sick and tired

[Guest guest]

Hi here I know it is hard and the only thing that works for me is complete rest and I dont get much of that like you the lumps get so big they feel as if their going to pop I dont want to upset you but the only real thing you can do is take it easy the more you do the worse it gets until the flare dies down I have had my present flare up since march i have suffered from En for 21 years and it has got no better I have had all kinds of medication and that hasnt helped, I not only get the lumps on my shins but have had them on my groin arms shoulders and the tops of my legs, I know how u feel this condition does get you down but can also get worse if you get stressed so keeping stress levels to a minimum will help it is horrrible and I do sympothize with you like a lot of other sufferers will try and keep your spirits up focus on something that is good

in your life, my children laugh at me because I wont give in this flare up is painfull and I still do exercises on my wii fit board every morning afternoon and evening cos I will be damed if EN will get the better of me take care

Subject: sick and tiredTo: erythema_nodosum_Group Date: Thursday, 3 September, 2009, 9:14 AM

so this is my first ever flare up of EN and its been extremely painful.. im on my 2 week and yesterday at work i got up and walked a lot and after work i went to target because i needed some things and after target my ankles where so swollen that i almost cried i have a lot of bumps in my leg that are popped out. when does this go away?? when i rest at night i wake up with more pain then ever i cant even get up i feel like the bumps are going to explode!!! i am so worried

[Guest guest]

Hi Amy. It's Pat again. I'm so so sorry you are suffering the way you are. If it helps at all to know, the first time is the hardest, simply because you don't know what to expect from day to day, and you don't know when/if it will go away. My first flare up started 2/6/09. I was hospitalized on 2/12 and stayed for six days. They gave me morphine plus high doses of Motrin and none of that really even touched the pain. About six weeks later it went into semi-remission, then came back full force at the beginning of July. This second time I was still frightened and miserable, but now it is going into remission again (cross fingers), and having gone through 2 cycles I am no longer afraid of this disease. I HATE it,

but I don't fear it anymore. You will get there too. No one can tell you when yours will get better, but doctors and the medical information one can find on the internet indicate that the cycle is around 6 weeks. Mine seems a bit longer than that. I know when it is leaving because the skin on top of the lumps starts to change to deep purple, and then peels off (like a bad sunburn). The skin underneath is soft as can be! This takes 2-3 weeks in and of itself.

I pray you start feeling better soon!!

To: erythema_nodosum_Group Sent: Thursday, September 3, 2009 4:14:51 AMSubject: sick and tired

so this is my first ever flare up of EN and its been extremely painful. im on my 2 week and yesterday at work i got up and walked a lot and after work i went to target because i needed some things and after target my ankles where so swollen that i almost cried i have a lot of bumps in my leg that are popped out. when does this go away?? when i rest at night i wake up with more pain then ever i cant even get up i feel like the bumps are going to explode!!! i am so worried

[Guest guest]

Hi Pat and Group,That is an excellent point about the peeling of the EN areas when you are headed to remission. It happens when the skin, which has been stretched from swelling, begins to shrink back to normal --and it can itch like crazy. In my own experience scratching can make the EN flare up again, so resist the urge as the sunburn like skin peels off on it's own. From having over 100 separate EN episodes, my lower left leg always has a pinker hue than the right which rarely flared up. The fat cells have burned away so the left leg is also thinner than the right. But it took many decades for this to come about. For the first twenty or so years there was no noticeable difference between

the legs.I don't know if this loss of fat is typical of EN. I don't think it is.Love,EN since 1968 in remission nowhttp://poems2order.wordpress.com/Please enter Erythema Nodosum.........Thanks!Donation Information

[Guest guest]

right now my skin feels like its going to break if i just move because of the

swelling but its also itching a lot but my ankle looks scary lol!!! most of my

bumps are in the shin and i have some in my thighs but i have never gotten

diagnosed by a doctor because most dont even know what this is!!! thats why i

come here for advise because i rather listen to the stories of people who

actually know how horrible this is!

amy

>

> Hi Pat and Group,

> That is an excellent point about the peeling of the EN areas when you are

headed to remission. It happens when the skin, which has been stretched from

swelling, begins to shrink back to normal --and it can itch like crazy. In my

own experience scratching can make the EN flare up again, so resist the urge as

the sunburn like skin peels off on it's own.

>

> From having over 100 separate EN episodes, my lower left leg always has a

pinker hue than the right which rarely flared up. The fat cells have burned away

so the left leg is also thinner than the right. But it took many decades for

this to come about. For the first twenty or so years there was no noticeable

difference between the legs.

