Discussion in 'General ME/CFS News' started by SaveMe, Feb 17, 2011.
It depends on what your %%% is... If you mean your :mask::innocent1: and you're able to sit on it all day, you might even consider yourself lucky.
Seriously, i think probably nobody knows and it's probably a very individual question and might vary over time.
I don't think the CFS can get worse from inactivity but it can certainly get worse from pushing yourself.
On the other hand inactivity can lead to deconditioning which is not necessarily what you want to achieve, as it won't help with overall health but probably can't be avoided to some degree.
I think it's a fine line and you have to try and listen to your body and learn from your experiences and find what's best. If you can be active without feeling bad, i guess it's good to do so much.
But i'm no doctor, so please use your own mind to try to find out.
I wonder-- are you asking because you feel worse when you "sit around" and feel better when you don't?
OR-- have you been listening to friends, family, doctors, magazine articles that say that people with ME/Cfs just need to exercise/ get off the couch ... ?
The OLD medical "wisdom" (if one was lucky enough to even find a doctor who believed this was a real illness) was that exercise was the key to "getting better". (And I guess for a FEW patients, that may have been helpful.) But now we know that exercise and overdoing activity makes most of us WORSE.
And the truth is, most of us don't have much choice. If I have to lie down after showering, and get "winded" brushing my hair-- I'm not getting on a treadmill ...
I agree with eric_s -- you have to listen to your own body.
Maybe if you could say a bit more about your concern we could be of more specific help.
Hang in there. Hope is on the horizon ...
ALSO-- I'm always BLAMING myself-- and trying to figure out "what I'm doing wrong" ... Because if I'm not getting better, or if I'm getting worse, there must be some reason; there must be something I ate/ didn't eat, something I did or didn't do, some supplement I should take/stop taking, thoughts I shouldn't think, feelings I shouldn't have, some mantra I should say ...
(I think maybe it's easier for me to blame myself than to accept that there's nothing I can do .... ) And when I perceive that someone else is "blaming" me for my illness-- secretly or openly-- a part of me (sadly) questions myself. I'm actively working on NOT doing that anymore. It doesn't help me.
I keep learning, exploring, asking questions, trying new things ... and I'm learning to be gentle with myself and know that IT'S NOT MY FAULT THAT I'M SICK ...
As so many others have written, it all depends on the individual. The amount and type of activity that is helpful for an ME/CFS patient depends on so many factors -- how long you have been sick, what your symptoms are, whether you have a support system if you crash (e.g., you need to be more careful if you don't have someone else who can buy groceries when you're too sick to go out), and so on.
When I first got sick 20+ years ago I was much worse. I had to rest a lot more than I do now. I also had to learn a lot of lessons about what activities were helpful and which ones to avoid. For me, not pushing myself was one of the hardest lessons to learn.
For example, for the first 29 years of my life, when I was healthy, there was pretty much no payback from pushing myself physically other than maybe some sore muscles the next day. In fact, pushing myself in the gym (lifting heavier weights each time, running a bit farther each time, etc.) was a good thing. Pushing myself, assuming that I also got good nutrition and rest along with it, was how I trained my body to get stronger and faster. I loved hiking and going to the gym. I also enjoyed my job and looked forward to going to work every day.
Then, after I got sick, I suddenly had trouble just doing normal activities of life. As someone else mentioned in this thread I had to lie down after taking a shower and before getting dressed. Then I couldn't even stand long enough to shower and had to use a shower seat. I had to sit down to do pretty much everything because standing was so difficult - nausea, dizziness, etc. My onset was not overnight but after a few weeks I was taking sick days every other day and very quickly had to go on full-time medical leave and was mostly housebound (thankfully my husband was able to provide financial/emotional support and take care of household tasks).
To make a long story short, years later I discovered that a large part of my problem was a type of Orthostatic Intolerance, Neurally Mediated Hypotension (NMH). Symptoms of NMH are made worse by standing, heat, and several other factors. See http://www.cfids.org/webinar/cfsinfo2010.pdf for lots of details.
Those first few years that I was sick I did not know about my NMH so I did not know what things to avoid that would make my symptoms worse. Once I was diagnosed, and started treating it (water, salt, fludrocortisone, midodrine), and avoided triggers (heat, standing, walking on a full stomach, etc.) I got a little better. Now, a bit of walking, only on my good days and only when it is cool (or inside an air-conditioned building), interspersed with lots of resting, is what works for me. Also, lying flat during the day is not as good for me as resting in the recliner, legs elevated but head upright. And sitting in a chair, with my feet down, does not count as resting, because this position can aggravate NMH. Before I knew about this problem I used to think, I'm sitting completely still, not doing anything physical, so why do I feel so crappy (nausea, exhaustion, brain fog) after a few hours? Now I know that sitting still like that can aggravate symptoms of NMH.
Also, the other thing that seems to work for most ME/CFS patients is to rest enough so that you start to feel better *first* and then do some activity. Don't assume that the activity will make you feel better. Of course, it may depend on the patient's personality but pushing myself has never worked for me. I have to restrain myself from doing too much. I love to be active and I hate to rest--so much so that, even though I know better, at least every few weeks I end up doing a little too much and have at least a minor "crash." But after I "crash" resting always makes me feel better.
