My daughter absolutely can’t exercise outside or run, heat and dehydration are the enemy!
1 Like
My D and her rheumatologist determined that rowing is perfect so our living room has a rowing machine in it. Fortunately, you can tip it up, so it takes no more room than a grandfather clock.
Hydration, pacing, staying cool are all important. Having a good medical team to work with is helpful as well. D works with an MD from Stanford and one from USoCal, plus additional experts as they are added.
It is challenging and I’m so glad our insurer is fine with paying for the consults along the way.
1 Like
I’m always curious what others do. My daughter sees a neurologist at Children’s Hospital Colorado. Has seeing a rheumatologist been helpful? My daughter also has celiac and psoriasis, so she also sees a gastroenterologist and dermatologist. Her older brother has T1D, so we were smacked hard with autoimmune diseases.
1 Like
My D attended USC (as did S), so that’s why she started with MDs there. The MD she sees is the one who has an interest in Chronic Fatigue Syndrome, CFS, which she has with her POTS (many patients have both).
My local allergist was the only one who would spend the time and energy trying to help my kids and our family. She’s the one who found the Stanford CFS program.
My S saw a local cardiologist for awhile, who tried a few things but then cardiologist shrugged his shoulders and gave up.
We saw a CFS expert in upstate NY, Dr David Bell. We consulted online with a John’s Hopkins doc (Peter Rowe). She saw a CFS expert, John Chia, in LA for awhile.
At this point, she’s fairly stable but we haven’t found any miracles. Our S seems to have significantly improved post-puberty and we are happy for him but he still lacks the stamina he had and wishes he would regain. S is waiting to see how D fares before he tries to be seen by her MDs — he says she can be the adventurous one.
Sorry OP for the meandering. Hope any of this is helpful to anyone.
2 Likes
Just to add a bit of upbeat news—there is a world renown Stanford geneticist who is urgently researching ME/CFS (which is frequently in linked to POTS) because his son is afflicted with it. He has gotten Nobel prize winning scientists to join him and they are making some progress. I’m very excited about it and have a book he coauthored on reserve at our local library. It’s called “The Puzzle Solver.”
The researcher is Ronald Davis,PhD and he has 55 patents and continues to press forward!
4 Likes
This is the movie, available on YouTube and other services. Also saw it online.
1 Like
They are trying to track the post covid patients, particularly those who end up with “long haul” symptoms that sound much like me/covid.
1 Like
Very good talk by Dr Ron Davis on YouTube in March 2021 about latest research on ME/CFS, particularly the “metabolic trap.” It sounds very promising. I have great admiration for him!
1 Like
Highly recommend, “The Problem Solver.” It’s an engrossing book about ME/CFS, a hidden and poorly understood global condition.
2 Likes