New, confused, and full of questions!

Discussion in 'Fibromyalgia Main Forum' started by emerging, Sep 24, 2003.

  1. emerging

    emerging New Member

    I am a 31-year-old female, and I suspect I have CFS. I have a wonderful psychotherapist (who was a nurse first) who urged me to get some bloodwork due to my symptoms of fatigue, short-term memory loss, difficulty concentrating, migraines, frequent fungal infections, and a general feeling of malaise.

    I discovered I have reactive hypoglycemia and chronic EBV. I did some research, and found that EBV is no longer thought to be the cause of CFS - but let me tell you, something is wrong with me. I have felt this way for the last several years (although the migraines only began 6-9 months ago). I chalked it up to being crazy - because I have a history of depression since age 15.

    Since 1998, my symptoms have gradually worsened, even though I have been on an antidepressant. My partner is getting very worried about me, and often gets annoyed at the way I lose everything and forget the things she tells me.

    In the last few weeks, I've changed my eating habits and increased my medicine, hoping to feel some relief. Driving home the other day, I realized I've been waiting to feel better for a long time. Now I am afraid that I will never feel "better", and I should be grateful my symptoms are not as bad as some people who have this illness. I don't experience pain, but for several years my partner has teased me because I tell her things are "biting" me all the time (in various parts of my body).

    I really do wonder if I'm just crazy - and my primary care physician isn't much help. I find myself growing more angry and frustrated, yet I know stress can make me feel worse - so I'm trying to find some answers.

    An earlier post mentioned the possibility of a link between child abuse and CFS/FM. I don't know about that (indeed, I was abused) - but I wonder if I brought this on myself as a result of SELF abuse during my adolescence and early adulthood. In high school, I was anorexic and bulimic, and I abused drugs and alcohol in college.

    So many questions swirling through my head, and so little energy to process everything. I come here, hoping to connect with others, and wondering if I will ever find the answers...

    Sincerely,
    emerging
  2. Shirl

    Shirl New Member

    Glad to have you join our board. I do not have CFS, so I just stopped to welcome you.

    We have many members here that do have CFS, so will let them reply to your questions.

    Again, welcome to the board.

    Shalom, Shirl
  3. Shirl

    Shirl New Member

    Shalom, Shirl
  4. suz41

    suz41 New Member

    Hi Emerging:

    I don't have CFS just FM but there is alot of overlapping between the two and many members here have both. You will find alot of good support and probably will get your questions answered. I think though you should follow your therapists recommendations and get a good workup done, blood tests and all especially with EBV. Your therapist sounds like a smart person. Do some research on this board and list your symptoms from mosy frequent and distressing to least and bring it to your doctor so you don't try and memorize it during the visit. Hope this was helpful. Keep us posted and again welcome.
    Take Care,

    Suz
  5. mamacilla

    mamacilla New Member

    you'll find a lot of very good and helpful information here. i don't have cfs, but i do have fm and chronic ebv.
    i was dx'd with the CEBV about 9 years ago, and as time goes on, the flares are much less often.

    hang in there, and please don't equate depression with being crazy!

    i am always losing things and forgetting stuff too.
  6. emerging

    emerging New Member

    Suz - Problem is, I don't know where to go from here. My doctor isn't helping me at all... In fact, I am currently having it out with her billing dept. because of the daignosis codes they submitted for my labwork. My insurance says they won't pay, and I could get stuck with a $525 lab bill. What's even more frustrating is that my doctor isn't calling me back to discuss the lab results.

    Mac - I don't even understand what "chronic EBV" means. Am I supposed to have follow-up labs to see if the titers come down? All the nurse said when she called me about the lab results was, "It looks like you had mono recently." I don't believe that. Yes, I've been tired, but not much more than usual. See, complicating this is that my grandmother just pased away, so I have been more stressed and sad.

