Question for those with EN

[Guest guest]

Jewells,

Yes I have been there before, a number of times, just not as bad as my first time, or maybe my first time was in 2006 with no lumps. I had the tiredness and the leg swelling while in Disneyland. Then 4 months later, or less, not sure of the time frame. Any ways, I became extremely tired. Not quite sure when the lumps began. First ones were on legs, thought my dog had hit into me, which she does, but not until they showed up on my arms, then I went to doctor. So I may of had this in 10-06, but dxd in 5-07. Right now a very painful one in right elbow, hurts like the Dickens.

Good luck and hope you feel better soon!

Debbie en 5-7

My last episode with EN was two years ago, it was awful, 22 lumpseverywhere imaginable. Incredible joint pain, fevers, extreme fatiguethe whole 9 yards. I tried Acupuncture since nothing else was workingand acupuncture worked for me. I have felt better for about 18 months.Up until this past Saturday, I started feeling not so good Saturdayevening and then by Sunday morning I was running a fever and hadextreme fatigue, the likes of which I have only experienced when an ENflair-up was in full swing. Then came the joint pain and feelingdizzy, and pain on the ball of my foot with a slight red mark on it,that was extremely tender but not lump or swelling. I slept 5hrs. onSunday afternoon then Sunday night, ran fevers Monday and Tuesday Tookoff from work. Same fatigue, literately couldn't keep my eyes open. Soinstead of fighting it, I just slept off and on all day Monday andTuesday. Went back to work on Wednesday felt like hell probably shouldhave taken another day. Anyway I got an appointment with theAcupuncturist. I'm feeling a little better. My question is have anymembers had the experience of having all the signs and symptoms of anEN flair-up coming on but the lumps just don't appear? Almost likeyour body is trying disparately to fight it off and somehow it doesmanage to keep it from getting full-blow and up and running with thelumps starting to appear. Anyone ever had anything like this? I wasafraid I was heading into another flair-up, I was dreading it. My lastone was awful as I said. And I've not had a good summer in the pasttwo years. Two yrs ago EN flair-up that incapacitated me from Aprilthrough August. Last summer knee surgery and then 10 days later had toput my Mom into an assisted living facility. I just could not care forher at home anymore and the Dr.'s told me it was not safe to leave heralone all day while we worked. So I've really been looking forward tosummer this year. Really didn't feel like I had one the last few years.I'd be interested to hear if others have had the experience offeeling like your body is heading in that direction and you're justwaiting for the lumps to start popping up.jewells Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

My last episode with EN was two years ago, it was awful, 22 lumps

everywhere imaginable. Incredible joint pain, fevers, extreme fatigue

the whole 9 yards. I tried Acupuncture since nothing else was working

and acupuncture worked for me. I have felt better for about 18 months.

Up until this past Saturday, I started feeling not so good Saturday

evening and then by Sunday morning I was running a fever and had

extreme fatigue, the likes of which I have only experienced when an EN

flair-up was in full swing. Then came the joint pain and feeling

dizzy, and pain on the ball of my foot with a slight red mark on it,

that was extremely tender but not lump or swelling. I slept 5hrs. on

Sunday afternoon then Sunday night, ran fevers Monday and Tuesday Took

off from work. Same fatigue, literately couldn't keep my eyes open. So

instead of fighting it, I just slept off and on all day Monday and

Tuesday. Went back to work on Wednesday felt like hell probably should

have taken another day. Anyway I got an appointment with the

Acupuncturist. I'm feeling a little better. My question is have any

members had the experience of having all the signs and symptoms of an

EN flair-up coming on but the lumps just don't appear? Almost like

your body is trying disparately to fight it off and somehow it does

manage to keep it from getting full-blow and up and running with the

lumps starting to appear. Anyone ever had anything like this? I was

afraid I was heading into another flair-up, I was dreading it. My last

one was awful as I said. And I've not had a good summer in the past

two years. Two yrs ago EN flair-up that incapacitated me from April

through August. Last summer knee surgery and then 10 days later had to

put my Mom into an assisted living facility. I just could not care for

her at home anymore and the Dr.'s told me it was not safe to leave her

alone all day while we worked. So I've really been looking forward to

summer this year. Really didn't feel like I had one the last few years.

