pain

[Guest guest]

Cherie,

I feel so much for you, I too had to work, felt I had no choice and I would sit

and want to cry. The pain got so bad eventually I could not help but break down

at work frequently and I was in fear of losing my job which was a real

possibility and could not imagine trying to find another job in the condition I

was in, no one would of hired me.

Without going into what I had to endure at length, I want to encourage you to

start thinking ahead to other possibilities. I waited almost too long and

thought I had no other choice but to work and endure the pain. Even if I had

access to pain medication at the time, I would not be allowed to work while

taking it due to the type of job I had. The pain got worse and I faced losing my

job, homelessness was staring me in the face and it snowballed till I was close

to suicide from pain and hopelessness.

Things may not go that far for you, and I pray it wont, but if your starting to

look down that road, start considering your options before you reach that point.

Do you have disability insurance from your employment? Can you save and pay

ahead on your rent or mortgage, I know thats not even an option for some of us.

I did a search on the Internet and found agencies in my local area that could

offer assistance. There are ways to make it, its not easy, but there are ways.

If there is anything I can do to help, give you ideas on ways to get help or

just be an ear to hear your pain and frustration, please feel free to contact

me. Our situation may not be exactly the same, but I know that feelings you

have knowing you have to work and being in so much pain....I was sole support of

my family my entire adult life and we lived from paycheck to paycheck. My

illness was a disaster.

I wish I could give you big gentle hugs but all I can give you is understanding.

I'm not really sure if my email is included or allowed in this group, but if you

do want to talk, I will look for a message from you and send you my email..lf it

is included, feel free to contact me.

I will be in the wings if you need me. I borrowed something I saw someone else

quote once because of its beauty.

" I believe that friends are quiet angels who lift us to our feet when our wings

have trouble remembering how to fly. "

I am no angel, but I can be strong when needed.

In my pain, let me share a gift shared with me, The Spoon Theory

http://www.butyoudontlooksick.com/spoons.htm

[Guest guest]

Cherie,

I feel so much for you, I too had to work, felt I had no choice and I would sit

and want to cry. The pain got so bad eventually I could not help but break down

at work frequently and I was in fear of losing my job which was a real

possibility and could not imagine trying to find another job in the condition I

was in, no one would of hired me.

Without going into what I had to endure at length, I want to encourage you to

start thinking ahead to other possibilities. I waited almost too long and

thought I had no other choice but to work and endure the pain. Even if I had

access to pain medication at the time, I would not be allowed to work while

taking it due to the type of job I had. The pain got worse and I faced losing my

job, homelessness was staring me in the face and it snowballed till I was close

to suicide from pain and hopelessness.

Things may not go that far for you, and I pray it wont, but if your starting to

look down that road, start considering your options before you reach that point.

Do you have disability insurance from your employment? Can you save and pay

ahead on your rent or mortgage, I know thats not even an option for some of us.

I did a search on the Internet and found agencies in my local area that could

offer assistance. There are ways to make it, its not easy, but there are ways.

If there is anything I can do to help, give you ideas on ways to get help or

just be an ear to hear your pain and frustration, please feel free to contact

me. Our situation may not be exactly the same, but I know that feelings you

have knowing you have to work and being in so much pain....I was sole support of

my family my entire adult life and we lived from paycheck to paycheck. My

illness was a disaster.

I wish I could give you big gentle hugs but all I can give you is understanding.

I'm not really sure if my email is included or allowed in this group, but if you

do want to talk, I will look for a message from you and send you my email..lf it

is included, feel free to contact me.

I will be in the wings if you need me. I borrowed something I saw someone else

quote once because of its beauty.

" I believe that friends are quiet angels who lift us to our feet when our wings

have trouble remembering how to fly. "

I am no angel, but I can be strong when needed.

