How long does your PEM last?

[eafw]

How we can continue to do activities and not feel any different until 24-48hrs later is just too bizarre to understand.

There's probably a delayed immune response of some sort, it's seen in people with autoimmune conditions like rheumatoid arthritis or MS when they have a "flare", so not really suprised we can get a time lag effect too.

 

[Mij]

@eafw are you saying that people with RA and MS experience PEM the same as we do?

 

[eafw]

are you saying that people with RA and MS experience PEM the same as we do?

It's known that flares can be triggered by infection and various other physical stressors. As would be expected when the immune system is out of whack in all these conditions.

Quite how much "sameness" there is I don't know, there would be some differences and some similarities, and I don't know whether a comparison study has been done. The delayed effect is quite common though.

 

[MeSci]

Interesting theory. Do you experience any type of OI type symptoms with PEM? I feel that this may be my most distressing symptoms. In the past I had to do short errands with PEM and I would have to be careful not to run into people because I was so unstable with my balance.

I don't seem to get much or any OI, and never have. I don't think my heart rate or BP change much when I change position. I just get occasional pounding when I lie down, and recently have sometimes been a bit lightheaded when standing or walking. I also get a bit dizzy or disorientated if I look up or behind me. But nothing really bothersome. I do get non-dizzy poor balance sometimes, which is sometimes due to my legs being weak and wobbly, and sometimes due to blocked ears.

 

[Mij]

It's known that flares can be triggered by infection and various other physical stressors. As would be expected when the immune system is out of whack in all these conditions.

Quite how much "sameness" there is I don't know, there would be some differences and some similarities, and I don't know whether a comparison study has been done. The delayed effect is quite common though.

Flares can be triggered by infection and stressors, I feel this happens to me. The difference though is that people with MS benefit from exercise and can increase it with time.

 

[Mij]

I don't seem to get much or any OI, and never have. I don't think my heart rate or BP change much when I change position. I just get occasional pounding when I lie down, and recently have sometimes been a bit lightheaded when standing or walking. I also get a bit dizzy or disorientated if I look up or behind me. But nothing really bothersome. I do get non-dizzy poor balance sometimes, which is sometimes due to my legs being weak and wobbly, and sometimes due to blocked ears.

I'm not any expert on OI and for all I know I don't have it, but your symptoms sound like mine. I can't look up or backwards and when I do I feel very UNWELL and it takes some time to get back to feeling ok, some days are worse than others. Also raising my arms makes me feel awful, worse in the mornings.

@SOC has explained in various threads that there are many different types of OI and it's a matter of finding a doctor who is expert in this area.

 

[MeSci]

I'm not any expert on OI and for all I know I don't have it, but your symptoms sound like mine. I can't look up or backwards and when I do I feel very UNWELL and it takes some time to get back to feeling ok, some days are worse than others. Also raising my arms makes me feel awful, worse in the mornings.

@SOC has explained in various threads that there are many different types of OI and it's a matter of finding a doctor who is expert in this area.

Yours sounds much worse than anything I get. As I say, for me it's mild and not troublesome. I feel OK again pretty-well straight away if I look back down or forward after looking up or behind me. It's never been bad enough for me to need help, apart maybe from the very early days when I got vertigo, which I very occasionally get now, but mildly.

 

[GracieJ]

Bravo! Very good discipline! Intellectually we understand this, we just have to ignore that voice . . . you know that one that tells us we can keep going . . .

Thanks for being my cheerleader.

Amazing, isn't it, these malingering lazy types who stubbornly refuse to give up on some form of physical movement. And then we have to give it up.

I had problems looking up through bifocals at a computer screen at work. I was scared I would pass out reading my client schedule. I now have multi focal contact lenses, which help. It is a different world, not able to tip your head back without some blacking out.

 

[SOC]

I don't seem to get much or any OI, and never have. I don't think my heart rate or BP change much when I change position.

Yeah, I used to say that, too. I was wrong. I do have OI, just not the commonest form. Treatment has given me a significant quality of life improvement. @Sushi kept telling me I needed to look into it, but I didn't understand. I wish I had dealt with my OI years earlier; I would have had a better life.

Not all OI/dysautonomia involves dizziness or fainting, nor is it necessary to have immediate BP or HR changes. For some of us it takes the 30 minute test to see the abnormalities. I was astounded how hard it was to stand still for 30 minutes -- a clear sign of OI.

Cort did a very good article on OI which is still available at PR. I highly recommend it to people who think they don't have OI. It can't hurt to read it.

