New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
Discuss the article on the Forums. keeps suggesting but so hard

Discussion in 'Lifestyle Management' started by hurtingallthetimet, Jan 15, 2012.

  1. hurtingallthetimet

    hurtingallthetimet Senior Member

    doctor tells me to exercise if i can..but too much pain and fatigue....i use to exercise all the so depressed with weight gain...i did walk a little with one of my kids not a whole lot compared to a normal person but it was somethign i was happy about that but only reason i was able to was taking pain medications before hand...whcih i can barely remember the walk from the medications i suppose but only way i could do it...i hate that i cant do things with kids anymore...hate that i have have to take pain medications to do anything i try to hide the hurt and fatigue and medications from the kids and try to act normal but it takes so much energy but i dont want them to worry...i jsut feel so overwhelmed....i want to set good example for my kids but my health is getting worse and worse...every month it seems to get worse...i hate it...

    i hate these illness...sorry just needed to vent....
  2. PNR2008

    PNR2008 Senior Member

    OH USA
    I hate this illness too. Sometimes I can't go out unless I take pain meds but most of the time I need them the day or 2 later. Many times I'm in bed for three days writhing in pain because I did things that needed to get done. Yet mentally I feel better if I get out and move but payback is a *****. There are times I feel that I can't write another check, see another doctor, clean something in my house, make something to eat or take another shower but I've been muddling through for 24 yrs. Chronic illness just takes alot of courage, too much as far as I'm concerned but for now this seems to be it.
    CJB likes this.
  3. *GG*

    *GG* senior member

    Concord, NH
    Have you tried 1 of the Drs from the Co-cure list? Mine is on there and he has helped me a lot! I used to have pain big time, much better now.

  4. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    I just wanted to say that I am so sorry you are suffering so much. You are doing the very best you can coping living with chronic illness and being a Mom at the same time. That itself it so difficult. Doctors don't understand how exercise can be so very bad for a person with ME, a person with no energy in their cells to spare! You listen to your body and no one should make you feel guilty for not exercising, of all things....

    Hugs :)
    CJB and Ocean like this.
  5. Esther12

    Esther12 Senior Member

    I don't think that trying to push through things is a good idea with CFS. When you do feel able to do some exercise, then this will have some positive affects upon you and your body - but that doesn't mean it's always a good idea to always push yourself to exercise.

    I've found gentle pilates exercises to be something that I can slip in to my life reasonably well - and they can have more of a benefit than when I was focusing on little walks.

    Do you think that there's anything you could do to try to help with feeling depressed? Have you tried anything like meditation, or relaxation techniques?

    Good luck with everything. I hope things begin to improve a bit for you soon.
    CJB likes this.
  6. Gavman

    Gavman Senior Member

    Its tough. With low kidney energy, the liver also stagnates. So resting helps the kidneys recover but then digestion becomes an issue. Try and find any forms of movement that agree with you, qi gong, tai chi, light yoga/pilates/stretching. Anything that is exercise but doesnt exert.
    CJB likes this.
  7. snowathlete


    In short: your Doctor doesnt know what he is talking about!

    Unfortunately s/he thinks s/he does, and is probably just following the guidance handed out for ME/CFS which erroneously says that exercise makes it all better - but it doesnt. It makes it worse. I speak from personal experience, as since getting ME, the biggest and quickest downward trend i had was as a result of a single 5 minute cycle on a exercise bike on the lowest setting.

    Unfortunately, despite the evidence to the contrary, doctors still push this as a good idea.

    I am in a similar position to you, I have a young daugher and cant do much with her, and i hate that more than anything else. I also used to exercise alot and take care of myself, but now i cant do any exercise whatsoever. For the moment, that is reality for me. I have put on about three stone because of it, and thats while making some attempt to limit my its not good.....but its reality and trying to exercise your way out of this illness is not.

    The best example you can teach your kids is not to believe what a doctor tells you just because they are a doctor. At the end of the day they are human too, and if its a GP then they arent experts, and their advice is based on what other 'experts' tell them helps. So its probably not a malpractice thing (though in my opinion it is with some of the 'experts' because they should be able to see it doesnt work) its just an unfortunate reality of being a general practisioner, and thats why you have to do your own research on anything a doctor tells you, you cant just assume that they know best, because on things like this, they are misguided.

    Regarding the pain, those who have replied already have given good advice.
    Wishing you the best.
    CJB likes this.
  8. justy

    justy Donate Advocate Demonstrate

    Hi, from the posts of yours that i have read i feel that you are probably allready overdoing it. Doing more, whether it is exercise or daily activities is not going to help you at the moment.
    In order to give your body the best chance of healing it needs good, solid, long term rest. Like many others here i learnt the hard way that you cannot exercise until you are feeling much much much better.
    I do understand how you feel, i have 4 kids and it has been hard for them and me, that i am not the mum i want to be. My youngest doesnt remember me any other way and the others have seen me being sick on and off for years. A very good friend told me that you have to be selfish and always put yourself first when you have kids, so that you can then be well enough/happy enough etc to give them what they need, only by giving myself the attention i need can i be there for them.
    Im concerned that you are still overdoing things and not pacing well. It is not a cure, but it is possible through aggressive resting and supplements/naturopathic treatments/antivirals/B12 injections etc to gain a higher level of functioning. I certainly have, but it has taken a long time and i have had to be disciplined about rest and pacing, without that none of the other things i have done have helped.
    Now i can go out for trips with my family (i take a wheelchair in case) i can have days when i dont feel too ill and where i can be a relatively normal mum and wife. Before this i was house/couch bound all the time and was too ill to even speak to my kids for long or tolerate being near the noise etc.
    A large part of what got me throuhg the worse bit was meditation and acceptance and practicing gratitude.
    Sending you much love and good wishes for you and your family,
    CJB likes this.
  9. Nielk


    The doctor who is telling you to exercise doesn't know what he is talking about and should be reprimanded for doing harm to a patient!
  10. Valentijn

    Valentijn Senior Member

    If a doctor suggested that I exercise while knowing that I have ME/CFS, I'd be sorely tempted to suggest that that doctor kiss my oversized buttocks.

