Anyone been told to 'checkout' of life to promote healing?

Discussion in 'Fibromyalgia Main Forum' started by connieaag, Nov 17, 2006.

  1. connieaag

    connieaag New Member

    I took my daughter Kathryn (13) to an O MD Doctor yesterday for acupuncture since she has been in so much pain and the Vicodin isn't doing much for it. She has been reluctant to try acupuncture, but is desperate to feel better and get back to school. We have done alternative treatments with chiro and massage on a regular basis, but htis was a new doctor we saw.

    Anyway, the doctor's first comments after reading the 9-page questionaire we filled out, was that 8th grade wasn't that important in the whole realm of things and that we need to take her out of school, go somewhere warm for a few months, alleviate all stress in her life, and let her heal. Her basis is that her mind is so wrapped up in the FM/CFS that her body can't heal itself. She feels she is on too much medication and we need to get her off of it at the same time so her body can take over.

    The most intriguing part is that after an extended summer break, lots of sun, no school pressure, etc. she feels great and is able to attend school fom August until mid-October (2 months) and be SOMEWHAT normal. So maybe there is some validity in suggestion. ???

    She did light therapy with an ultrasound on her abdomen to get the hormones flowing better. She said her body was too starved for nutrients that acupuncture would be useless because there wasn't enough 'energy' to move around inside.

    Finally, she basically attributed this all to growing. Kathryn is 13 and 5'10". My husband, son and I are tall, but don't have FM and never experienced what she is going through. Other kids are tall or grew rapidly. On the way home, Kathryn said "if it's growing pains, why do I hurt when the weather changes"?

    I think the docs whole thing was getting Kathryn off of Prozac because her friends son committed suicide while on it. She has been on five AD to get to one that worked, and I hate to see her go backwards with depression. The psychiatrist said Prozac is the only one "approved" for kids. She was on Cymbalta and that was a nightmere -- another post!

    So needless to say -- we both cried the whole way home! We are flexible about she and I going south -- we're in Indiana -- for a few months is doable, with support from my husband and son and sacrifice on their parts of not having me around, but we are willing to try that if we thought it would help.

    We plan to go over Christmas and again in March, but meanwhile she still has school to contend with. She thinks leaving her friends and pets would be more stressful than what she's going through now.

    Any comments or has anyone tried "checking out of life to heal"?

    BTW -- we left feeling like the doctor was a "quack" so I won't be offended by comments toward her I know it's more than growing pains, four traditional docs have made the FM/CFS dx. I just feel like I've been beaten over the head by someone questioning what we have/are doing to help. Although, some things do make sense about the healing since I know the rest is what she needs.

    [This Message was Edited on 11/18/2006]
  2. Slayadragon

    Slayadragon New Member

    I don't know about your daugher's illness, and so there's no way to give advice.

    However, the very few cases of CFS that I've heard about where people have gotten wholly and completely well have been with young people (under 20) who have taken off significant amounts of time to let their bodies heal.

    I personally think that if I had a kid with this disease and thought that there was even a tiny chance it might work, I would take him/her out of school and give it a try. Even a year is trivial if you look at the alternative of being sick for life, I think.

    On the other hand, those scattered cases may have been amongst a subcategory of CFS,, and if so I would want to look into whether my child was in that subcategory before pursuing.

    For example, that recent CDC article ("Says CFS Real,, Brutal") lists two types: "the flu that never went away" and "builds gradually and goes up and down." One of these may have a better prognosis for young people.

    To my recollection, in the intro of "From Fatigued to Fantastic," Dr. Teitelbaum talks about getting what seemed to be CFS while in school. I don't remember his onset, and am indeed not sure that what he has actually was CFS.

    The reason that I think this may have potential for your daughter is because you say that she actually felt _well_ at the beginning of the school year. If this is the case (e.g. that she doesn't just feel _better_) is may be that her body really is capable of healing at this point in her life.

    I've never seen an adult on this board who said s/he felt _well_ for an extended period of time (e.g. more than a couple weeks) after a long vacation, or even they have felt truly well _during_ a long vacation. That comment of yours is striking, therefore

    Anyway.....I don't know if it's a good idea or not, but it seems to me that the idea of looking into it may have merit. I hope that your daughter gets better.

    P.S. I think that in the stories I've heard, it's taken people more than a few months to get better. More like a year or more. I'm not sure that being somewhere warm is absolutely essential.....perhaps just resting at home for a longer period of time would be better, If the cold is painful for the fibro probably it's better to avoid it as much as possible, but the advantage of still being able to see friends (mental health is important) and the financial potential for a more extended rest might be worth it.

