New to CFS

Discussion in 'Fibromyalgia Main Forum' started by karinrobertson2001, Oct 24, 2006.

  1. karinrobertson2001

    karinrobertson2001 New Member

    Hello everyone...

    I am new and confused. I was just diagnosed with CFS. What the heck is it? What can I do to get better? My doc said something about relaxing. HA! I have two kids under the age of 5. Not gonna happen. Help me understand.
  2. ABLUV

    ABLUV New Member

    I tell you the truth. CFS is not a club you would volunteer to be a part of; it picks you. Now that you are diagnosed, you have come to the right website for information. This site is packed with the latest research, and info on medicines and treatments that many CFS victims try. What works for one person may not work for another. All the people on this board are very helpful
    to newcomers of this disease and very encouraging so please
    visit as often as your kids and your symptoms will allow you.

    Speaking of symptoms, which ones do you have?

    Write back soon, okay.

    Your new pal,
  3. fieldmouse

    fieldmouse New Member

    You will find lots of great people here with lots of personal stories that will help you. I was diagnosed with Fibromyalgia a few months ago. I don't know alot about CFS but I am sure you will get lots of good responses....Hang in there and Welcome to the board...~hugs~ Mick!!
  4. cct

    cct Member

    I am sorry that your CFS diagnosis prompted you to find I wish that you did not have to look for help.

    However, now that you have discovered the message board at, I think that you will find lots and lots of useful information and encouraging support from the wonderful people who frequent this board.

    You may want to start your understanding of this darn disease (DD) by doing some research. I would suggest that you start with a good book or two.

    "Chronic Fatigue Syndrome, Fibromyalgia, and Other Invisable Illnesses: The Comprehensive Guide" by Katrina Berne, Ph.D. might be a good place to start.
  5. karinaxx

    karinaxx New Member

    welcome to this board.
    did your doc not give you any information?
    this sounds strange to me; how could have made this diagnosis by not knowing more and giving you info?

    first of all, important that you find a knowlegdeable doc in your area and make sure that this diagnosis is correct!!!!
    no stress is important, but with all due respect to your doc, this is a lot more complicated than that!

    there are a lot of good websites out there, here just a few for the beginnning.

    and you find a lot information on this site, just check through archives and all the other stuff.

    to find a knowledgeable doc, i suggest to make a post here on the board, asking for doc in your area. maybe you are lucky and there is somebody close by.
    hoped that helped
    take care

  6. karinrobertson2001

    karinrobertson2001 New Member

    Thank you all for the responses! I know I've come to the right place, now. As far as symptoms go, what prompted me to go to the doc in the first place was flu like symptoms. Aching, dizzyness, feeling super tired all the time and after a few days they weren't going away so I figured I'd go to the doctor. My doctor doesn't seem to be the brightest crayon in the box. He told me that I had the "yuckies" So I went home and after a week still wasn't feeling any better. So I went back. I told him that SOMETHING wasn't right and I wasn't leaving until he found it. I was feeling tired all the time, more than the average person who "went without sleep", my left knee was aching so bad that I thought I had fluid on it again (I have an old h.s. injury). But then it would go away and go into my hip. My bones literally felt like they were breaking, they hurt so bad. I was agitated, and no ammount of coffee would get rid of the massive headahce I have. The headahce has caused me to be sick several times, caused my eyes to blur up even WITH my glasses. Basically I felt like I had the flu and it just got worse with each passing day. I couldn't sleep at night but I chalked that up to my newborn keeping me up. After she started sleeping through the night and i STILL couldn't sleep, no matter HOW active I was during the day. I tried everything from not laying down during the day when my kids took naps to those energy pills (no-doze) and coffee. NOTHING worked. I figured I was just overworked. When you mix no-doze and coffee--you'd think you'd have a major ammount of energy then pass out cold when the effects wore off. NOPE. Not me.
    As far as my doctor not having any information for me, he just gave me the basics of what it was about. He said that there was no "set reason" for why people get this. I find that hard to believe since there's a reason for everything. But I did some research yesterday and true enough--there is no set cause. I was suprised. He put me on a multi-vitamin and an antidepressant. I don't like the antidepressant as I've been on that before (zoloft). It makes me tired, as if i'm not tired enough. He also put me on a sleep-aid, but I'm hesitant about taking that as I have a 3 yr old and a 3 mo. old. Both of whom tend to get up at night and my husband is a sound sleeper (Lucky). I'm wondering if maybe I should see a therapist about some of the things that are overwhelming. Anyone have any luck with that? I just don't want to put MORE stress on me. My hair is literally falling out from all the stress. I can run my fingers through my hair and it just come out in clumps.
  7. supergirl99

    supergirl99 New Member

    in July this year. It's very overwhealming indeed. I have gone through so much grieving its unreal! You need time to adjust and you need to learn to rest and store your energy (I also have 2 children 3 and 16). It's not easy and don't get me wrong I don't do it right yet either! You will come to terms with this in time and learn your lessons the hard way like the rest of us LOL!!! I agree with other posts that it might be a good idea to get a second opinion - especially if you don't think your doctor is reliable and if you just feel fobbed off. You normally have to have the symptoms for more than 6 months before they will make a positive diagnosis. Not sure if you have?

    It's not all doom and gloom though. You will probably have good days and bad and days when you are angry at the illness and yourself, but try to remember these will pass and you are still you. This does not difine you!

    There are also many stories of people recovering from this - so try to stay positive!

    My thoughts are with you, this site is great for info and support, I have found great comfort and advice from people here.

  8. Lolalee

    Lolalee New Member

    Karin, I've read what you have posted here and a couple of things come to mind. First of all, did your doctor have lab work done to eliminate other illnesses, i.e. Lupus, RA, Lyme, etc.? If you go to the top of this page and click on Home it will lead you to more information on CFS/CFIDS and FMS. From there you can determine if you fit the description.

    Your doctor is right about resting. If you do have CFS, the worst thing you can do is to push yourself. Your body needs rest to repair at a cellular level. My daughter-in-law has 2 boys (ages 7 and 6) and twin girls (age 3) and she was recently diagnosed with Rheumatoid Arthritis. I spoke to her yesterday about the actvity and stress in her life. She tries to ignore the housework (she is a naturally neat and clean person) and takes breaks as often as possible. She realizes that she will be worse if she doesn't do this. She involves her husband (my son)as much as possible in the child care and household duties.

    Everyone is different and you have to find what works for you. But, if you do have CFS, it will help you to start looking at life differently and take care of yourself as much as you can.

  9. karinrobertson2001

    karinrobertson2001 New Member

    did blood work. He ruled out RA since my mom was "assumed to have it" and later found out that it was cancer. Apparently the symptoms of RA can mask cancer. I had no idea. he tested me for thyroid problems, lupus and a variety of blood/immune problems. all came back OK. After doing reserach i discovered that a lot of the things i've been experienceing are those of CFS. The brain fogs, (i put ice cream in the cabinet last night and din't know it until this morning) sore throat (i still have after 2 wks...i chaled that up to a cold, which it wasn't) and a few other things. I have an appt. with another doc tomorrow to get a 2nd opinion. I think it's for the best.
  10. rockgor

    rockgor Well-Known Member

    to the board. Lots of nice people here who can share experiences and info about this mysterious condition.

    Also check the library for articles (above in purple).

    (Some folks here have visual or conceptual problems so short paragraphs are appreciated.)