Does anyone else get this with CFS? POTS?
For 2 years now I’ve had this. It started during a very bad time in my life. I was having 12 hour panic attacks daily for 9 months. One evening my feet flared hot as I walked about, they went all red and blotchy over the toes and top of the door. I thought nothing of it as I’d been lying down for hours in a panic attack so assumed due to that. I thought it would be a one off but this continues every night and has since. I spoke to my GP about it and showed her photos and she was baffled. I was worried it was neuropathy but I get no numbness and 2 years on they aren’t numb. Between these flare ups my feet are fine.
It starts like a warm rushing of blood feeling in my toes so I know before I stand it’ll flare once I’m walking about. Then once I lie down again, within a minute or 2 they’ve cooled down and the blotchy red rash has vanished too. It was just an evening thing but now I get it during the day at times. I can’t really paint point a trigger as it happens if I’ve rest a lot, happens if I’ve been too active. Some days it’s mild and flares just once just before bed as I brush my teeth, other times it happens in the daytime while I am cleaning or just walking around.
It always worries me it’s related to my heart or something. My gp says it won’t be that as I’ve no symptoms of heart issues. I still worry as I’ve not had a physical exam or recent blood tests due to my issues with appointments that I’ve discussed here.
My GP thinks I have pots after we spoke recently. I’m doubting this is a pots symptom though as it’s every night, never a day without it, sometimes it flares once in the evening, sometimes twice and once in the day. It only flares when I walk about or I may feel the flushing and rushing of blood in my feet before i stand up. Surely red feet aren’t a pots symptom? She thinks I have it as I get strong symptoms on activity. When I’m upright I can only manage 5-10 minutes before I feel really funny in my head like all swimmy and woozy headed. My feet will feel warm, inside my body feels warm and I just get this strong feeling that I need to lie down. If I ignore it then I then have a data heart rate and feel faint. Then when I lie down I often have a panic attack out of fear because those symptoms are scary. I’ve had this for over a year and it does limit me but it was just put down to CFS but now my GP says it’s sounds like POTs as it’s like I’ve an intolerance to standing for long. I got through weeks it’s much better and I can be more active then other weeks it’s really hard to be active. My steps recently have been under 800 a day on my phone. I was doing about 1800 around the house before lockdown and I was in a better place with my symptoms.
I’d say it’s milder than it was in the beginning, my whole foot used to go red and I’d have stabbing pains. It’s a lot milder these days but it’s still a daily thing.
Anyone else experience this? I’ve just had a flare up now while cleaning the bathroom. I was stood up 5 minutes and then I felt my feet warm so I took my slippers off and my feet/toes were blotchy and warm. I lay down and now they’re fine within 2 minutes
I’m sorry for the foot photo lol.
For 2 years now I’ve had this. It started during a very bad time in my life. I was having 12 hour panic attacks daily for 9 months. One evening my feet flared hot as I walked about, they went all red and blotchy over the toes and top of the door. I thought nothing of it as I’d been lying down for hours in a panic attack so assumed due to that. I thought it would be a one off but this continues every night and has since. I spoke to my GP about it and showed her photos and she was baffled. I was worried it was neuropathy but I get no numbness and 2 years on they aren’t numb. Between these flare ups my feet are fine.
It starts like a warm rushing of blood feeling in my toes so I know before I stand it’ll flare once I’m walking about. Then once I lie down again, within a minute or 2 they’ve cooled down and the blotchy red rash has vanished too. It was just an evening thing but now I get it during the day at times. I can’t really paint point a trigger as it happens if I’ve rest a lot, happens if I’ve been too active. Some days it’s mild and flares just once just before bed as I brush my teeth, other times it happens in the daytime while I am cleaning or just walking around.
It always worries me it’s related to my heart or something. My gp says it won’t be that as I’ve no symptoms of heart issues. I still worry as I’ve not had a physical exam or recent blood tests due to my issues with appointments that I’ve discussed here.
My GP thinks I have pots after we spoke recently. I’m doubting this is a pots symptom though as it’s every night, never a day without it, sometimes it flares once in the evening, sometimes twice and once in the day. It only flares when I walk about or I may feel the flushing and rushing of blood in my feet before i stand up. Surely red feet aren’t a pots symptom? She thinks I have it as I get strong symptoms on activity. When I’m upright I can only manage 5-10 minutes before I feel really funny in my head like all swimmy and woozy headed. My feet will feel warm, inside my body feels warm and I just get this strong feeling that I need to lie down. If I ignore it then I then have a data heart rate and feel faint. Then when I lie down I often have a panic attack out of fear because those symptoms are scary. I’ve had this for over a year and it does limit me but it was just put down to CFS but now my GP says it’s sounds like POTs as it’s like I’ve an intolerance to standing for long. I got through weeks it’s much better and I can be more active then other weeks it’s really hard to be active. My steps recently have been under 800 a day on my phone. I was doing about 1800 around the house before lockdown and I was in a better place with my symptoms.
I’d say it’s milder than it was in the beginning, my whole foot used to go red and I’d have stabbing pains. It’s a lot milder these days but it’s still a daily thing.
Anyone else experience this? I’ve just had a flare up now while cleaning the bathroom. I was stood up 5 minutes and then I felt my feet warm so I took my slippers off and my feet/toes were blotchy and warm. I lay down and now they’re fine within 2 minutes
I’m sorry for the foot photo lol.
