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Hi. I am new here. I just found this site. I was diagnosed in September with Chronic Fatigue (An elevated blood test result of the Epstein Barr Virus). This is one of those 'mystery' diseases...but believe me it is very real. Maybe I missed it, but I did not see any posts on this particular health issue. I am 55 yrs. old, female, post menopausal, and just recently retired (June 2005) from my job of 33 yrs as a Flt Atttendant. The job was great, but physically & emotionally diffucult on my body. After I retired, I could not figure out why I was so extremely exhausted. I figured it was just leftover 'stress' from 33 years of constant traveling. But, when I did not feel any better, I went for heart, and lung tests, and blood tests galore. The result: Chronic Fatigue (CFS) which most doctors know little, or nothing, about. I sleep a lot, rest a lot, try to walk my dog everyday, do some computer time, read, and have household chores and errands of course. I was an extremely active person at one time. I was a jogger, a busy and available friend to a lot of women. I would fly for 3 or 4 days, and then cram a week's worth of activities into my 3 or 4 days off. I am now unable to do much of anything. CFS affects your physical, as well as your mental, health. Lack of organization, concentration, and motivation are ever present...on top of the seemingly endless feelings of total exhaustion after very little activity. I also have osteoarthritis, mostly in my hands and my neck. It is very difficult to accept the fact that you are lucky if you can do half of what your used to do! There is no 'cure', as far as I have discovered...but there is the hope of remission. It is also socially disheartening, as people do not understand that you have a disease, and just think you are lazy, and a hypochondriac. So after much explanation to others over the last 4 1/2 months (Actually longer, of course, as September was only when I was actually diagnosed with CFS; I had probably had it for the previous 6 months or so), to friends, family, and my husband...I am free, without criticism or skepticism, to concentrate on whatever I need to do to put this disease into remission. So why did I post this? To share with others who may have the same diagnosis. What has helped, what has not? I also recently hooked up with a web-based CFS/Fibromyalgia support Forum. So, is anyone out there familiar with this...I am sure there must be! Thankyou for taking the time to read and perhaps respond! Deb :)

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My mom has been having similar symptoms when her menopause started. She was so lethargic that she neglected all house chores and social activities. She has been complaining about joint pain and she hasn’t been sleeping very well. She visited doctors but everybody contributed it to menopause. I did some research and I have reason to doubt that she may suffer from this disorder as well.

Her gynecologist suggested hormone replacement therapy but she refused because of the possible side effects and those rumors about estrogen and cancer.

I would like to know how this disorder is diagnosed and how should this be mentioned to a doctor? Like, out of the blue: Could I be suffering from this?

