Is CFS a life sentence?

Discussion in 'Fibromyalgia Main Forum' started by mcrenfrow, Mar 26, 2007.

  1. mcrenfrow

    mcrenfrow New Member

    Hi, I'm an 18 year old mom of a precious nine month old boy, and recently I found out I am about one month along with my second. About 7 months ago I had strange, vague and very gradual symptoms that slowly began to appear over about a two month period of time. At first I didn't pay too much attention to them, but as they grew stronger and more debilitating I began to get more and more concerned. What at first was just sleeping for longer periods of time, and feeling a slight inability to concentrate turned into being confined to the bed and feeling completely out of touch with everything going on around me along with a terrible short term memory. I tried to talk to my family about it, but everyone seemed to pass it off as depression or simply me not "getting out enough."

    But I knew something was wrong. I went to urgent care and got bloodwork done, my mono spot was negative, and everything else indicated that maybe my family was right. I still wasn't convinced and turned to my family physician for more bloodwork including an HIV test, which petrified me. About a week later I got a call from one of the nurses, and she told me in fact I did have a positive mono test. I was so elated after she told me that. I think she thought I was crazy when I got so excited, but I was so happy it was "just mono"- nothing serious, right? And boy was I wrong, ever since then my symptoms have lightened a little since I wasn't able to get out of bed. I am able to go out but feel completely disoriented, dizzy and exhausted. Everything is such a challenge. I can't even enjoy my son like I want to be able to. I get so irritable from the exhaustion and emotional toll I breakdown constantly.

    My biggest worry is that I might have to come to terms with the possibility of having to put my next baby up for adoption. It's heartbreaking to admitt that, but I have to think about what would be the best him or her. I don't even know for sure if I have chronic fatigue or not, but something in my gut tells me I do. My doctor refuses to even consider it, even though all of my extensive blood work including thyroid shows no problems. and I'm sure no doctor will take me seriously knowing I'm pregnant now, and they will use that as an excuse for the prolonged symptoms.

    I've done so much research, and it makes me 10 times more depressed because everything is so negative and discouraging. Things like "there is no effective treatment" and "current treatment methods offer little relief" was heart wrenching for me to read. I'm in desperate need for some optimism. There is so much controversy on what works and what doesn't it gets confusing, so I'm willing to try whatever has worked for someone and hopefully with experimentation something will work for me. I don't want to believe this is going to sabatoge my happiness and success for my entire future. I don't see how I could go on living surrendering to this illness. I want to get it under control, and feel at least half normal again. I want my boyfriend, my mom and the rest of my family to understand how I feel so they can support me instead of doubting me, and most of all I want to be a better, more active mom with my son.

    Thank you for reading this, and I would really appreciate any kind of comments that might inspire some hope or advice that I can hang on to.

    ~Concerned young mom
  2. LISALOO

    LISALOO New Member

    CFS is lifetime, in the fact that there's no cure.

    However, there is chances of remission. Especially if you you are proactive early. Also, you are young so there are great chances that you can improve.

    You may improve later in your pregnancy, lots of people do. And it may stick after birth.

    I feel for you. I know how you must be feeling.

    After six months of symptoms you can be identified as having CFS, so I suggest going to a specialist.

    What works for one may not work for another. That's the problem with this disease, so many things are unknown. We may all have different things that caused our diseases, so we may react to diffeent things. I've found things help others butnever me.

    I would find a specialist and get everything else that could be wrong eliminated.
  3. KelB

    KelB New Member

    Hello there.

    There is certainly a reasonable chance that you will experience some sort of remission - after three years of CFS I've felt completely "back to normal" for three months now. Who knows how long it will last? But I'm making hay while the sun shines.

    The way my Occupational Therapist explained it, people are affected in three different ways:

    - One-third experience some kind of long-lasting recovery (I don't think anybody has formally studied CFS long enough to catagorically claim that they never relapse again)

    - One-third of people experience an ongoing pattern of remission/relapse

    - One-third of people don't have any kind of recovery

    Please don't think that the sun will never shine for you again - you have a two-thirds chance of experiencing some kind of improved quality of life than you have now.

    Thinking of you.
  4. deliarose

    deliarose New Member

    I think things are looking a lot more positive on the treatmetn side than they have done in years.

    First off, there's a lot of buzz around antivirals, particularly Valcyte.

    Roche pharmaceutical has coughed up 2 million bucks for a clinical trial using Valcyte in CFS patients. The general press covered this. Google Valcyte, CFS, Jose Montoya, Stanford.

    One of the co-founders of PetSmart was in this trial adn apparently made great progress on this drug after 18 years sick.

    I don't think that is an option for a pregnant woman, but can I recommend you check out the threads/posts here with the words methylation and glutathione in the title.

    This is a new approach. (I'm on it. It's working for me). Cheap. Low-risk. All natural. non-toxic. (sound like a saleswoman..sorry ...)

    I took transfer factor for a long time (this is an antiviral of sorts.. but not a pharmaceutical) and that got me on teh road to recovery, but I'm confident I can get to the finish line by fixing some of the other underlying biological problems.

    It's all there. Just take a read of it.

    Also, check out the stories of 3 people who have recovered and left the board. Search under Stormyskye, Elsa and also Rich Carson.

    Rich Carson is the CEO of Prohealth. He's back at work aftetr 17 years of disability. He posted under the title moderator.

    Also, my infectious disase doc who treats with TF, or Valcyte and a host of supplements, says he has treated 500 people and 75 percent responded.

    But most docs are not using his approach...so most people are not getting that kind of treatmetn.

    They're being seen by general PCPs who don't have a clue and are doling out drugs that are bandaids. Don't waste yr time with those guys. Get a specialist.
    My 2 cents.

    Delia
  5. bendy_kendy

    bendy_kendy New Member

    I really feel for you.

    I cant even imagine how hard it would be to be preganant and have a little one while suffering from CFS.

    Im 22 now n got diagnosed last year... i had the same problems with docs not believing i was ill coz all the routeen tests were 'normal'!

    Its frustrating.. the only reason i got diagonsed was coz my mother took me to a chronic fatigue specialist!!

    Im in Australia and we have little treatments here and very few doc's that recoginise CFS as being a real disease!

    Good news is Belgium and the Us/Uk have many services..

    Things might be shit for a while.. but u will improve slowly.. but seek help.. dont expect what some docs say.. and get 2nd, 3rd or even 100 opinions!

    Dont give up your child.. seek help.. family, friends anyone..

    Im hoping i will be able to have children one day..but some ppl with CFS find it hard to get pregnant (i guess coz ur immune sysytem is o low).

    Goodluck with things.. stay strong.. your not alone