Erin Rackham, PhD
Region: US
Wednesday 26 August 2026 16:32:25 GMT
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Brittany Washburn Technology💻 :
Have you looked for jaw cavitations yet? That is my current pursuit
2026-08-30 13:45:22
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Joy Kinser :
“If I don’t have enough energy then I just don’t eat. Unless I have the wherewithal to ask someone to bring me something.” This is so deeply relatable. This is my norm but I’ve not heard anyone say it so clearly. I’m trying eat earlier in the day for the sake of my blood sugar, but sometimes I can’t. Thank you for sharing this, I feel less alone!
2026-08-26 17:12:14
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no :
Oh honey, I so relate to this. I'm a Survivor of the first wave in New York and bedbound for three years couldn't walk for a year crawling to the bathroom. I live alone so I too lost a lot of weight because I couldn't get up and stand and make food but because of you, I started guanfacine and it has been helpful for me so I just want you to know that even when you are Pruned out lying in bed and can't lift your head up you help somebody else and I hope that gives you some comfort on a day when you're just flat out you matter so much and I'm so grateful that you had the courage and the willingness to share your story here
2026-08-26 18:13:54
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❤️🔥Frank❤️🔥 :
I had to spend like 5-7 years very slowly strengthening all the muscles responsible for holding up my head, like researching the anatomy and the right exercises, making those exercises into something that didn't trigger post exertional malaise. it made a big difference. I used to have so much more pain and neck fatigue, I used to get so many more migraines. strengthening those suppotive muscles in my back and neck reduced my pain and fatigue significantly. it's almost impossible to describe how slow and incremental this process has to be though. it took years, I had to pretty much just focused on physical rehabilitation, my life did not have many other aspects outside of the physical rehab, diet and sleep. I started with tiny exercises I could do laying down in bed. I don't even know if I'd recommend it in case it made things worse. I haven't met anyone else who has approached it like I did so I have a sample size of 1.
2026-08-26 21:28:41
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sona🦋🧘🏽♀️ :
i stopped ketotifen after a week, the PEM was insane
2026-08-27 19:03:51
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Zen&Joy :
I feel this on a cellular level. I started keeping healthy snacks in a drawer next to my bed to be sure I do not land back to where I was a year or even 6 months ago (50lb weight loss). I am so grateful for the data the Visible band gives me also. Thank you for reminding me many of us are still learning years and years later and trying to work with the massive curve our energy envelopes do or do not give us. I finally broke down and purchased an electric wheelchair to be able to regain some function outside. Sending you care and a huge thank you for sharing honestly!
2026-08-29 11:50:01
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adri :
Same!! Crom isn’t doing what everyone says it will and I think I’m crashing even more lol
2026-08-26 18:49:55
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KT 🧿✨🌈 :
The eating part is so real because I know if I eat my mitochondria will be happier but I just don’t have the energy…
2026-08-27 16:48:39
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user680200462567 :
have you looked into the Born Free protocol at all? what do you think of it? I'm considering looking into it for myself. I'm sorry you're suffering so much again 🧡🫂
2026-08-27 02:53:58
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riley :
watching this from the exact position you're in. I relate so so so hard. I'm 90% bedbound and if I'm out of my bed I'm at an appointment. it's awful. the fundamental dysfunction of my mitochondria is truly what I believe is the root of most of my issues at this point because my mcas meds are stable, my pots meds are stable, my lyme and babesia meds are stable, etc. the only two things I've introduced recently (like in June) that are giving me any hope are red light therapy and ss31 injections. and even then, it's micro improvement. all this to say, I so so get you. lying in the dark at 2:40pm in solidarity my friend!
2026-08-26 18:39:35
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that_therapy_lady :
I’m living this nightmare and every time I hear you talk about It makes me realize that it’s actually as bad as I think that it is.
2026-08-27 01:18:49
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copingwithbrooks :
What do you mean it’s purely physical? Because it affects me more than physically.
2026-08-27 03:09:42
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Tabetha Twitchy :
I stopped ketotifen because I wasn’t able to get up in the morning with it
2026-08-27 11:27:04
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Ad152 :
It takes about 3 days then ketotifen exhaustion tends to stop
2026-08-27 01:04:24
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Traci :
Yep. That’s my life too. I hope you feel better soon
2026-08-28 21:45:59
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Poodlemom13 :
It works but makes me hungry and sleepy
2026-08-27 23:10:48
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Nicky Chicky 🇨🇦 :
I feel like such a lazy person compared to how I used to be! I lose my breath so easily
2026-08-27 05:52:58
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Shazzie :
I can’t take my full dose yet. It’s been ages. I just started on KPV capsules and it’s making me want to be upright. I wasn’t expecting that to be the first result 😳
2026-08-28 16:38:39
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Lynda :
In the past couple months for me it just seems to be getting worse. I don’t understand. So many (at this point) years lost to my bed. And just went to a new endocrinologist and she basically diagnosed me with “fat” and I wanted to rage scream in her face.
2026-08-29 03:47:52
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V :
What are your plans to address your neck instability? I had a cervical MRI showing severe C5-7 instability but there’s been no treatment given other than PT and pain management.
2026-08-26 17:02:53
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🍃ꪱׁׅ ᧁׁ ꪀׁׅ ꪱׁׅ ☔ :
Could the cervical instability be due to hEDS?
2026-08-26 19:41:52
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Kaitlyn Maria :
Yep…I have small kids so I can’t be in my bed always when I need to but I spend all my days either sitting /laying on the floor with them, in my bed, or in the bathroom. I haven’t left my house other than to drop them off at school/day care and pick them up. I haven’t been able to work at all since April 💔
2026-08-28 01:59:33
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Dragons (They/Them) :
this is so real. I'm horizontal for maybe 3/4 of the day and it sucks. side note, I keep some snacks in my room so I can have something until I have enough energy to go and grab a proper meal. not the most efficient thing, but it's better than letting my blood sugar dip to the point where I get caught in a worse spiral
2026-08-28 16:01:49
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AnnaDiamond :
My body does this after I drag myself out of bed to get my son on the bus I immediately go back to bed for 3 hours minimum. But that’s usually because that’s all my life can allow. I know my body wants me to sleep more but I believe mine is pots and chronic fatigue.
2026-08-28 03:43:48
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katiebeantown :
MCAS is so scary. I’m sorry you’re dealing with it. I just upped my Lyme meds and I’m having a harder time adjusting than usual. Does mitochondrial support like Nadh or PQQ help?
2026-08-28 12:12:55
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