In my pain, let me share a gift shared with me, The Spoon Theory

http://www.butyoudontlooksick.com/spoons.htm

[Guest guest]

hi everyone .ive been terrible sick.the pain i thought was back pain is

kidney bladder and bowel pain.i had a blockage.ouch too much pain medicine i

guess.im still not walking good and the bowels are semi locked now.of

course i was not sick enough to stay in the hospital.because other hospitals

will

not trest my pain cause i go to the pain clinic.ive suffered way beyond

suffering.fortunally i have 2 good medical cards.what a shame we have no speek

in

oour treatment.when i get well im going to loby or do anything for our

right/hugs cece

[Guest guest]

hi everyone .ive been terrible sick.the pain i thought was back pain is

kidney bladder and bowel pain.i had a blockage.ouch too much pain medicine i

guess.im still not walking good and the bowels are semi locked now.of

course i was not sick enough to stay in the hospital.because other hospitals

will

not trest my pain cause i go to the pain clinic.ive suffered way beyond

suffering.fortunally i have 2 good medical cards.what a shame we have no speek

in

oour treatment.when i get well im going to loby or do anything for our

right/hugs cece

[Guest guest]

Shanna,

The EN I experienced was horrible, I wouldn't wish it on my worst enemy. I've gone thru natural childbirth and I wish that for everyone...so that should tell you how bad EN is. I still have arthritis that makes me not even want to walk or move. During my major EN flareup (my first one), My joints throbbed as if I were having constant growing pains/cramps. I didn't even want to get in and out of bed, roll over, or have the sheets touch my skin. On top of all the pain, I was so physically drained. At times I felt better and I'd want to run errands or just go out on a date with my husband and yet, I would always come home ten times more exhausted and my legs would be swollen, etc. When the EN started to fade, I was still in pain. I had the same symptoms, just not as many nodules. One day, I'd feel pretty good. The next, I'd have a major headache, my legs would feel like someone was poking them with hot pokers and then the next day, I'd wake up with a nodule. So that's two days of pain before any outward sign appeared. One of the things I talked about a lot was feeling like no one believed me because there wasn't an outward sign, but I was still in pain. I can't imagine how your 8 year old feels...just wanting to play and being sick and in pain. My heart breaks for her. I'd die if one of my kids had it....it's HORRIBLE!!! I pray that she feels better soon.

I am a mother of 5 children. I know how it feels to have a child who is sick or "was" sick and uses their illness to get out of things. My son had heart surgery and still sometimes tells me his ribs hurt. I imagine they do, so I give him some love, maybe some medication and tell him he needs to rest. I've never experienced what he did and so I feel a tug at my heart and I want him to take it easy, but then I also don't want him to feel like he can use his surgery as an excuse to stay home from school because he wouldn't go to bed when he was supposed to and is now too tired to get up. KWIM? It's a hard one, being a mom and a nurse. Sometimes nurses are tough...they get us out of bed the day after we have a c/section so that we can move around and get things working again. Meanies!!! Then again, EN is supposed to be treated with bedrest and while we are supposed to rest after a surgery, we also need to work our muscles to get our body back into shape. EN will be worse if she tries too hard.

Do remember though, and I'm sure you've experienced it as well, that sometimes when we feel good during the day, we may just push ourselves too much and then at night we feel HORRIBLE!!! You know...the 24 hour flu...it comes back to haunt us that 3rd day if we don't take it easy, right? Your daughter is a small child, she wants to play, she doesn't understand why she is hurting so much. Tell her you want her to always be honest with you about how she feels. Use the hospital pain scale (1-10). It worked very well with my son after surgery. You can usually judge by their behaviour and facial tension just how high the numbers are and pretty soon you'll even be able to tell if she is fibbing a little bit. Here is a link to the smiley face pain scale:

http://www.carolinashospital.com/ref_library/images/pain_chart.gif

Another thing you can do is give out positive rewards for certain things you want done. Take a couple sheets of paper, cut squares about 3x3. Make a stack for the week and each day pick a few specific things you would like her to do, write them down and hand them to her. Maybe one would be to clean the TV and entertainment center glass doors. (don't make her climb....like for bathroom mirrors....if she hits her legs on the counter it will hurt bad) If she does this then she gets an extra special thing. Try to use positive encouragement to get her moving if she can, but don't push her. It's her choice.

I hope this helps you in some way. God bless you and your daughter. Patience is key...as with any support person. I am so proud of my husband with how he has taken care of me these past 5 months. He's humbled me so much...because I don't think I could have handled him getting sick like me.