    Again, you should collect all the information you can. I don't think anyone (certainly not your own primary care physician) is going to have enough examples to give you an answer on this one

    [This Message was Edited on 11/18/2006]
  3. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I think there is a whole lot to that concept, but this doc is over the top about a serious disease that they aren't even really acknowledging.

  4. abcanada

    abcanada New Member

    I was basically told the same thing by my doc last week, as I'm in a great deal of pain on a regular basis. She said that I had to give myself permission to heal! She wants me to get a house cleaner, nanny and get family to take care of all my other stuff. It's very hard for me as I have 4 small children. In fact I asked her what planet she's on! I'm working on small things that will help me out, but as much as it would be great to go to some deserted caribean island for a few months and come back healed. I am looking into going on a spa weekend or something. Just a small retreat. Take Care, Laura
  5. yellowbo

    yellowbo New Member

    Yes, I think there is tons of validity to this concept. BUT, I would not take my child out of school. JMHO. The reasons are that Middle school IS VERY IMPORTANT to high school success, and I would be afraid that the stress of trying to catch up would be really difficult. The point is to avoid stress right?

    At the reccomendation of my accupuncurist, I am taking time off from life, BUT I am fitting it into my life. Let me explain. I am 38, I have a family and I work. Rather then work full time, I have put myself on part time, sure I am a partner in the company and it was easy to do. I still read everything I can about CFS BUT I look at it from a positive perspective as opposed to obsseing about it.

    I make sure to eat only organic foods, and when I do eat meat, I eat kosher only. The reason for this, is that the animal is killed very quickley and bled out, that way I do not get any of the adrenalen in my body from the animal.

    I was going to stay on my elavil until I saw my new D.O., but decided I had not been on it long enough to cause a bad reaction by stopping it, so now all I take is my prozac (which is for PMS) and nothing else from a western pharmacyical view point. I liver cleanse with a three day fruit fast, I take probiotics as well as large amounts of the B vitimins, calcium, magnesium, L-theanin and melatonin. Lots of C as well, and of course a good multi. I have also started using a stage 4 sleep inducing CD which is working well.

    Right now, my fatigue is lifting, I am feeling much better then I have in a very long time, I rest, I don't go out much, I have explained to all my friends and family why I am "taking a break from life" They understand. I go out to the back yard and sit with my dogs and get sunshine in the morning and relax before I go to work. I still have awful hip and wrist pain, but it's not a 10 anymore, more like an 8, whcih is better. The brain fog is lifting but I still do stupid things sometimes! LOL!

    MY point is that yes, you will need to make some drastic changes for her, BUT pulling her out of school is not one of them. Unless you can home school her for 8th grade.

    Good luck and I will keep you guys in my prayers!
  6. connieaag

    connieaag New Member

    A little more info . . . she got FM/CFS dx in January 2005. From all of the books I have read, and from a couple docs, younger people do have a better chance of recovery. In the back of my mind, I too think 'it wouldn't hurt to try'. But, in the front of my mind is 'will this put her a year behind in school, what about friends, all of the middle school issues. And do they REALLY matter?'

    But then again, she is different anyway in having to deal with something like this. I told her, I didn't want to see her go through 70+ more years of her life like this, if taking a break now could make a big improvement in her future.

    She currently goes to school 1/2 days and has an IEP in place to reduce her day more as needed. I am thinking about going down to 2 classes -- Math and English -- having her spend more 'scheduled' time in our sauna, continue the light therapy, things to mimick nicer weather, rest, relaxation, etc. She can still be near her friends (and cats). It probably would be easier to get away from it all though. Decisions, decisions. Ohhhhh... if life could be easy!
  7. Slayadragon

    Slayadragon New Member

    My brother came down with CFS when he was 15 and lived with me a while during that time. He was pushed to keep going to school and finally collapsed. He is now 36, living with my mother, and hasn't left the house more than a few times in years. I had no idea what CFS was at the time, but if anyone in our family had a kid with this problem, we'd look into it as much as we possibly could and pull him out of school for a year in a heartheat if we thought it had any chance at all of saving him. A year of lost life is _nothing_, compared to an entire life lost.

    And yes, it is legal to take your child out of school for a year or however if s/he has a serious illness and the school in interfering upon their ability to get well. CFS is a _real disease_. Even the CDC thinks so. People on this board couldn't possibly be diagreeing with this.

