Drs say CFS exhaustion is worse than what chemo patients have

Discussion in 'Fibromyalgia Main Forum' started by maryann1958, Feb 23, 2007.

  1. maryann1958

    maryann1958 New Member

    Doctors say CFS exhaustion is worse than what chemo patients and cancer patients experience. People without this disease think when we say we are tired and exhausted it`s just the regular tired they feel after a long days work, but it's much worse than that. I sure wish people understood how we really feel, rather than telling us we are lazy. If only they could walk in our shoes they would realize it's no bed of roses.
  2. greatgran

    greatgran Member

    Good post, this says it all.

    God Bless,
    greatgran
  3. ILM

    ILM New Member

    I watched my father go through chemo and radiation and he was much worse off than I have ever been with CFS.

    He was so sick he couldn't even stand to be awake for days after. His body was burnt, inside and out, all of his hair fell out. He lost all of his body fat, he couldn't move well. He couldn't do anything other than sleep and vomit.
    It hurt him to move, it hurt him to breathe.

    It was unrelenting. It never stopped. Even when the chemo ws over, the after affects were still there.

    At least CFS relents a little bit every now and again.

    I know some CFS pts have it much worse than I do, and I know the fatigue is horrible and debilitating, b/c I have it.
    I would never go so far as to compare CFS to what my father went through.
  4. Catseye

    Catseye Member

    I went through chemo after I already had cfs. I was feeling much better and so my doc thought I was ready for it. Told me I may experience "flu-like" symptoms, but that it would wipe out the hep c and I would be back to normal. Well, to everyone's dismay, it didn't work like that.

    As far as I can tell, the worst I was on the chemo was about the same as the worst I was from just cfs, even long after the chemo was over, like 2 years later. I couldn't move and it felt like I could hardly breathe; my body was producing energy anaerobically, which is a feeling like your body is fighting to stay alive and it is so horrible, you consider ending it. When this persists for months, you learn to live with agony. I could probably keep up with a Navy Seal in a cigarette burning contest after the cfs and chemo torture willies. I would feel better simply by remembering the REAL torture.

    The only difference between the worst of one vs. the worst of the other was that on the chemo, most of my hair fell out and my scalp was covered with raw, open sores and was flaking off like voodoo dandruff from hell. I can just see my chemo self trying to do a Head and Shoulders commercial: "Gee, I just HATE it when this happens!"

    I think that the degree of nutrient depletion we are experiencing is responsible for how far into the depths of hell we venture, either from cfs, chemo OR cancer.

    On a lighter note, I haven't experienced the dreaded torture willies for quite awhile and I'm sure I won't ever again. I won't let my mitochondria get in that bad shape EVER again.


    karen




  5. Slayadragon

    Slayadragon New Member

    Is it _really_ necessary to play this game of "who's worse off?" in order to get our disease taken seriously?

    Or for us to take it seriously ourselves? Until we believe we're _really_ sick, no one else is going to either.

  6. bunnyfluff

    bunnyfluff Member

    I watched 3 of my immediate family members die from cancer. On my worst day I am not that bad off. And I don't think you are either.

  7. springrose22

    springrose22 New Member

    We need to take OURSELVES seriously, and not wait for someone else's opinion to define us and our illnesses whatever they may be. Marie
  8. SleepyMama

    SleepyMama New Member

    Neither of them can fly, do we really have to figure out who's worse at it?
    My cousin recently found out that the baby she is carrying will have two club feet. She came to me for advice and support because I have experience with our Children's Hospital, a lot of the ped's around here and between what I know and the internet, we were able to figure out what to expect.
    After thanking me for my support she said "I'm sorry, I know it's not nearly as bad as what you're going through with Tarok." I said, "That doesn't matter, it's a really big, hard thing to deal with, your baby is going to have to go through multiple castings and possibly a surgery, that's a big deal, and you need support. There's no point in comparing."
    When that baby cries out in pain, he doesn't know that it could be worse, he's just thinking "This really sucks!"

    [This Message was Edited on 02/23/2007]
  9. Susan07

    Susan07 New Member

    It seems you may have hit a little nerve regarding comparing illnesses. I dug out a chart my neurologist gave me called Comparison of Pain Scores for Various Conditions.

    If you google "pain scores" there are over a million references.

    If you google "merck zoster pain score" you can actually see the chart created by Katz and Melzack.

    Determining pain levels is very important for doctors to be able to treat us accordingly. There are pictures of faces at the hospital so people can communicate how much pain they are having.

    I would imagine there are comparison charts for exhaustion also that your doctor got his information from.