Lorri

[Guest guest]

Shanna,

The EN I experienced was horrible, I wouldn't wish it on my worst enemy. I've gone thru natural childbirth and I wish that for everyone...so that should tell you how bad EN is. I still have arthritis that makes me not even want to walk or move. During my major EN flareup (my first one), My joints throbbed as if I were having constant growing pains/cramps. I didn't even want to get in and out of bed, roll over, or have the sheets touch my skin. On top of all the pain, I was so physically drained. At times I felt better and I'd want to run errands or just go out on a date with my husband and yet, I would always come home ten times more exhausted and my legs would be swollen, etc. When the EN started to fade, I was still in pain. I had the same symptoms, just not as many nodules. One day, I'd feel pretty good. The next, I'd have a major headache, my legs would feel like someone was poking them with hot pokers and then the next day, I'd wake up with a nodule. So that's two days of pain before any outward sign appeared. One of the things I talked about a lot was feeling like no one believed me because there wasn't an outward sign, but I was still in pain. I can't imagine how your 8 year old feels...just wanting to play and being sick and in pain. My heart breaks for her. I'd die if one of my kids had it....it's HORRIBLE!!! I pray that she feels better soon.

I am a mother of 5 children. I know how it feels to have a child who is sick or "was" sick and uses their illness to get out of things. My son had heart surgery and still sometimes tells me his ribs hurt. I imagine they do, so I give him some love, maybe some medication and tell him he needs to rest. I've never experienced what he did and so I feel a tug at my heart and I want him to take it easy, but then I also don't want him to feel like he can use his surgery as an excuse to stay home from school because he wouldn't go to bed when he was supposed to and is now too tired to get up. KWIM? It's a hard one, being a mom and a nurse. Sometimes nurses are tough...they get us out of bed the day after we have a c/section so that we can move around and get things working again. Meanies!!! Then again, EN is supposed to be treated with bedrest and while we are supposed to rest after a surgery, we also need to work our muscles to get our body back into shape. EN will be worse if she tries too hard.

Do remember though, and I'm sure you've experienced it as well, that sometimes when we feel good during the day, we may just push ourselves too much and then at night we feel HORRIBLE!!! You know...the 24 hour flu...it comes back to haunt us that 3rd day if we don't take it easy, right? Your daughter is a small child, she wants to play, she doesn't understand why she is hurting so much. Tell her you want her to always be honest with you about how she feels. Use the hospital pain scale (1-10). It worked very well with my son after surgery. You can usually judge by their behaviour and facial tension just how high the numbers are and pretty soon you'll even be able to tell if she is fibbing a little bit. Here is a link to the smiley face pain scale:

http://www.carolinashospital.com/ref_library/images/pain_chart.gif

Another thing you can do is give out positive rewards for certain things you want done. Take a couple sheets of paper, cut squares about 3x3. Make a stack for the week and each day pick a few specific things you would like her to do, write them down and hand them to her. Maybe one would be to clean the TV and entertainment center glass doors. (don't make her climb....like for bathroom mirrors....if she hits her legs on the counter it will hurt bad) If she does this then she gets an extra special thing. Try to use positive encouragement to get her moving if she can, but don't push her. It's her choice.

I hope this helps you in some way. God bless you and your daughter. Patience is key...as with any support person. I am so proud of my husband with how he has taken care of me these past 5 months. He's humbled me so much...because I don't think I could have handled him getting sick like me.

Lorri

[Guest guest]

Shanna,

The EN I experienced was horrible, I wouldn't wish it on my worst enemy. I've gone thru natural childbirth and I wish that for everyone...so that should tell you how bad EN is. I still have arthritis that makes me not even want to walk or move. During my major EN flareup (my first one), My joints throbbed as if I were having constant growing pains/cramps. I didn't even want to get in and out of bed, roll over, or have the sheets touch my skin. On top of all the pain, I was so physically drained. At times I felt better and I'd want to run errands or just go out on a date with my husband and yet, I would always come home ten times more exhausted and my legs would be swollen, etc. When the EN started to fade, I was still in pain. I had the same symptoms, just not as many nodules. One day, I'd feel pretty good. The next, I'd have a major headache, my legs would feel like someone was poking them with hot pokers and then the next day, I'd wake up with a nodule. So that's two days of pain before any outward sign appeared. One of the things I talked about a lot was feeling like no one believed me because there wasn't an outward sign, but I was still in pain. I can't imagine how your 8 year old feels...just wanting to play and being sick and in pain. My heart breaks for her. I'd die if one of my kids had it....it's HORRIBLE!!! I pray that she feels better soon.

