read about your test coming back negative. Remember with fms, all blood work will come back negative. The way the docs out here diagnose it is when you have pain all over for six months or more.Just keep pacing yourself and try to think happy thoughts.Brooke------------------B Howes
 
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Discussion Starter · #18 ·
The test that took so long was a free-cortisol test, for Cushing's Syndrome. I have now had the fatigue for almost 5 months. They are going with CFS for now, since everything else is negative (blood work and all). This fatigue thing has been a little hard to handle. I just got back from an overseas trip. Every night I slept atleast 10 hours (up to this 6 hours was all I ever needed to feel completely rested) plus a two hour nap everyday. When I was in Paris, I didn't get my nap, so one night I slept 14 hours! Hubby wasn't too happy, but he is starting to understand all of this. Thanks again for listening!
 
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Discussion Starter · #19 ·
Hi Byh2o (what does that stand for?!) I was diagnosed with CFS in 1992. I went through the gammit of tests to rule out anything else. These included thyroid, Lupus, Sjogrens disease, Epstein Barr Virus (I do have this too)Multiple Sclerosis and a wide variety of blood tests. As with FM, pacing yourself is the lifesaver. Also, a "regular schedule" is good. Getting up and going to bed at the same time, with alot of "rest breaks" during the day. Even if I don't sleep during the day, being in a very quiet environment and being still is a little rejuvinating. Be careful with the workouts. This is hard area to get the boundaries made because exercise can make those of us with CFS "crash". Especially weight lifting and aerobics. It took me 2 years to find a program that worked to my benefit, with the help of a physical therapist. The exercise is good for your physical AND emotional well being!! The hardest element for me to change was prioritizing! Not doing housework as often, so I could have some fun. Doing tasks in "stages" instead of all at once. Making decisions that were good for ME. Anyway, enough rambling. Good luck on your tests and I really hope the outcome is something that can be dealt with and not CFS!! DeeDee
PS I forgot to let you know that I was working at a Rehabilitation Center when I was diagnosed. A speech therapist that I worked with was part of the CFS Clinic, and had observed me getting sicker and more frustrated at work and came to me one day to let me know she thought I had CFS. She gave me quit a bit of material to read, which was SO ME!! I documented things for a month, then took that to my MD, the rest is history. He looked back in my chart and figured I'd had the CFS since at least 1989! We'd been treating symptoms for years. [This message has been edited by DD (edited 12-09-2000).]
 
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