PEM or something else....

[soxfan]

I really have no problems with physical exertion and can feel fine afterwards. I luckily am able to walk up to 4-5 miles daily and bike as well (not on the same day).
If I do anything that has to do with social interaction I am totally floored the next day. The example I have is that I went to an art festival the other day with my son and his wife. We walked around and looked at exhibits and had lunch.

I felt fine during the entire time and had a wonderful afternoon. When I walked in the door at home I totally crashed. I just went right to the couch and laid down for an hour before making dinner.

When I got into bed around nine I could feel my insides vibrating which always means I have overdone. I had the vibrations most of the night. Now today I feel very lethargic....drained...and no energy. I don't have fluish feelings at all. Just like half my life has drained out of my body.

Now if I went out and walked 4 or 5 miles I wouldn't have this reaction at all. In fact I have even run 5K's with no bad after effects.

So is this just a different form of PEM or does it have something to do with adrenal function? It seems to becoming worse as time goes on and I am becoming concerned that soon I will have to just say no to any invitations or just go ahead and know that I will suffer the following day....

I am not sure what this is as I know looking (shopping) and talking uses a lot of brain energy which seems to be what I am lacking...

 

[Valentijn]

@soxfan - I still think it sounds like orthostatic intolerance. People without ME can exercise merrily with OI, but might hit the wall (floor?) if standing still too long.

Shopping and art-viewing both involve moving relatively slowly, and a lot of standing still, which is about the worst possible thing for OI.

 

[minkeygirl]

I'm wondering if talking was a problem (talking wipes me out) and overstimulation from being around so much activity?

 

[soxfan]

I definitely think it is some sort of overstimulation. Maybe from looking at all the exhibits and also talking with my son and daughter in law. The strange thing too is that if I am home and just doing housework etc. I don't get this feeling. Even if I am just standing in the kitchen baking or doing light chores I never feel like this the following day.
I have been tested for OI and been told I just don't have the correct symptoms.

I also get this even when traveling in the car and I am sitting. I think it is just looking out the window and watching everything...usually on really long drives like 8 or more hours.

Socializing wipes me out as well...even if it isn't stressful. Its like we can't even enjoy any kind of interaction without paying a huge price....

I am not really sure why I crash so quickly either. It isn't the next day but immediately just like when I was working.

Night time is the worse too because it feels like my heart is beating hard and I can feel every beat. Sleep is very disturbed all the time.

 

[peggy-sue]

All socialisation is stressful, you're just not aware of it.

But you were under social pressure to perform as if you were not a sick person while you were out, doing all that.

Listening to folk talk, if you want to understand what they are saying and respond appropriately, is very, very hard brain work.

I do get sore legs going round museums and art galleries all day long - but as it is my favourite occupation, I put up with it.

Just make sure there are plenty of breaks and times you sit down to admire something.

 

[daisybell]

Do you think it's possible that you have a type of cognitive PEM? I found when I was working that concentrating hard would bring on my symptoms pretty quickly... I also find being in a car very tiring and if I am feeling unwell before we set out, being driven is awful.
It's good that you can walk without bringing on PEM!

 

[xchocoholic]

I was thinking it was OI too but getting tired from mental activities
makes sense too. I feel good walking too as long as it's a quiet peaceful walk. No dog walking or chatting with anyone.

Have you tried taking anything for the vibrations ? Epsom salt bath maybe ?

Could it be adrenal fatigue ? Tc .. x

 

[SOC]

I have been tested for OI and been told I just don't have the correct symptoms.

I also get this even when traveling in the car and I am sitting. I think it is just looking out the window and watching everything...usually on really long drives like 8 or more hours.

I agree that your symptoms sound like OI of some type.

Sometimes doctors only acknowledge the most extreme forms of POTS, but don't consider the many other forms of OI, including ones that are common in ME/CFS. Unless you're completely confident that the doctor was knowledgeable about ME and OI, you might want to consider doing some research and finding a more knowledgeable doc before you accept that you don't have OI.

Sitting in a car, or an upright chair, for a long time will result in OI symptoms in some patients. I think I heard it has something to do with blood pooling in the legs and abdomen. The result is you don't get enough blood to the brain. Walking is better than standing or sitting because the muscle contractions from walking help pump the blood. This is also why some of us unconsciously fidget when we have to stand any length of time -- it keeps the blood moving to our brains and we feel better.

Have you seen this article about OI, written by Cort?

 

[Sushi]

@soxfan

I'd say this is PEM. Talking, using our eyes, sitting and standing all tax the autonomic nervous system much more than just walking.

The pounding heart when lying down at night is always a sign of PEM for me too. My autonomic doc told me that we use 30% more energy just being upright--whether sitting or standing (standing is worse though). Strolling and stopping to look and converse, really exacerbates OI for me.

Walking is different because, as @SOC mentioned, the calf muscles pump blood "back up."

Sushi

 

[soxfan]

Thanks for all these wonderful thoughts. Actually I am not confident I don't have some form of OI other than the fact that I did have the tilt test done and the doctor put me on Florinef a few years back which only made me gain a lot of water weight.

I am just really having such a horrible day. There are some days when I can go out and not even feel half this bad. There seems to be no reasoning for why it gets so bad. Usually I can recover overnight.