I am a mother of 5 children. I know how it feels to have a child who is sick or "was" sick and uses their illness to get out of things. My son had heart surgery and still sometimes tells me his ribs hurt. I imagine they do, so I give him some love, maybe some medication and tell him he needs to rest. I've never experienced what he did and so I feel a tug at my heart and I want him to take it easy, but then I also don't want him to feel like he can use his surgery as an excuse to stay home from school because he wouldn't go to bed when he was supposed to and is now too tired to get up. KWIM? It's a hard one, being a mom and a nurse. Sometimes nurses are tough...they get us out of bed the day after we have a c/section so that we can move around and get things working again. Meanies!!! Then again, EN is supposed to be treated with bedrest and while we are supposed to rest after a surgery, we also need to work our muscles to get our body back into shape. EN will be worse if she tries too hard.

Do remember though, and I'm sure you've experienced it as well, that sometimes when we feel good during the day, we may just push ourselves too much and then at night we feel HORRIBLE!!! You know...the 24 hour flu...it comes back to haunt us that 3rd day if we don't take it easy, right? Your daughter is a small child, she wants to play, she doesn't understand why she is hurting so much. Tell her you want her to always be honest with you about how she feels. Use the hospital pain scale (1-10). It worked very well with my son after surgery. You can usually judge by their behaviour and facial tension just how high the numbers are and pretty soon you'll even be able to tell if she is fibbing a little bit. Here is a link to the smiley face pain scale:

http://www.carolinashospital.com/ref_library/images/pain_chart.gif

Another thing you can do is give out positive rewards for certain things you want done. Take a couple sheets of paper, cut squares about 3x3. Make a stack for the week and each day pick a few specific things you would like her to do, write them down and hand them to her. Maybe one would be to clean the TV and entertainment center glass doors. (don't make her climb....like for bathroom mirrors....if she hits her legs on the counter it will hurt bad) If she does this then she gets an extra special thing. Try to use positive encouragement to get her moving if she can, but don't push her. It's her choice.

I hope this helps you in some way. God bless you and your daughter. Patience is key...as with any support person. I am so proud of my husband with how he has taken care of me these past 5 months. He's humbled me so much...because I don't think I could have handled him getting sick like me.

Lorri

[Guest guest]

Hi all, Well since it is my daughter who has the Sarcoid and En I have

questions. I hope more than one of you will respond so that I have a

wider opinion base. I think sometimes my daughter (shes 8) uses her leg

pain to get out of doing things she doesn't want to do. So I guess what

i want to know is how painful is EN? I mean on a scale of 1-10 ( one

being good 10 being bad) So how bad is your flare ups?? Say on

a " light " flare up is is tolerable?? She is still currently having

flareups weekly. Some days its worse than others and I can alwys tell

by checking out her legs if she is having one or if shes not, but if

she is having a slight flare up is it really painful for all of you or

is it moderatly. I don't want her to have to do too much if she really

is in pain but I don't want her to use it to not put the dishes away or

go to school if it is something she can live with. I realize that

everyone is different but maybe if I can get a median answer than I can

know what to do better. Thanks for all of your info support and help

Shanna

[Guest guest]

Hello shanna EN in my experience is painfull wether it is a mild flare up or a bad one it does depend on the indervidual. I have had bad flare ups where I unable to walk but this is mainly due to the amount of lumps and the swelling, If I have a mild flare up it is still painfull but the more I do the worse the en gets I do tend to rest as much as possible and put my feet up and sometimes I am that washed out I need to go to bed, and taking into account your daughter is only young and used to being very active I should imagine it will limit her to what she can do. When I have a flare up anything involving standing up and walking is painfull even putting clothes near the lumps hurts, I dont think your daughter is making excuses not to do things it could be that she feels exhausted as that is one of the symptoms of en, If my daughter had en I think I would get her to rest as much as possible as I have found that it does go quicker with me if I rest and put my feet

up, as for school if she is missing quite a bit you could always ask her teacher for work she could do at home so she does not fall behind at least she can do that with her feet up. I have suffered with en for almost 18years and know how painfull it can be and I really do feel for your daughter as at her age it cannot be nice at all, I have come to learn to live with it I had it when I was just gone 21 and am now 39 and am still suffering with it, I hope your daughter gets some relief soon from this condition and will be able to get back to school, thinking of you shannayoung_2000 wrote: Hi all, Well since it is my daughter who has the Sarcoid and En I have questions. I hope more than one of you will respond so that I have a wider opinion base. I think sometimes my daughter (shes 8) uses her leg pain to

get out of doing things she doesn't want to do. So I guess what i want to know is how painful is EN? I mean on a scale of 1-10 ( one being good 10 being bad) So how bad is your flare ups?? Say on a "light " flare up is is tolerable?? She is still currently having flareups weekly. Some days its worse than others and I can alwys tell by checking out her legs if she is having one or if shes not, but if she is having a slight flare up is it really painful for all of you or is it moderatly. I don't want her to have to do too much if she really is in pain but I don't want her to use it to not put the dishes away or go to school if it is something she can live with. I realize that everyone is different but maybe if I can get a median answer than I can know what to do better. Thanks for all of your info support and help Shanna

