Driving and eating and heat make it worse...for real?

[Float]

Newbie here.
Starting to accept it might be ME. Especially as this is the only place (apart from YouTube ) where people talk like me!
Can anyone tell me if this is typical for ME...I suspect it is .

Used to get vertigo after long windy drives. As illness has progressed, now a short drive can make me fatigued.
Today I went in car for about an hour around town. Got out at 4 places. I think the standing up and out of car makes it worse.
Got very fatigued and woozy. Home and rest.

Food. ..before I eat I always feel better than after I eat. I am a comfort eater so thought it may just be my gluttony . I believe I may have to go to one evening meal, as eating slows me down so much.
Is this your experience too?

Heat is horrid and we are southern hemisphere summer. It's barely worth standing up in day.
Had to quit volunteer work after 2 sessions as they had me standing outside washing and inside sweeping kennels which I believe allows my blood pressure to drop and spend the next day crashed.

I know there are some other threads relating to.these topics. I guess Im just wanting to connect about it.

 

[jesse's mom]

I am very sensitive to heat! I feel best when I eat small meals and limit carbs, and especially sugar. Going and running errands is especially hard. I think it is the face to face conversations, the light and sound sensitivity and getting up and down.

Healing my gut has helped me the most!

The real marker for ME/CFS is PEM that is also called a crash or crashing. Look around on the threads, and the home page look at @hips roadmap on there and y0ou will find rich resources.

 

[maybe some day]

Focusing on the driving issue- I would have your car checked for any exhaust leaks. CO (carbon monoxide) could be entering the car. Try driving with the windows down a bit to get some fresh air and see if that helps. Also, depending on your car, look at the heater controls and your owners manual. There is a button for recircuation. If that is "on", you will only get recirculated air and not fresh air. Sometimes its on a timer, and it will switch to fresh air on its own. But it is something to check.

 

[Float]

Look around on the threads, and the home page look at @hips roadmap on there and y0ou will find rich resources.

Thank you for sharing your experiences. And I will look at what you have suggested ☺

have your car checked for any exhaust leaks.

Thanks I'll do that, though yesterday the windows were wide open for the cool breeze, and I shut them when I'm approaching lights and will be sitting next to someone else's exhaust. I'll check my airflow setting too. Thank you ☺

 

[Shoshana]

Hi @Float

What you described about car rides, I have that difficulty and it isn't from any particular car. It is from ANY car and ANY ride.
Though of course, any exhaust fumes do make me worse, for those other reasons, too. I avoid those if I possibly can!

I also have what you said, about the heat. Terrible decline, all around function. Suffering ensues. It seems out of proportion to the norm.
Oh, because it IS out of proportion to normal reactions to heat.

The food thing, I overlap with yours, but a bit different, perhaps. I have to eat frequent smaller meals. I crash if I don't eat soon enough, I crash when I do eat, and when I eat a little too much at one time.

Its good to see you chatting with others, and comparing notes.

 

[Float]

Thankyou @Shoshana it's so great to share common ground with people. I've previously been in POTS or thyroid forums which are very relevant (all invisible illnesses are a shared experience in some way I guess ).
I really need to learn that moderation with food. It's a lot better when I'm working and not home able to munch , comfort or lonely eat. But not working at moment so I'll just have to apply some discipline if I want to manage this.
I feel the same with cars as you. A 3 hour drive, even though motionless body, has me in bed the whole next day. A 20 minute drive to a friend leaves me dizzy, headachy, noise sensitive and unable to socialise which was the whole point !
Thanks heaps for sharing ☺

 

[Wishful]

My ME symptoms get worse after driving too. Sometimes it takes a few hours to develop. It's usually worse the following day. I consider it as PEM, but cerebrally-induced (driving uses more brain resources) rather than physically-induced, which for me has a consistent 24-hr delay.

Eating triggers worsening of my symptoms too. Specifically, carbs cause an abrupt increase in severity 20 minutes after starting the meal. I think this is due to insulin increasing tryptophan transport into the brain, and thus kynurenine production, since it is blocked by BCAAs. Try seeing if a low-carb, high protein meal has the same effect as a high-carb meal.

From what you wrote, I don't jump to the conclusion that it is ME. PEM seems to be the definitive symptom, though I suppose it's possible for someone with ME to not notice PEM. We're all different when it comes to ME.

If you don't have PEM, I suggest getting more testing for other possibilities, or at least paying close attention to your symptoms and what affects them. I strongly recommend keeping a food/activity/symptom journal. Memory is too fallible for this. Include external factors, such as temperature, smog, or whatever you think might be a factor for your symptoms.

 

[kangaSue]

@Float Autonomic Neuropathy could be the reason for all your symptoms, have you had an autonomic function work-up done, Tilt table test, Valsalva Maneuver test, Heart Rate Variability to Deep Breathing test and QSART sweat test. Basically, they are all checking your vagus nerve function.

