Worst flare-up ever

Discussion in 'Fibromyalgia Main Forum' started by Smurfette17, Jan 7, 2009.

  1. Smurfette17

    Smurfette17 New Member

    Hi everyone,

    I just need some support to keep me going. As I said in my joining post, I've been sick for about a year (Jan 24 2008 to be exact).

    The last 2 days I have been bed-ridden (my mom just helped me take a bath and come to the computer for a moment). I have never felt this weak/fatigued or been bed-ridden for so long. I am scared that this it for me, that it's all downhill from here. I can't go on like this. It is excrutiating to be in my body.

    I'm scheduled for my next appt with Dr. Lerner on Monday. Currently I'm in Buffalo NY at my parents'. I was supposed to have returned to MI yesterday with a friend but I was too ill to even get out of bed, as I said. I really hope Dr. Lerner has something helpful. I had another flare-up about a month ago (not this bad), and he thought I had a cold or something on top of my regular CFS.

    This time, I think many things happened: I may have a stomach bug, as I'm sick to my stomach. Two days ago I did the most idiotic thing and walked for 20 mins in the snow (for something stupid), and felt horrible right after. In the last month, I've tried different antidepressants and they all make my CFS symptoms worse-- I think starting and stopping these meds has put my body through the ringer.

    I haven't seen my husband and my cats in almost a month! I want to go home. My husband is a physician, but there's nothing he can do for me, especially from a distance. At least I'm with my parents who have been wondefull. My mom has been literally spoonfeeding me. I feel like a baby.

    Ok, back to bed.
  2. gapsych

    gapsych New Member

    You are very sick. Look at all the things that have happened. We can often do nothing and still feel very sick. Sometimes it is just a no win situation and that is frustrating.

    How hard to be away from your husband and cats.

    What kind of doctor is your husband? He may be able to help with finding information.

    What medications are you on and how long have you been on them?

    You are probably right that starting and stopping the ADs have been making you feel worse. You may also be going through withdrawal.

    Are you weak but also in pain? I find tramadol helpful for the pain and Provigil to give me energy.

    But talk to Dr. Lerner as we all react differently and I do not know what medicinal limitations you would have if you are on antivirals.

    I know this is scary. I was in the most horrific flare last year. A slightly higher dose of Zoloft helped me actually get out of bed.

    I can not tolerate the SNRI's but can the SSRIs.

    Thank goodness for your parents.

    Good luck on getting to your doctors appointment.

    [This Message was Edited on 01/07/2009]
  3. Forebearance

    Forebearance Member

    I'm really sorry to hear about your bad flare-up, Anita.

    I hope you will feel better. Please hang in there.

  4. Smurfette17

    Smurfette17 New Member

    Thanks everyone!

    Again, my mom helped me shower and get out bed.

    There is a stomach bug going around here too. However, I now think that on top of a regular flare-up (maybe because I walked too long- still mad at myself for that), I am going through drug withdrawal. I am still queasy, don't want to eat (which probably makes me more weak) and now having sweats. No fever. I am sure the sweats is because of the drug.

    The story with the ADs is this. At the suggestion of my therapist, I went to see a psychiatrist. I did feel depressed-- who isn't with CFS??? I had no anxiety. But I really wanted more help with sleep, because my sleep quality is so terrible. She put me on trazadone, which made me sleep better, though not great. One week later I also started Cymbalta. I was just on it for 2 weeks and while it did give me some more energy and lifted my mood a bit, it gave me crazy anxiety symptoms (physical, not emotional) and gave me palpitations. Since Dr. Lerner has determined that I have cardiac issues, I decided Cymbalta was not for me! The psychiatrist also gave me Ativan to counteract any anxiety. I am now sure that I became dependent on it. When I went off the Cymbalta, I started Zoloft, because I had taken it 6 years ago (pre-CFS) with no issues and it worked really well. This time it made me feel worse. So now, I went off the Zoloft and am slowly going off the Ativan. It is really, really hard. When I take the Ativan, I feel way better, so I am sure this is withdrawal (she's having me taper). I think it's withdrawal from both the Ativan and the Zoloft. When this is over, I never want to try these drugs again. I felt my depression was under control with therapy and things like massage, meditation and really, just petting my cats! I don't know why I decided to add drugs to the mix.

    This all happened in-between my appts with Dr. Lerner, so he doesn't know all this happened. Of course I will tell him on Monday. I'm sure he'll "yell" at me.

    My husband is a surgical resident, so CFS is really outside his area. He does think I am going through withdrawal, though. He had warned me that Ativan can be rapidly addictive. I wish I'd paid more attention...