 

[MeSci]

Yeah, I used to say that, too. I was wrong. I do have OI, just not the commonest form. Treatment has given me a significant quality of life improvement. @Sushi kept telling me I needed to look into it, but I didn't understand. I wish I had dealt with my OI years earlier; I would have had a better life.

Not all OI/dysautonomia involves dizziness or fainting, nor is it necessary to have immediate BP or HR changes. For some of us it takes the 30 minute test to see the abnormalities. I was astounded how hard it was to stand still for 30 minutes -- a clear sign of OI.

Cort did a very good article on OI which is still available at PR. I highly recommend it to people who think they don't have OI. It can't hurt to read it.

Just had a quick look, but I would need some convincing to spend time researching something that doesn't appear to cause me problems - assuming that I have it. I don't know what it would fix, or whether it would fix any problems I have.

I prefer to focus on dealing with problems I do have! I think my main problem standing still for 30 mins would be sheer boredom and worrying about wasting time!

My activity level is about 6, and has changed little in the 20 years since I became ill. The only thing that caused a deterioration was an ACE inhibitor, which I stopped once I realised.

 

[GracieJ]

Mine was missed for years. Every time I saw a doctor, there would be the usual wait, my name called, seated in the exam room for vitals, then the nurses would always say something like, "Have you been running? What's your hurry? We need to wait a few minutes, this isn't a normal reading." Right in front of our eyes for years. Nobody caught it. High heart rate from just standing up in the waiting room. My heart rate zooms up to 120 from 84 just rolling over in bed. Low blood pressure readings. Countless doctors commented on the fact that I do not faint just on standing up, because in their experience I should have been. I see black a lot for a few seconds.

My stubbornness about exercise came naturally - I learned on my own that I could keep doing things much, much longer if I moved slowly. It was just last year I read about monitoring heart rate and stopping at crucial points. It was 2012, on these forums also, that I learned about OI and POTS. Still learning, really.

I think what saved me is that in the 80s in the middle of the no-salt craze, a doctor told me to indulge liberally in pretzels and potato chips - I needed salt. Although I did not heed the detail of that advice, I let myself salt to taste all the time, consuming what seemed to be unusual amounts. It probably is one of the biggest pieces that allowed me to survive at a higher functional level.

 

[SOC]

Just had a quick look, but I would need some convincing to spend time researching something that doesn't appear to cause me problems - assuming that I have it. I don't know what it would fix, or whether it would fix any problems I have.

I prefer to focus on dealing with problems I do have! I think my main problem standing still for 30 mins would be sheer boredom and worrying about wasting time!

My activity level is about 6, and has changed little in the 20 years since I became ill. The only thing that caused a deterioration was an ACE inhibitor, which I stopped once I realised.

Entirely up to you. I was just trying to point out that I was once in the same place you are in regards to symptoms and belief, and I was wrong. I struggled much longer than I needed to because I didn't follow up on something relatively simple because I was SO sure I didn't have OI when I didn't have the obvious symptoms. Your situation could be completely different.

 

[MeSci]

Mine was missed for years. Every time I saw a doctor, there would be the usual wait, my name called, seated in the exam room for vitals, then the nurses would always say something like, "Have you been running? What's your hurry? We need to wait a few minutes, this isn't a normal reading." Right in front of our eyes for years. Nobody caught it. High heart rate from just standing up in the waiting room. My heart rate zooms up to 120 from 84 just rolling over in bed. Low blood pressure readings. Countless doctors commented on the fact that I do not faint just on standing up, because in their experience I should have been. I see black a lot for a few seconds.

My stubbornness about exercise came naturally - I learned on my own that I could keep doing things much, much longer if I moved slowly. It was just last year I read about monitoring heart rate and stopping at crucial points. It was 2012, on these forums also, that I learned about OI and POTS. Still learning, really.

I think what saved me is that in the 80s in the middle of the no-salt craze, a doctor told me to indulge liberally in pretzels and potato chips - I needed salt. Although I did not heed the detail of that advice, I let myself salt to taste all the time, consuming what seemed to be unusual amounts. It probably is one of the biggest pieces that allowed me to survive at a higher functional level.

My resting heart rate is fine, although it was commonly in the 70s or 80s when I was on the ACE inhibitor and before. It's now usually in the 60s, and goes up to about 100 when I exert - I try to stop when I get to the upper 90s but don't tend to wear my heart rate monitor during activity as it's a wrist one and gets in the way. My beta blocker nebivolol reduces heart rate, and mine sometimes dips below 60.

