Severe first time crash

[bensmith]

My first crash, relezing I now have ME. I get hot flashes when I turn over or move in bed. Is this also crashing or no? I'm trying to only get out of bed to poop. reaching over for the pee bucket crashes me too I think. stuffy nose, hot flashes, emotional changes. eveyrthing seems to right now. I have tons of other obsticles too.

panic disorder, hppd so can't meditate, etc. i basically try to just ly still in bed, but it's been hard the last couple weeks. think i added a bad crash tonight as wel have insomnia.

my main thing is asking, i know I need to not move in bed, i can tell its not good, but will that not allow me to get better? Do i need to be completely still all day? Is that a realistic goal? Not sure I can do that if i'm being honest, i'm adhd among other things. i have been using stims some to calm my mind, but I hear that might be bad too? but yeah so my goal should be to not move at all, no stimuleation, then one trip to bathroom to poop, maybe 4 pees a day to stay hydrated, and then 1 meal at night when i feel less bad( but still very bad)

 

[bensmith]

Shit, just crashed last night. i was online for a short amount of time and maybe eating. those two things pushed me over. waiting to see how much worse i get. I am very afraid and fairly certain i'm headede into very very severe territory soon. I was already resting 20ish hours a day, maybe a bit less. now, I simply am having trouble cutting my life down to beyond nothing and staying somewhat sane. after doing this for weeks, i just really need a break from the constant pain so i got on reddit to distract myself, force fed some food in me, and now I have crashed crashed. wiating to see how much worse it gets. i can't beleive i got here so fast. this is not life, not even close.

 

[Wolfcub]

@bensmith Welcome to Phoenix Rising, and I am so sorry you are feeling bad like this right now.

I think it depends on how bad you feel. Crashes demand rest -yes. If you are feeling really severe, then remaining still may be your best option, until the crash starts to pass. They usually do. But again that depends on your personal condition, and how severe you are to start with.
It might not be wise to push the body while you feel this way. Be patient.

Gentle breathing exercises might help, but see how you go with that. Would some low volume "chill out" music, or chilled classical help? It can elevate mood at least, and be a gentle stimulus without demanding anything of you. Again, you'd have to see how you go with that. It might not suit you.

Did you do too much while feeling not too bad, and is that what crashed you?

I get hot flashes too when I'm on the cusp of a crash. I know I'm a female but I am way past menopause, and stopped having the menopausal kind years ago. This is new. It might be something to do with the hypothalamus, and our temperature regulation. But I get them IF I try to push myself to do some work (mental mostly) when my whole system is telling me it's had enough.

I hope you find some help and answers here. Take care.

 

[gbells]

My first crash, relezing I now have ME. I get hot flashes when I turn over or move in bed. Is this also crashing or no? I'm trying to only get out of bed to poop. reaching over for the pee bucket crashes me too I think. stuffy nose, hot flashes, emotional changes. eveyrthing seems to right now. I have tons of other obsticles too.

panic disorder, hppd so can't meditate, etc. i basically try to just ly still in bed, but it's been hard the last couple weeks. think i added a bad crash tonight as wel have insomnia.

my main thing is asking, i know I need to not move in bed, i can tell its not good, but will that not allow me to get better? Do i need to be completely still all day? Is that a realistic goal? Not sure I can do that if i'm being honest, i'm adhd among other things. i have been using stims some to calm my mind, but I hear that might be bad too? but yeah so my goal should be to not move at all, no stimuleation, then one trip to bathroom to poop, maybe 4 pees a day to stay hydrated, and then 1 meal at night when i feel less bad( but still very bad)

Shit, just crashed last night. i was online for a short amount of time and maybe eating. those two things pushed me over. waiting to see how much worse i get. I am very afraid and fairly certain i'm headede into very very severe territory soon. I was already resting 20ish hours a day, maybe a bit less. now, I simply am having trouble cutting my life down to beyond nothing and staying somewhat sane. after doing this for weeks, i just really need a break from the constant pain so i got on reddit to distract myself, force fed some food in me, and now I have crashed crashed. wiating to see how much worse it gets. i can't beleive i got here so fast. this is not life, not even close.

I would start with working on your pain control regimen. C3 curcumin time release is a great way to reduce inflammation. A pharmacist recommended I stack acetaminphen and ibuprofen (alternate dosing every 4 hours). Meditation for pain helped reduce severity by 50%. I have doctor's permission for a short 3 day bout of vicoden if pain gets severe.

No activity is dangerous due to blood clots. I always made sure to get at least 10 min of light walking in daily. Discuss with doctor.

 

[bensmith]

@Wolfcub thanks, i try breathing but it makes me dissociate, and music is too much for me. thanks for the ideas though!

I am not sure what started this first crash. I just had another within this crash, i have adrenaline now. should I act is if I am the same level of sick I was yesterday, is that proper protocol if you know? now that I feel fake better, I've been still bed bound but online much more than I should be.

@gbells. no pain atm, thankfuly. i did just develop air hunger after masterbating lats night. i knew I shouldn't have, but it's a hard illness to manage. I will consider the 10 mins, but it agrevates me a ton to even sit up. should i maybe see if this gets better in the coming weeks before adding that? I'm really too weak for anything it seems, I only get out of bed 1 time to poop.

 

[Mary]

Hi @bensmith - do you have a doctor helping you with any of your issues? Unfortunately knowledgeable doctors who can help us are quite scarce but once in awhile someone finds one. I've been looking for doctors in Oklahoma and the pickings are slim (like everywhere else!) but there's a Dr. Kem at the University of Oklahoma whose name came up in relation to issues related to ME/CFS. He's listed as primarily a researcher, so I don't know if he's seeing patients, but I think it would be worth at least contacting his office and asking if they could refer you to someone. Your average G.P. is not going to know what to do. Here's contact info for him: https://www.ouhsc.edu/endocrinology/faculty/kem.asp

Whitney DaFoe is a very severe ME/CFS patient. His father, Ron Davis (who led the Human Genome Project), is leading a team of researchers at Stanford in trying to solve ME/CFS. Not too long ago Whitney started taking Abilify and has had some modest improvement I believe. I don't know if this would help you, but it might be worth looking into. You might do a thread here asking severe patients what has helped them.

I don't know how close you are to Texas - there's a Dr. Patricia Salvato in Houston who specializes in ME/CFS and it appears she does tele-appointments - that might be a possibility for you too.

I think there is help for you - it's just going to take some digging - nothing is simple with this illness unfortunately!

 

[bensmith]

thanks so much @Mary will do.