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[Guest guest]

Hi Shanna

<<I think sometimes my daughter (she's 8) uses her leg pain to get out

of doing things she doesn't want to do.>>

I've had idiopathic EN for 37 yrs. Started at age 21. I agree 100%

with 's description. Any standing or walking puts extra pressure

on the painful swollen legs. I've had times when I was in too much

pain to put my legs down off the bed. I had to bring them back up

fast. Besides the EN, your dtr. has sarcoidosis. That adds to the

problem. It can effect any organ, but mostly the lungs. If your dtr.

says she's in pain, Believe it! In my opinion, EN is something we " can

live with " only because we have no choice in the matter.

I hope your little girl feels much better soon.

Love,

[Guest guest]

Hey Shanna,

Having had EN and new lumps growing for over a year non-stop . . . I

would just die if one of my kids had it.

Imagine, if you will, someone taking a fireplace poker, one of those

heavy iron ones, and letting it fall point down onto the back of

your lower leg from about 5 feet above it, or more. I imagine the

front of the leg would be worse. This is what a single lump feels

like. A really bad bruise; a really, REALLY bad bruise. With that

in mind, imagine a cat rubbing up against that brand new

bruise . . . ouch! So . . . just the rub of a pair of trousers, or

a blanket . . . it really hurts. Also, please keep in mind . . .

with each single lump comes a 3-7 day-long feeling of malaise . . .

meaning, a feverish feeling, achey all over, very tired . . . you

must know what having a fever feels like. Imagine feeling that way,

but not having the actual fever, although a lot of us do have the

fever. With all of that, there is also stomac upset . . . just

really makes for a very lousy feeling ALWAYS.

I have kids . . . believe me, I know all the tricks =) But with EN,

and if your daughter was diagnosed as having it? Keep her in bed

and get some tutors . . . we wouldn't want her to have this all her

life . . . she needs a total recovery, which requires immense

amounts of rest. I've done the drugs, I've done the rest . . .

unfortunately, I'm idiopathic . . . none of that will help me . . .

but your daughter is young and can only benefit from what we've all

researched and learned on our own.

Hope that helps! Wishing your daughter some pain free days ahead,

very soon!

M

>

> Hi all, Well since it is my daughter who has the Sarcoid and En I

have

> questions. I hope more than one of you will respond so that I have

a

> wider opinion base. I think sometimes my daughter (shes 8) uses

her leg

> pain to get out of doing things she doesn't want to do. So I guess

what

> i want to know is how painful is EN? I mean on a scale of 1-10 (

one

> being good 10 being bad) So how bad is your flare ups?? Say on

> a " light " flare up is is tolerable?? She is still currently

having

> flareups weekly. Some days its worse than others and I can alwys

tell

> by checking out her legs if she is having one or if shes not, but

if

> she is having a slight flare up is it really painful for all of

you or

> is it moderatly. I don't want her to have to do too much if she

really

> is in pain but I don't want her to use it to not put the dishes

away or

> go to school if it is something she can live with. I realize that

> everyone is different but maybe if I can get a median answer than

I can

> know what to do better. Thanks for all of your info support and

help

> Shanna

>

[Guest guest]

Hi Shanna - I'm late to respond here but have read the other posts and pretty much have to agree - EN can be extremely painful.

just to sit there it would be achy, hot, and itchy like a bee bite - but then sporadically i would get (what i called) electric shock type pains. Yup - a fire poker is also a good analogy here.