> I don't know if this  loss of fat is typical of EN. I don't think it is.

> Love,

>

> EN since 1968 in remission now

> http://poems2order.wordpress.com/

>

>

>

>

> Please enter

> Erythema Nodosum.........Thanks!

>

> Donation Information

>

[Guest guest]

I had my first round of EN this summer. Since then about every other week or so

I become crippled. My joints refuse to work properly. I sometimes get the

nodules but not always. I can feel deep ache coming on for hours before I get

stiff. I've been tested for auto immune diseases and all were negitive. When the

doctor came in and talked to me he pulled his pda out and read directly from it.

He has no idea what to do or where to send me next.

What doctors would you recommend me seeing? What meds are working for you?

I wrote down Humira (and I'm going to research it). I'm not wanting to take

steroids. I've gained 40lbs from this summers dosages.

Thank you

Carla

[Guest guest]

Hi Barbara and Group,I'm sorry the cold water soaks did not help, Barbara. Since I used them I have been in a remission for at least a year. I was using both a compression knee sock AND wrapping elastic bandages on my EN left leg--one over the other. The last few months I have been walking: first 1.5 miles once and then twice a day. Still the remission held. The last two days I only wore the compression sock without the elastic bandage over it. And I did the two walks. So far the remission has held and my leg looks good--although the fat where the EN usually broke out is nearly gone, so the lower left leg looks thinner than the right. Maybe some day I will have the courage to go without a

compression sock in the house and then try longer walks without it. After over 40 years of EN this is a miracle. But I don't know what my trigger was, or why exactly I was blessed this remission, so I still can't honestly call myself a "cured member"--just a lucky one.I hope you find a treatment that helps, Barbara and everyone else who is suffering an EN episode or relapse.PS: I started to take levothyroid for low thyroid a month ago. I had this condition which caused no symptoms for over 10 yrs., but my new HMO dr. said I should begin treating it. I have now been told to take 50mcg a day, whereas for the past month I took

a starting dose of 25mcg. My cholesterol and thyroid function improved with the levothryroid [which is synthetic] as my dr. felt it would. I have been a low energy person for a long time, so I am wondering if improving the thyroid numbers will help there.Love,http://poems2order.wordpress.com/Please enter Erythema Nodosum.........Thanks!Donation InformationSubject: Re: [sPAM] sick and tiredTo: erythema_nodosum_Group Date:

Tuesday, November 3, 2009, 8:00 AM

Hi Carla,

I 'm so sorry you have this perplexing disease. It is hard to believe that no Drs. seem to have a clue about it. I asked my Dr. yest. about Humira and he thinks it is only for Sarcoid (sp.) or whatever that lung disease is. He said,"you don't have that". I just take Plaquenil and it doesn't help. The steroids just sometimes give some temporary relief and are so destructive for your body. I am trying to find Armour thyroid. Some people have had better luck with it than Synthroid. The Pharmacies around here can't get it. (in case you have low thyroid problems)

HOpe you feel better soon. soaked her leg in ice water and it helped her. It didn't work for me.

Sincerely,

Barbara

[sPAM] sick and tired

I had my first round of EN this summer. Since then about every other week or so I become crippled. My joints refuse to work properly. I sometimes get the nodules but not always. I can feel deep ache coming on for hours before I get stiff. I've been tested for auto immune diseases and all were negitive. When the doctor came in and talked to me he pulled his pda out and read directly from it. He has no idea what to do or where to send me next. What doctors would you recommend me seeing? What meds are working for you? I wrote down Humira (and I'm going to research it). I'm not wanting to take steroids. I've gained 40lbs from this summers dosages.Thank you Carla

[Guest guest]

Hi Carla,

I'm so sorry you have this crappy disease. It's fairly new to me also. I would

recommend seeing a Rheumatologist. Of all the doctors who became involved with

my case while I was hospitalized in February with this, my Rheumatologist is the

only one who has taken the whole journey with me. The joint pain is a

particular type of arthritis - it is caused by inflamation of the various types

of tissue surrounding the joints. It is part of EN, in my understanding.

I, too, took prednisone (until 11 days ago), and I, too, gained 38 pounds. It's

the pits!! Now that I am off the prednisone the joint pain is coming back. I

called my Rheumatoligist yesterday to ask if this was normal, just coming off

prednisone, and he said it was not. I'm now taking an anti-inflammatory to see

if it helps, and I'm to call again on Thursday.

