PEM from long car trip

soxfan

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I don’t get PEM or crashing from physical exertion and never have since the beginning. I get the worse of my PEM from mental over exertion which can be just being on a computer too long or socializing.
I can say for certain that long car trips (more than 3hours) give me massive PEM for days. I don’t even do any of he driving so I am assuming it is from just watching the scenery go by? I am wondering if my brain is being super overstimulated.

Does anyone else get this from car rides?
 

Mary

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I don’t get PEM or crashing from physical exertion and never have since the beginning. I get the worse of my PEM from mental over exertion which can be just being on a computer too long or socializing.
I can say for certain that long car trips (more than 3hours) give me massive PEM for days. I don’t even do any of he driving so I am assuming it is from just watching the scenery go by? I am wondering if my brain is being super overstimulated.

Does anyone else get this from car rides?
Yes, without a doubt. I don't know the mechanism of why sitting in a car would do this, but it does. I also get PEM from both physical and mental exertion. Branched chain amino acids have cut my PEM recovery time in half since I started taking them almost 3 years ago.
 

justy

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I don’t get PEM or crashing from physical exertion and never have since the beginning. I get the worse of my PEM from mental over exertion which can be just being on a computer too long or socializing.
I can say for certain that long car trips (more than 3hours) give me massive PEM for days. I don’t even do any of he driving so I am assuming it is from just watching the scenery go by? I am wondering if my brain is being super overstimulated.

Does anyone else get this from car rides?
Yes, i do. I usually take a little valium which always helps. However going on a three day car trip this summer brought on a terrible mcas food reaction and has severely worsened my health - 4 months later i was just beginning to recover a little when i got hit with flu.

The mast cell people tell me the vibration can set off mast cells and make you ill.
 

Alvin2

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Oh yeah, i used to do road trips, when i was far less severe, took about a week to recover even if i did little to no driving.
 

Plum

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Yes, without a doubt. I don't know the mechanism of why sitting in a car would do this, but it does. I also get PEM from both physical and mental exertion. Branched chain amino acids have cut my PEM recovery time in half since I started taking them almost 3 years ago.
@Mary what brand of BCAA do you take? Dose? Thanks

@soxfan I get PEM from car rides. We usually have to stop and take a break so I don't get really bad. Quieter roads are better. Have regular snacks and breaks to lie down help. I rarely go anywhere anymore. I can only manage about 1 hour in the car now (as a passenger).
 

soxfan

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Yeah...taking road trips and getting hit with bad PEM has worsened over the years. I am thinking of trying an eye mask when on these trips as maybe my brain won’t get as overstimulated. We don’t do this very often but drove up to NE from NC to visit family. Honestly it wasn’t worth it with how awful I felt for days. Our driving is mainly highways...busy lots of traffic.

I usually take Klonopin when it has already started but maybe I will try it before the trip...thanks for everyone’s input and that I am not alone in this.

I do feel very lucky I don’t get PEM from physical activities....
 

Mary

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@Plum - this is what I take: https://www.amazon.com/Optimum-Nutr...=1-4&keywords=branched+chain+amino+acids&th=1
Amazon has the best price on this brand. I take 8 capsules a day in 2 divided doses on an empty stomach, 4 when I first get up and 4 late morning. This equals 2000 mg leucine and 1000 mg each isoleucine and valine. I've also taken the MRM brand which is good too but this is a better value.

@soxfan, you really might consider trying the BCAAs. My crashes used to last 3-4 days and then over the years slowly got whittled down to 2-3 days (I probably learned to manage activity better) but with the BCAAs they have been cut to 1 day, unless I seriously overdo it and then it will go into a second day.
 

Plum

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@Plum - this is what I take: https://www.amazon.com/Optimum-Nutrition-Capsules-1000mg-Count/dp/B000SOXALE/ref=sr_1_4_s_it?s=hpc&ie=UTF8&qid=1510601034&sr=1-4&keywords=branched+chain+amino+acids&th=1
Amazon has the best price on this brand. I take 8 capsules a day in 2 divided doses on an empty stomach, 4 when I first get up and 4 late morning. This equals 2000 mg leucine and 1000 mg each isoleucine and valine. I've also taken the MRM brand which is good too but this is a better value.
Thanks @Mary - do you happen to know why BCAA work and why eating more protein for example wouldn't help in the same way?
 

soxfan

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Problem is I don’t have a doctor whom I am seeing for this. Believe it or not I have a pcp from Duke Hospital yet I haven’t been able to find a doctor who even comes close to understanding my symptoms.

I tried an alternative and he was very unhelpful and I have tried acupuncture. My pcp is supposed to be looking for someone to give me guidance...

Not one doctor I have seen here (NC) understands any of my symptoms. They look at me like I am nuts even though I have been sick since 2004 and been through intense Lyme treatment.
I am not sure if my symptoms are due to an ongoing infection or just the result of Lyme.

When I try to explain that my body doesn’t feel physically tired...it is just my head/brain/eyes just throws them for a loop. I honestly feel like I could climb a mountain but the head fatigue is the disabling factor...anyone else?
 

