Re: Bedrest

[Guest guest]

I think the MD has to understand that exersise can't be tolerated

some days. Over the past 7 years I have gone from very active to the

point where I can't tolerate golf any longer. My MD understands I

cannot exersise as much as I would like.Since this is chronic for me I

do try to do something everyday. I have a streching routine I follow

each AM. I have started to do exersise in a pool. I can move all the

joints and get my heart and lungs going without having to put weight

on my feet/legs. Were I swim there is a hot spa too,and I treat myself

to a soak after swimming.

Bill

[Guest guest]

When you all talk about " bedrest " what

do you mean? I've been lying around

most of the day and trying to stay

off my feet, sleeping at least 8 hours

a night, and taking a nap if I need it.

I'm avoiding shopping, anything that

involves a lot of walking on unfriendly

surfaces. I still go to church and

a Bible Study once a week. Also

chemo for my Wegener's Granulomatosis,

every other week and various and sundry

doctors appointments--that's about the

extent of my social life.

I'm retired, so I'm able to do this.

Is this what others do when they

are on " bedrest? "

Thanks--Joan T.

[Guest guest]

Dear Joan,

I think we all stretch the definition of bedrest to include lounging

on the sofa and staying off our feet as much as we can. However, the

true defintion of bedrest means to stay in bed, sleeping much of the

time, and getting up only to visit the bathroom. Leg elevaton with the

legs above the heart level helps with edema.

Our very first file on the Group site is " cured Members " and the first

one is who attributes his remission to bedrest:

*********

McCulloch

I only had it once when I was 11, & it cleared up after 6 weeks

bedrest & some medication. I suspect stress was a factor.Total

bedrest solved it

for me after about 5 or 6 weeks,but any activity at all causes

flare-ups . I do not know what medication was used,but I will

find out for this site. The way it felt was:A kind of throbbing

centred around the swelling,very sore shins.Especially if you

do any activity that involves moving your legs. The way it

looked was:Raised red sore circles,that were like bruises. Very

much like the photos I've seen on the internet of other people

who have/still have it.

Again, Complete bedrest plus whatever medication I was given

cured it,but I feel personally the bedrest was the thing that

cured it.I feel strongly that it was due to stress,or depression

and stress,but I cannot prove it of course.I definitely didn't

have any of the other causes of it that are listed,and I was male

but also I was a child of 11,so I can't think of anything else that

could've been the cause.At the time I was having a very bad

time at home, and I was being physically abused, so I

think this is what started it. I'd be interested to hear from

anyone with similar circumstances,because all of the people

I've come across have different case stories.

*********

It is possible that initial bedrest is the key to keeping EN from

becoming chronic. So it is great that newly diagnosed members at least

be made aware of the potential good from bedrest.

I might add that while I suffered both physical and verbal abuse as a

child, at the time of my first EN outbreak I was only under the sress

of verbal abuse. My EN seems to be stress sensitive.

Love,

[Guest guest]

Thanks, , that helps. I notice

that I make gradual improvement when I

rest.

I have a very " productive " cough. I don't

know if it's the WG or the EN. My feeling

is that my WG coughing was getting better,

then I got EN and a new cough. Does anyone

else have a productive cough with their EN?

Also, my oncologist has doubts about my

EN diagnosis, although she agrees that I

have inflammation on my right leg and doesn't

have any other suggestions about what it

could be. Has anyone else had an EN flare

while being on treatment (in my case cytoxan

and prednisone--15/20 mg, alternating days) for

an underlying disease?

Finally, my knee joint, just above the area

of inflammation, is tender, aches when I

walk, and is weak. Has anyone else noticed

that?

Thanks so much. Joan

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> Date: 2005/07/17 Sun PM 01:59:44 EDT

> To: erythema_nodosum_Group

> Subject: Re: bedrest

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