    And having a home tutor is precisely _not_ the point. The point is that, if the goal is to _recover_ (rather than to survive), the patient should be given every bit of his/her body resources to recover. Nothing stressing at _all_ should be done. Only things that promote strength in gentle ways (including spending small amounts of time with friennds, I would think) should be.

    Again, I would _never_ recommend this strategy for anyone over age 20 (maybe 22), because I've never heard of it working for anyone who isn't really young. And I don't know how to tell the chances of whether it might work in a particular case.

    All I know is what I would do, which is to do everything I thought had any chance of giving her a real life. Saying "You can't take a kid out of school, you just can't!" is not seeing the forest for the trees. And this is a pretty lousy forest to be in for the rest of your life, if there's any way to avoid it.

    Again, I don't know what's right for your daughter, and I have no idea what might work. But please don't make you decision based on the trivialities of whether she'll get a year behind in school. If she had some other disease, you wouldnn't be thinking of that. And (as the CDC said), CFS is just as serious as those others. Try to believe that. Those of us who have been there---and who have loved those who have been there---do.
  8. Slayadragon

    Slayadragon New Member

    I've only heard about very young people being totally cured from CFS through rest. I've never ever heard of anyone older than early 20's getting over it no matter _what_ they did.

    If I thought that rest had a chance of curing me, I certainly would get more of it. For good or for bad, it seems I got sick too late for that.

  9. justjanelle

    justjanelle New Member

    I deleted my post as it seems to have been misinterpreted.

    I certainly did not mean to imply (as some appear to have inferred) that FM/CFS was not a real illness, nor did I mean that you and your daughter should not do all in your power to help her recover. I have had FM myself for 12 years.

    I simply asked if it would be legal to follow your MDs advice to keep her out of school for a year, and offered homeschool/correspondence as alternatives if that might work better.

    Back to lurkdom.

    Best wishes,
  10. Juloo

    Juloo Member

    When I was about 6 or 7, my father had tuberculosis. He was shipped off to the state sanatorium, and later, to another state for surgery and recovery.

    I have a couple of the Patient Handbook copies that the sanatorium would give to residents and their families. Basically, apart from any medical treatment, the main other component was REST, REST, and more REST.

    I wonder whatever happened to that type of acknowledgement for long-term illness -- that removing stress from a patient's life would speed or encourage a healing process. One of the things that I've learned is that I need to pace myself. Big events or expenditures of mental, physical and/or emotional energy should best be anticipated and followed by a bunch of down time.

    How many medical conditions *mandate* down time like this any more?
  11. lrgatplay

    lrgatplay New Member

    Sounds like us. If the school cooperates we intend to not push the issue until after the holidays. And then see how my son is feeling. He just doesn't feel up to doing any work right now.

    Since he was never highly social to begin with, he doesn't seem to miss it, although we have family friends over occasionally. Going to school caused an anxiety attack, before we realized what was going on. Sensory overload I guess.

    Since the school system doesn't seem to be in any hurry to contact us about it. The doctor already wrote him up for homebound for the next 12 weeks. My son is hooked up with the charter school and can do work from home on the computer, and then go in for the tests. But like I said, we intend to not push him.

    He spends his days reading on the computer. His father takes him out to the movies when he feels up to it.

    Hope you find a solution that is comfortable for you and your daughter, and that she can recover.
  12. foxglove9922

    foxglove9922 New Member

    My daughter who is also CFS/FM does much better in the summer when she can utilize pacing techniques and does not have the biggest stressor a child probably faces "school".

    Duh, doc sounds like a quack. My daughter completed her senior year in high school with the aid of home bound tutors at her bedside.

    best wishes,

  13. Slayadragon

    Slayadragon New Member

    I had known that was the main focus of the sanitoriums but have never read any manuals. A awfully lot of people who were ready to die actually did get well at those places. I think there's something to be said for being made to rest even if you don't (mentally) want to.

    At one point early on, I did read about a "sanitorium" of sorts for CFS patients. It was a nice thought, actually. It's just unfortunate that total enforced rest does not end up curing adult CFS patients as it (at least sometimes) did TB patients.

    I wonder if young CFS patients would have a better chance of getting well if they had to follow those TB guidelines. I think they weren't allowed to do _anything_ in those bed rest for very long periods of time, hardly any even talking. No reading matter of any kind. No guests. People hated being in those places almost solely because they died of boredom, but a good many did get well.

    Of course, now if someone took that path, they'd be pronounced as out of their mind. Eventually the medical community is going to go back to officially endorsing it in some circumstances, since it actually did seem to have some substantial curative powers. It's just very sad that the pendulum has to swing so far in one direction before it goes back to the other.
  14. Slayadragon

    Slayadragon New Member

    The reason to consider a period of absolute total rest is because of the hope (however slim) that a young CFS patient might get wholly better and not have symptoms for the rest of his/her life.

