Re: new EN diagnosis questions...

[Guest guest]

Dear Kim,

Just checking in before bed and noticed you post.

Since EN can be a delayed allergic reaction, whatever is causing the

reaction is the thing to avoid. That is easier said than done. I have

never found what causes my EN.

Except for Echinacea I have never heard of any specific herbs to avoid.

I am one of those who is using the TEDS stocking. I posted a photo of

me wearing it in my album under " " . I use it only on the left

leg that gets EN. They can be purchased at some drug stores. Actually

it is supposed to be an anti-embolism stocking, but I have found it is

better than a regular support stocking. They go up the thigh, but I

roll mine down to just above the knee as my EN never goes that high.

I have never taken any diuretics so I can't answer that question.

Read our Files and Links re Prednisone. Many on this group have

experience with it, so you can compare notes there. How high a dose is

he taking? It is a very tricky drug to use. You can't just stop it

when you feel better.

I'm not really sure of the sensation your Hubby is describing. Maybe

it is a deep EN lump that is hot and getting ready to surface? My EN

does feel hot to the touch--like a fire burning under the skin.

I have read that an old name for EN was " ST. 's Fire " . No one

calls it St. 's anymore--although it would be much easier to

spell. :-)

How long has this latest flare-up been going on? I do hope Hubby is

able to get some bedrest or at least get those legs elevated as much

as he can.

I hope this answers some of your questions, and the other group

members can add their experiences.

Have a Great Evening!

Love,

[Guest guest]

Hi Kim,

I have those weird warm sensations. My EN is currently

not visible, but I still have pain when you touch my

legs and I feel the heat. Last night I was having

trouble sleeping because it was just too hot. The heat

seems to emanate from my knees to my upper thigh. It

is a very weird sensation.

I am idiopathic although the rheumatologist declares

it to be allergies to heaven only knows what. MY GP

disagrees with him. The dermatologist couldn't find a

cause either. The infectious disease specialist ruled

out all kinds of diseases as well.

My EN centers around my knees (above and below). I

have joint pain from arthritis as well which

complicates matters.

Terri

--- Kim Godlewski wrote:

>

> And he asked me to ask if anyone has ever

> experienced this....he is having

> these weird warm sensations that are located

> somewhere around his upper

> thigh? He says it's hard to describe where it

> is...inside his thigh. Then

> there was this pain that hit somewhere in his leg

> but not really in the same

> place. He says it's really hard to explain. But

> the main thing was this

> really odd warm sensation just centralized in one

> area.

>

> Thanks!

> Kim

[Guest guest]

Hi Kim and Terri,

Thanks for sharing your stories. I have had EN for quite a while but my rheum.

doctor and dermo. doc always attributed it to hormonal issues - birth control

and pregnancies. The other times I have gotten EN they do the regular tests (is

there such a thing?) but say that I am a healthy person and not to worry about

it. You know, I just don't feel so healthy. I moved to a new state and have no

new doctors so that is hard for me now. I am working on establishing all new

relationship with a new (not as good) insurance. That is complicating my

days...

My current EN is different from the other flares I have had. This time I

started out with some abdominal stuff going on (diarrhea, vomiting, pain, etc.)

and as usual a fever... however, the abdominal stuff is gone but the fever is

still hanging on... I too get really hot at times - my legs burn (especially

the bumps). The bumps I have now... one is purplish and one is hot, big and

pink/red. I think I have a couple of new ones on the other leg... I totally

relate to your feelings Kim about not knowing what is going on. It is very

frustrating to me. I really don't like feeling sick and having all this junk

going on and to be told that I am a healthy person. I really don't feel very

healthy at all. I wish I was!!!

Thanks for the emails - they really help me!

Deb

Hi Kim,

I have those weird warm sensations. My EN is currently

not visible, but I still have pain when you touch my

legs and I feel the heat. Last night I was having

trouble sleeping because it was just too hot. The heat

seems to emanate from my knees to my upper thigh. It

is a very weird sensation.

I am idiopathic although the rheumatologist declares

it to be allergies to heaven only knows what. MY GP

disagrees with him. The dermatologist couldn't find a

cause either. The infectious disease specialist ruled

out all kinds of diseases as well.

