When I was 19 I stopped being able to have the heater on in the middle of winter. I remember it because my boyfriend at the time kept telling me I was crazy. It was manageable, though, just don’t sleep in rooms above 64 degrees. Then, later, I got that swine flu everyone was talking about, and honestly I don’t even remember the cold symptoms, I was too busy screaming for ice. Since then I have been a maniac about not ever getting stressed, avoiding eating trigger foods, getting enough sleep, and never, ever getting sick again.
I’m engaged now to a man who understands. But I look at where I was and where I am now; the other day when I was flaring and trying to sleep he sadly wondered how he was going to ever take me camping like I had wanted, once. I was in a situation so stressful over a couple months that I couldn’t sleep or walk or eat I was in so much pain. Why subject my beautiful fiancée to this if I’m destined to repeat it? I used to be a jogger (with the EM, it actually helped), but I’m afraid to start up again because I’ll need to buy new shoes. How can I have a job if jobs are stressful? I’ll never have kids!
I’m afraid I’ll end up in a wheelchair, or stuck at home forever like an ice queen. Sex triggers it sometimes! And all I can think is “would I give these things up to stop the pain?” at the moment, no. But if it gets worse…
Am I doomed to this? Can it get better? I have no money for doctors at the moment, and I don’t know how horrible this is for me. Are there surgeries? Anything I can do at home?
I too have lots of the same worriesas you Abigail. I go to the gym (mostly spin classes, I find I can cycle even when my foot becomes numb just my brain has to work hard at telling my feet what to do rather than feeling what to do) I do want to slowly start running again too.
I dind that sex/orgasm triggers my flares everytime and while things are stable most of the time find it bearable but I've been struggling lately with sleep and been in almost constant nighttime flares and also suffering loads of daytime flares too so starting to be put off doing something that I know will casue it to flare again.
I wonder how many other people suffer from flares during or after sex..??
On a good note I don't think we're all doomed, I went into remission for almost 18 months and live and hope that I might get some respite from this again.
“It is too hot in here”/random mild flares from excercise, which I can actually all together ignore. It used to almost be like a sacrifice to the EM god, I would walk 30 minutes a day in order to trigger a mild flare so that I wouldn’t get them later. It seemed to work but I have no treadmill anymore and walking on a flat surface doesn’t trigger it. These are really only “terrible” at night.
Sleep deprivation/stress/sometimes sex where they HURT really bad, it’s usually only one foot, and it swells to the point of numbness. I can actually sleep through these if I can convince myself that yes, my foot is in front of the fan, I just can’t feel it with the swelling. If my socks get cold and wet I also get one of these.
Flu/crazy stress flares are the WORST. I can’t even think durring them!
My other triggers are alcohol, the foods I am allergic to, and clean socks (I know what the hell?). Food I’m general seems to be easy on me, but I am trying out a paleo diet for a different reason and am gonna track my progress. I miss my treadmill. I swear it helped my mold which helped my EM.
So far things that help are meditation, getting a massage, and actually while sex can trigger it orgasm itself actually helps. I had a toe fungus scare and started washing my feet more carefully and found that lessens their response to triggers?
I have a feeling, and I may be wrong about it, that if I keep myself in good condition otherwise and out of depression that I will stabilize at a mild case if EM. Getting the flu or heavy levels of stress seems to have an effect that lasts a long time afterward, a month or two of flares worse than they normally are. So maybe if I keep the whole system running well I’ll be able to keep doing what I love to do.
If I may ask, what caused your remission, Laura?
Abigail
lauraflora1 said:
I too have lots of the same worriesas you Abigail. I go to the gym (mostly spin classes, I find I can cycle even when my foot becomes numb just my brain has to work hard at telling my feet what to do rather than feeling what to do) I do want to slowly start running again too.
I dind that sex/orgasm triggers my flares everytime and while things are stable most of the time find it bearable but I’ve been struggling lately with sleep and been in almost constant nighttime flares and also suffering loads of daytime flares too so starting to be put off doing something that I know will casue it to flare again.
I wonder how many other people suffer from flares during or after sex…??
On a good note I don’t think we’re all doomed, I went into remission for almost 18 months and live and hope that I might get some respite from this again.
Helped my mood, I meant. I am using an iPhone to type, can you tell?
Abigail said:
I swear I have three different types of flares.
“It is too hot in here”/random mild flares from excercise, which I can actually all together ignore. It used to almost be like a sacrifice to the EM god, I would walk 30 minutes a day in order to trigger a mild flare so that I wouldn’t get them later. It seemed to work but I have no treadmill anymore and walking on a flat surface doesn’t trigger it. These are really only “terrible” at night.
Sleep deprivation/stress/sometimes sex where they HURT really bad, it’s usually only one foot, and it swells to the point of numbness. I can actually sleep through these if I can convince myself that yes, my foot is in front of the fan, I just can’t feel it with the swelling. If my socks get cold and wet I also get one of these.
Flu/crazy stress flares are the WORST. I can’t even think durring them!
My other triggers are alcohol, the foods I am allergic to, and clean socks (I know what the hell?). Food I’m general seems to be easy on me, but I am trying out a paleo diet for a different reason and am gonna track my progress. I miss my treadmill. I swear it helped my mold which helped my EM.
So far things that help are meditation, getting a massage, and actually while sex can trigger it orgasm itself actually helps. I had a toe fungus scare and started washing my feet more carefully and found that lessens their response to triggers?
I have a feeling, and I may be wrong about it, that if I keep myself in good condition otherwise and out of depression that I will stabilize at a mild case if EM. Getting the flu or heavy levels of stress seems to have an effect that lasts a long time afterward, a month or two of flares worse than they normally are. So maybe if I keep the whole system running well I’ll be able to keep doing what I love to do.
If I may ask, what caused your remission, Laura?
Abigail
lauraflora1 said:
I too have lots of the same worriesas you Abigail. I go to the gym (mostly spin classes, I find I can cycle even when my foot becomes numb just my brain has to work hard at telling my feet what to do rather than feeling what to do) I do want to slowly start running again too.
I dind that sex/orgasm triggers my flares everytime and while things are stable most of the time find it bearable but I’ve been struggling lately with sleep and been in almost constant nighttime flares and also suffering loads of daytime flares too so starting to be put off doing something that I know will casue it to flare again.
I wonder how many other people suffer from flares during or after sex…??
On a good note I don’t think we’re all doomed, I went into remission for almost 18 months and live and hope that I might get some respite from this again.
i really hope that you feel better, i was stuck in a never ending extreme stress and struggle and couldnt walk for months, KEEP WALKING THO!!!! if you dont u will lose it. its hard to keep people close when they dont understand what you feel, i hate it, and i feel you there..... there is so much i could type about that relates to your post, but ill just say keep strong and i hope you feel better