I'd be interested to hear if others have had the experience of

feeling like your body is heading in that direction and you're just

waiting for the lumps to start popping up.

jewells

[Guest guest]

Does anyone notice a correlation with flare ups and stress??I always wonder if there is a relation?I think this flare up I have now,I have had since feb...Sent from my iPhone

My last episode with EN was two years ago, it was awful, 22 lumps

everywhere imaginable. Incredible joint pain, fevers, extreme fatigue

the whole 9 yards. I tried Acupuncture since nothing else was working

and acupuncture worked for me. I have felt better for about 18 months.

Up until this past Saturday, I started feeling not so good Saturday

evening and then by Sunday morning I was running a fever and had

extreme fatigue, the likes of which I have only experienced when an EN

flair-up was in full swing. Then came the joint pain and feeling

dizzy, and pain on the ball of my foot with a slight red mark on it,

that was extremely tender but not lump or swelling. I slept 5hrs. on

Sunday afternoon then Sunday night, ran fevers Monday and Tuesday Took

off from work. Same fatigue, literately couldn't keep my eyes open. So

instead of fighting it, I just slept off and on all day Monday and

Tuesday. Went back to work on Wednesday felt like hell probably should

have taken another day. Anyway I got an appointment with the

Acupuncturist. I'm feeling a little better. My question is have any

members had the experience of having all the signs and symptoms of an

EN flair-up coming on but the lumps just don't appear? Almost like

your body is trying disparately to fight it off and somehow it does

manage to keep it from getting full-blow and up and running with the

lumps starting to appear. Anyone ever had anything like this? I was

afraid I was heading into another flair-up, I was dreading it. My last

one was awful as I said. And I've not had a good summer in the past

two years. Two yrs ago EN flair-up that incapacitated me from April

through August. Last summer knee surgery and then 10 days later had to

put my Mom into an assisted living facility. I just could not care for

her at home anymore and the Dr.'s told me it was not safe to leave her

alone all day while we worked. So I've really been looking forward to

summer this year. Really didn't feel like I had one the last few years.

I'd be interested to hear if others have had the experience of

feeling like your body is heading in that direction and you're just

waiting for the lumps to start popping up.

jewells

[Guest guest]

Regarding question of stress affecting EN, I was told by the doctor that first diagnosed me that EN feeds on stress of any kind. You can have a flare from any stressful situation, whether mental, emotional or physical.

Regarding second question, yes it's possible to go through a flare up without lumps or with very low grade lumps. I've had low grade lumps on my left leg for years and most of the time I'm without symptoms. But recently, I've been cycling through one illness after another. Not much fun. I think that heat also brings stress on the body and can therefore aggravate EN. Articles I've read through this group seem to back me up on that. I hope you do have a better time this summer.

Sue

[Guest guest]

Dear Jewells,

I got my first diagnosis about 3 weeks ago. For 2 weeks before that, nodule free, I had similar symptoms are you describe. I went to 3 doctors, only the last diagnosed me, before which time I had no nodules.

Mostly, my problem was extreme fatigue and elephant-like red and hot swollen ankles (and eventually my entire feet) which kept me immobile at best, and on bed rest at worst. I had strange painful rashes near my toes. Nodules only appeared on my legs later.

Now, my nodules are worse, but they are manageable because I keep the ankles from swelling by wrapping them with these groovy and comfortable ankle wraps I found at CVS. It's so nice to see my ankles again. I even played basketball yesterday. With ankle wraps, I can do ANYTHING!

Just my .02 worth,

A speedy recovery to everyone!

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

Dear Group,

I have had bouts of pain in my arms like EN, Is there any case history in med

books about EN in the arms and legs and thought the body, Not just the legs.

I think I have some nodules in my arms and neck, My dr says no way, I need

something to prove her wrong. plz help mary

Subject: Re: Question for those with ENTo: erythema_nodosum_Group Date: Thursday, June 19, 2008, 10:34 PM

Jewells,

Yes I have been there before, a number of times, just not as bad as my first time, or maybe my first time was in 2006 with no lumps. I had the tiredness and the leg swelling while in Disneyland. Then 4 months later, or less, not sure of the time frame. Any ways, I became extremely tired. Not quite sure when the lumps began. First ones were on legs, thought my dog had hit into me, which she does, but not until they showed up on my arms, then I went to doctor. So I may of had this in 10-06, but dxd in 5-07. Right now a very painful one in right elbow, hurts like the Dickens.

Good luck and hope you feel better soon!