My EN centers around my knees (above and below). I

have joint pain from arthritis as well which

complicates matters.

Terri

--- Kim Godlewski wrote:

>

> And he asked me to ask if anyone has ever

> experienced this....he is having

> these weird warm sensations that are located

> somewhere around his upper

> thigh? He says it's hard to describe where it

> is...inside his thigh. Then

> there was this pain that hit somewhere in his leg

> but not really in the same

> place. He says it's really hard to explain. But

> the main thing was this

> really odd warm sensation just centralized in one

> area.

>

> Thanks!

> Kim

[Guest guest]

Dear Deb,

I'm glad the abdominal symptoms have stopped. EN is sometimes

associated with Crohn's disease. Also, and I have not ever mentioned

this on this group, but there are other forms of panniculitis besides

EN (panniculitis = inflammation of the fat cells)that can affect the

abdominal area, and cause pain. This is far more serious than

straighforward EN, and really needs the attention of a doctor who

knows what he is doing. How to find such a doctor is another story. A

gastroenterologist might be the place to begin to rule out Crohn's if

the symptoms return.

Now don't panic. I'm giving you a " worse case scenerio " and maybe all

you had is the stomach flu. :-)That is how it goes in medicine.

Symptoms can point to something quite serious or to something totally

self limiting and benign. As they say " if symptoms persist, see your

doctor " . Since you DON'T feel healthy, that is your cue to keep

complaining to doctors. Dispite blood work etc, only YOU know what

healthy feels like.

Love,

[Guest guest]

Your talking about " Prednisone " Rebbcca? With what bit a of medical

knowledge I have, It is recommended, instruted by your local

pharmacist, and told to you by your Dr, to never just stop taking

it. In my case, my doses are real high, when it is time to decrease

I am ease off...it is by 3 > 5 mgs at first, if things are going

well...the does will go down by 6 > 10 mgs, and this is like every 3

> 5 days at a time. Even then it drives me nutz. I HATE the stuff

myself. The Drs are even scared to inform me when it is time to

begin Pred. again *lol*. I must Growl at them or something.

.........Medicine...Pain...Dr.s....bumps...more pain. I was good

friends w/a Dr. in Oklahoma and he ask me some deep and personal

questions. We had a good discussion but one matter I brought up to

him, telling him with treating a patient with all this to remember...

saying " This is all comsuming and after awhile the idenity gets lost

and Medical people and Family...friends begin to see you as The

Disease and forget YOU are in there " . Now how I got to that from

Prednisone....??? beats me....*lol*

<<================================================================>>

-- In erythema_nodosum_Group , " Strecker "

<rebeccastrecker@y...> wrote:

> Dear Kim,

>

> Just checking in before bed and noticed you post.

>

> Since EN can be a delayed allergic reaction, whatever is causing

the

> reaction is the thing to avoid. That is easier said than done. I

have

> never found what causes my EN.

>

> Except for Echinacea I have never heard of any specific herbs to

avoid.

>

> I am one of those who is using the TEDS stocking. I posted a photo

of

> me wearing it in my album under " " . I use it only on the

left

> leg that gets EN. They can be purchased at some drug stores.

Actually

> it is supposed to be an anti-embolism stocking, but I have found

it is

> better than a regular support stocking. They go up the thigh, but I

> roll mine down to just above the knee as my EN never goes that

high.

>

> I have never taken any diuretics so I can't answer that question.

>

> Read our Files and Links re Prednisone. Many on this group have

> experience with it, so you can compare notes there. How high a

dose is

> he taking? It is a very tricky drug to use. You can't just stop it

> when you feel better.

>

> I'm not really sure of the sensation your Hubby is describing.

Maybe

> it is a deep EN lump that is hot and getting ready to surface? My

EN

> does feel hot to the touch--like a fire burning under the skin.

> I have read that an old name for EN was " ST. 's Fire " . No

one

> calls it St. 's anymore--although it would be much easier to

> spell. :-)

>

> How long has this latest flare-up been going on? I do hope Hubby is

> able to get some bedrest or at least get those legs elevated as

much

> as he can.

>

> I hope this answers some of your questions, and the other group

> members can add their experiences.

>

> Have a Great Evening!

> Love,

>