    I go to a clinic where they regularly treat patients with ME/CFS, and even though I'm doing damned near nothing currently, they're telling me very bluntly that I need to be doing less. And based on the evidence (that I get worse when doing as much as I think I should be doing, and I stay worse afterward), they're almost certainly right.

    Your doctor is an idiot and/or has no understanding of ME/CFS.
    justy likes this.
  11. Sushi

    Sushi Moderation Resource Albuquerque

    I had a doctor who himself had ME/CFS. (He only practiced a couple of days a week and at hours that he could manage). He used to tell patients to make a list of the things they had to do each day which were absolutely essential, and then cut it at least in half. Exercise was not to be on the list!

    He also helped us find our "warning signals" telling us "stop and rest--don't do another thing." It is sad to have a sick doctor but you will never find more understanding as he knew our symptoms from the inside--not from a medical journal.

    Having followed his advice and some very good therapies, I now can do moderate exercise once or twice a week, but his advice to learn your signals and "STOP"--was essential.

  12. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    Did he mean exercise or move. Careful movement is good, even if only two minutes. Just doing something to keep the muscles a little bit strong. Circulation is good and needed for nerves and the whole body. Full on exer. not good. If the doctor doesn't know the difference, you have to listen to yourself.
    I am so sorry, I hope you feel better....
  13. AndrewB

    AndrewB Senior Member

    England, UK
    I think everyone's covered all the important info already, rest, pace yourself, don't over do it, as if you end up bed bound your going to feel worse about yourself as a parent.
    Over doing it is what caused my second crash, i know many of us have different tolerance levels, but i think as a whole, we all try to do too much at times. Its only natural to want to be able to live a normal life.
    Your GP is sadly not sympathetic to your condition, i strongly recommend you find another Dr that does understand, they are out there, and in increasing numbers.
  14. Calathea

    Calathea Senior Member

    Hurt - change doctor, and if need be talk to a counsellor to work through how the bullying from your current doctor has made you feel. People with ME do tend to get bullied a lot by medical professionals, social services, and often friends and family, particularly with regard to mistaken ideas about exercise. Even when you know it's a bad idea, it can be hard not to internalise this bad advice to some degree, and at the very least you end up feeling got at and doubting your own judgement. You have an anxiety disorder, as I recall, which will make all of this even harder. Take a friend or advocate with you when you interview your next potential doctor, and ask them upfront how they usually deal with patients with ME.

    Sushi - could you start a post about these warning signs? I'd certainly find it very useful, because pacing is always so difficult even when you've been ill for years, and it can take a ridiculously long time to notice something as basic as getting cold when you're exhausted. If there is already a post on this topic, could you point me at it?
    WillowJ likes this.
  15. Sparrow

    Sparrow Senior Member

    Just wanted to add to what other have already said. ...Your doctor DOES NOT GET IT. Trust your gut. When you're able to do more, you'll know it. Until then, if your body is screaming for rest, give it as much rest as you possibly can.

    My doctor asked me to exercise more too. I sincerely believe they are almost always coming from a good place. They are misinformed, or are trying to prevent muscle atrophy, blood clots, or joint issues. Both of those do stink, and are serious risks of a sharply reduced activity level.

    But they do not understand the details of this illness, or the other factors that can make exercise do WAY more harm than good.

    If my experience is any indication (and everything I've read and trust agrees with it on this), working beyond your limits and doing things you have to "push" for will make you progressively more ill, or at the least will prevent progress. Working within what your body can handle comfortably, however limited that may be sometimes, will allow you to heal and to gradually be able to do much more.

    For many illnesses, the harder you are willing to work, the faster you will improve. And unfortunately many medical professionals are stuck in that mindset. It does not work with ME/CFS. Do not get sucked into letting their ignorance hurt you.
    WillowJ likes this.
  16. hurtingallthetimet

    hurtingallthetimet Senior Member

    thanks everyone

    thanks everyoen for the replies and advice i apprecaite it....the low dose morphine docotor presciped helps more than anything in a long time to take edge off pain..its still there but not as bad it sedates me and makes me loopy though..

    but at least if i take it then try to do anyting like walk a block with my child that makes me feel better....ive just tried so long to do what the doctors tell me that im so burnt out...i miss doing things with my family and i miss working to bring somethign to the table to buy things and do things with the kids meant alot to give anyting if my life was like it use to be before i got ill....

    thanks again it helps to know that im not alone and that others know and undesrstand these illness
  17. waiting

    waiting Senior Member

    This podcast of a presentation by the Pacific Fatigue Lab (at the University of Calgary in 2008) may be helpful to you in understanding more about ME and exercise.

    Scroll down to the 2nd podcast from the bottom. It's entitled "Therapeutic Exercise and Activity in CFS/ME". Click on the arrow in the middle, and if you don't already have Quicktime installed, you will be prompted to install it (free download).

See more popular forum discussions.

Share This Page