    Take care
  10. TallMOM

    TallMOM New Member

    Maryann, I think your Dr. was kind to understand how sick you were. We all re-act to CFIDS different, and all chemo patients will be different.
    Since my doctor has not had cancer or CFIDS I would thank him for his understanding that CFIDS is real,and we are really sick.
  11. JLH

    JLH New Member

    I have fms and cfs, plus a lot more, but I do not want to compare my fatigue to that of my brother's chemo treatments for colon cancer! I respect him too much to do that.

    He has undergone many weeks of chemo and radiation BEFORE he had his (hopefully) life-saving surgery two weeks ago. Now, he has to take another 16 weeks of very intense chemo (8 weeks on, 8 weeks off). He's had 3 days of it and landed back in the ER today, so dehydrated and weak/fatigued from vomiting for 1-1/2 days.

    This disease, and its effects, can in no way be compared with cancer.

    I agree that we should quit trying to compare. Shame on that doctor, too!

    Respectfully,
    Janet
  12. jipsieyes

    jipsieyes New Member

    ...in her doc's suggestion (that FM/CFS exhaustion is worse than what chemo patients have)...
    Hear me out, and understand I DO know that, in fact, the two/three conditions really can't be compared...

    That said... my Mother was dx'd quite suddenly with an especially vile pancreatic cancer, and her decline was relatively (and mercifully) quick, living only 9 months after diagnosis. CHemo was HELL on my poor Mother's gentle soul. Yes, her exhaustion was incredible, but the pain was the worst. She did have good days and extremely bad days. With everey day that passed, we knew we were that much closer to losing her, as the cancer spread unabated once it was decided chemo could do no good.


    Not one of us walked into Mom's room (at the hospital first, then nursing home, then hospice) and said, "It's nice out today. Why don't you get out and take a walk, it would do you good!" or "You're not going to get any better if you don't get up and work at getting better." or, "I know you're tired, Mom, but you have to stop thinking about it so much, or you'll make yourself worse."

    With cancer, there IS a timeline of sorts. I'm not trivializing it -- dying is torture on the living as well as the patient. But we didn't TRY to make Mom "better". We comforted her, held her, loved her, had little "parties" every day in her room to celebrate her, make her at least smile for a few minutes before she drifted off to pain-riddled sleep again... And we all stepped out of the room to cry, and die a little bit ourselves, every time we left for the evening not knowing if tonight would be the last we had her with us...


    Through all of this, Mom knew she was dying, and after the frustration, anger, tears and sadness, she became calmer, at peace, knowing she would soon be rescued from it all, taken into God's loving care and arms and blissfully saved from the pain and weariness.
    That knowledge gave her strength, gave us strength. We ADMIRED her ability to stray with us as long as she did (she didn't want the extra morphine that morning -- she told my sister she was afraid she wouldn;t wake up this time -- even as her final moments had her struggling to breathe, to stay with us, we told her we loved her, that if she had to go, to go, and know we loved her.

    When a loved one has a chronic pain/auto-immune disease such as CFS/FM/etc., there is no 'timeline', as the conditions are not "terminal" (barring a companion illness/disease that does progressively hasten towards death). There is no cure, no adequate treatment, very little understanding and even less patience, on the part of others, including doctors, with these conditions.

    This places an enormous strain on the family and friends, as they want to be attentive and understanding, but, after awhile, they can no longer keep "vigil". Worse, KNOWING you, their loved one, is suffering all the time, with no hope or recovery in sight, makes it difficult to know what to say, how to help. And that is when the comments, above, become the norm. If you're not going to die, dangit, then get better!


    On the patient's side of things, imagine knowing you are going to die, and that each day, you worsen, become more tired, in more pain... I hope you, as my Mother did, are able to find that peace, that acceptance, that soon, you will be free, and in a much better place. It didn't make my Mom's fatigue or pain any less -- but her faith and acceptance did make her better able to think past the nausea, horrible pain, and fear. Soon, it would be over...


    On the FM/CFS patient's side of things... being in pain, and extremely fatigued, everyday... for weeks, months, years. And there may be another fifty to sixty years ahead of you... with none of the implicit understanding, support and nurturing a terminally ill/dying person would receive without quarter, without question... You can FEEL your family/friends' confusion, frustration, sometimes scorn!

    You can SENSE the pity, the disgust and anger --
    Now, I think this COULD make an FM/CFS patient suffer pretty horribly, on TOP of the physical agony, you'll spend the rest of your non-dying life feeling like a burden.
    Just THINKING about this is making my fatigue ratchet up to "bone-crushing", and depression looms, bleak and hopoeless...

