long time PWC's ...please comment

Discussion in 'Fibromyalgia Main Forum' started by deadtired, Feb 16, 2011.

  1. deadtired

    deadtired Member

    Has the CFS/FMS changed through the years? I am into my 22 year. I just realized that I now can exercise, on a Wii video of boxing, or dancing,
    without any apparant pay-back with post-exertional fatigue! I had
    resigned myself over the years to avoiding exercise because of past relapses. I am wondering if type of exercise is important. In past, swimming and walking (uses whole body)would give me relapses. The boxing tapes is alot of staying pretty
    stationary and using the arms more. I've also noticed that riding a bicycle is ok, also, again, I am pretty much sitting stationary, but mainly
    using legs. Also, noticed that I can feel like crap and have no desire
    to go walking or get out of house, but can do these tapes of boxing
    or dance and end up feeling so much better. If anything it releases
    so much stress, frustration and anger building up in me.

    I don't think I could have done these exercises the first
    ten years into CFS, however. But I was also raising 5 kids, so that
    alone was enough physical work. I noticed at ten year mark, less
    fibromyalgia, with an apparant less active immune system as I started
    catching more colds and flus where for 10 years didn't catch hardly anything.

    Just thought I would say "never say never" with CFS. Certain exercises
    might work , if others don't. And even if you feel like crap, some
    exercises will make you feel better in spite of it. When I am doing
    the boxing I feel like I'm actually boxing the DD and I feel
    better mentally because of it.

  2. IanH

    IanH Active Member

    I have had ME/CFS/FMS for over 15 years and had a similar process to what you describe. I too can now exercise much more than I could 5 years ago. It is limited but still of great benefit. At times I relapse a bit and the exercise must be reduced but then I pick it up again as soon as I can. I still get super exhaustion from climbing a set of stairs. The fatigue responses in this are peculiar.

    You seem to be doing well, may it persist. Well done.
  3. deadtired

    deadtired Member

    Thanks, I hope it persists,too... I actually got to the point where the fact is
    I am pretty much miserable all the time anymore, and feeling so down on top of it, so I was thinking, why not
    try exericising on top of it, it can't get much worse! And at least I will have one
    positive thing in the day , knowing I got a little exericise in spite of it all.
    I am hoping that somehow getting stronger physically might help my immune system.
    Even if its just a little 2 minute segment of exercise I feel like I accomplished alot.
    Oh, and yes, the stairs feel like climbing a mountain to me!
    Thanks for your reply..
  4. spacee

    spacee Member

    Guess you are not recovered but getting better, it sounds like!

    I do ok...better than 25 years ago but it comes from the supplements I take
    to fight the pathogens. (EBV, Mycos) without those I would be worse.


    Ok, I will just put what it is NTFactor and Hepasunate...gotta start slow (small
    amounts and build up gradually). Hepasunate take small amount 5 days in row.
    The every other day and only three days a week or could cause hepatitis.
    Nicholson and Cheney recommendations.
  5. TigerLilea

    TigerLilea Active Member

    I have had CFS for 20 years as of this month and mine has become worse over the years. I can do a lot less today than I could a few years ago. I don't know if perimenopause is a factor at all as I am also going through that right now. Progesterone helps somewhat, however, the last few months things have been changing again.
  6. Jayna

    Jayna New Member

    It sounds like a very fun part of your day.

    I am a 19-year PwC and have a lot of orthostatic intolerance so can't really do any upright exercise although I try to stretch every day, do some lying-down strenght exercise (2 reps of a crunch is about my limit). I'm noticing this winter that colder weather stops me pretty much 'cold', though. No exercise, no mental work, is possible.

