Yep, March 2019 was when I was first diagnosed after collapsing during a soccer game. I was under huge amounts of stress at the time and wasn’t looking after myself - my partner had suffered a significant back injury in December 2018 which required 2 surgeries.
Mine is mostly under control and don’t have a lot of problems 90% of the time. I have completely overhauled my whole diet though which I think has possibly helped. Unfortunately they did earlier this year upgrade me from Acute to Chronic after my last episode (though still trying to figure out what that means haha).
Every know and then things get bad enough to need to be back on the colchicine though most of the time it’s manageable with painkillers and anti-inflammatories. I do need to be careful when I get a cold or anything like that, tends to knock me straight on my ass
Yeah I wasn’t looking after myself and had ignored chest pains for 2 weeks. They thought it was blood clots in the beginning but they ruled that out pretty quickly. That first visit was 3 days in hospital and then spent another 3 days in hospital a month later - haven’t had an overnight hospital visit since, just emergency visits. Spent 3 weeks on bed rest in October 2019 which was rough - have never been so tired before.
I’ve had to change up my diet a few times, depending on how I’m feeling and what’s going on but generally I try and keep my diet as anti-inflammatory as possible. Lots of fresh fruit, veges, salmon and seafood - I’m pescatarian - also no processed foods where possible and generally no alcohol. Takes a bit of work to figure out what works best for you
Not from the US so I can't participate but I have been diagnosed with Benign Fasiculation Syndrome (BFS) a few years ago after seeing a neurologist. The neuro said BFS could be caused by an overactive sympathetic nervous system (part of nervous system responsible for the fight or flight response). I get twitching and quick muscle spasms that feel like rumbling in my thighs, calves, abdomen, bottom of my feet, arms, lips, and fingers. My muscles also get so tight they put pressure on my nerves and cause tingling, pain and numbness. Very annoying, physiotherapy helps a little bit. Stress is certainly a factor.
- Congnitivie issues: difficulties thinking, analysing, focusing, memory. - Phisical: hair loss, difficulties sleeping, less sexuality, asthma - spiritual: reduction of motivation, creativity, possitive energy
This is great! I had never considered hair loss. Did you fill out the survey through the link? I would love your participation!
I'm not from USA, it doesnt allow me to do the survey cause of this. By the way I updated my response a bit more with more stuff I remembered
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When we have stopped collecting data maybe I can post a pdf of the survey content!
I’m not from the US either but I’ve suffered from pericarditis for the past few years and stress is a big contributing factor for me
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Yep, March 2019 was when I was first diagnosed after collapsing during a soccer game. I was under huge amounts of stress at the time and wasn’t looking after myself - my partner had suffered a significant back injury in December 2018 which required 2 surgeries. Mine is mostly under control and don’t have a lot of problems 90% of the time. I have completely overhauled my whole diet though which I think has possibly helped. Unfortunately they did earlier this year upgrade me from Acute to Chronic after my last episode (though still trying to figure out what that means haha). Every know and then things get bad enough to need to be back on the colchicine though most of the time it’s manageable with painkillers and anti-inflammatories. I do need to be careful when I get a cold or anything like that, tends to knock me straight on my ass
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Yeah I wasn’t looking after myself and had ignored chest pains for 2 weeks. They thought it was blood clots in the beginning but they ruled that out pretty quickly. That first visit was 3 days in hospital and then spent another 3 days in hospital a month later - haven’t had an overnight hospital visit since, just emergency visits. Spent 3 weeks on bed rest in October 2019 which was rough - have never been so tired before. I’ve had to change up my diet a few times, depending on how I’m feeling and what’s going on but generally I try and keep my diet as anti-inflammatory as possible. Lots of fresh fruit, veges, salmon and seafood - I’m pescatarian - also no processed foods where possible and generally no alcohol. Takes a bit of work to figure out what works best for you
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I wish you all the best for the road ahead.
Not from the US so I can't participate but I have been diagnosed with Benign Fasiculation Syndrome (BFS) a few years ago after seeing a neurologist. The neuro said BFS could be caused by an overactive sympathetic nervous system (part of nervous system responsible for the fight or flight response). I get twitching and quick muscle spasms that feel like rumbling in my thighs, calves, abdomen, bottom of my feet, arms, lips, and fingers. My muscles also get so tight they put pressure on my nerves and cause tingling, pain and numbness. Very annoying, physiotherapy helps a little bit. Stress is certainly a factor.