Debbie en 5-7

In a message dated 6/19/2008 4:59:04 P.M. Pacific Daylight Time, juwellsgmail (DOT) com writes:

My last episode with EN was two years ago, it was awful, 22 lumpseverywhere imaginable. Incredible joint pain, fevers, extreme fatiguethe whole 9 yards. I tried Acupuncture since nothing else was workingand acupuncture worked for me. I have felt better for about 18 months.Up until this past Saturday, I started feeling not so good Saturdayevening and then by Sunday morning I was running a fever and hadextreme fatigue, the likes of which I have only experienced when an ENflair-up was in full swing. Then came the joint pain and feelingdizzy, and pain on the ball of my foot with a slight red mark on it,that was extremely tender but not lump or swelling. I slept 5hrs. onSunday afternoon then Sunday night, ran fevers Monday and Tuesday Tookoff from work. Same fatigue, literately couldn't keep my eyes open. Soinstead of fighting it, I just slept off and on all day Monday andTuesday. Went back to work on

Wednesday felt like hell probably shouldhave taken another day. Anyway I got an appointment with theAcupuncturist. I'm feeling a little better. My question is have anymembers had the experience of having all the signs and symptoms of anEN flair-up coming on but the lumps just don't appear? Almost likeyour body is trying disparately to fight it off and somehow it doesmanage to keep it from getting full-blow and up and running with thelumps starting to appear. Anyone ever had anything like this? I wasafraid I was heading into another flair-up, I was dreading it. My lastone was awful as I said. And I've not had a good summer in the pasttwo years. Two yrs ago EN flair-up that incapacitated me from Aprilthrough August. Last summer knee surgery and then 10 days later had toput my Mom into an assisted living facility. I just could not care forher at home anymore and the Dr.'s told me it was not safe to leave

heralone all day while we worked. So I've really been looking forward tosummer this year. Really didn't feel like I had one the last few years.I'd be interested to hear if others have had the experience offeeling like your body is heading in that direction and you're justwaiting for the lumps to start popping up.jewells

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

Hi ,

There are lots of online references to EN on the arms and other

locations besides the shins:

http://www.nlm.nih.gov/medlineplus/ency/article/000881.htm

<<Erythema nodosum is most common on the shins, but it may also occur

on other areas of the body (buttocks, calves, ankles, thighs and upper

extremities). The lesions begin as flat, firm, hot, red, painful lumps

approximately an inch across. Within a few days they may become

purplish, then over several weeks fade to a brownish, flat patch.

Systemic (whole body) findings may include fever and malaise.>>

Some members have even reported EN on the face, so wherever there are

fat cells, it seems EN can occur, although the shins are most typical.

Love,

idio. EN '68

[Guest guest]

Dear ,

As we speak, I have nodules on my elbows and forearms. They are not nearly as painful or noticeable as the ones on my shins and they don't seem to last as long either.

My internist noticed them and definitely identified them as part of the Erythema Nodosum. He didn't seem the least bit surprised that they were there.

I don't think doctors really know that much about the ailment, which is why more research is necessary. Afterall, it is not in and of itself life-threatening and is only believed to be triggered by other ailments.

As I, for one, have cycled through this thing (this is my first time), I have noticed different aches and pains coming and going. For example, until one week ago, I woke up every morning with extremely stiff and painful knuckles -- part of the arthralgia. Now, the joints in my feet ache -- of which there are many. My blood work shows high inflammation, but I don't quite understand what that means or how that affects my body. I'm sure every person's body is affected differently by "inflammation."

A speedy recovery,

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

Hi ,

<<I don't think doctors really know that much about the ailment, which

is why more research is necessary. After all, it is not in and of

itself life-threatening>>

That is a mistaken belief, in my opinion. We have found that chronic

inflammation is damaging, which is why it is so important to find a

way back to remission from EN as quickly as possible.

http://www.washingtonpost.com/ac2/wp-dyn/A13755-2003Feb15?language=printer

Chronic EN may not kill us quickly, but it very well may be killing us

slowly.

I am really dumbfounded as to the lack of interest in getting research

by our group of over 1900 members. It took so much work to get NORD

to accept EN as a rare disease and set up the EN Research Fund, and

the Group has, except for a very few members, not seen the need for

research. A few dollars could, in effect, save lives. Here again is

the way to donate:

http://www.geocities.com/erythema_nodosum/donate/index.htm

Love,

idio. EN '68

[Guest guest]

Hi ,

Thank you for setting me straight! I would LOVE to understand this ailment better.

Chronic inflammation is no doubt damaging to the system, but exactly how?

, have you been more or less afflicted non-stop since 1968? Even if you've had periods of remission, I'm sure its been no picnic. That's a long time to be living on and off with this. I'm sure you've racked your brain trying to figure out what is causing all this.