    I have never had mono that I know of. Between the ages of 21 and 25, I had many cases of acute pharyngitis, where I felt like I was swallowing razor blades. Those episodes basically resolved when I had my tonsils out at 27. I was never tested for mono during that time.

    Shirl and Shirell - Thanks to both of you, also. It's good to be heard. Lately, I feel like I'm invisible and think my doctor just wishes I'd go away.
  7. Mikie

    Mikie Moderator

    Welcome to our board. Listen, Sweetie, none of us brought this on ourselves. Researchers are leaning toward a genetic connection. It doesn't have to run in one's family to be genetic, but it, or many associated illnesses, may run in the family. A faulty gene, or genes, may allow any stress to our bodies/immune systems to trigger our illnesses.

    Chronic EBV may not be "the cause" of CFIDS, but it needs to be addressed. I am pulsing on Famvir for a suspected Herpes-family virus and it is helping me. I Herx when I go on it and again when I pulse off. The reason I Herx when I pulse off is because I've been building up my immune system with colostrum and whey and will be adding the transfer factor sold here soon.

    Please do a search on hypercoagulation here. It will bring up all past posts on this condition which accompanies chronic stealth infections.

    BTW, I have FMS and CFIDS, both triggered by a mycoplasma infection 13 years ago. I have been on ABX treatment for two years. I am also pulsing the Doxycycline. Again, I Herx when I go back on it and when I go off of it. The transfer factor may allow me to get off both the Famvir and the Doxy.

    I still suffer from low energy, but it is better than before. Also, even though my thyroid tests were in the "normal range," my doc put me on 25 mcgs. of Synthroid, and it has made a big difference. Some have done well on Provigil for energy, but it had a paradoxical effect on me.

    Hope I have given you some things to think about. There is sooooo much info here. We have a great library and you are at an advantage when researching due to a medical background.

    Love, Mikie
  8. Rocinante75

    Rocinante75 New Member

    Here is a suggestion about something I do all the time. When I have lab work done, I always make sure copies of the lab results are to be sent to at least one of my other doctors. Thus, I can gain easier access to the results if someone is sitting on the results and not giving me answers. With the new HIPPA privacy laws, you may have to put in writing your request to have previous lab work sent to another doctor (such as your therapist). Re: the cost of the lab work, send your doctor a letter saying there seems to be a problem since the lab work is not yet being paid for. Mention that you rely on your insurance and request that the doctor resubmit paperwork regarding diagnostic codes for lab work. Include a sentence that you are sure the doctor does not want to have difficulty with a lab that the doctor's office uses. Make the nonpayment the doctor's problem! Hope this helps.
    [This Message was Edited on 09/25/2003]
  9. mamacilla

    mamacilla New Member

    it was never really explained to me by a doctor, but it's like being able to get mono more than once. i have no idea what makes it flare; i get about 1 or 2 flares a year now, much improved! when i was first dx'd, i was in bed for almost 4 months and was shortly after that that the fibro dx was made.

    i think of it like this: some people who've had chicken pox "flare" later with shingles; some with the epstein barr virus "flare" with that. something like 90% of the population will test positive for ebv, but never show symptoms, ie, never get sick from it. i don't know why we do and others don;t.
  10. mamacilla

    mamacilla New Member

    it was never really explained to me by a doctor, but it's like being able to get mono more than once. i have no idea what makes it flare; i get about 1 or 2 flares a year now, much improved! when i was first dx'd, i was in bed for almost 4 months and was shortly after that that the fibro dx was made.

    i think of it like this: some people who've had chicken pox "flare" later with shingles; some with the epstein barr virus "flare" with that. something like 90% of the population will test positive for ebv, but never show symptoms, ie, never get sick from it. i don't know why we do and others don;t.
  11. emerging

    emerging New Member

    I could just cry with relief, knowing there are others out there who understand all of this. Thanks to this board, I have found a wonderful network of people, a fabulous research database, and a support group in my area that I plan to attend.

    I can't thank you enough. :)

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