no new outbreaks just paranoia

[Guest guest]

So glad to see others posting. This group didnt seem too active when I joined and since then, I have seen many new posts. I am a newbie and have only suffered one outbreak so far; so, I like to see a wide range of comments regarding this. I think I had an easy first time with the whole thing. It was unpleasant, yes, but I didnt seem to have the extreme bouts that some have had. The current problem is worrying about it.I find that I think about it every day, wondering when it is going to return. I have almost constant sensitivity in my ankles, a lesser pain than when the EN first started. It really keeps me very aware of what I had gone through this last Spring. I also am guilty of paranoia from reading the comments of folks who are really suffering. Im glad to have this information but am trying not

to get so psychosomatic about it. I wonder how disabled I will be if a really awful outbreak occurs, will I ever figure out why it happened, who do I even start with in my health care circle? Im not really willing to take steroids, so should I even bother to investigate? So far my only therapy is knitting, unless I get EN wrist pain as I did the first time. Maybe it will never return and Im getting worked up for nothing.I just wanted to let everyone know that in between outbreaks, EN is still a part of my every day. Im sure even if you are not currently suffering, every comment posted is interesting and relevent. Keep posting! Thanks for your time, everyone.

[Guest guest]

Hi ,

Having had EN on and off for over 40 yrs. I know exactly what you mean. I ran my

hands over my lower legs every day wondering if it was coming back. I've had

both milder and more severe outbreaks over the years--yet I never resorted to

medication of any kind. And I never did find the trigger in spite of taking many

of the tests and doing a lot of reading and observation. Some bouts were

horrible and the leg [i oddly enough got EN in my left leg only about 99% of the

time] became swollen and beet red...so bad that the thought of never going into

remission crossed my mind. But I always reminded myself that in the past I

always did find my way back to remission--for a time at least. Sometimes for a

couple months and other times for longer. Then my husband came up with an

idea--why not soak the leg in cold--ice cold water and see if it helped. I

already knew that inactivity and bed rest helped me along with support

stockings. So what did I have to lose? I set up a small plastic trash can that

my lower leg fit--and filled it with cold water and then added those ice packs

to chill the water further and I stuck in my left leg and sat there and watched

TV for from 30 Minutes to an hour at a time--first thing in the AM before I put

on the support stocking and again before bed. I did this for a couple months and

then I started to walk around the block--which in the past would stir up the EN

again. I added a little distance each day and the remission held. After about 3

months I stopped the soaking. That was over 4 yrs ago and I am doing fine. Once

I thought the EN was returning and I started soaking again. But it retreated

quickly and never got inflamed. I don't know if this will help anyone. My theory

is that the EN stopped when I reached menopause and that I was overly sensitive

to my own hormones all these years. Now that the hormones have diminished maybe

it caused the EN to retreat. Or maybe the soaks, rest, and support stocking was

my " cure " . But fearing EN, in my opinion, can only make things worse. It is what

it is. I've spoken to thousands of people with EN by now. Only 2 people died and

they had other disorders that took them--not the EN. They both knew they were

very sick and were hospitalized. Mostly what I regret about is that I could not

work much because of EN, and now my social security is close to nil. But a good

life is not all about money--and that is a lesson I might not have learned were

it not for EN.

I hope you find what works for you, and take away the lessons that EN can teach

you...{patience, hope, quieting your mind, prioritizing activities etc} other

wise you may have suffered in vain.

Love,

http://poems2order.wordpress.com/

>

> So glad to see others posting.  This group didnt seem too active when I joined

and since then, I have seen many new posts.  I am a newbie and have only

suffered one outbreak so far; so, I like to see a wide range of comments

regarding this.  I think I had an easy first time with the whole thing.  It was

unpleasant, yes, but I didnt seem to have the extreme bouts that some have had. 

The current problem is worrying about it.

>

> I find that I think about it every day, wondering when it is going to return. 

I have almost constant sensitivity in my ankles, a lesser pain than when the EN

first started.  It really keeps me very aware of what I had gone through this

last Spring.  I also am guilty of paranoia from reading the comments of folks

who are really suffering.  Im glad to have this information but am trying not to

get so psychosomatic about it.  I wonder how disabled I will be if a really

awful outbreak occurs, will I ever figure out why it happened, who do I even

start with in my health care circle?  Im not really willing to take steroids, so

should I even bother to investigate?  So far my only therapy is knitting, unless

I get EN wrist pain as I did the first time.  Maybe it will never return and Im

getting worked up for nothing.

>

> I just wanted to let everyone know that in between outbreaks, EN is still a

part of my every day.  Im sure even if you are not currently suffering, every

comment posted is interesting and relevent.  Keep posting!  Thanks for your

time, everyone.

>

>

>