    TigerLilea, you bet perimenopause is a factor. I've been there for the past few years and am hopefully nearly through. Some days I wake up fine but I can never tell when a hot flare will burn off all my energy and leave me a noodle for the rest of the day. Other days I have woken up so often to adjust my temperature/coverings/fans due to nighttime flares that I feel lilke I haven't slept at all. Result: noodle all day. It's a bit better now that I've added flax meal to my fruit smoothies and a teeny bit of cold-pressed flax oil to my evening snack, but still it's impossible to predict my energy enough to risk burning off a bunch on physical activity... because if i do that and then get a hormone swing, a minor dip could easily become a major crash that takes weeks to get over.
  7. LittleBluestem

    LittleBluestem New Member

    It will be 25 years of ME/CFS for me next month. No FM. After the first 4 months in which I “pretty much” recovered from the “killer flu”, it has been a slow, steady decline. Being on the downhill side of menopause hasn’t helped. It both takes less exertion to cause post-exertional exhaustion and more time to recover from it than it ever has. Fortunately, I am still able to climb stairs, since I live in a second-floor apartment. I am learning to pace myself, so probably get more done in the course of a week by avoiding crashes, for the most part. It gets frustrating as the envelope narrows.

    My primary exercises beyond the activities of daily life are walking and rebounding. Done at the appropriate level, they do not cause me to relapse. I have not tried “part body” exercise, other than stretches. Bicycle riding bothered my knees before I had ME. I don’t have a television, which I think is necessary to use a Wii, and, truthfully, boxing does not appeal to me. If I could think of an appropriate part body exercise, I might give it a try.
  8. Mikie

    Mikie Moderator

    Are an emigna. Some of us get better, some get worse, and some of us go up and down. I also have a Wii and find it good for working out when I feel up to it. I think a lot of it has to do with being in the comfort of our own homes, working out in our own good time at our own pace.

    I was recovering for years until about a year ago when my fatigue started to get worse. I had to retire from my part-time job. I felt better but then was hit by a flare of what appeared to be Sjogren's. Now, those symptoms are about gone. I was hit by a painful flare yesterday which has left me feeling lousy. I'm one of the "up and down" types but, overall, I guess I'm better, certainly better than I've been during the worst days of my illnesses.

    BTW, I can look back into childhood to see omens of things to come but my CFIDS was triggered in 1990 by a mycoplasma infection. It left me crippled for months but I recovered; however, I was never the same after that. Then, about 11 years ago, I had an auto accident which triggered the FMS full blown. I was bedridden and on Morphine most of the time. I've clawed my way back to a semi-normal life.

    Glad you feel up to exercising. I'm hoping to be using my Wii again soon. I can always do the exercises/stretches I learned in PT, even when I'm in bed.

    Love, Mikie
  9. deadtired

    deadtired Member

    Spacee, no, no, I am not anywhere near recovery and pretty much have learned
    nothing has seemed to work for me over the years. I started the dance tapes out
    of desperation and those feelings of doom and seeing some pictures of me that
    made me realize how little I was expecting out of myself. I'm feeling sick as a dog
    right now with another virus coming on...(don't know if I'm actually "catching" new bugs,
    or they are "inside" me...can't get any of this stuff straight after 22 years still don't understand
    what this illness is doing to me.
    I have not tried any medications in all these years, only supplements and a vegetarian diet.
    Do you really think the NTFactor and Hepasunate are helping.....where do you get those?
  10. deadtired

    deadtired Member

    When you mentioned the perimenopause it got me thinking....
    All through my 50's (I'm 58) I was dealing alot of PMS, then the perimenopause phase and finally
    over that last year for good.....didn't get any of those
    hot flashes, don't know how I escaped that...but anyways, my lack of exertion during that time
    definitly have had something to do with all those excess hormones. Maybe now that
    that stage is over my body is able to tackle things I couldn't or even think about doing even a year ago. Thank you for your input.
  11. deadtired

    deadtired Member

    I agree, the perimenopause thing is exhausting and consuming...and never really "felt"
    like I wanted to exert myself in any type of exercise (besides slow bike riding) until now, and
    coincidentally menopause came last year for me.

