Good days/Bad Days

[livingwithcfids]

It's hard to say this because this illness is so miserable and life altering, but on your good days or your best of days, do you ever feel a slight sense of normalcy? I don't think a day has gone by where I was entirely symptom-free with this illness but I have had days where I have bouts of feeling energetic and good. How is it with you?


I am not bed-bound but I do have moments in the day where I need to STOP whatever i'm in the middle of doing (usually just sitting on a chair, typing on my laptop) and immediately lie down. The reason for lying down is because "my body" becomes too fatigued and achy to sit upright in a chair!! Like my body just collapses. It's too weak, so it must give in. Can you believe that? I don't think it's related to blood pressure or POTS, can someone help me with this one? Also, anyone know of the largest fibromyalgia forum?
Much gratitude

 

[Valentijn]

I am not bed-bound but I do have moments in the day where I need to STOP whatever i'm in the middle of doing (usually just sitting on a chair, typing on my laptop) and immediately lie down. The reason for lying down is because "my body" becomes too fatigued and achy to sit upright in a chair!! Like my body just collapses. It's too weak, so it must give in. Can you believe that? I don't think it's related to blood pressure or POTS, can someone help me with this one?

I think it sounds very much like neurally mediated hypotension, which is also a form of orthostatic intolerance (though different than POTS). On bad days, after sitting upright for a while, the body has too much difficulty to get enough blood to the brain, therefore there's not enough oxygen either. Laying down improves circulation to the brain, and I usually feel a lot better after half an hour or an hour.

If you have a blood pressure monitor, your blood pressure and/or pulse pressure are probably quite low when you feel the need to lie down. It might be low enough while you're still sitting upright that your BP monitor can't detect your pulse consistently enough to get a reading, and gives an error message instead.

 

[*GG*]

Also, anyone know of the largest fibromyalgia forum?
Much gratitude

Perhaps this website?:

http://www.fibro360.com/

not sure if this site has a forum, there is a login, so?: http://www.fmaware.org/

 

[livingwithcfids]

Lake Tahoe Lyndonville

What happened to all these people from the 80s outbreaks? I have yet to meet 1 person from those incidents. Have they all died and disappeared?

 

[Valentijn]

What happened to all these people from the 80s outbreaks? I have yet to meet 1 person from those incidents. Have they all died and disappeared?

That question is completely off topic from the original subject of your thread, but I've seen some on the videos of ME/CFS policy type meetings, offering patient commentary.

 

[taniaaust1]

It's hard to say this because this illness is so miserable and life altering, but on your good days or your best of days, do you ever feel a slight sense of normalcy? I don't think a day has gone by where I was entirely symptom-free with this illness but I have had days where I have bouts of feeling energetic and good. How is it with you?


I am not bed-bound but I do have moments in the day where I need to STOP whatever i'm in the middle of doing (usually just sitting on a chair, typing on my laptop) and immediately lie down. The reason for lying down is because "my body" becomes too fatigued and achy to sit upright in a chair!! Like my body just collapses. It's too weak, so it must give in. Can you believe that? I don't think it's related to blood pressure or POTS, can someone help me with this one? Also, anyone know of the largest fibromyalgia forum?
Much gratitude

I too can be symptom free and feeling energetic and good, that is only if Im not doing anything as Im slammed by stuff whenever I active, so that symptom free feeling okay thing is very deceptive.

Im with what Valentjn has said. I suggest to not assume you dont have any BP issues or POTS unless you've been tilt table tested or tested in another way to rule them out. These conditions can make you suddenly feel very flat and weak even if you have been just sitting upright.

 

[livingwithcfids]

wanted to bump

That question is completely off topic from the original subject of your thread, but I've seen some on the videos of ME/CFS policy type meetings, offering patient commentary.

Sorry, I wanted to bump the thread by adding additional topics to the discussion. Thanks for your responses, Valentijn and taniaaust1 and for not ridiculing me for not having cfs at all because of the short periods of relief I experience.