And forget getting bumped or kicked - OMG - the one on my right leg was the exact height of the open dishwasher door and so i hit it a few times - I'd see stars - i was pretty much doubled over.

my left leg was much worse as it hurt all the time, it was more swollen and i still can't wear sneakers (since mid November) because the tongue hits my shin at the spot that's the worst.

i also had the feeling that rebecca described about getting out of bed - some mornings it took almost 2 hours to calm down from the shock of standing up after being elevated all night. however - i also had an infection in my knee so i can't say my case was *normal* but i have 2 small children so i had to get up a few hours earlier to give my leg time to calm down before getting them up. i wouldn't wish this on anyone!

maybe you could give your daughter a vacation from night time chores for a while - after a whole day of being an 8 year old i'm sure she's pretty worn out by then. as others have said - i too would push myself during the day - feeling almost up to it - and do things i shouldn't - only to pay the price at the end of the day. many nights my husband did the dishes while i had my feet up because by the end of the day the pain was too much to still be on my feet.

if in fact it turns out that she has to deal with this for a while let her first deal with it - then deal with everything else.

good luck - give her lots of hugs - tell her it will all turn out alright - and let her know that no matter what all you ask is for her to be honest with you and with herself - if she or you push too hard and she doesn't get enough rest it's only going to take longer to get better - rebecca told me that in a post here just after i joined - i took her advice (since she knows her stuff) and am almost better (thanks rebecca!)

~

[Guest guest]

Hi Shanna - I'm late to respond here but have read the other posts and pretty much have to agree - EN can be extremely painful.

just to sit there it would be achy, hot, and itchy like a bee bite - but then sporadically i would get (what i called) electric shock type pains. Yup - a fire poker is also a good analogy here.

And forget getting bumped or kicked - OMG - the one on my right leg was the exact height of the open dishwasher door and so i hit it a few times - I'd see stars - i was pretty much doubled over.

my left leg was much worse as it hurt all the time, it was more swollen and i still can't wear sneakers (since mid November) because the tongue hits my shin at the spot that's the worst.

i also had the feeling that rebecca described about getting out of bed - some mornings it took almost 2 hours to calm down from the shock of standing up after being elevated all night. however - i also had an infection in my knee so i can't say my case was *normal* but i have 2 small children so i had to get up a few hours earlier to give my leg time to calm down before getting them up. i wouldn't wish this on anyone!

maybe you could give your daughter a vacation from night time chores for a while - after a whole day of being an 8 year old i'm sure she's pretty worn out by then. as others have said - i too would push myself during the day - feeling almost up to it - and do things i shouldn't - only to pay the price at the end of the day. many nights my husband did the dishes while i had my feet up because by the end of the day the pain was too much to still be on my feet.

if in fact it turns out that she has to deal with this for a while let her first deal with it - then deal with everything else.

good luck - give her lots of hugs - tell her it will all turn out alright - and let her know that no matter what all you ask is for her to be honest with you and with herself - if she or you push too hard and she doesn't get enough rest it's only going to take longer to get better - rebecca told me that in a post here just after i joined - i took her advice (since she knows her stuff) and am almost better (thanks rebecca!)

~

[Guest guest]

Hi Shanna - I'm late to respond here but have read the other posts and pretty much have to agree - EN can be extremely painful.

just to sit there it would be achy, hot, and itchy like a bee bite - but then sporadically i would get (what i called) electric shock type pains. Yup - a fire poker is also a good analogy here.

And forget getting bumped or kicked - OMG - the one on my right leg was the exact height of the open dishwasher door and so i hit it a few times - I'd see stars - i was pretty much doubled over.

my left leg was much worse as it hurt all the time, it was more swollen and i still can't wear sneakers (since mid November) because the tongue hits my shin at the spot that's the worst.

i also had the feeling that rebecca described about getting out of bed - some mornings it took almost 2 hours to calm down from the shock of standing up after being elevated all night. however - i also had an infection in my knee so i can't say my case was *normal* but i have 2 small children so i had to get up a few hours earlier to give my leg time to calm down before getting them up. i wouldn't wish this on anyone!

maybe you could give your daughter a vacation from night time chores for a while - after a whole day of being an 8 year old i'm sure she's pretty worn out by then. as others have said - i too would push myself during the day - feeling almost up to it - and do things i shouldn't - only to pay the price at the end of the day. many nights my husband did the dishes while i had my feet up because by the end of the day the pain was too much to still be on my feet.

if in fact it turns out that she has to deal with this for a while let her first deal with it - then deal with everything else.

good luck - give her lots of hugs - tell her it will all turn out alright - and let her know that no matter what all you ask is for her to be honest with you and with herself - if she or you push too hard and she doesn't get enough rest it's only going to take longer to get better - rebecca told me that in a post here just after i joined - i took her advice (since she knows her stuff) and am almost better (thanks rebecca!)