    If all it does is reduce the symptoms, that's a different thing entirely.
  15. connieaag

    connieaag New Member

    School itself isn't stressful for Kathryn, it's missing 4 days one week, going a couple days, missing 3 more days ... always playing catch-up! It stresses me out tring to help her keep organized, although she does a good job with getting the assignments, it's just getting them all done,even if it is at her pace.

    I hate having to make her do HW during the times when she does have some energy! I think it has to be all or nothing if we decide to do something like this. I need to check it out with the school. She is a great student, so that has always helped, but she just needs to heal (if she can).

    thanks for the posts -- keep them coming :) Connie
  16. connieaag

    connieaag New Member

    Which doc are you referring to Chicago or Indy? We have a great group of doctors -- one especially who when I ran this by him last night, thought it was worth a try if the logistics didn't stress ME out!

    I don't think anyone but God knows the answer, and boy to I keep pushing Him for it :)
    [This Message was Edited on 11/18/2006]
  17. carebelle

    carebelle New Member

    I think your daughter is right she needs support from her friends and going away would break that. I also think we need to learn to deal with the stresses in our life not run away from them.

    I do believe in meditation .Is there a quiet place in your home that she could go to several times a day and just relax and maybe listen to a water fountain or soft music .A place that's clean and uncluttered? A place she can pray or read and no one will intereped her?

    Warm baths with epson salts a few times a week might help a little.Being kind to herself and learning to hear what her Mind ,Body and Spirit is in need of .Maybe the family if possible could invest in a hot tub for christmas .This is something I myself have found helps .I do not have one now but think I will get one in my future.

    I personally think Travel away from home is stressful in its self.

    I hope this helps you can find portable Hot tubs on HSN home shopping for around a Thousand Dollars .You would spend that in travel.This the WHOLE family could share.

    Good luck let us know what helps.
  18. garlinbarb

    garlinbarb New Member

    Can you at least home school her? I think I would try staying home and homeschooling before I took her away from her Dad and brother ...even the pets. Schools are so crazy these days it's enough to make anyone sick.

    Kids are all different and this is just my thoughts about it. I've raised a houseful, so I am speaking from experience.

    For myself, I decided to ignore my illness as much as possible and even went back to work. It's as a companion/homehelper for a few hours a week. It has been the best therapy I've had so far.I do take care of myself too.I have a husband and a 15 yr old still at home. She has a lot of problems too and I'm not sure what to do for her either. Mental illness runs in our family as well as several physical things too. She's at the age when bi-polar problems can kick in so I'm concerned about that.

    I guess I'm telling you this to let you know you are not alone, and NONE of us have all the answers! Maybe if we can share with eachother we might pick up an idea or two that might just help. Hang in there Mama, and don't forget to take care of you too!

    God bless you and yours, B
  19. connieaag

    connieaag New Member

    Thanks for the ideas. We have a pool, hot tub (outside), whirlpool tubs inside, infared sauna with light therapy. Done the epson salts, peroxide baths, chiro, Graston, massages, reduced school day, reduced assignments.

    I know this idea sounds drastic and crazy, but I just don't want to look back and feel like we haven't tried EVERYTHING we can as parents.

    I know you all know what I mean.

  20. elliespad

    elliespad Member

    I think the doctor is just saying "something", because she doesn't know legitimate testing/treatments to offer. I live about as stress free a life as anyone could, without actually ceasing to "be". Noone expects a thing from me. I do what I can, when I can, if I can. Children are grown, one collage age son still at home. Husband does 95% of housework, 100% yardwork, 50% cooking, 50% shopping. If I want to use what little strength I have showering and going to 5 garage sales, then come home and sit on my butt the rest of the day, NOONE cares.

    I also spend summers at the beach in Maryland each summer. This is 7-11 weeks, of nothing but sun, surf and sand. I live in our 37' travel trailer at a resort campground. Little housework, and even less activity than home.

    I certainly believe that MANY POSITIVE changes have to take place to bring about wellness, but it will entail more than her recommendations. Diet changes, sleep enhancement, immune enhancement, liver detoxification, supplements, meditation, support, prayer, massage, life style changes, lots of stuff.

    If good food, good friends, good rest and good living were going to get us well, I would have been well 16 years ago. That's how long we've been spending summers at the beach. Sorry to say, but she's giving you bad advice, in my opinion.
    [This Message was Edited on 11/18/2006]

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