When I am standing I don't feel dizzy...fatigue etc. I feel much more tired if I sit down so I just try to keep as active as possible.

Thanks for the article...it just doesn't sound like me unless I am missing something. I feel perfectly fine standing etc. it is only after the activity that I crash and burn. I felt great all yesterday afternoon. I guess my brain just can't handle all that activity.

When I was working I would be on my feet for six hour shifts and once again only felt horrible when I would get home and try to relax...
Then my body would go into overdrive and never calm down....
This is so discouraging....

 

[peggy-sue]

Standing upright is not a passive activity.

You have loads of different muscles all pulling in different directions, and all of them trying to stay at a particular level of tension, in order to keep you upright.

Walking around uses much less energy, you are shifting between different muscle groups all the time, not wearing one set down,

and you have the added benefit of the muscular pump in your legs helping the blood get back up from your feet.


Folk often do not realised exactly how hard to body has to work in order to just maintain itself, how much energy the brain uses, what it takes to maintain body temperature etc.

In a non-sick, normal working person, 80% of the calories they eat go into keeping the body going.

All their activity only uses 20% of their calorie load.

 

[soxfan]

So I guess I am one of the fortunate ones that can exercise without repercussions. Although I must say that I USE to be a runner and can no longer run. I just don't have the stamina to keep up that kind of pace.

I do realize that the brain uses tons of energy and I know when I worked it was hell afterwards but since I loved my job and co-workers I was willing to put up with the torture when I got home....I always recovered by the next day.

What I really don't understand at all is why this happens sometimes and not other times. Just last week I went to a home show with my husband and we walked around and talked to vendors. It was actually a longer day that the art show and I had no issues the following day. I of course kind of crashed when I got home but I rested and got up and was okay.
There have been hundreds of times where I have been more mentally active and will recover by the next day so why this time was I so crashed....I guess there really will never be an answer as to why...

I will never understand this and so it makes it very difficult to know what is going to crash me and what isn't when I can do more some days and have no issues. I moved four months ago and even during all that stress and I mean STRESS I didn't have many days like I had yesterday. I was just a little more tired from the move....

I really have no doctor down here except a PCP and she seemed to understand my issues but she is definitely not knowledgeable in this illness. I saw Dr. K in Boston a couple times but he really wasn't much help....So I am kind of on my own again....

I have a pair of compression socks which I think I am going to try out again. Since it is already in the 80s and 90s down here I am not sure I will be able to wear them much this time of year...

Thanx peggy-sue for the post.....it was very useful and had a lot of information!

 

[maddietod]

I think daisybell makes a good point about cognitive PEM. I'm at my Mom's house for 10 days while she recovers from knee surgery. When I'm in the house with her all day, about as active as I am at home, I get exhausted because she talks constantly. When I go out for long meandering walks, I come back very refreshed. There is street noise, and I pop into stores, but I'm not socializing.

At the same time, I can't do these walks every day, or I get drained in a different way.

 

[peggy-sue]

The most exhausting thing there is is listening to somebody else talk.

It's sort-of next-to trying to run a 100 yards.
It fries your brain.

 

[Valentijn]

The most exhausting thing there is is listening to somebody else talk.

There's something worse for cognitive exhaustion - trying to speak in a foreign language which has rather different grammatical structure

 

[peggy-sue]

Profound apologies - yes, that must be loads worse.

I am a language dunce. We don't do languages well here in the uk, I never even considered how difficult it must be for you, Valentijn (and others for whom english isn't a first language)

My stupid comment shows how english-centric I must be at heart.

 

[soxfan]

My mother in law talks constantly too....she was here for a visit an entire week and my brain was totally fried by the time she left. That is so true about the non stop chatter as being exhausting. I actually went on a 5 mile walk today although I am still very tired at least I can move. Yesterday it was tiring just walking a few steps and I was extremely still mentally fatigued.

Although shopping is mentally exhausting for me as well. There is still no rhyme or reason as to why it sometimes happens so profoundly and other times I am okay....It makes it very hard whether or not to participate in an activity or pass on it for the fear you will suffer the following day....

I am able to walk everyday at least....

 

[maddietod]

I can't imagine "going shopping." All I ever buy in person is groceries, at small stores. And I go to the mall twice a year, well before Christmas.

 

[rosie26]

@madietodd Shopping with ME is a nightmare. I usually only manage to try one thing on and I am feeling ill with exhaustion/inflammation and need to get home. A couple of weeks ago I tried something on and they had a mirror that was swaying in the dressing room OMG I had to close my eyes while I was dressing.

Hi Soxfan x

 

[SickOfSickness]

Talking and listening to someone talk are very tiring. Driving is very tiring. Being out tires me for other reasons too.

I get tired from noises. On most stores or streets, there are many people talking in the background, and many annoying noises (beeping of cash registers, someone collapsing shopping carts, babies and kids screaming, etc).

I also get tired from all the motion happening around me.

If shopping, it is tiring to look through ingredient lists, compare prices, etc.

Being in a new place, or doing anything where you need to figure out a new thing, is more stressful.

I am more stressed from fluorescent lights, bright sunlight, bright headlights, or dim light.