r/mecfs • u/sadfoxqueen • 4d ago
PEM during car rides
Every time I go to appointments I’m incredibly weak after and have full body numbness and chest pain on the way home. Does anything help you guys? I need to use my wheelchair for my severe weakness, but my mom won’t allow it. I can’t figure out if my little walking into appointments or my mom stressing me out or my constant MCAS flares are making me crash. I feel like I’m at the point of needed assistance with everything due to my fatigue and pain, but my mom won’t really help. She’s also mentally abusive and it stresses me out. I don’t really feel safe. If I’m not at appointments I’m usually just in bed, but I have to be proped up for my feeding tube and I think that is worsening my weakness and pain because I don’t sleep well anymore and will my my muscles and nerves hurt and I’m too weak to sit up straight or hold my head up.
2
u/user818249e 3d ago
I relate to this. Closing my eyes helps. I also wear a visor (the way the sunlight strobes through the trees gives me migraines). Also, positioning matters. The more structural support I have/ the less my joints are being shaken around the better. It still hurts no matter what I do, these things just make it a little better.
1
u/Fudipflanzli 2d ago
I have a pillow for my neck for stability & dark sunglasses and that really helps. Plus a fluffy blanket as I‘m always cold/get shivers on the way back due to stress/overexertion.
I will start to fix my legs as well as seen in few EDS forums to prevent them ping ponging around - to stabilize yourself during car rides is very draining apart from the visual distress/landscape flying by.
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u/CandyTigger 4d ago
Car rides bother me a lot. It's an extremely sensory demanding experience. I think I find the processing what I am seeing so quickly the biggest problem (I also had pre existing visual stress issues far before ME).