Any info would be highly appreciated! Thank you

P.S. My mom used to be very energetic and socialize with a lot of people. She was a nurse and had a lot of friends and acquaintances. The number has decreased to minimum because she doesn’t feel like going anywhere.
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Hi Lori. I told my doctor, (GP) that I was totally exhausted and I wanted to check it out. I told him I had already been dealing with the periomenopause, menopausal, AND post menopausal symptoms for a long enough period of time to know that this exhaustion could not be attributed to it. My gynecologist did not really want to be bothered with it...because to them, every answer to a menopausal women's symptoms is "It's just hormonal". Because I also would not take hormones (my Mom is a breast cancer survivor), the GYN had no solutions for me. I had my thyroid checked, my Dr. sent me for the heart and lung tests, as I mentioned...everything came back normal. Finally I said to my GP, "Look, we have tested for everything we can think of to find a diagnosis, and nothing has shown up. The only thing I have not been tested for, that causes these same symptoms, is Lyme Disease (from a tick bite), and the Epstein Barr Virus (which some suspect is related to Chronic Fatigue)". I asked him to run those blood tests. He called me a few days later to tell me that, sure enough, the 'marker' for Epstein Barr, showed an active infection of the virus. This not only showed I was in an active stage of the CFS, but also, that I had probably had it for a while. I went on the Web and started reading about it. There is no cure, just the hope of remission, should you rest, take vitamins, avoid stress, do light exercise, eat well, and sleep a lot. Fresh air everyday is very necessary. Too much sleep, and not getting out enough, does not help. There are days where I do not want to leave the house, but I force myself to shower, dress, and walk my dog. Then, I rest, read, sleep...do a jigsaw puzzle on my computer...whatever I feel like for the day, that is very low key. I make an easy dinner, or order in. Many times on these days I will turn off the phone, and let the answering machine pick up, because I just do not feel like talking to anyone about the fact that I feel lousy that day. I avoid all stress. People try to be helpful, and make many suggestions as to what you should do to feel better. I listened to everyone in the beginning, but have found that that is the last thing I need to hear when I am having a particularly exhausting, and 'cloudy-thinking', day! I stay quiet for the day, and allow my mind and body to relax. Usually the next day I will feel pretty good. I may go see a friend, or do errands. Somtimes, when I know I have apppts. with friends, I make sure I rest for a day or two before that day, so I can have some energy and enjoy myself. I have educated my family & friends, by sending them print-outs of some web based articles as to how CFS affects a person, mentally & physically. They all understand now. If I say I cannot do something that week, because I really have enough on my plate already for my limited mental/physical energy level, they understand and accept it, and we plan for the next week. No one puts pressure on me anymore, least of all myself!. It took me a while to learn all of this. I am hoping that if I take care of myself, that by the time the warm weather comes, I will feel a lot better and be in a state of remission. The thing with CFS is that you can never really go back to an overactive lifesyle again, because the virus remains in your system, and it can easily flare up again if you overdo it. Your Mom being a nurse, is similiar to my Flt Attendant job. A lot of emotional & physical stress. This is usually the type of people who get CFS. I know quite a few Flt. Attendants who have had it, and had to change their lifestyles, to a more relaxed, restful, healthier way of living. I do not know if this is what your Mom has, of course. But, I am very proactive about my health, and when something is wrong, and I know it, I persist with the Dr. until I find what the problem is. Web sites are wonderful to educate yourself about the possible disagnosis, and what tests you may need...considering your symptoms. I also am on an antidepressant because depression is a danger when you are this tired, listless, and unmotivated over a period of time. The brain chemicals get all screwed up, and you do not know what's what anymore, and it only worsens how you feel. Oh, and I also had the joint pain your mother mentions. On really exhausting days, I still do have the joint pain as well. So, you might ask, if I do all I am supposed to do to feel better, than why do I have 'bad' days? Well, that is because life is unpredicatable. Circumstances may dictate that I must do more than I really should, for too many days...then I collapse.
I hope this helps you and your Mom, Lori! Please feel free to contact me with any other questons along the way, you might have, and I will do my best to answer to the best of my knowledge, or tell you where to look for the answer possibly. None of this is set in stone. Everyone's CFS is different, and we each have to find our own way to live with it. But, I found out that here is a lot of support and information to be had. It is not necessary to roll up into a ball, and go to bed, and cut off all communication with others. I did that for a while, and it is not helpful at all. I know exactly how your Mom feels! There IS hope...hang on to it!
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Hello Deb! Thanks heaps for replying!

It is good that you have organized yourself so well. Keep up with a good work!

I also thought that my mom could be suffering from depression because besides the symptoms I mentioned previously, she doesn’t have any will to make these better like you did for example. But you found that will later, right?