    Thanks for listening as I shared my outlook on MaryAnn's post. I don't think she meant to supplant the suffering of a terminally ill patient with the kind of suffering we go through. But I would venture to agree with this: that being able to put things in persepctive, and realize that there may be a shred of truth to the idea that someone suffering indefinitely just *might* be the kind of suffering that could be called "worse" than that of a cancer/chemo patient who DOES have an "ETD" of sorts...


    My sister sometimes tells me that it's as if FM HAS "killed" me, her best friend, but because the grieving doesn't gradually become easier to take (as I'm "still here", even though the real me, the happy and true me, has been gone a long time) it's harder for her to live with it (and me).

    Hope this all made sense. I'm exhausted, this was much longer than my normal posts, but was important to me...

    [This Message was Edited on 02/25/2007]
  13. pam_d

    pam_d New Member

    I don't have CFS, only FM, but I've had some of the strongest chemo out there. I never experienced the fatigue with it that I had even with a case of mono years ago. Does that mean chemo's not debilitating and exhausting? Of course not; we're all so different, cancers and types of chemo are different, too.

    And there are varying degrees of CFS, too, and everyone's degree of fatigue will vary.

    Can't compare the two, and why cause strong feelings about it? Let's just appreciate that everyone here is going through a LOT in his or her life and illness, and have compassion and understanding for everyone.

    Hugs,
    Pam
  14. minkanyrose

    minkanyrose New Member

    My father passed on with liver cancer 3 years ago and I felt so frustrated that I couldn't help him feel better yet we all knew there was an end as you said by either recovery or passing and being pain free.

    My uncle (dad's brother) had throat cancer at the same time and he was cured of it, so is out of the pain exhaustion cycle.

    I saw them both go through excruciating pain and exhaustion but it was comforting knowing they wouldn't have to live with it for years on end that there is a cure and people take the time to help them recover. I think that is the comparison that people refer to not that cancer is not less than fm just that with cancer there is an end in sight.

    With these DD's there is no end insight. love to all and understanding. any illness is devestating in it's severity and no disrespect to people who have loved ones with cancer my prayers go out to all of you.
  15. jipsieyes

    jipsieyes New Member

    ...AHA! If I could only have said it as CONCISELY as you! LOL


    My point exactly... :)
    Only nowhere near as lengthy as my post... :)
  16. Slayadragon

    Slayadragon New Member

    Thank you for a lovely post.
  17. Lichu3

    Lichu3 New Member

    On a personal level, I agree with the posters here that it's not particularly helpful to compare severity of illnesses BUT on a national level, with a much-maligned disease without clear "objective" measures of disability, CFS won't get attention or research funding from those without the illness without some degree of comparison to other known diseases. It doesn't matter how much I or you believe our own symptoms and experiences; we have to convince those in power.

    Yes, pain/ fatigue is subjective but there are multiple well-established scales (Karnofsky, ECOG, SF-36, etc.) which have been used on multiple diseases to quantify level of disability. The CDC website states that CFS can be as severe as people with lupus, MS, etc. as a reason why they think CFS is a major public health problems. If CFS wasn't as severe, they would not be paying attention to it.
  18. obrnlc

    obrnlc New Member

    jypsi, minka & lichu3 have have come up with excellent responses to those who doubt this doctors words, no one wants to trivialize the suffering that one undergoing chemo goes through, that is not the point, but they have put into words what most of us feel, even though it often doesn't come out right on the post.<P> First of all, no one said that the total SUFFERING is the same, only the chemo exhaustion, and as one who has not gone though chemo, but also witnessed the effects on family members. I love jypsies ability to put into words the TIMELINE and the UNDERSTANDING of others (ex.--if you don't think about it today you'll feel better) <P> I also agree with many others that while there is no NEED to compare the 2 sets of symptoms, but as lichu3 says, every bit of understanding and comparison helps the medical field, researchers, disability companies, etc. have some understanding of the severity of our symptoms, and to know that we aren't "just lazy", etc. (who hasn't heard--"everyone gets tired not just you")<P> It is only by comparisons (such as the new CDC statement) that anyone can truly believe what we go through everyday as far as muscle fatigue and weakness, and why it is so disabling. I, and probably many others, have heard while preparing for ssdi hearings to "tone it down" symptom wise, because no judge would believe the wide range of symptoms (that we TRULY have) and then our credibility would be doubted.<P> so i hope we can all understand (and i personally THANK Maryann for sharing that statement) that this post means no disrespect whatsoever to the many suffering the effects of terminal illness and its treatment, it is just a method for comparison, and i also thank the poster (sorry--name?)that has experienced both for giving us a side by side comp. Also, many of the horrendous symptoms of cancer are caused by the illness itself and not to be compared, but i think maryann was just offering another viewpoint that i for one appreciate. thanks for posting!