New to boards and not yet diagnosed but have questions...

Discussion in 'Fibromyalgia Main Forum' started by ksmom, Oct 14, 2002.

  1. ksmom

    ksmom New Member

    I haven't yet been diagnosed with CFS, and don't know that I meet the criteria. But thought you guys could help anyway. I have had disabling fatigue for the last 1 1/2 years and literally cannot function. If I didn't work from home, I know I wouldn't have a job. I sleep 8-10 hours at night and then another 2-4 hours during the day and have absolutely no energy while awake. I *can* do things, I just don't have the energy or motivation. I was being treated for depression when the symptoms first started and have since changed meds but nothing has improved. I also have hair loss and TSH was low at first, thyroid scan was normal and thyroid panels have been normal ever since (a year ago). How do you guys manage life? I can't get any house work done, sleep all the time. I'm grumpy when awake and my kids are really missing out. My 3 yo says, "Why are you awake?" when I am...it's really depressing in and of itself. Going back to the doc tomorrow, but have had a sleep study, lyme titer, B12, basic labs, etc. with nothing found. No fibromyalgia, just a little worsening joint pain and in this last week some muscle aches. I know I'm deconditioned and that's driving me crazy, because I used to be so active. I can just feel myself wasting away. I eat junk (sweets) all the time just to try to get an energy boost. I can't keep my eyes open and I can't concentrate on anything. My house is a shambles and I'm not being a mom. Is this how you guys live? I don't have an exercising problem, I don't think. I can go for a day, on a good day, and haven't paid attention if I have a relapse afterwards, though I may well. I had 4 good days when I changed meds, felt like my old self with energy and happy and singing songs. Went to the state fair and haven't hardly gotten out of bed since. I just can't see a future like this...not that I'm suicidal, I'm not. But I can't take it any more! Thanks...
  2. ksmom

    ksmom New Member

    I haven't yet been diagnosed with CFS, and don't know that I meet the criteria. But thought you guys could help anyway. I have had disabling fatigue for the last 1 1/2 years and literally cannot function. If I didn't work from home, I know I wouldn't have a job. I sleep 8-10 hours at night and then another 2-4 hours during the day and have absolutely no energy while awake. I *can* do things, I just don't have the energy or motivation. I was being treated for depression when the symptoms first started and have since changed meds but nothing has improved. I also have hair loss and TSH was low at first, thyroid scan was normal and thyroid panels have been normal ever since (a year ago). How do you guys manage life? I can't get any house work done, sleep all the time. I'm grumpy when awake and my kids are really missing out. My 3 yo says, "Why are you awake?" when I am...it's really depressing in and of itself. Going back to the doc tomorrow, but have had a sleep study, lyme titer, B12, basic labs, etc. with nothing found. No fibromyalgia, just a little worsening joint pain and in this last week some muscle aches. I know I'm deconditioned and that's driving me crazy, because I used to be so active. I can just feel myself wasting away. I eat junk (sweets) all the time just to try to get an energy boost. I can't keep my eyes open and I can't concentrate on anything. My house is a shambles and I'm not being a mom. Is this how you guys live? I don't have an exercising problem, I don't think. I can go for a day, on a good day, and haven't paid attention if I have a relapse afterwards, though I may well. I had 4 good days when I changed meds, felt like my old self with energy and happy and singing songs. Went to the state fair and haven't hardly gotten out of bed since. I just can't see a future like this...not that I'm suicidal, I'm not. But I can't take it any more! Thanks...
  3. pepper

    pepper New Member

    Welcome to the board. You will find a lot of support here.

    I have been sick for almost 10 yrs. When I look back on those first 2 or 3 yrs, I sounded just like you. Things are much better now for a variety of reasons.

    First, it would help if you had a definitive diagnosis. Then at least you would know what you are dealing with. Have you seen a doctor who specializes in CFS?

    Second, it would really help if you didn't drive yourself crazy if you do have CFS and can't do what you used to do. Hire a housekeeper and/or lower your standards. I had to do both. I used to work full time, be a hockey mom, Cub Scout mom, baseball mom, all my own housework, gourmet cooking, teach aerobics and teach crafts. Now if I get a half decent meal on the table after doing one errand in the course of the day, I am happy. (I cannot work any more.)

    Third, ditch the junk food. I lived on junk food for the first few yrs because I was trying to feed my emptiness and besides I was too tired to cook anything. The best thing I ever did for my fatigue was cut out sugar and simple carbs. - white flour, white rice, most packaged things. If you do this for a couple of weeks, I am sure you will feel somewhat better. It is certainly no cure but you may be able to function better. I and a lot of others here use the Suzanne Somers way of eating. It helps.

    Some day, maybe not yet, try and find what good has come of being sick. As much as I HATE being sick, miss my job and miss being the kind of mom I wanted my kids to have, there are many blessings that have come from this. I try to concentrate on those blessings on the worst days.

    Things will get better for you. Keep us posted. (((HUGS)))Pepper
    [This Message was Edited on 10/14/2002]
  4. allhart

    allhart New Member

    if you dont have this dd you defentley have something that all of us here can relate to. so welcome to the board
    [This Message was Edited on 10/14/2002]
  5. karen2002

    karen2002 New Member

    Hello--Nice to meet you! I understand your frustration with the fatique....its a tough field to plow. With some time though, one learns to pace themselves, and prioritize--well at least that has been the key for me. It requires a lifestyle change. This DD has ushered in some very beneficial changes for me. It has also given me a new perspective on what is really important in life. I try to find a slower, steady pace--and forge forward. If I feel myself tiring, I stop now, before its out of hand.
    Best Wishes,
    Karen
  6. poodlegirl

    poodlegirl New Member

    I am assuming that the docs have done extensive bloodwork? Checked your sugar, ana, checked for mycoplasmas etc? There is a gazillion things it could be. I have not gotten the dx of CFS yet either, but I have FM. My symptoms are classic CFS if there is such a thing as "classic". Pain in joints, muscles, sheer exhaustion, trouble sleeping, on and on. Keep pressing the drs, they need to rule out many, many different other disease thru bloodwork, xrays, mri etc. You are facing what most of us and I personally face everyday-the question of how to go on. It is very dismal thinking of a lifetime of this and it can get me at times. I am glad I found this board. I can vent on here and have people who knows what I am going thru. As far as you having good days and feeling normal then being "hit" with a mac truck, that is part of it. It is a very confusing disease. At times, it is ok then others you just can't imagine living that way. Then again you feel ok and boom it hits you again. Yep! That's me, however here lately it is nearly a daily thing to hurt and be exhausted. My symptoms creeped in. Slowly, they seem to hide and get stronger as time goes on. I can not remember a time when I was well then extremely sick. It just sort of meshed together. Feel a little bad then, got ok then a little owrse, then ok again. It sounds like yours is just beginning to hit you. We are here for you!