r/cfs • u/Milzebob • 4d ago
when do u know...
I've had MECFS for 7+ years, post tick-bite. Usually I use a wheelchair at home and walk about 5 steps to bathroom. I drive once a month for appointments.
I recently had to walk 150m as I couldn't get a near enough park to my osteopath. I didn't get PEM from this walk.
3 days ago, my ptnr & I were staying at an apartment when a fire alarm went off ordering everyone to evacuate. I walked down 4 flights of stairs. I expected PEM yday, maybe today, but all I feel is stiffness in my calves (like the good ol' days of exercise).
I have recently done 8 weeks of 7mg nicotine patches. Plus, a kinesiologist (clutching at straws here) prescribed Houttuynia and I found it in Myc-P (herbal) for possible Lyme/Bartonella (I live in Australia where Lyme hasn't been proven). When I first got sick I did an array of Buhner herbs + cistus tea + doxycycline + enzymes - I herxed like hell back then, but now I can drink cistus no probs, and I don't seem to be herxing. But am I possibly getting better????? When do you know???? I've walked more today around the house than in 7 years, I'm so interested (shush now excitement!) to know if the next few days will tell....
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u/Gloomy_Branch6457 ME since 2000- curr. Mod-Sev 3d ago
Honestly, you could still be running on adrenaline from the fire alarm. I’ve had a crash hit a whole week later because of how long the adrenaline lasted. But I do truly hope you are seeing some improvement. Just be careful x
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u/premier-cat-arena ME since 2015, v severe since 2017 4d ago
until you daily have reliably an excess of energy, do not go using that energy or you could get one step forward 10 steps back. wait until those improvements are stable