Mary

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Thanks @Mary - do you happen to know why BCAA work and why eating more protein for example wouldn't help in the same way?
I've read that people with ME/CFS have specific amino acid abnormalities and deficiencies. Nutreval testing in 2010 showed that my leucine was low and tryptophan was high and if you look at this link, I cite studies showing something about the interrelationship between leucine, tryptophan and fatigue: http://forums.phoenixrising.me/index.php?threads/bcaas-reducing-pem.34719/#post-541362

I don't know why eating more protein would not have the same effect, but it doesn't for me. I eat a lot of protein You might want to check out some body builder websites and see what they say about BCAAs because they're a very popular supplement with body builders. So they do something that regular protein can't, but I cannot tell you why.
 

Mary

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Problem is I don’t have a doctor whom I am seeing for this. Believe it or not I have a pcp from Duke Hospital yet I haven’t been able to find a doctor who even comes close to understanding my symptoms.

I tried an alternative and he was very unhelpful and I have tried acupuncture. My pcp is supposed to be looking for
someone to give me guidance...

Not one doctor I have seen here (NC) understands any of my symptoms. They look at me like I am nuts even though I have been sick since 2004 and been through intense Lyme treatment.
I am not sure if my symptoms are due to an ongoing infection or just the result of Lyme.

When I try to explain that my body doesn’t feel physically tired...it is just my head/brain/eyes just throws them for a loop. I honestly feel like I could climb a mountain but the head fatigue is the disabling factor...anyone else?
If it makes you feel any better, many of us (including me) don't have doctors who know anything about ME/CFS. I think we have to educate ourselves as much as possible. No doctor told me to take the BCAAs - I stumbled across it by myself and experimented on myself.

Having said this, you might try creating a post asking for names of doctors in your area who know about ME/CFS. There may be someone who can help.
 

Mary

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@soxfan - you might also do a separate post about how your PEM is all in your head (literally! a little joke). Seriously, that's where your symptoms and I know you're not alone. I believe that user Hip has similar symptoms. I believe his PEM arises from social interactions and maybe mental exertion, I'm not sure, but you may have a lot in common. And Hip is extremely knowledgeable about so many things related to ME/CFS, it might be good to contact him or flag him in a post.
 

Scarecrow

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When I try to explain that my body doesn’t feel physically tired...it is just my head/brain/eyes just throws them for a loop. I honestly feel like I could climb a mountain but the head fatigue is the disabling factor...anyone else?
Well, I couldn't climb a mountain but I know what you mean. Is it possible that being too active physically is contributing to the head fatigue? I do get physical symptoms of PEM but, in general, long before that happens, my brain will already be shutting down.
 

soxfan

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@Scarecrow ...I honestly don’t think being too active physically is the cause of my “head” fatigue. It seems to have become worse over the years and I actually think being more physically active helps me.
There are days I get up thinking I am gonna be pretty good but within a few hours it hits. It makes me just feel like I need to lay down and close my eyes..

Even if I do that it is of no help but the fatigue is so overpowering I have no choice. I just lay in a dark room...

I have no problems with memory...thinking... cognitive etc...it is just plain old nasty tiredness/fatigue. Sometimes I have no idea why it starts so quickly...then the day for me is already over.

I do have other symptoms but ....not many. I have nerve pain in my calves and feet which some days is unbearable ..Burning...shooting... viselike....electrical current...and I break out in random rashes always in the same place on my back. They burn and are painful. Then the fatigue....which disables me and makes me feel horrendously awful.

@Mary Thanks for the suggestion about putting it in a different thread. I was actually just reading one that someone posted on mental fatigue/PEM which sounds like me. I also had Nutreval testing done. I will have to look at that report. It was done at least 7 years ago...
 

ryan31337

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I'd also throw in that if you have autonomic dysfunction and circulation issues it could be the act of sitting upright without moving for a good length of time that is contributing to the problem.

Not a very easy thing to mitigate though. POTSies talk about legs up on the dashboard being a big help, but this is a serious no-no unless you fancy kicking yourself in the face if you crash.

I suppose you could do the counter maneuver you often see Jen Brea doing, sitting crosslegged.
 
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I travel with pillow, blanket, earplugs, and blackout mask, when I crash I go to sleep and feel better when I wake up.
My family use earphones for whatever to keep the noise in car down. I am sesnsitive to noise, crashes me the worst.
Use compression stockings and abdomen compression while traveling, avoid 90 degree angle ( see Dr Row dysautonomia presentation).
Pre load on electrolyte drink and sip also during trip. the extra bathroom trips, use as opportunity to lay flat on the grass where ever you go ( if not on midodrine) or in the back seat of the car. If you Lay flat every so often will not be as bad.
 

justy

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I'd also throw in that if you have autonomic dysfunction and circulation issues it could be the act of sitting upright without moving for a good length of time that is contributing to the problem.

Not a very easy thing to mitigate though. POTSies talk about legs up on the dashboard being a big help, but this is a serious no-no unless you fancy kicking yourself in the face if you crash.

I suppose you could do the counter maneuver you often see Jen Brea doing, sitting crosslegged.
Due to severe Coccyx issues i have to travel laying down. I saw Jen doing it the way i do in the film. Basically i put the front passenger seat right back, strap the seat belt over and lay sideways with my knees bent and resting up.

We traveled all over Europe like this - sure it wouldnt be great in a car crash, but its that or never leave the house at all.
 

soxfan

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I have never been diagnosed with POTS....so I am not on medication but I do bring electrolyte drinks with me . I am going to bring earplugs and a eye mask next time. I do believe the radio plays a part in all this too...

We do stop to get out and walk around or take a bathroom break quite frequently.
Luckily we don’t take these long car trips often.

Thanks everyone for the great suggestions.