Although you may have already done so in the past, is it possible to give us a little biography of yourself and your history with EN since its first appearance? I hope its not too tedious -- I'm quite new to this forum.

I venture to say that the information that could be gleaned from the individuals on this forum would be a very good place to start with understanding EN better. Particularly since it is rather rare as I understand it, and therefore people like us would ordinarily be difficult to find.

I'm certainly not a physician, but each one of us can be a scientist of sorts and can make a positive contribution. I, for one, would like to know if there have been any studies which show how the degree of inflammation measured in the blood corresponds to the severity of EN with which one is afflicted.

Further, I pledge $36.00 contribution towards EN research. I am printing out the information regarding where to forward my check. This is indeed a small contribution to make considering, among other things, the benefits gained from all the information available through this group, and ultimately, from the research yet to be conducted.

A speedy recovery to all,

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

Hi ,

I have rows of nudules on each of my forearms, and some smaller ones scattered on my upper arm. They haven't flared up like the ones on the legs did, they aren really visible and the nodules themselves don't hurt nearly as much as the leg ones when touched, but they are causing me a lot of pain in both arms and I am feeling the same exhaustion that I did with the leg nodules, but I have less to show for it! They have also affected my elbow.

, I will donate as soon as I have sorted some security problems out (I have been advised not to use the internet for financial transactions for the time being). I am really grateful for all the information that you have provided, I don't think I would get nearly as much help from a consultant!

I showed them to my respiratory medicine consultant, whose only response was "Weird", my doctor felt them but didn't caoomen.

Re: Question for those with ENTo: erythema_nodosum_Group Date: Thursday, June 19, 2008, 10:34 PM

Jewells,

Yes I have been there before, a number of times, just not as bad as my first time, or maybe my first time was in 2006 with no lumps. I had the tiredness and the leg swelling while in Disneyland. Then 4 months later, or less, not sure of the time frame. Any ways, I became extremely tired. Not quite sure when the lumps began. First ones were on legs, thought my dog had hit into me, which she does, but not until they showed up on my arms, then I went to doctor. So I may of had this in 10-06, but dxd in 5-07. Right now a very painful one in right elbow, hurts like the Dickens.

Good luck and hope you feel better soon!

Debbie en 5-7

In a message dated 6/19/2008 4:59:04 P.M. Pacific Daylight Time, juwellsgmail (DOT) com writes:

My last episode with EN was two years ago, it was awful, 22 lumpseverywhere imaginable. Incredible joint pain, fevers, extreme fatiguethe whole 9 yards. I tried Acupuncture since nothing else was workingand acupuncture worked for me. I have felt better for about 18 months.Up until this past Saturday, I started feeling not so good Saturdayevening and then by Sunday morning I was running a fever and hadextreme fatigue, the likes of which I have only experienced when an ENflair-up was in full swing. Then came the joint pain and feelingdizzy, and pain on the ball of my foot with a slight red mark on it,that was extremely tender but not lump or swelling. I slept 5hrs. onSunday afternoon then Sunday night, ran fevers Monday and Tuesday Tookoff from work. Same fatigue, literately couldn't keep my eyes open. Soinstead of fighting it, I just slept off and on all day Monday andTuesday. Went back to work on Wednesday felt like hell probably shouldhave taken another day. Anyway I got an appointment with theAcupuncturist. I'm feeling a little better. My question is have anymembers had the experience of having all the signs and symptoms of anEN flair-up coming on but the lumps just don't appear? Almost likeyour body is trying disparately to fight it off and somehow it doesmanage to keep it from getting full-blow and up and running with thelumps starting to appear. Anyone ever had anything like this? I wasafraid I was heading into another flair-up, I was dreading it. My lastone was awful as I said. And I've not had a good summer in the pasttwo years. Two yrs ago EN flair-up that incapacitated me from Aprilthrough August. Last summer knee surgery and then 10 days later had toput my Mom into an assisted living facility. I just could not care forher at home anymore and the Dr.'s told me it was not safe to leave heralone all day while we worked. So I've really been looking forward tosummer this year. Really didn't feel like I had one the last few years.I'd be interested to hear if others have had the experience offeeling like your body is heading in that direction and you're justwaiting for the lumps to start popping up.jewells

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

Hi ,

I never use the internet to make my donations. I write a check and

mail it to NORD. I include a note that restricts my donation to the

" Erythema Nodosum Research Fund " [and I ask for a receipt as it is tax

deductible]. It is the easiest way to donate and the safest.

Thanks for your contribution!

