spacee- and people with a CFS sibling

Discussion in 'Fibromyalgia Main Forum' started by bigmama2, Jul 20, 2010.

  1. bigmama2

    bigmama2 New Member

    can i ask you something? if too personal, no problem.

    both you and your twin sister were sick. but she has recovered and you have not. (i am so sorry). did you both seem to be as sick as eachother as far as symptoms go? were your symptoms/illness very similar or not? and how has she recovered? does she have a full recovery, like a "normal" can work full time, social life, etc etc?

    my only sibling also has cfs. our symptoms are pretty different. we have both been sick for many years now. but both making slow progress. his sympts are SEVERE INSOMNIA, brain fog, general feeling like TOTAL crap, PEM,and turbo depression, etc. he has made progress thru massive sleep medications, also klonopin helps him in general, and doing the cfs lifestyle - ie doing nothing but rest most of the time.

    my primary cfs sympt WAS severe fatigue that is so bad, the fatigue itself is "painful". sleeping 15-18 hrs a day most days. and the other typical cfs sympts. i have made "good" progress compared to how bad it used to be. progress due to living the cfs lifestlye, and allowing my body to sleep as much as it needed. i slept and rested for YEARS!! other things that prob helped- adrenal extract supps, valtrex.

    take care
  2. spacee

    spacee Member

    Twin's symptoms were more like your sib. in the insomnia.
    And mine were more like yours in the severe fatigue.

    Twin saw Dr. Cheney. He said that while she was very sick, she lacked one of
    the criteria for CFS. That was Cognitive which he considers the real crux of CFS.
    Just read that today.

    Also, a difference was though I was sick about 3 years earlier than she, my kids
    were 1, 9, and 11. And her last kid had just gone to college.

    She hired everything shopping, house cleaning, didn't cook, didn't
    wear make up or 'style' her hair. So doing that she was able to continue working.
    Was sick about 6 years.

    One thing we had in common was that our t-cell counts both went very low.
    Another thing we did not was, she had a slight fever and I have lower than
    normal temp.

    I was more like you. Hit very hard, really nearly died, then made slow progress.
    I agree, seems like I have slept for years...feel like Rip Van Winkle. But now I
    am not sleeping quite as much. But the light and sound sensitiviy bother me
    very much.

    Twin has more energy and any one I know. The illness has become an issue
    between us. And we no longer have contact with each other. She doesn't
    understand at all how sick I am. We live in different states in a lot of ways :)

  3. bigmama2

    bigmama2 New Member

    thanks for answering.

    the whole thing is such a mystery, isnt it?

    maybe you and your sister had different subtypes of cfs. she is one of a very very small group of people who had cfs and made a full recovery. she really should be studied. maybe researchers could learn more about cfs from her. i dont know. or maybe she only had a post viral fatigue symdrome that lasted 6 years???? does she know and appreciate how lucky she is to have recovered????

    i forgot to mention that rx cortef (cortisol) helped my brother. and i took natural cortisol (adrenal supplements) which did help me. both me and bro have tried dozens and dozens of meds, supps, treatments, etc. very few things help. but the cortisol helped us both. and sleep meds help us both. klonopin helps my bro, and i "think" dr cheney says klonopin is neuroprotective. (not sure)

    i am hoping to see dr levine in nyc again this summer and get somemore bloodwork done. since i am doing "better" i think that will be reflected in my tests. specificaly ebv titers. maybe nk cell activity.

    if xmrv stuff pans out- i will get tested for that in the future.

    my heart goes out to you about your twin not understanding. and for having profound cfs. i m glad you are sleeping a little less. that is a little progress. :) two people (brother and mother) in my life understand cfs. my father does not. all my former friends do not. its really hard.

    at least now w xmrv there is a bit more HOPE that cfs will be taken seriously and treatments might be developed.


  4. spacee

    spacee Member

    You are younger than me and I have a lot of hope for younger ones.

    I am staying off things that have helped me in the past (target transfer factors)
    Cheney's latest stuff (yes, have been on klonopin for 20 years) til I get
    tested for xmrv.

    In reality I feel...if I die, I die. I have lived alot longer, with better health than
    I thought the first 5 years. So grateful for that.

    Sis wouldn't be studied if they paid her. She does have horrible memories of the
    CFS and does not want anything to do with it. I asked her to watch Cheney's
    dvd Heart of the Matter (cause I needed her cognitive input.) Nope, wouldn't do it
    and she was a medical technologist and could have helped me. Nope.

    Takes all kinds. I'm glad you have some family support. It helps.

  5. matieofleaves803

    matieofleaves803 New Member

    Who can be more cruel than family. It mystifies me. Why
    I'm so sorry.
  6. u&iraok

    u&iraok New Member

    People act so strangely when it comes to sickness. I think it boils down to FEAR. I guess your sister just can't bear to go back to where she was. Maybe she just wouldn't be able to handle it. Hopefully you can forgive her for that, I'm sure it's painful. How long has she been well, maybe she will be able to face it in time, after she's been well a time and is secure in her health.

    Well you have us to empathize with you. :) :)

    I heard a statement on Lark Rise to Candleford (a PBS show that I just love!): Well, don't quote me, my memory is bad, but something like:

    "It's not what we feel we can't do but what is needful."

    That is a strong statement and a tough one.

    [This Message was Edited on 07/23/2010]
  7. spacee

    spacee Member

    It would be a terribly lonely life if I couldn't connect with you.

    You are right about Twin. Those were horrific years for her.
    Not too many ppl would be willing to relive those in their mind.

    She has been well about 12 years. I mean brimming with health.

    Last nite I was awake in the middle and I watched a video done
    about CFS. It must have been in the early 1990's. It was funded
    in part by Rich Carson who ownes this site. They talked to so
    many very ill patients. Most of them looked so well, it was hard
    for even me to imagine the depth of how sick they are.

    How strange was that?! The video was on FB the Whittenmore
    Petereson site under discussions. Can't remember the title
    but someone from outside US was trying to find someone
    to print out her letter and send it to ABC.

    Another person replied that this video was a better one. It
    was quite long 30 mins. Talked about Ampligen but no
    retrovirus stuff.

    Just giving that info incase someone wanted to see it.

    Love you kids.