 

[Float]

@Float Autonomic Neuropathy could be the reason for all your symptoms, have you had an autonomic function work-up done, Tilt table test, Valsalva Maneuver test, Heart Rate Variability to Deep Breathing test and QSART sweat test. Basically, they are all checking your vagus nerve function.

Hi @kangaSue thank you. Ive had a TTT but on that day it wasnt bad enough to 'fail? pass?'' it. I do have OI, not POTS, at least not all the time. The other tests are not available to me. I do monitor HRV but not sure what it should be (it does drop when standing). I know my nervous system has been shot to pieces so what you are saying make sense.
Where I live you have to jump through many hopps to get tests. I would pay for them myself but Im out of cash these days.
I will refer to your suggestions as and when I can broach it with the doc, whoch will depend on recovery/relapse status, and ticking all the 'best practice guidelines' first.
Thanks heaps.

 

[Float]

I consider it as PEM, but cerebrally-induced (driving uses more brain resources) rather than physically-induced

Eating....I think this is due to insulin increasing tryptophan transport into the brain, and thus kynurenine production, since it is blocked by BCAAs.

From what you wrote, I don't jump to the conclusion that it is ME. PEM seems to be the definitive symptom.

Thank you Wishful. Yup id agree its cognitive exertion. Wow the tryptophan etc pathway is complex but im seeing how smart people are here..ill catch up! I do get PEM....most definitely, and I consider cognition to cause PEM too. We (me and various docs) have been up the path of hypothyroid but for some reason getting my levels optimal does not 'fix' me. Im still experimenting with this. There is no reason for me to be hypothyroid in the first place, and the pattern I have (low TSH and t3 t4, no antibodies, no damage to thyroid) is more along the lines of HPA/HPT axis dysfunction eg stress caused, than the classical pattern. Still investigating.

Thanks heaps for your help. I am certainly monitoring more atm. Thanks you

 

[Wishful]

I tend to have slightly elevated TSH, but lack the typical hypothyroid symptoms, and my symptoms don't respond to supplementary T3 or T4...but do respond to supplementary T2 or iodine (part of which produces T2). My T3, T4, fT3&fT4 levels were abnormal in the different tests (up and down one time, then reversed the next time). I think the thyroid function is affected by ME, but ME is not caused by thyroid dysfunction. My theory for my elevated TSH is that ME causes elevated kynurenine production, including picolinic acid, which in turn causes elevated MIPS (macrophage inflammatory proteins) which in turn elevate TRH and thus TSH. I couldn't find any doctor to tell me whether elevated TSH is normal with neuroinflammation, but it does seem logical.

I have a thread somewhere about how T2 works for me. I need to take a single dose of it (or iodine) every 21 days. If I don't, my baseline symptoms increase significantly, and stay elevated until I do take the dose. The dose seems to reset something, possibly by boosting RNA transcription. No one else has reported the same response to T2 or iodine, but it works for me.

 

[Nightingale]

@Float Hello and welcome! Just wanted to quickly put forward an idea about your eating. I used to feel really really tired after eating as well. It turned out I had gluten intolerance. If you wanted, you could try just for a couple days avoiding gluten (so bread, pasta, biscuits, anything that contains thickeners like baked beans or canned soup), and see if it helps you.

It made a big difference for me, and I very rarely feel worse after eating now. Good luck!

 

[kangaSue]

Hi @kangaSue thank you. Ive had a TTT but on that day it wasnt bad enough to 'fail? pass?'' it. I do have OI, not POTS, at least not all the time. The other tests are not available to me. I do monitor HRV but not sure what it should be (it does drop when standing). I know my nervous system has been shot to pieces so what you are saying make sense.
Where I live you have to jump through many hopps to get tests. I would pay for them myself but Im out of cash these days.
I will refer to your suggestions as and when I can broach it with the doc, whoch will depend on recovery/relapse status, and ticking all the 'best practice guidelines' first.
Thanks heaps.

You're in Oz aren't you? A G.P. can refer you to the Neurology Dept in the public hospital system to do the autonomic function tests for free.

I see you mention your worst symptom is the OI and subsequent hypoperfusion of blood to brain resulting in fatigue. Did you see the recent ME/CFS research suggesting an issue with reduced red blood cell deformability to be causing microvascular blood flow problems.

This can potentially cause hypoperfusion issues with both the brain and the gut and eating can exacerbate the gut side of things, in chronic intestinal ischemia. Most doctors believe that gut ischemia only causes significant abdominal pain but you can just have some very mild discomfort after eating with this.

Microvascular gut ischemia causes little in the way of pathology to diagnose it from though. It's an issue that I have (but I don't have ME/CFS) and it was only from trialling a nitrate vasodilator med that it was identified after a CT Angiogram showed there was no stenosis in the mesentery (bowel) arteries.

Check out the latest thread on RBC deformability anyway;
https://forums.phoenixrising.me/ind...nded-rbc-deformability-paper-published.62374/

 

[Haley]

I'm another one who gets PEM from driving - for me it's definitely the cognitive exertion that causes it. Most people don't realise how much focus, concentration, problem solving and decision making is required for driving, let alone interpreting all of the visual input that's coming at you constantly.

