Has anyone else with ME/CFS had a poor reaction to compression garments? #pwME #pwLC #NEISvoid The doctor from the ME clinic wanted me to try it for 3-4 weeks, all day every day, the same way I would try a new prescription. But I felt markedly terrible by the time I quit trying both times. - ThreadSky

midcatecrisis.bsky.social • 17 days ago

Has anyone else with ME/CFS had a poor reaction to compression garments? #pwME #pwLC #NEISvoid

The doctor from the ME clinic wanted me to try it for 3-4 weeks, all day every day, the same way I would try a new prescription. But I felt markedly terrible by the time I quit trying both times.

Reposted from Cate

2nd attempt trying all day every day lower half compression as an intervention. The first time I made it to about noon. This time I made it to noon on the second day.

I can't decide if the worsening symptoms were a result of the compression or of the exertion of pulling them up and down.

Comments

carrieoki.bsky.social•17 days ago

I find compression helps with POTS but as far as ME/CFS I don’t think they help and the effort of putting them on and taking them off can just make things worse especially when you can get similar benefits by simply elevating your legs.

andrewg76201347.bsky.social•17 days ago

Son couldn’t manage full length compression, even Skins. They made his skin prickle constantly. But main thing was the effort of getting them on & off gave him PEM. Was severe MECFS at the time. For medical appts we bought Extremit-Ease - lower leg only, light inner sock, velcro tightening on outer.

no1sarah.bsky.social•17 days ago

Sometimes the effort of putting on/removing can be too much, & sometimes the stimulation from them worsens pain (but often improves it).

The instructions that came with my prescribed, custom compression said you should build up gradually to wearing for long periods though.

midcatecrisis.bsky.social•17 days ago

Maybe if I try again I will do a little bit at a time, like when I'm going to be upright. The doctor said to put them on before I got out of bed and keep them on until bedtime and it totally felt intolerable after a while.

maddyoby.bsky.social•17 days ago

Wowza that’s a long time. Esp to start. I didn’t have the energy to get them on so didn’t find them helpful. And I also found them uncomfortable to wear for a few hours. Let alone all day!

If you’re going to try, defs build up over time. Just like many with ME need to do with meds.

no1sarah.bsky.social•17 days ago

As soon as mine feel intolerable, I take them off if I'm able to. I definitely couldn't have coped with a full day of them in the beginning.

midcatecrisis.bsky.social•17 days ago

It's good to know it's not just me making up a problem in my head. Thanks!

daniellewis.bsky.social•17 days ago

yeah i just couldn’t get them on without overdoing it. another case where the treatment for POTS is contraindicated by PEM

rooklafetra.bsky.social•17 days ago

Compression socks have never been helpful for me and made me feel worse, but targeted abdominal compression has helped.

judith967.bsky.social•17 days ago

How do you do targeted abdominal compression? Interested for my daughter with ME/CFS who has a lot of abdominal pain and nausea.

rooklafetra.bsky.social•16 days ago

I've experimented with back braces, belly bands, medical compression binders, and hands down the best one was a corset a seamstress friend made for me. Unfortunately, it got damaged and custom work is expensive, but having it fitted to your body ensures it's putting pressure where you need it.

judith967.bsky.social•16 days ago

Thank you for letting me know!

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