Question for those with arthralgic pain and multiple EN flair-ups

[Guest guest]

I have a question for those who have had multiple flair ups of EN over the

years. I had a bad flair up back in 2006 and was more or less unable to work and

was in severe arthralgic pain. Just coming down the steps in the morning was

enough to put me in tears from the pain. Pain meds didn't really work, when I

walked I looked like a cross between a gorilla and a 90 yr. old woman and I was

only 45 yrs. old then. I had about 25 nodules covering my ankles legs and arms

at the elbows.

My question for those of you with multiple bouts of EN and who have had the

accompanying severe arthralgic pain with those bouts of EN is, have you ever had

the severe arthralgic pain appear without the nodules appearing first or ever at

all? I'm currently experiencing that level of arthralgic pain again as well as

the over all exhausted and only seeming to be able to achieve a twilight level

of sleep no REM sleep. And it's reminding me very much of that EN flair up in 06

with the exception of so far I do not have any nodules appearing.

Anyone else either had this happen or heard of such a thing?

CJ

[Guest guest]

Hello CJ,

I usually feel the pain before seeing the actual nodules. My nodules are usually

hidden under the skin (both legs underneath the knee) and hardly can be noticed.

I can feel them by pressing on the skin.

The first time I had an EN breakout was in 2003 when I was 22 years old, then

again in 2005. Unfortunately it was diagnosed wrongly in both times!

The major outbreak started in 2008 and lasted for a whole year. I was in pain

most of the time with swollen ankles that I couldn't walk, exercise nor live my

life regularly. I've seen around 11 doctors in 4 different countries during that

time to get an explanation to what I'm suffering from with no luck! until

finally a young doctor gave me the right diagnoses and confirmed it was EN. I've

been on potassium iodide for 3 months and that helped in reducing the symptoms.

Now I have sort of continuous outbreaks and nothing seems to help not even

cortisone so I'm just ignoring the nodules and the pain

I wish if I can just find out the real reason that triggers my EN.

Would really appreciate it if all of the group members share with us the major

triggers of their EN breakouts.

Regards,

Sadeem, 31

Qatar

Sent from my BlackBerry® smartphone from Vodafone

Question for those with arthralgic pain

and multiple EN flair-ups

 

I have a question for those who have had multiple flair ups of EN over the

years. I had a bad flair up back in 2006 and was more or less unable to work and

was in severe arthralgic pain. Just coming down the steps in the morning was

enough to put me in tears from the pain. Pain meds didn't really work, when I

walked I looked like a cross between a gorilla and a 90 yr. old woman and I was

only 45 yrs. old then. I had about 25 nodules covering my ankles legs and arms

at the elbows.

My question for those of you with multiple bouts of EN and who have had the

accompanying severe arthralgic pain with those bouts of EN is, have you ever had

the severe arthralgic pain appear without the nodules appearing first or ever at

all? I'm currently experiencing that level of arthralgic pain again as well as

the over all exhausted and only seeming to be able to achieve a twilight level

of sleep no REM sleep. And it's reminding me very much of that EN flair up in 06

with the exception of so far I do not have any nodules appearing.

Anyone else either had this happen or heard of such a thing?

CJ

[Guest guest]

I was just telling my daughter that how many times I have mentioned to my dr. the symptoms I have and that I believe it is EN. He looks at me like he thinks I am nuts. I live it I should know what it feels like. AND, we all seem to have the same feelings in our bodies as one another, yet the medical profession does not recognize them.I have noticed that I seem to get little pimples on my face when I am feeling it, yet not seeing it. I have heard this from a few others.Happy Cinco de Mayo!Debbie 5=7 EN ------------------------------------You can help Erythema Nodosum Research. Just go to http://www.goodsearch.com/ and under the I'm Supporting section enter Erythema Nodosum Research Fund. Every time you use Goodsearch to search, a penny will be donated to EN Research. NOW you can also GoodShop for Erythema Nodosum. All your favorites including Amazon.com will donate when you specify Erythema Nodosum as who you GoodShop for. So sign up today, and be sure to tell your friends,

family and co-workers. Let's find a cure for Erythema Nodosum!

[Guest guest]

I am in the middle of a outbreak now but to answer your question. Maybe two

months ago I had the pain in both wrist and ankles without the nodules. So its

possible.

>

> I have a question for those who have had multiple flair ups of EN over the

years. I had a bad flair up back in 2006 and was more or less unable to work and

was in severe arthralgic pain. Just coming down the steps in the morning was

enough to put me in tears from the pain. Pain meds didn't really work, when I

walked I looked like a cross between a gorilla and a 90 yr. old woman and I was

only 45 yrs. old then. I had about 25 nodules covering my ankles legs and arms

at the elbows.