I hope this is helpful. It's so hard to give general advice when patients are all different. The most important thing is to listen to your body. The things that are helpful/harmful for me may be completely different for you. Best of luck to you!
thanks eric ,
i only ask because I am sitting in bed all day. the more i remain still, the more widespread body pain i have MAYBE FIBRO ?
I was in bed for almost the entire day. my muscles seem to ache more. my body is telling me to move/exercise, but i feel somewhat sick.
did you have a tilt table test? my head pounds like a heartbeat sound in my head when i stand up quickly from a supine (lying down) position. does this happen 2 u
Read up before you sign up for a tilt table test. In the hands of an excellent diagnostician they can give really helpful info. But mostly they just tell you what you already know and you can give yourself the poor man's version with a BP monitor at home. I say "read up" cause I have had one and felt like I was going to die. Took a week to recover. Also, it didn't lead to any meaningful treatment, just confirmed that my ANS was wacko! Also cost the earth.
stand up quickly? who's bedbound and can stand up quickly? standing up is a tad tricky when bedbound, hence the name.
yeah i head people can have complications from it. so thanks ill look into it. basically they keep rotating the table until you pass out right?
Each doc has his or her favorite torture method, but it is unusual to rotate the table till you pass out. The more sensible object is to get good info on the behavior of the ANS before you pass out!
Usually they do a whole bunch of tests to stress different aspects of the ANS all the while recording your BP, pulse and EKG. My doc had CFS so he did NOT want us to pass out but to call a halt to it if we were about to. He had passed out and thrown up enough himself to know it wasn't fun.
They strap you to a table, tilt up up and do different things, lay you flat and do more things and then tilt you back up for as long as you can stand it. Some docs inject something beforehand too. That is kinda the basic but there are a lot of variations.
It's hard for me to help you with that beacuse pain is something i don't have. When i have it it's so light, i wouldn't call it pain, apart from headache. That i have sometimes, but only when i overdo it.
Maybe you can try to move around your room or house a bit, if you tolerate that it's certainly a good thing.
Im young, which might explain why i have more "energy" than most people on here--I was very athletic too. But yes, I am still able to literally jump out of bed and stand on my feet. I can still swim laps and run and do everything I was able to do before sickness. However, my body and mind are not the same. I can put on a happy face for the world to see and many of my friends wouldnt know anything about me is different. Its the worst part of this illness. And yes, I have excellent health insurance to rule out everything else. Here are my symptoms that I have every day for the last year and a half >500 damn days like this is no way to live.
Do you have any of these symptoms ?
2. Widespread muscle pains
4. Brain fogs- (attn./concentration) can stare blankly for long periods of time, where did I park the car? (short term memory loss) A distinct shift in cognitive function during onset. Disorientation- lost in amusement park. Where am I? Metal fatigue. Sluggish thinking.
5. Excessive mucus in throat that I spit up
6. Sunlight sensitivity really hurts my eyes, tear up easily
7. Initial rapid, sudden weight loss during onset of virus
8. Loss of strength, (can’t make a strong fist)
9. P.E.M (bike ride incident, even during exercise) wiped out the following day
10. Dizziness (especially during exercise)
11. Un-refreshing sleep
12. Feeling that I am approaching death (episodes) horrible malaise
13. Pulsating/Pounding/Faint head upon standing Orthostatic Intolerance
14. Pain/Temp sensitivity (colder than usual, hot flashes, pat on the back incident)
15. Swollen lymph nodes in neck and groin area felt by doctor
16. Missed days of school, can’t get up from chair/bed—what happened to my internal energy supply?
17. Grinding/Snap, crackle, pop neck (stiff in mornings)
How many of these do you have? Thanks
Thanks for clarifying the issue.
I can't exercise, but if I stay in one place for too long (an hour or two) I get stiff and start hurting. Even in places that aren't stressed by what I'm doing. (When sitting, my back and neck will start to hurt, but in bed, I might get pain in my feet or something ... why? I don't know) But, yes, after time my body tells me to move-- but not necessarily exercise. I find that just getting up to go to the kitchen, being up for a short time, can prevent that stiffening up. Gentle stretching, as your body can tolerate, might ease some of that. But staying in one place, especially in one position, the body will protest.
Sometimes it takes some experimenting to find what helps the most (or hurts the least .... ) Best of luck to you.
I think you are assuming that there are not many patients who are "young" on this forum. Not true. There are many in their twenties, some younger. And many of those in their twenties cannot "jump out of bed," and certainly are not physically able to do a fraction of what they could do before becoming ill.
looks like i accidentally stopped short in my statement. i can do almost everything i did before from the perspective of the untrained eye. But only I (and you guys) know how devastating this illness is. It doesnt help explaining it to family, i just say you really have to have it in order to know how i feel. but thanks sushi--> I do feel somewhat fortunate because i dont have it as bad as others.
it is normal to feel stiffness or pain (even severe pain) if completely immobile - several torture devices rely on this fact.
probably best not to remain comletely immobile if it bothers you, from how you've described your status there is no need to.
thanks for the interesting fact. yesterday i was just so tired and didnt feel like moving about. today i feel alot better. this CFS is weird---> i seem to have good days and bad days, or better yet, good moments within the day to bad moments. a weak tired, bipolar body that cant make up its mind whether its healthy or sick .
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