Don't know what to do anymore

Discussion in 'Fibromyalgia Main Forum' started by LISALOO, Aug 28, 2008.


    LISALOO New Member

    I am so frustrated. I was on Valcyte and feeling pretty good after a month on it fatigue wise, but my back started hurting again, my ic which has always been under control since CFS flarred up with the valcyte. Tremendous pain.

    Last Sat I felt so good we went to the Wisconsin Dells for a couple of hours, well, haven't moved much since. Exausted! Gave up the Valcyte, but my IC is still screaming.

    I feel so lost and confused. Some drs say "you might have this virus", others say "you may have lyme", others have no idea. I wish there was a probe that could tell me what's wrong.

    After 4 years I've had it, I go to bed and think I can't do this another day. I've already missed out on 4 years and after being sick this long think it's hopeless. I just see myself continuing to get worse.

    Thanks for listening to my rant.
  2. k5334

    k5334 New Member

    I've been out of work for 2 years due to fm and have had health problems now for 20 years. It's hard but it's not impossible. You have to keep your spirits up!! Treasure the good days. There is always hope that you will one day have more good days than bad days.

    LISALOO New Member

    thanks for the kind words. After four years, I know I'm hopeless. I've tried 100's of things, gone to tons of drs, only gotten worse. NOthhing has even made me a little better. i should be enjoying my late 20's early 30's.
  4. porchswinger

    porchswinger New Member


    I'm glad you gave up on the valcyte. I started taking it on Jan 1, 2008 and I took it till right after the June conference where Montoya said there was no difference in fatigue between the valcyte group and the placebo group. In sum, it doesn't work. Cost me $6000 out of pocket before I found this out.

    I can definitely say that I am sicker since before the valcyte and I have been sick with CFS since 1986. Not really sure why this is.

    As much as I want to be cured, I think it is better to accept that there is no cure rather than take expensive stuff that doesn't work. Doctors do not yet have the answers we seek. I find it helps not to overexert. I exercise (yoga and a little weight lifting on the cybex machines)but no aerobics. And I avoid people with contagious viruses because when I catch a cold, the cold symptoms aren't terrible, but my fatigue worsens for 3 or 4 months and more.
  5. gapsych

    gapsych New Member

    Hi, it has also been four years for me. It can be so hard at times, can't it? I know exactly how you feel.

    It sounds like the trip put you into a flare. I do not know that much about Valcyte, so maybe others can give you advice about that.

    It has been ages since going to the Dells. You said you drove. If you do not mind my asking, where do you live?

    I lived in Chicago for the last 14?) years and just moved two hours south to be closer to my family. The cost of living is also much cheaper.

    Take care.

  6. Belinha

    Belinha New Member

    I had a bad accident years ago and couldn't stomach any Meds that required food before taking, even after eating and one day a Dear Dr.who is now retired gave me a prescription for ranitidine? AKA Zantak a lot less expensive acid reducer walmart brand. I have never had problems taking those darvocet, vicodin, etc... It worked for me, I usually take 2. Just a suggestion.

    Hope it helps. Sorry I don't have a full profile yet very new to this cfs. Love Belinha.
    [This Message was Edited on 08/30/2008]
  7. Shirl

    Shirl New Member

    So sorry you are in so much pain. I have had FM now for over twenty years.

    I tried the pain pills, all kinds, but am seriously allergic to them all. All that I can take is Advil gel capsules OTC, and a small amount of Xanax under the tongue for the pain toghter. A lady years ago told me about this combination on this board, and it works well with no side effects.

    What I do when I am in a Flare, is rub my back (mine is worst in the upper back and across my chest) is use ThermaRaps, or rub what hurts with a rub called: Benalg, its very strong, so be sure to wear plastic gloves, and wash your hands vigeroously after using it. Do not get it in your eyes are between your legs! Burns like fire.

    I keep a heating pad in the bed at all times, heat helps with FM pain, cold compresses makes it worst.

    I was diagnosed with FM before they changed the name from Fibroalic. Since there is no inflamation in the area that is hurting.

    Try do a little work, and rest, that way you won't go into a bad flare. I have lived like that for 7 years that it has been very bad. Before that I could handle the pain easily, but it does get worst if you do not rest often as you get older, also if I go out, I get everything ready the night before, that way I do not have to rush around getting dressed. Helps a lot.

    I also stay out of large warehouse stores like Wall-Mart, all that walking on cement does not help us (not to mention the bright lights that make me sick too). If I need a lot of groceries, I have someone push the cart for me, that is always a killer for pain.

    Good luck young lady, I have been where you are and raised three kids, a grandson, and had a child nursery for 11 years while in that pain! I just kept pushing. I wish someone had told me to rest more often years ago!

    Shalom, Shirl
    [This Message was Edited on 08/28/2008]
  8. goldengoddess

    goldengoddess New Member

    Ok, just kidding.... are you smiling at least?

    This is the place to rant! Get it all out, feel the love and support and face another day. We're here for you, and we're all in the same boat: "Misery loves company".

