Need some hope

Discussion in 'Fibromyalgia Main Forum' started by LISALOO, Jun 20, 2008.


    LISALOO New Member

    I've had CFS for 4 years, getting worse not better. I'm 30, and I feel so hopeless. I feel like at this point, I don't have any chance to get better. Most of what I read is people who get better have only been sick for a year and a half or less.

    And since CFS is a wastebucket diagnosis, I feel when i start a treatment it won't work since doctors and I don't even know what I have. Some drs say yes, you have this coinfection, most say no. I look at the test results and see nothing wrong. Plus I've tried everything and nothing has even helped for a little while.

    Just need some kind words and some hope.

    [This Message was Edited on 06/20/2008]
  2. cookie1960

    cookie1960 New Member

    dear lisaloo,

    There is hope! I was dx'd with FM 5 years ago. Believe it or not - I'm beginning to feel somewhat better. I know CFS and FM are different, but I also felt the same way you did.

    Different doctors, different meds, different outlook and things seem to be turning around. Don't get me wrong - I still have those bad days - but there are some good ones too.

    Don't give up!

  3. Rockismom

    Rockismom New Member

    I know this is very difficult for you. I can only say that you should try to take your life as it is and do it one day at a time.

    Remember, although we would not wish our illness on anyone there are so many other illnesses in the world that are so much worse. I bet if you stop and think about it that you could think of at least ten right of the bat - right?

    And please know; you will get oh so tired of all the "get betteer" suggestions but at least there are options out there and maybe someday you will find your "fix"!

    Don't let this dd get best of you. If something new is offered - medicine, therapy, whatever - then try it. If it works GREAT! If it doesn't then maybe the next one will!

    When you are feeling like you've hit the wall keep tellling yourself tomorrow is a new day. I don't know about you, but I love seeing the sun come up in the morning and listening to the birds sing their little hearts out! It certainly beats the alternative!

    I've been coping with my dx for nearly 12 years...maybe longer and there are days when I admit that I am just down right sick and tired of being sick and tired! Just always remember that you are not alone. This is a wonderful place to come for support. Visit often!

    Good luck and God BLess,
  4. poodlemum1

    poodlemum1 New Member

    Im sending you a big hug. Try to hang in there. I was so sick about 7 years ago and thought I would never get better. I ended up having to make some tough choices and change the way I was living life. The stress I had in my marriage and job was putting my fibro over the roof. I also had cancer. Once I started putting me first and taking care of ME things changed. I now live alone and have removed anyone and anything in my life who created stress. I make sure I get the right amount of sleep and I eat well. I found the meds that work for me and I decluttered my brain. I keep life simple and live one day at a time. Its worked and I feel so much better. I even started lifting weights (light amounts) and that has helped so much. Its a long slow road back but it can be done. Please dont give up on yourself.
    hugs poodlemum
  5. findmind

    findmind New Member

    I've been sick for 18 years, and I have not give up my hope even yet. I am not taking one thing for my M.E. except sleep meds.

    I am not "into" trying one thing after another, HOPING I'll stumble onto something that works for me. I also don't have the brain energy to do so.

    Dr. Jonathan Kerr, in the UK, who has done genetic studies on us has a video on UTube, where he states it will be a year for a treatment, and the same year for a specific diagnostic test. that's hopeful!

    I have read so many research papers, treatment protocols, and personal stories from patients about what is helping them get well, that I think there are ways to help ourselves out there, but because I don't have a clue as to which protocol will help me, specifically, I am just waiting for the right one to come along and be proven for all of us.

    I think it is coming, and soon.

    Meanwhile, do everything you can to get restorative sleep: a sleep study, meds for sleep, and extra sleep every time you feel like you can. I think that has helped me the most over the years.

    I have about 5 other major diagnoses, so my CFS/ME is complicated by those, but I still have hope that I can do my best to take care of myself and make sure I put my stamina and health first before most other things. (My family's unexpected situations are the exception: I will do all I can to help in those instances, then crash and heal afterwards.

    Remember, about 40% of patients do get much better in the first 5 years, and more even after that, so it is NOT hopeless, ok?

    Hang on, hang around with us, visit the chit chat message board and have some fun, and take good care of you!


    LISALOO New Member

    thank you everyone for your kind words,

    That 5 year stat is scary, I'm already at 4 years and not healhier!

    Everyday just seems so hard. I'm just not feeling like it's all worth it.
    [This Message was Edited on 06/21/2008]
  7. andreake

    andreake New Member

    Both my sister and I were bed ridden with this DD. I took morphine for a few years just to cope.

    I unlike the other writter tried EVERYTHING I could to get better. What finally helped me was Vitalaxin sold on this site and Transfer Factor, also on this site.

    I am now working full time, taking care of my house and kids and just take Ultram for pain.

    I am not 100%, but usually 70-80% which is o.k with me.

    Hang in!!!!
  8. findmind

    findmind New Member

    I didn't explain that very well.

    I do everything possible thru my drs to feel better...

    They have prescribed thyroid meds, sleep, anxiety meds, Provigil as needed, Ultram as needed, and gabapentin for neuropathy.

    I meant to say I do not try the unproven and only anecdote protocols so many here try.

    I do take some vitamin supplements, but only with my drs knowledge and approval, also.

    Sorry I didn't clarify that well...

  9. Dee50

    Dee50 New Member

    Hang in there Hope you have a good day very soon.Never let this DD take your hope away sometimes its all we have to hang on to:)