    Standing upright for long periods get to me; these tapes are only a a minute and half
    long each. So I stop after one if I feel like its enough. My 15 yr. old daughter got another
    exercise tape, all of it was lying down, and I found those really relaxing.
    Guess the days I feel angry or stressed I'll do the boxing, haha, and the days I feel happier the
    dancing, and the days I can't stand up I'll do the lying down stuff...
  12. deadtired

    deadtired Member

    My CFS also started with a killer flu..in 1989, was 37...just recently started realized
    not getting any younger and went through change last year. That Wii tape is actually
    a dance tape, I am much more the ballerina, dancer type and tried the dances (salsa, etc.)
    which I found to be really stressful because I couldn't get the steps right or I wasn't
    fast enough, whatever. I would have never guessed I would like the boxing!! Its got
    two women and a man on it leading the way (not real people, all fake digital..maybe that helps
    in a way). Has some nice music in the background. Anyways, I didn't feel like I was getting
    it wrong if you know what I mean and having some recent stressful situations with my
    aging parents and no outlet, the boxing was a pleasant surprise for me. Incidentally, I found
    out my 87 yr. old Dad just told me some stories about him taking boxing lessons his Dad made
    him learn so he could handle the bullies in bothering him and his brother. Had no idea
    my Dad was such a fighter...haha..hes just a little guy...maybe I inherited a little of the fight in him!
  13. deadtired

    deadtired Member

    Geez, I am the same here....my arms are always what hurts me the most....my legs after all
    get the most work out naturally with walking around etc.and they aren't even hurting after
    these mild exercises, but my arms really are... My arms are hurting alot right now after
    those tapes, so I am going to ease up on the exercises until my arms stop aching...
    I think imy arms are just not being used enough on a daily basis. Taking care of
    children and all that goes with that is pretty much a thing in the past now, and that
    alone I think kept the strength in my arms over the years. I have pretty much avoided anything (like
    vaccuming!) that stressed my arms too much but I guess I am approaching this
    in an opposite way now, hoping that if I push a little with them I will benefit in long run.
  14. deadtired

    deadtired Member

    One aspect I like about the Wii is there are fake people doing the exercise with you. Somehow
    feel like I am part of a group haha, even if they aren't real. Would never have the
    energy of health to join a real live exercise group with real people, haha. Yes, it is nice
    to do in your own home and no one to around to make you feel like your not keeping up, or
    too sick to do.

    It is hard to figure out for me if I'm better or worse. In some ways definitely better, but in
    other ways no. Where for years I was just terribly fatigued really and never feeling up
    to doing anything outside of the home...nothing social, no job, (havent held job since I was 30,
    got CFS at 37) just priority was taking care of kids. Then gradually started getting
    more stomach issues, IBS, gallbladdder issues, less resistance to flu's, always "feel" like I'm coming
    down with something...but seldom amounts to more than bad headache and aches all over. I
    am hoping a little exercise might make me stronger, if not against the illness itself,
    but mentally. I get so caged in house, the tapes helps with that isolation I think.
  15. deadtired

    deadtired Member

    I am sorry about the accident and all the struggles with getting yourself healthier.
    I have serious situation my gallbladder.

    It needs to come out but not with out a life threatening operation. My gallbladder is
    totally concealed by my liver and can't be removed easily; operation would be like having
    surgeon doing it without seeing, he might "cut" something hes not supposed to, that
    is what I've been told. Only other option is cutting out most of my liver to get to the gallblader and and I don't think I could survive that...
    Luckily I don't have any symptoms bothering me unless a stone which has happens to get stuck in a bile duct. which has happened a couple times now.. Keeping my fingers crossed
    it won't happen anytime soon again. Just don't want to take the chances with the gallbladder
  16. Mikie

    Mikie Moderator

    I am so sorry about the gb. I had mine out a few years ago and remember that, as my gb was shutting down, I felt as though I were coming down with something too. I had a gallstone come out through an abcess in my lower chest but at the time, I didn't know what it was. Duh! I'm very lucky it didn't travel somewhere critical in my body. Perhaps as they get new surgical and scanning techniques, they will be able to remove your gb without so much risk. I hope so.