Love,

[Guest guest]

,

I love 36 too. 2X Chai.

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

Hi ,

Cheques are a bit of a problem, and an additional expense, to send abroad from the UK.

Re: Question for those with EN

Hi ,I never use the internet to make my donations. I write a check andmail it to NORD. I include a note that restricts my donation to the"Erythema Nodosum Research Fund" [and I ask for a receipt as it is taxdeductible]. It is the easiest way to donate and the safest.Thanks for your contribution!Love,

[Guest guest]

Dear ,

Thank you so much for your $36. conribution to EN Research.

I love the number 36:

http://en.wikipedia.org/wiki/36_(number)

Our EN Website has a small bio of my life with EN:

http://www.geocities.com/erythema_nodosum/rebecca/index.htm

The website is also a great EN resource tool. I have many ideas to

make it even better, but I am busy now writing a poetry book, and I

truly enjoy the creative process.

Love,

[Guest guest]

Yes, but aren't the Euros worth 1.5 times our US dollars now? Seems to

me that with the favorable rate of exchange the time has never been

better to donate to EN Research from abroad.

http://www.x-rates.com/calculator.html

Love,

>

> Hi ,

>

> Cheques are a bit of a problem, and an additional expense, to send

abroad from the UK.

>

>

[Guest guest]

Euros aren't our UK currency, they accept them in shops as cash but I can only issue cheques from my bank account in GBP. The last time I enquired I was told that to pay a cheque in Euros into my bank account would cost $20.00, however small the value of the cheque.

The last time I sent a cheque to the US (before Paypal) I had to make an appointment at the bank to have a cheque issued in dollars and I had to pay $14 for the service, That takes a great lump out of any donation.

Re: Question for those with EN

Yes, but aren't the Euros worth 1.5 times our US dollars now? Seems tome that with the favorable rate of exchange the time has never beenbetter to donate to EN Research from abroad.http://www.x-rates.com/calculator.htmlLove,--- In erythema_nodosum_Group , " " wrote:>> Hi ,> > Cheques are a bit of a problem, and an additional expense, to sendabroad from the UK. > >

[Guest guest]

Perhaps our UK members can all send their donations to one UK member

and she can wire the funds in a lump sum and save the individual

transaction fees. I always say that " where there is a will, there is a

way " . We have quite a few UK members. The answers from research will

help all of us, not just Americans.

Love,

>

> Euros aren't our UK currency, they accept them in shops as cash but

I can only issue cheques from my bank account in GBP. The last time

I enquired I was told that to pay a cheque in Euros into my bank

account would cost $20.00, however small the value of the cheque.

>

> The last time I sent a cheque to the US (before Paypal) I had to

make an appointment at the bank to have a cheque issued in dollars and

I had to pay $14 for the service, That takes a great lump out of any

donation.

>

>

>

[Guest guest]

Yes, it is a beautiful number. Very special.Love,Please enter Erythema Nodosum.........Thanks!Donation InformationSubject: Re: Re: Question for those with ENTo: erythema_nodosum_Group Date: Tuesday, June 24, 2008, 5:53 PM

,

I love 36 too. 2X Chai.

Gas prices getting you down? Search AOL Autos for fuel-efficient used cars.

[Guest guest]

I wanted to thank you I am having trbl w my arms and shoulders

and neck area. this will help thank you again.

Subject: Re: Question for those with ENTo: erythema_nodosum_Group Date: Monday, June 23, 2008, 11:57 PM

Hi ,There are lots of online references to EN on the arms and otherlocations besides the shins:http://www.nlm. nih.gov/medlinep lus/ency/ article/000881. htm<<Erythema nodosum is most common on the shins, but it may also occuron other areas of the body (buttocks, calves, ankles, thighs and upperextremities) . The lesions begin as flat, firm, hot, red, painful lumpsapproximately an inch across. Within a few days they may becomepurplish, then over several weeks fade to a brownish, flat patch.Systemic (whole body) findings may include fever and malaise.>>Some members have even reported EN on the face, so wherever there arefat cells, it seems EN can occur, although the shins are most typical.Love,idio. EN

'68

[Guest guest]

You are right!!! Infact, I just got out of the hospital for that

problem. Lesions located on 5-left lower leg, 2-right thigh, 2-right

lower leg, 6-right hip, 2-left hip, 2 right upper arm. And, the Doctors

that " DO " research on EN/PG and Crohns Disease were my Docs. Research

continues and so does ignorance. And by the way, Remicade IV therapy

treatment is the next phase of my treatment plan.