    At this point, I just want to get home but I also worry that I have better caretakers at my parents' home. My husband is never home.
  5. charlenef

    charlenef New Member

    Hey I live in Buffalo NY yr round(cheektowaga) Im sorry your feeling so bad.Im in bed all the time from fibro/cmp I only leave for drs appt or if my hubby takes me to a small store for 20min or so Ive been like this for 5yr.I hope yourup and around soon hugs charlene
  6. Forebearance

    Forebearance Member

    Man, that sounds rough. I hope you feel better soon.

    When I hear people on here talking about taking drugs for sleep, it seems they usually talk about Klonopin.

    I take melatonin, calcium, magnesium, and thyroid hormones for sleep.

    Rats. It's too bad you have to go through this. I'm glad you do have caretakers right now.

  7. Smurfette17

    Smurfette17 New Member

    Hi everyone,

    I just wanted to post an update. I finally made it back to my house in MI, despite feeling sick and the terrible weather we’ve been having here. I’m still feeling very fatigued and run-down. But I feel things are improved, and it is such a relief to be in my own home.

    So, I saw Dr. Lerner yesterday. I think that many of the patients cancelled due to bad weather because he was on time and was able to spend a lot of time with me, my mom and my husband. He couldnt’ say what caused this flare-up (overexertion?), but he said the stomach issues could be due to: a. stomach bug; b. me coming off psychiatric drugs; c. the Valtrex itself. He said it likely is from the Valtrex, so he is switching me to Famvir (I’ve taken the Valtrex for 11 weeks, so not sure why I would have developed a problem 9 weeks into it).

    The good news is that my EBV has been negative for the last 2 tests. However, he wants me to stay on Famvir longer in case the virus starts replicating again. The bad news (but good that we caught it) is that my HHV-6 is now active (this has been true for 2 tests in a row). It’s not super high (1:160). He wants me to wait a couple of weeks, get stabilized on the Famvir and then see him again so he can start me on the Valcyte. He didn’t want me to start it right away because he said it’s pretty harsh and will likely make me feel sicker. He also advised me to take as few drugs as possible (including antidepressants, etc etc) because the Valcyte would be hard on my liver.

    He also emphasized again that the treatment can be long, and I should stay the course and that I will get better. I think he felt it especially important to stress that to my husband, since he’s a surgeon and used to seeing much quicker results. My mom has been very worried during this last flare-up and it was also good that she came. She has liked and trusted Dr. Lerner from my first visit back in September, and I have to say that my mom’s instincts are usually right on.

    So, I’m home now and just resting and taking it easy. I guess it’s Famvir for me, then Valcyte. I hope I don’t have issues with either one, but I’ve read that Valcyte can make you feel truly awful. Well, I already feel bad now, so I’ll take the risk.
  8. Smurfette17

    Smurfette17 New Member

    I forgot to ask in my post yesterday whether anyone can share their experiences taking Famvir or Valcyte, and especially both together. (I know there is another Valcyte thread about how it has helped people, but I'm just wondering what to physically expect as I take the drug). Thanks.
  9. emmally

    emmally New Member

    Hello, I will give u a brief summary of my valcyte adventure. I am going to be perfectly honest with you. It has been living he%%. But please keep in mind that I have read many many posts where people have little to no side effects or "herxing" and get better. That part I am still puzzled on because I have been told that getting sicker means it is working. But I have learned not to stress about reading stuff like that because everyone is different. I have also ready of people feeling bad for only short periods of time like a month or two. So here goes my summary:
    Month 1-2 were not that bad and I begin to worry because I thought maybe it was not working because I was not that much sicker. I felt a little more tired and nausious and out of it than usual. Kind of like how I would feel pre valcyte on a worse day.
    Months 3-6 were pure he%%, words cannot express what I went thru. I dont know if I am even ready to talk about it. I might need to see a shrink one day to be able to get over it..lol.... Allthough around month 4, I had a couple pretty good weeks. But immediately following those good weeks, I had several severly stressful events like my father almost passing away. So that could have set me way back and I possibly could of started to of felt better than and continued to improve. Also, month 4 was when my tests results started to come back in the neg range. In Months 3-6th, I had never been that sick in my life, even on my ultimate worse pre valcyte days. Than around month 7, I started to feel way way better. I still have a long ways to go. But I am finally getting better weekly. Allthough, these past few days I have felt the worse that I have had in a month but I am going thru some stressful disability payment issues and have a bit of a cold. So I am staying in bed today.

    MY best advice for you would be to take it very very very easy while you are on valcyte. The more you rest, the faster you will get better. Do the LEAST amount of activities and any kind of work that you can until you get the go ahead from Dr. Lerner. I am also of a patient of his and think the world of him. I have never in my life met anyone smarter than him and I am highly educated myself (who wouldnt know from my posts..lol) and have met many many gifted smart people. I really feel for you, I know what its like to be very sick and young and have to go thru this....So keep your head up and follow lerners advice. He is a genious...