    I don't know how I do it, but somehow the only thing that has gotten me this far is my annoyingly positive attitude. Being like this is better then being worse on some medication. And you went to the Dells! You may be paying for it now, but you went!!!

    LISALOO New Member

    I live in the suburbs of Madison WI, grew up in Milwaukee, love Chicago. So the dells are like 50 minutes away. We went on the ducks (hubby never has)

    I did't want to give up on the valcayte. After the first time in months I felt so great! After only one month!

    I just feel like I don't have anything difiniative, I'm only going to get worse, I don't want to watch myself get worse. In four years I've gone down 80%, 20% each year. I don't want my husband to deal with it.

    I really feel I have nothing to be positive about. I just wish something was wrong. All the viruses, the IGG's are bad, but the IGM's are fine.

    I have no chance of getting better so I think it would be simpler to end it.

    I get that 1/3 get better (not 100%), 1/3 stabilize, 1/3 continue to go downhill, I'm the downhill.
    [This Message was Edited on 08/30/2008]
  10. Catseye

    Catseye Member

    Have you seen my thread "toxic guts, toxic body, why do a comprehensive stool analysis"? I have been sick a little over 5 years but I'm finally getting over it because I found the right doctor. He does tests and then recommends supplements, which are working beautifully.

    I was bedridden a long time ago. A year ago, I didn't dare lift anything heavier than my cat and she's twelve pounds. A couple of days ago, I lifted a 5 gallon water bottle out of my truck. What's that, about sixty or seventy pounds? And I can ride my bike. He's not a medical doctor, that's why he can recommend tests and treatments that work. Medical doctors are only allowed to prescribe stuff that is FDA approved and that's exactly the opposite of what we need to get well.

    good luck

  11. justjanelle

    justjanelle New Member

    5 gallons of water weighs 40 pounds. Plus the weight of the jug. I used to backpack in a former (healthy)life. A pint of water is 1 pound.

    I'd love to be able to lift 40 pounds these days. I have to have DH buy the water jugs and bring them in. Hate not being able to do things I used to do without thinking twice.

    Lisaloo, I wish I could give you some advice but all I can do is sympathize. I think it's perfectly natural to be discouraged suffering with this illness that no doctor or medicine can really help with, but I'm so sorry you're flared up and feeling so badly.

    Soft hugs and best wishes,
  12. ellikers

    ellikers New Member

    I'm sorry you are so frustrated. It sucks having a flare, not matter what size or intensity it is.

    The most I can say to you is that even when people are getting better, they can still have flare ups from activity. So you could be getting better, but there are still down days and times where your pain comes back to bite you for a bit. At least that was my experience.

    Give yourself credit for the amazing strength and determination you have. You have so much courage to be living your life in spite of this illness. I'm young too (25) and was about 22 when I was diagnosed, but I've gotten much better (am pretty much in remission of CFIDS with some other random health things but I'm back to myself for the most part).

    It is possible to get better. I know it's frustrating to keep trying, and it's really disappointing when the next "cure" is not helpful or causes things to get worse. Just hang in there. I know it sucks and really, no one should be expected to deal with what we have to deal with but that's just the way life deals things.

    Take care!!


    LISALOO New Member

    Still hanging in. I've been tired so the computer has been a no. I just hate getting 20% worse everyyear.

    Thanks for your concern.
  14. pawprints

    pawprints New Member

    If the Valcyte helped, could you not try the Elmiron for the IC pain. It is a great drug for the pain...may take a bit to start working, but worth a try.

    Don't give up!!!

    LISALOO New Member

    Thanks for the thought of elmiron, but I tried it 5 years ago and it caused me to lose 1/4 of my hair very quickly so then I stopped it.

    I stopped the valcyte but want to go back on.

    After 4 years I', thinking health is impossible.[This Message was Edited on 09/02/2008]
  16. hensue

    hensue New Member

    there are to many promising things on the horizon. i know you are young and it is very hard. you are not going to get worse! i am not any worse than 13 years ago. If i think back i was in so much pain i could not move. So learn your limits. When the doc at Emory clinic. Told me you have learn to deal with it. Good days dont overdo. Bad days do your best. It will get better i promise. It hurts to hear all these things sometimes i think i be in remission and bam. We are getting so close dont you dare give up. You are here to help us also. We need it.
    Tomorrow is a better day
    Let us know ok
    I am glad you did get to go off. The joy of just feeling good was great with the valcyte. Other drugs and treatments are out there. We will tap in to yours too!

    LISALOO New Member

    I was on valcyte for CFS. It has a lot of side effects and potential issues, so look up posts on this.

    LISALOO New Member

    Thank you for your response, unfortunately I've been getting 20% worse each year. I think since they can't even figure out what causes these diseases it will take forever to find a cure.

    Plus being sick so long, I think my chances are nil. Everything I've read says after 1 1/2 year, your chances go way down.

    I don't want to sit and notice each year how I'm getting worse.
    [This Message was Edited on 09/02/2008]

    LISALOO New Member

    Valcyte is only for HHV-6 infections, I would not take it for anything else. It's been shown to cause cancer in animals and other side effects.