Coping with CFS

Discussion in 'Fibromyalgia Main Forum' started by teller7, Mar 12, 2003.

  1. teller7

    teller7 New Member

    I was diagnosed with CFS a few weeks ago. I'm 62 and was going to retire soon and enjoy life. I've had alot of viral infections over the past few years. Tell me is this is going to be a typical day from now on. I got up, washed my hair, was exhausted, laid on the couch for about 4 hours. Got up and felt some better. Fixed supper and could hardly clean up the kitchen. Now I'm so exhausted I feel like I haven't slept in weeks. I'm on zoloft and clonazepan. It helps some with the anxiety, but that's all. Why can't the drs help us more? I copied some info off the internet and took it to him. He was really excited to get it. I felt like saying why am I paying you?
  2. Echos

    Echos New Member

    Welcome to the board. Be so very happy that your doctor was excited about the info you brought to him. Most doctor's don't treat this, and don't even consider bringing most of them info, they have egos to think about you
    If you have a doctor willing to except and learn from the info you gave him, he is a keeper. And yes, you are having a typical everyday thing in paradise. The most important thing is to listen to your body. Sleep is good for you. So rest when you need to. Over doing it will cause your body to turn on you in a matter of hours. Keep taking your doctor info as long as he is willing to except it. And again, welcome to the board.
  3. teller7

    teller7 New Member

    Thank you so much for answering me. You're right about keeping him. I was just kidding when I said that smart aleck remark. When I was so bad in the beginning he even gave my husband his home phone number in case we needed him. He's worked so hard and ordered tests to rule out everything he could think of. Every test came back OK. I'm so glad I found this message board. I'm NOT alone and that's comforting.
  4. Shirl

    Shirl New Member

    Hi Carol, welcome to the board. I don't have CFS, I have Fibro.

    But I more or less live like you just described. When I wash my hair, I manage to dry it, then its nap time!

    I gave up cooking completely, it simply makes me too sick to eat. I have so much pain from all the standing and watching the pot!

    I work in my garden with a Timer on, one hour, then I take a rest. That way I don't over do and pay the next day.

    I also get the fatigue that you get, but only now and then. But I do get it often enough that I can relate to how you feel.

    Your doctor sounds like a great person. If you go to our 'Home' 'Library' and 'Community' links, you will find a treasure chest of information to bring to the doctor on CFS!

    Again, welcome to the board, and do let us hear from you often.

    Shalom, Shirl
  5. GlitterPott

    GlitterPott New Member

    Hey Carol, I was diagnosed with CFS 7 years ago, I was 12 years old. Its a bit crap but once you accept it (and it's taken years for me to do that!!) it does get easier. You learn what you can do and what you cant, the best advice I can give you is try not to stress about, it will only make you worse, and just take each day as it comes. The good ones will still come, and you can still enjoy yourself. It sounds like you have a great husband and doctor, make sure you keep hold of them!!!
    Take care and try to keep smiling.

    Shells xx
  6. goingslowlycrazy

    goingslowlycrazy New Member

    I am a 43 year old mum of two and believe I may have CFS. I have 80% of the symptoms described...but they have all been diagnosed seperately over two years, by different docs. I am seeing a new doc on Wednesday to try and make sense of all of this...but I am wondering whether to mention my son too.
    I see that you were diagnosed at 12. My son is 12 and has had severe migraines for six years. Over the last six months he has been repeatedly unwell with 'viral' infections, energy draining, having to go to bed when he gets home from school, complaining of backache and joint pains...does this sound familiar???
    I do not know what the familial incidence is of CFS but I don't want to come across as a neurotic the same time, I want the best for him.
    Mary xxx
    [This Message was Edited on 03/17/2003]
  7. mustgetwell-uk

    mustgetwell-uk New Member

    I know how you feel. I have had CFS for over 20 years.It has gradually got worse and worse. Like you I get exhausted just washing my face and brushing my teeth and having a shower. I was just thinking that 20 years ago I had full time job, extremely busy social life and I used to wash all the clothes by hand. Now I get tired just getting all the clothes in the washing machine. I get tired talking on the phone, watching TV and now I cant spend more than 20 minutes a day reading messages on this site. You seem to have a very understanding doctor, at least he is keen to listen. I wish you good luck.

  8. Mikie

    Mikie Moderator

    Welcome, you have come to the right place and you are on the right track. What we have all found is that we must get actively involved in our own treatment and not depend on our docs, most of whom know nothing about our illnesses. In the long run, it will empower you and lead to better treatment. If you have a doc who is willing to learn and help you pick your treatments, half the battle is won. I treasure my doc, even though he knows nothing about CFS/FMS. He is willing to learn and write the prescriptions I need for healing.

    I am seeing a very knowledgeable doc later this month and hope to find out if there is more that I can do. I give y'all an update after I see him.

    Love, Mikie