I also do a lot better with a low carb and low starch diet as others have said, and can really notice the difference when I deviate from it (usually the next day). It took me a long time eliminating foods and slowly reintroducing to find out what my triggers were. It was a frustrating process but has made a big difference.

I used to live for the heat of summers here, but I really suffer from heat intolerance (and cold intolerance too in winter) since getting sick.

Sorry, no specific suggestions, but letting you know you're not alone

 

[Float]

@Float Hello and welcome! Just wanted to quickly put forward an idea about your eating. I used to feel really really tired after eating as well. It turned out I had gluten intolerance. If you wanted, you could try just for a couple days avoiding gluten (so bread, pasta, biscuits, anything that contains thickeners like baked beans or canned soup), and see if it helps you.

It made a big difference for me, and I very rarely feel worse after eating now. Good luck!

Thank you @Nightingale . I'm GF for years. I've come to the conclusion its emotional overeating. And habitual to eat past fullness. It's something I need to work on if I want to help myself, and to stop fooling myself. Thanks so much for your response ☺

 

[Float]

I'm another one who gets PEM from driving - for me it's definitely the cognitive exertion that causes it. Most people don't realise how much focus, concentration, problem solving and decision making is required for driving, let alone interpreting all of the visual input that's coming at you constantly.

I also do a lot better with a low carb and low starch diet as others have said, and can really notice the difference when I deviate from it (usually the next day). It took me a long time eliminating foods and slowly reintroducing to find out what my triggers were. It was a frustrating process but has made a big difference.

I used to live for the heat of summers here, but I really suffer from heat intolerance (and cold intolerance too in winter) since getting sick.

Sorry, no specific suggestions, but letting you know you're not alone

Thanks so much @Haley cognitive concentration yes!
Carbs. .fortunately I have stopped fooling myself and it's clear I'm habitually overeating and at other times having mini carb binges to gloss over the emotional unrest I feel at times.
Luckily I'm not overweight from it yet so have this opportunity to stop doing it.
I do feel better on low carb and intermittent fasting. Your experience is encouraging for me to do what I need to do. Thanks heaps ☺☺☺

 

[Float]

I see you mention your worst symptom is the OI and subsequent hypoperfusion of blood to brain resulting in fatigue. Did you see the recent ME/CFS research suggesting an issue with reduced red blood cell deformability to be causing microvascular blood flow problems.


Check out the latest thread on RBC deformability anyway;
https://forums.phoenixrising.me/ind...nded-rbc-deformability-paper-published.62374/

Thank you @kangaSue
I can ask for my next referral to be neurology. I think we will first complete experiments with thyroid hormones to absolutely rule out thyroid. I have experiment a lot already with this but this is the first time a doc has supported by directing doses and ordering 4 weekly tears until levels are stable and above half range (t3 t4).
Once stable I'll have Holter monitor to assess if I have harmless ectopic or more serious arryhtmia under exertion.
At that point I will absolutely ask for the neurological testing.
I do have some dodgy RBC markers . I'll have to look them up tomorrow andpump them into the forum search bar. I think it's was low MCV and some things else.
I find it best not to ask for too much again once . I'm just happy I'm getting clinical help!
And I'm very grateful for your advice.
Thank you.

 

[Wishful]

Most people don't realise how much focus, concentration, problem solving and decision making is required for driving, let alone interpreting all of the visual input that's coming at you constantly.

Some people find driving relaxing, but it still requires a lot of neural activity. Just consider the computing requirements of self-driving cars. I also find socializing--following conversations and responding to them--to be cerebrally demanding enough to trigger PEM.

 

[Haley]

Thanks so much @Haley cognitive concentration yes!
Carbs. .fortunately I have stopped fooling myself and it's clear I'm habitually overeating and at other times having mini carb binges to gloss over the emotional unrest I feel at times.
Luckily I'm not overweight from it yet so have this opportunity to stop doing it.
I do feel better on low carb and intermittent fasting. Your experience is encouraging for me to do what I need to do. Thanks heaps ☺☺☺

It's hard trying to stick with the diet restrictions - especially when eating out or at someone else's house. I find I have to be careful with any processed foods, as they often contain hidden nasties that cause me problems. I try to stick with a meat, veggie and fruit diet but it does get hard when I'm too tired to prepare anything! So I do fall off the diet every now and then, but just have to reset and start gain

 

[Float]

. I also find socializing--following conversations and responding to them--to be cerebrally demanding enough to trigger PEM.

Oh I totally get this! When there is pressure to participate it can be stressful but at other times I just say to friends. ...hey I'm feeling really zen and peaceful, I have no thoughts, I may speak very slowly and little today ..you're going to be doing all the talking. ..but I'm listening. When I have the opportunity to play it this way, it's much better. But of course tyre are many times when I just have to say "sorry I'm out of it and dizzy, I have a headache , I have to go home and lie down "....especially happens If I drove to them 20 minutes away!