sandgroper
Senior Member
- Messages
- 104
- Location
- west australia
i have had times of waking feeling ok but not being able to do anything......so i can relate......afternoons ahve always been worst time for me though .
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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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Allyson
Maybe the effects of standing in ME patients aren't highlighted so much in Australia? My testing really did investigate the effects of standing on my ME symptoms, thoroughly and systemically. My doctor was very clear that standing would make my symptoms worse--and certainly recommended lying down when it was possible. He even told us to lie down in a store if our symptoms were exacerbated by shopping (guess that should be WHEN rather than if! )
PEM is pretty thoroughly investigated too.
It's just that many doctors aren't aware of this research and the testing options available. Many ME specialists prescribe a TTT as part of testing, and when done with all the "add-ons" appropriate for ME, it is a pretty comprehensive systemic test on the effects of standing.
In your case, since you would have had EDs all your life, was there a time earlier in your life when you didn't have all the ME symptoms you have now? That is one of the factors that doesn't fit for me--I had EDs from birth but ME developed much later, and I do have a lot of viral and bacterial infections.
How does this fit in your case?
Best,
Sushi
re the TTT- I cannot see the point of having one and it makes a lot of people crash..
I would love it if more people could pay attention to the effect simply of upright position and see what happens; eg the horizontal postures in yoga that Tania mentioned .....did you travel upright to get to the class? Did you walk there? that could be the cause of the symptoms rather than the yogo poses?.
o i also like light pressure compression clothis esp on the abdo men eg lycra tops and leotard type things - they seem to help. calf length compression stocking di not help me.
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when i wak it hte morning my face is puffy and after baing up a whole day my face is normal but day my feet are swollen
I think this swelling of the feet and ankes is part of the achey feeling we have - i often feel like I need a foot and calf massage, and elevate my feet on a pillow
the latter is not wise to do regularly apparently as it signals that your blood pressusre is high and therefore causes a futher drop in blood pressue
It isnt necessarily signaling high BP .. it commonly occurs also in those who get blood pooling in legs when upright which is common in POTSy ME patients. (so seems to be some kind of issue with the veins). If its blood pooling it would be best to elevate the feet.
yea but Tania, how do you know the bad effects are form the yoga poses and not from everything els you did that day...stand up to walk to the toilet etc...Same thing would happen to me if I did the yoga exercises at home. (yoga was worst for me then walking due to low blood volume issues).
Its a real pity that may have these issues but dont even know so are being untreated. Treating my dysautonomnia (POTS with low blood volume in my case) thou it still isnt good, but treating this has increased what I can do by around 50%
Some with these coexisting ME conditions have been able to go back to work part time after treating this symptom.
this is interesting
no appaerently elevating the feet for long periods is not good tania, (even though it feels good); my doc tells me this signals to your kidneys or baro receptors that you have a high BP as a lot of fluid is thus forced into the upper body, thus causing BP to drop even further.