I increased salt intake after I was diagnosed with severe hyponatraemia. No doctor twigged that it was due to the ACE inhibitor, and they all refused to believe that I was also dehydrated - except for one in hospital who prepared me for an IV saline drip. He was overruled and the cannula left in place for days until I pointed out that it had started itching - it was now rather a mess.

Yet - ACE inhibitors work by - inhibiting ACE. That increases the excretion of sodium and water!

I have always craved salt. Now I have plenty again.

There is a poll on salt here.

 

[Mel9]

I

We are indeed different. I'm not able to work full-time - unless it is extremely flexible - hence my need to set my own hours (self-employment) and work from home. Even the tiny amount of accounts I have to do takes weeks, as my brain keeps packing up.

But I can walk up a long, steep hill into town at least once a week (stopping several times on the way), and do gardening, including cutting down shrubs and even a small tree. I can do a bit of DIY. I can even walk up and down a long cliff path on a good day, although I am pretty wiped out afterwards. After walking up the hill I can go on a bus ride, then sometimes manage a 2-3-hour walk with a heavy tripod on my back before coming home.

On a bad day I can't walk much at all, but am very rarely bedbound.

I wouldn't want to dream about using a step machine. I would much rather dream about going for long walks or cycle rides in the countryside!

i am lucky enough to have flexible working hours
A 90min rest at lunch time means I can work my 7 hours per day.

 

[Mij]

@GracieJ I was also a non salt person for many years and around 14yrs ago something clicked, the day after I treated myself to pizza I felt so much better. It happened every time and then I finally made the high sodium connection.

I salt everything now, including fruit, love chunky sea salt crystals on my pears and apples.

 

[GracieJ]

@Mij Isn't it great to lose the guilt on this stuff? AND feel better?

 

[Mij]

@Mij Isn't it great to lose the guilt on this stuff? AND feel better?

Yes and apparently coffee and dark chocolate are good for us too so stock up!

 

[SOC]

PEM is still definitely a part of my life. There seems to be a paradox happening, where I go slow and easy to pace activity - in my case, working - get through a day or two, drag through the rest of the week, then sleep for two days. There is no way to separate the pieces right now. I gauge things by whether or not I am recovering enough in the evenings to do the next shift, and if I feel recovered enough to start another week.

A lot of the time, I do not feel caught up at all. It is a scary feeling. It also happens more if there are other things going on, like the allergies that keep coming up. Since I miss almost no work days, the deficit especially feels scary. When I do get a day, it is never enough to fill in the needed energy. I would need months now.

That sounds exactly how I feel nowadays when I have what is for me a mild PEM episode. I can push through a couple of days, and drag through the rest of the week if I sleep all the rest of the time -- evenings, weekends. The problem is that if I keep doing that, I never recover from the PEM; I'm always dragging through the day not doing my job as well as I like, and sleeping the rest of my life away.

So now I take the week off, or maybe cut my hours in half if I'm not really bad, and mostly stay in bed. That way I get past the PEM in 10 days or so. I've found I do best if I try to sleep as much as I possibly can. Daughter and I wondered (half joking, half serious) whether the sleep was actually helping the PEM or whether it was just allowing me to fast-forward through the worst misery of the PEM episode.

 

[oceiv]

Like others, it depends. My PEM often starts during activity/exertion. In the past, I could sometimes stop activity before PEM started. These days, most minimal daily living activities cause PEM. Certain activities trigger PEM instantly. Others are tolerable for a bit.

My PEM can last minutes to hours to days to months. The months-long PEM often turns into a permanent illness setbacks. Do others have this wide a variance in their PEM? This has always been the case for me, even when my condition was moderate. I also have a very long list of worsening symptoms during PEM (from pain, immune symptoms, heightened sensory sensitivity, fluctuating chills....). I do have OI and this influences my specific brand of PEM.

People may be answering different questions in this thread, though. For me, minimal daily activities cause PEM. For others, they may be talking about what happens after they walk for fifteen minutes. Others may be relaying what happens after they go out to dinner with friends. The variation of activities and severity influence which question people are answering. I haven't read through the whole thread. Don't know if this has already been discussed.

 

[MeSci]

I

i am lucky enough to have flexible working hours
A 90min rest at lunch time means I can work my 7 hours per day.

That's good. I also need to work from home though due to chemical sensitivity (artificial perfumes). I was already have problems with this when still working in an office, and tried to get some adjustments made to deal with it but failed.