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What do you do when you have more energy, but using it gives you PEM?
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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What do you do when you have more energy, but using it gives you PEM?
BCAAs and glutamine may have stopped PEM for me.
@Mary Thanks for the info on the brands and where you buy. I did look at the links...that's what convinced me that I should trial those 2 things Glad you posted them!
If your PEM has stopped because of those supplements, that's amazing!! Keep us posted!
Use the extra energy to heal, fight infections that might exist, and slightly increase activities of daily living. You can also try doing slightly more in short time increments so you still stay under your PEM threshold but get a little bit more done overall.What do you do when you have more energy, but using it gives you PEM?
How true that is!More energy does not directly correlate to less PEM, as I discovered to my detriment
Yes, some supplements work better when added with other particular supplements. PR member will be able to give examples better than I can think of right now.Maybe some treatments require supportive synergies
Make sure he's well rested and hydrated leading up (starting now) to the appointment. In case POTS is involved, have the car parked as close as possible to your house door to minimize time he'll be upright. And when arriving at the clinic, have a wheelchair ready to bring to the car door so again less energy is exerted. (perhaps dr. Chia's office supplies one or you can find one to borrow or rent for the day if you don't own)Any advice on how to minimize POTS in the car? Seat belts can't do their job if one is reclining.
Ain't that the truth! Sigh.... People who have been dealing with this illness for decades are still trying to figure out how to manage it.@SOC I've just started reading your "How long does your PEM last?" It is very enlightening. It looks like it is going to take a long time to figure all of this out.
POTS seems likely, but obviously nobody knows for certain. Is he being treated for POTS (or some form of OI)? Is he fluid-loading at night and in the morning? Is he drinking 2-3 liters of water daily, at least 1 liter of which is electrolyte water? Does he wear compression socks? I doubt you'll make much progress with PEM if POTS is not under control. In fact, it might not be PEM, but exercise intolerance from dysautonomia which is a difference beast and more amenable to treatment. If that was under control, you might find his PEM threshold is a lot higher than it currently appears.Your observation that, "More energy does not directly correlate to less PEM." sure rings true in our house today. He was trying so hard to mostly recline in the zero gravity chair yesterday(it help his POTS), when he really felt like sprinting through the yard. Just a simple car ride...I don't know if the POTS or the exertion triggered it.
When daughter and I were first seeing our original ME/CFS doctor, we couldn't sit up in the car for the whole trip -- 6-7 hours. We took turns lying down in the back. We got a couple of seatbelt extenders so we could lie down and belt in with two sets of belts. If he's a small guy, you might not even need the seatbelt extenders, just loosen the seatbelts as far as they'll go. Admittedly, it's not as good as sitting up and being belted in normally, but it's pretty good and probably sufficient. It got us to the ME/CFS specialist, which was critical to improving our health, so it was worth it.He has a 2 hour car trip to see Dr. Chia coming up on Thursday, it's scary to think what might happen.
Any advice on how to minimize POTS in the car? Seat belts can't do their job if one is reclining.
I think Broderick's work is suggesting that -- that certain treatments work better if done in a particular order.He tried the CoQ10 before and it made him feel worse. Now I'm wondering if some approaches can only work if certain other symptoms are being treated? Maybe some treatments require supportive synergies.
@Mary -hi, Mary. Do you know is it glutamine, or glutamate that is excitatory? One revved me up, but good. The one that helps the stomach.
I have very severe POTS so cant sit in a car with my legs down. What I do is recline the seat so Im laying back and I put my feet up on the dashboard (yeah probably not too safe in an accident but I'd just be far too uncomfortable doing anything else.Any advice on how to minimize POTS in the car? Seat belts can't do their job if one is reclining.
Glutamate is excitatory. Glutamine is supposed to heal the gut, as well as help the immune system and energy.
He has a 2 hour car trip to see Dr. Chia coming up on Thursday, it's scary to think what might happen.