    BTW, for anyone who has had a bad infection which triggered CFIDS, chances are that the pathogen has gone stealth and chronic. This means that it operates beneath the immune system's radar. At that point, it will not show up in blood tests and would require PCR DNA tests to detect. DNA tests are not that reliable, especially if the blood isn't drawn and the test done within 24 hrs.

    It took 2 1/2 yrs. on Doxycycline for me to get my chronic mycoplasma bacteria under control. Mycoplasmas are like Lyme; they can change form into cysts and go latent deep inside the body's tissues. If one gets run down, they can reactivate. I was also on an antiviral for 1 1/2 yrs. to deal with an unknown chronic virus, likely in the Herpes Family: EBV, CMV, HHV-6, etc. I do not believe that I would have gotten better without the ABX and AV.

    I also took transfer factors which I purchased here at PH. I don't know what is going on with transfer factors now. The company which manufactured them stopped and it really put a crimp in their availability. I have not felt the need for them in years so have not kept up. There used to be a transfer factor board here.

    Finally, I had to take Heparin injections because chronic infections can cause excess fibrin in the blood. Again, there are tests for this but they are expensive and many insurance companies will not pay for them. Heparin is no longer available for individual use. Lovenox is but is very, very expensive. I've found that Nattokinase, which is sold here, does an even better job of ridding the body of getting rid of fibrin, as evidenced by my now normal Sed Rates.

    As you can see, it took years, an understanding and cooperative doc, meds and supps, and tons of online research to get to where I was no longer bedridden most of the time. What was cutting-edge treatment back then is now SOP at the FMS/CFIDS clinics. Each of us is different and we have to tailor our treatments to our needs. I think we need to start with the worst symptom and deal with it first. Then, go on to the next. When we treat one symptom, other symptoms may get better.

    I also have FMS and was lucky that the Guai Protocol worked for me, allowing me to concentrate on healing my CFIDS. Until this latest flare of "whatever it is" made me too fatigued to work, I felt I was getting on top of things. I do not feel that my conditions are winning but it's an ongoing fight for me to be anywhere near "normal." The flare is letting up so I will never know what caused it unless it returns. My best guess is that it is Sjogren's and has gone into remission for now.

    My feeling is that we should never give up hope and never give up fighting; however, since there appears to be no cure on the horizon, we have to take our treatment plans into our own hands. It is a lot of work and trial and error. For me, it has been worth the fight. It didn't happen overnight. Each of these things I did were done one at a time over years. If I hadn't done them, I would likely still be bedridden. Even though I can no longer work, I am better than I was before my doc and I started out on the treatment path.

    Good luck to you. I keep us all in my prayers because we have so much on our plates.

    Love, Mikie
  17. munch1958

    munch1958 Member

    I remember being in second grade in 1965 and NOT sleeping the entire night. I suspect that is when my issues with not producing growth hormone began. I've also got a low thyroid too but can't pinpoint when that began.

    Things got really bad around 1969 after probably getting another tick bite when on a trip to the Ozarks with my aunt and uncle. I came home from that trip sick with the flu (in August when there is NO FLU season!) and got some nasty hand rash a few months later which was diagnosed as eczema. But the rash never went away with cortisone creams. It only cleared up with Abx that I got later one for chronic ear infections.

    I remember having fatigue & insomnia problems back when I was a kid and used to sit down on the curb and refuse to walk any further because I was just "too tired".

    Then the PMS & endometriosis years were next. Followed by a ton of surgeries for the endo.
    Followed by multiple hormone problems.

    Then came the knee problems when "something ate my cartilage" after a car accident. Then the knee replacement.

    Then came the spine fractures and back surgery. It really sucks because I no longer have fatigue or all over muscle pain. Mentally, I'm sharper than ever.

    My entire life has been 2 steps forward followed by 3 steps backwards.
  18. Mikie

    Mikie Moderator

    Sometimes, we don't necessarily get better or worse. We just get something else. In my case, the Sjogren's-like condition is making me horribly fatigued, the worst it's been in 11 years but my FMS pain is better.

    I alwasy considered myself very healthy but, knowing what I know now, I realize there were signs that all was not well.

    Love, Mikie