Do you know how a person gets in contact with this Epstein virus?
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Hi Lori: You are welcome. I am glad that you are also looking into depression, concerning your Mom. I did have to take care of my depression, long before I was diagnosed with the Chronic Fatigue. It could be your Mom has both. But the depression needs to be dealt with first. Otherwise she may not have any desire, as you said, to get tested for the CFS, and figure out a lifestyle plan that is helpful for her. The trouble with CFS is that it mimics so many other illnesses. Depression can have the same symptoms as the Chronic Fatigue. The only reason I knew that something else other than depression was going on with me, was because I had the depression treated first, was stabilized on medication, and thus was very aware of the CFS symptoms, knowing they were not depression. Depression is so very common among older women, pre-and-post menopasusal. My mother dealt with depression while in her late 30's early 40's (so there is a family history in my case) and was treated (in those days, 1965 or so, no antidepressants were available) with tranquilizers. She did not need them after some years went by, and was depression-free up until about 16 months ago, at 74 yrs. of age. She had no enthusiasm for anything, she was sad a lot, could not sleep, etc. The doctor put her on Lexapro (20 mg.) and she has been great ever since. She goes to a GP, not a psychiatrist. I also get my meds through my GP. So please. "Google" depression on the web, read up on the symptoms, and present them, in written form, to your Mom. So many times, when people actually see the symptoms before them, they recognize it is happening to them, and thus will seek out help. It could be that once she begins treatment with an antidepressant (it takes about 3 weeks for the drug to really work fully), the symptoms you think are caused by CFS will disappear, and she will be fine again. My Mom was back to her old self within a month. So first things first...please check things out from this angle first, hon. Let me know how you are doing with that, and write if you have any questions concerning depression. :) ***this post is edited by moderator *** *** web adresses not allowed **
Gods' Blessings...Deb
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Hello Deb!

Thanks again for sharing your knowledge and experience with me! Thank you for your support!

I will do some more researching and then present everything to my mom, i just hope i will manage to get her see a doc! Any doc for starters!


I hope you will get much better in time!

Good luck
Lori
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8) Hi Lori. You are very welcome. Glad I could be of help. I pray your Mom does realize you only want the best for her, because you love her, and that she needs to get help if she feels so unwell. It's no way to live. I overdid it myself today. I was determined (after an already busy day) that I was going to stop at Walmart on the way home, and should not have. I was so spaced-out...I kind of had a melt-down! I lost my list within 5 min. of entering the store; I walked around in a slow daze, as people tried to get around me with their carts, and I am running into things w/ MY cart; I could not remember but half of what was on my lost list. It was awful. When I got home I just sat down & cried! Too much for one day. Not good.
Keep me posted, Lori! God's Blessings...Deb
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Hi..Im new here too. Im always searching for info on CFS because my 23 yr old daughter has that. She may also have fibroamalgia too- going to see that specialist 2moro. I found an interesting magazine dealing with 65 pages of CFS. I ordered it from the CFS AND IMMUNE society. its called SCIENCE & RESEARCH CHRONICLE its 12.00 plus 3 for shipping. it contains all the latest studies and research and treamtent etc on this disease. I thought you and other cfs sufferers might find this useful.
I recently found 2 things that we have tried for my daughter that has given her more feeling good time. She has started drinking that polynesian noni juice, and is on a mucusless 3 day a week diet...that diet consists of eating only non starchy vegetables and fruits (raw is better)...when on this kind of diet you body forms "new blood"..which then runs through your whole body...your blood has never been better than when its new...I must say she has been having more good days than consistenly bad days for the past week. we started this 2 weeks ago.. and she is trying to stick with this regimen. any little info may help someone else. look into it..it may do some good for you!
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please get nexavir or ampligen or antibiotics or something NOW. see Dr. Susan Levine in NYC or someone who knows NOW....I have had cfs for 12 yrs and they say the viruses have invaded my body systems to the point that it is too late for me. the only real hope of recovery is in the 1st few yrs. mine also started with ebstein-barr. dont waist time!
sue
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Hi there,
I was diagnosed in 1993 with Chronic Fatigue Syndrome when I was 29. Before that it was a mystery illness where I was tired all of the time and got sick easy. By the time I was 33, I was disabled, unable to work. I lived in NY when I was diagnosed, moved to Florida a few years after. Im pretty much homebound, I go out when I have a doctor appt or when I have to go to the store for food.
I too use the internet and have been for years to chat with other people with CFS or other illnesses.
Nice to meet you, hope to chat soon.
Anne :)


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am on nexavir for one month had two surgeries two yrs ago am 55 yr old male need advice
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