> My question for those of you with multiple bouts of EN and who have had the

accompanying severe arthralgic pain with those bouts of EN is, have you ever had

the severe arthralgic pain appear without the nodules appearing first or ever at

all? I'm currently experiencing that level of arthralgic pain again as well as

the over all exhausted and only seeming to be able to achieve a twilight level

of sleep no REM sleep. And it's reminding me very much of that EN flair up in 06

with the exception of so far I do not have any nodules appearing.

> Anyone else either had this happen or heard of such a thing?

>

> CJ

>

[Guest guest]

I don't know for sure what my trigger was (probably stress and possibly eating

differently than I was used to (I had just started a new job when my EN occurred

) but for me going gluten free has completely eliminated my EN. I have not had

any other outbreaks nor issues since going gluten free.

If I ingest even a tiny bit of gluten, I had one foot that immediately tells me

the next day. I avoid it completely because I never want to go through EN again.

Chantelle

> Hello CJ,

>

> I usually feel the pain before seeing the actual nodules. My nodules are

usually hidden under the skin (both legs underneath the knee) and hardly can be

noticed. I can feel them by pressing on the skin.

>

> The first time I had an EN breakout was in 2003 when I was 22 years old, then

again in 2005. Unfortunately it was diagnosed wrongly in both times!

>

> The major outbreak started in 2008 and lasted for a whole year. I was in pain

most of the time with swollen ankles that I couldn't walk, exercise nor live my

life regularly. I've seen around 11 doctors in 4 different countries during that

time to get an explanation to what I'm suffering from with no luck! until

finally a young doctor gave me the right diagnoses and confirmed it was EN. I've

been on potassium iodide for 3 months and that helped in reducing the symptoms.

Now I have sort of continuous outbreaks and nothing seems to help not even

cortisone so I'm just ignoring the nodules and the pain

>

> I wish if I can just find out the real reason that triggers my EN.

>

>

> Would really appreciate it if all of the group members share with us the major

triggers of their EN breakouts.

>

>

> Regards,

> Sadeem, 31

> Qatar

>

> Sent from my BlackBerry® smartphone from Vodafone

>

> Question for those with arthralgic pain

> and multiple EN flair-ups

>

>

>

>

>

> I have a question for those who have had multiple flair ups of EN over the

years. I had a bad flair up back in 2006 and was more or less unable to work and

was in severe arthralgic pain. Just coming down the steps in the morning was

enough to put me in tears from the pain. Pain meds didn't really work, when I

walked I looked like a cross between a gorilla and a 90 yr. old woman and I was

only 45 yrs. old then. I had about 25 nodules covering my ankles legs and arms

at the elbows.

> My question for those of you with multiple bouts of EN and who have had the

accompanying severe arthralgic pain with those bouts of EN is, have you ever had

the severe arthralgic pain appear without the nodules appearing first or ever at

all? I'm currently experiencing that level of arthralgic pain again as well as

the over all exhausted and only seeming to be able to achieve a twilight level

of sleep no REM sleep. And it's reminding me very much of that EN flair up in 06

with the exception of so far I do not have any nodules appearing.

> Anyone else either had this happen or heard of such a thing?

>

> CJ

>

>

>

>

>

> ------------------------------------

>

> You can help Erythema Nodosum Research. Just go to

> http://www.goodsearch.com/

> and under the I'm Supporting section enter Erythema Nodosum Research Fund.

Every time you use Goodsearch to search, a penny will be donated to EN Research.

> NOW you can also GoodShop for Erythema Nodosum. All your favorites including

Amazon.com will donate when you specify Erythema Nodosum as who you GoodShop

for. So sign up today, and be sure to tell your friends, family and co-workers.

Let's find a cure for Erythema Nodosum!

>

>

>

[Guest guest]

I forgot to say that this was the case for me too. I started having trouble walking (pain) and using my hands before I got the welts and nodules all over. NOt knowing what it was at first it looked like I had mosquito bites all over my legs. Then I ended up with nodules (big) on my wrists and elbows, as well as my ankles and legs and knees.Chantelle

I am in the middle of a outbreak now but to answer your question. Maybe two months ago I had the pain in both wrist and ankles without the nodules. So its possible.

>

> I have a question for those who have had multiple flair ups of EN over the years. I had a bad flair up back in 2006 and was more or less unable to work and was in severe arthralgic pain. Just coming down the steps in the morning was enough to put me in tears from the pain. Pain meds didn't really work, when I walked I looked like a cross between a gorilla and a 90 yr. old woman and I was only 45 yrs. old then. I had about 25 nodules covering my ankles legs and arms at the elbows.

> My question for those of you with multiple bouts of EN and who have had the accompanying severe arthralgic pain with those bouts of EN is, have you ever had the severe arthralgic pain appear without the nodules appearing first or ever at all? I'm currently experiencing that level of arthralgic pain again as well as the over all exhausted and only seeming to be able to achieve a twilight level of sleep no REM sleep. And it's reminding me very much of that EN flair up in 06 with the exception of so far I do not have any nodules appearing.

> Anyone else either had this happen or heard of such a thing?

>

> CJ

>