I hope you can find a doctor who will follow you like this one is for me. Even

if she/he does not know all the answers, she/he will know YOU and your history.

While this joint pain is exactly how the flare-ups started before, I do not have

any nodules this time. I leave for a two-week vacation on Friday...please,

nodules, stay away!

Carla, good luck with your doctor search. If you live near a good teaching

hospital, that might be a good place to start.

I can't really recommend any medication(s). Nothing really seems to work, and

the side effects are not good. Do you know what your EN trigger is? Sometimes,

if that is known, treating it can help.

Love,

Pat

EN since 2/09 (supposedly due to either pneumonia or Ceftin, the antibiotic used

to treat the pneumonia); in remission for a couple of months.

>

> I had my first round of EN this summer. Since then about every other week or

so I become crippled. My joints refuse to work properly. I sometimes get the

nodules but not always. I can feel deep ache coming on for hours before I get

stiff. I've been tested for auto immune diseases and all were negitive. When the

doctor came in and talked to me he pulled his pda out and read directly from it.

He has no idea what to do or where to send me next.

>

> What doctors would you recommend me seeing? What meds are working for you?

>

> I wrote down Humira (and I'm going to research it). I'm not wanting to take

steroids. I've gained 40lbs from this summers dosages.

>

>

> Thank you

> Carla

>

[Guest guest]

Hi Carla,

I was in a similar situation in 2007-2008 (10 months of continuous EN with

arthritis for no apparent reason). My trigger was probably a combination of

being 1 year postpartum (hormonal changes), a bad case of mastitis while weaning

my son, and developing Hashimoto's thryroiditis. I spent 9 months on prednisone

and got stuck so that I could not wean off it without worsening the EN and

arthritis. My 2nd rheumatologist that I saw immediately recommended plaquenil.

The plaquenil resolved my EN within a week, and the arthritis within a few

weeks. I was on it for about 13 months, and I have never had another bout of EN

since (knock on wood!!). Occasionally when I get sick or I'm fighting a virus,

I'll get a curious ache in my knee that serves as a reminder of how bad it was

with the EN.

Good luck,

April

EN 5/07 (in remission since 3/08)

>

> I had my first round of EN this summer. Since then about every other week or

so I become crippled. My joints refuse to work properly. I sometimes get the

nodules but not always. I can feel deep ache coming on for hours before I get

stiff. I've been tested for auto immune diseases and all were negitive. When the

doctor came in and talked to me he pulled his pda out and read directly from it.

He has no idea what to do or where to send me next.

>

> What doctors would you recommend me seeing? What meds are working for you?

>

> I wrote down Humira (and I'm going to research it). I'm not wanting to take

steroids. I've gained 40lbs from this summers dosages.

>

>

> Thank you

> Carla

>

[Guest guest]

Hi April,Thanks for that info. Good to hear that things are going well. I just added your story to our "Cured Members List" in our Files.Love,http://poems2order.wordpress.com/Please enter Erythema Nodosum.........Thanks!Donation InformationFrom: April

Subject: Re: sick and tiredTo: erythema_nodosum_Group Date: Thursday, November 5, 2009, 4:15 PMHi Carla,I was in a similar situation in 2007-2008 (10 months of continuous EN with arthritis for no apparent reason). My trigger was probably a combination of being 1 year postpartum (hormonal changes), a bad case of mastitis while weaning my son, and developing Hashimoto's thryroiditis. I spent 9 months on prednisone and got stuck so that I could not wean off it without worsening the EN and arthritis. My 2nd rheumatologist that I saw immediately recommended plaquenil. The plaquenil resolved my EN within a week, and the arthritis within a few weeks. I was on it for about 13 months, and I have never had another bout of EN since (knock on wood!!). Occasionally when I get sick or I'm fighting a virus, I'll get a

curious ache in my knee that serves as a reminder of how bad it was with the EN.Good luck,AprilEN 5/07 (in remission since 3/08)>> I had my first round of EN this summer. Since then about every other week or so I become crippled. My joints refuse to work properly. I sometimes get the nodules but not always. I can feel deep ache coming on for hours before I get stiff. I've been tested for auto immune diseases and all were negitive. When the doctor came in and talked to me he pulled his pda out and read directly from it. He has no idea what to do or where to send me next. > > What doctors would you recommend me seeing? What meds are working for you? > > I wrote down Humira (and I'm

going to research it). I'm not wanting to take steroids. I've gained 40lbs from this summers dosages.> > > Thank you > Carla>------------------------------------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!