~

[Guest guest]

Hi Shanya,

Every person has a different sensation to the pain of both

Sarcoidosis and EN. One of the researcher's I am working with is

attempting to do a study of how lymphatic pressure on nerves could

cause pain, muscle spasms, muscle cramps, and even lung and heart

problems. Additionally, he was looking to see if it could also

constrict blood vessels to determine if some of the problems,

especially in legs and arms, was due to circulation being restricted

by Sarc in lymphatic tissue.

Unfortunately, he has hit a slight snag in his research. The snag is

that no test for deep tissue lymphatic pressure exists other than

surgery. Now, since most Sarc patients have lung problems, we are

somewhat reluctant to go into full anesthetic surgery.

But, in answer to your question, YES, Sarc patients can feel pain

from the disease. Is the pain real, reflected, ????? Nobody knows.

Do the Drs. know what causes the pain? NO. Do the Drs. even admit

that Sarc patients have pain? Not most.

So, can your daughter truly be feeling pain from EN and Sarc? Very

DEFINATELY YES. Can the pain be so bad that you can not even move?

YES. Can someone else measure the pain? NO. Can you fake the

pain? Depends on how bad the pain really is. I can not fake the

shoulder pain I experience. Sometimes it is so bad that I can not

even allow my arm to hang under pressure. I have to actually support

my arm and remove all pressure from the shoulder joint.

Can't positively answer whether your daughter is faking it to get out

of work. However, I can verify that Sarc induced pain can be 9-10 on

a scale of 10.

Wayne

[Guest guest]

Hi Shanya,

Every person has a different sensation to the pain of both

Sarcoidosis and EN. One of the researcher's I am working with is

attempting to do a study of how lymphatic pressure on nerves could

cause pain, muscle spasms, muscle cramps, and even lung and heart

problems. Additionally, he was looking to see if it could also

constrict blood vessels to determine if some of the problems,

especially in legs and arms, was due to circulation being restricted

by Sarc in lymphatic tissue.

Unfortunately, he has hit a slight snag in his research. The snag is

that no test for deep tissue lymphatic pressure exists other than

surgery. Now, since most Sarc patients have lung problems, we are

somewhat reluctant to go into full anesthetic surgery.

But, in answer to your question, YES, Sarc patients can feel pain

from the disease. Is the pain real, reflected, ????? Nobody knows.

Do the Drs. know what causes the pain? NO. Do the Drs. even admit

that Sarc patients have pain? Not most.

So, can your daughter truly be feeling pain from EN and Sarc? Very

DEFINATELY YES. Can the pain be so bad that you can not even move?

YES. Can someone else measure the pain? NO. Can you fake the

pain? Depends on how bad the pain really is. I can not fake the

shoulder pain I experience. Sometimes it is so bad that I can not

even allow my arm to hang under pressure. I have to actually support

my arm and remove all pressure from the shoulder joint.

Can't positively answer whether your daughter is faking it to get out

of work. However, I can verify that Sarc induced pain can be 9-10 on

a scale of 10.

Wayne

[Guest guest]

Hi Shanya,

Every person has a different sensation to the pain of both

Sarcoidosis and EN. One of the researcher's I am working with is

attempting to do a study of how lymphatic pressure on nerves could

cause pain, muscle spasms, muscle cramps, and even lung and heart

problems. Additionally, he was looking to see if it could also

constrict blood vessels to determine if some of the problems,

especially in legs and arms, was due to circulation being restricted

by Sarc in lymphatic tissue.

Unfortunately, he has hit a slight snag in his research. The snag is

that no test for deep tissue lymphatic pressure exists other than

surgery. Now, since most Sarc patients have lung problems, we are

somewhat reluctant to go into full anesthetic surgery.

But, in answer to your question, YES, Sarc patients can feel pain

from the disease. Is the pain real, reflected, ????? Nobody knows.

Do the Drs. know what causes the pain? NO. Do the Drs. even admit

that Sarc patients have pain? Not most.

So, can your daughter truly be feeling pain from EN and Sarc? Very

DEFINATELY YES. Can the pain be so bad that you can not even move?

YES. Can someone else measure the pain? NO. Can you fake the

pain? Depends on how bad the pain really is. I can not fake the

shoulder pain I experience. Sometimes it is so bad that I can not

even allow my arm to hang under pressure. I have to actually support

my arm and remove all pressure from the shoulder joint.

Can't positively answer whether your daughter is faking it to get out

of work. However, I can verify that Sarc induced pain can be 9-10 on

a scale of 10.

Wayne