Question for those seeing a, Rheumatologist

[Guest guest]

Hi Jewells My name is and I have had en for 18years on and off I was seeing a rhumi for a while when my en was in flare up and in the end they gave up as they could not find out why I had en and I was discharged from the hospital, like you I suffer from swollen feet and ankles they get so tight at times the skin feels as if it will split,and terrible pain in the ankle joints as well.I also get terrible pain in these joints when my en has gone and lately my small bones in my feet and toes have been tender to touch although

they are not red or swollen also funny you should say about your glands swelling, mine swell up quite regularly especially the big one just above the adams apple and they get very sore but I never have any other symptoms just the glands. hope this is of some help to you bye for now

Question for those seeing a, Rheumatologist

I have a question for those on the list who are seeing arheumatologist. My question is; did you test postive for Rheumatoidarthritis on a blood test? Or were you refered to a rheumatologist forthe sevre joint pain associated with EN? I'm curious because I'm still suffering from very serve joint pain & swelling of my feet and ankles and it's now been just over a monthsince the last of the nodules have gone down. When I get up in themorning I can hardly walk, it's extremely painful just getting downthe stairs to make it to the bathroom in the morning. And I'm havingto wear ACE ankle braces in order to be able to work. I'm a systemsadmin so I mostly sit at work and I have some thing under my desk tokeep my feet elevated. But on the days when I do have to spend moretime standing or walking I really pay for it,by the time I get home Idon't even recognize my own feet and ankles they are so swollen. I'vebeen on Relafine

(NSAID)since the flair-up began back in mid-April.And on nights when the pain is really bad I take a Vicodin when I goto bed.Anyway just curious, I've been debating returning to the Dr. Ihaven't been since May 3rd when I was given a shot of Artistacort anda 16 day run of Prednisone to get the nodules to go down.I havenoticed in the last two days the the gland on the right side of myneck is swollen again and this was my first sign of something going onand not feeling well back in April when this entire thing started. Ihad, had EN in my 20's and then no full blown flair-ups again untilthis year at age 45. I have had strange episodes of fevers and swollenglands & fatigue for 20 yrs or so that no Dr. could ever explain.Which makes me very reluctant to seek medical attention. Because I'vefound sometimes when Dr.'s can't figure out what's going on with youthey tend to make it that it's you or all in your head kind of

thing,that you're not REALLY ill and you're wasting their time.So any opinions, infomation or thoughts on seeing a Rheumatologistor if I should think about going back to the Primary care Dr. anddiscuss these issues and symptoms.jewellsEN- 1983 and 2006

[Guest guest]

With regards to joint pain, one well researched article states:Joints: Arthralgia occurs in more than 50% of

patients and begins during the eruptive phase or precedes the eruption

by 2-4 weeks. Erythema, swelling, and tenderness occur over the joint,

sometimes with effusions. Joint tenderness and morning stiffness may

occur. Any joint may be involved, but the ankles, knees, and wrist are

affected most commonly. Synovitis resolves within a few weeks, but

joint pain and stiffness may last up to 6 months. No destructive joint

changes occur. Synovial fluid is acellular, and the rheumatoid factor

is negative.The question I have is why approximatly 50% of the EN sufferers do not have joint pain. I am one of the lucky ones. I am guessing that there is something genetic in the answer. I know, I tend to blame and credit everything on genetics, but until we have the research to compare those like me and those like Tawnya, we'll never know.Wishing Everyone a painfree day!Love,

[Guest guest]

Jackie Siraco wrote: To: Subject: Re: Question for those seeing a, RheumatologistDate: Tue, 27 Jun 2006 05:58:05 -0400 Hi , I haven't written in a long time but just had to say that I also suffer from joint pain and have been taking arthritis medication. It doesn't take away all the pain but helps to make it more tollerable. Like you, I seem to notice it more just before a flare up of my panniculitis. Arthritis does run in my family so maybe it is genetic.. but I don't think that is the only reason I have it. Hope everyone is well and having a pain free day. Jackie Siraco You can help Erythema Nodosum Research. Just go to 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. So sign up today, and be sure to tell your friends, family and co-workers. Let's find a cure for Erythema Nodosum!

Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

Hi Jewells,

I was diagnosed with RA at the time of my first outbreak of EN which followed a severe case of Asian flu way back in the 1970s. After about 6 weeks, it all went into remission and it came back and went into remission again in my early 40s. In my late 50s, it came back to stay, RA with EN at onset. The blood tests at that time definitely indicated it was RA, positive rheumatoid factor, and I've been seeing a rheumatologist ever since. My understanding is that people with RA don't *always* test positive for the rheumatoid factor. Besides that, you could be positive for the rheumatoid factor and still it might another form of arthritis besides straight rheumatoid arthritis (RA). It could be Lupus, Reiter's Syndrome, Ankylosing Spondilities, or many more. Diagnosing arthritis is far from simple and straightforward. Yes, you should see a rheumatologist again, definitely! And again. It's possible you may even have fibromyalgia as many of it's symptoms are so similar. Don't wait any longer. Go see your rheumatologist again!

lie

[Guest guest]

YAY! Not cheering because u are in pain . but because you get

swollen glands in your neck and SO DO I. I really wonder if mine is

associated to my EN. (Thx for sharing that so i can pass it along to

my doc!) I too, was diagnosed with RA after having a " high "

rheumatoid factor. I was referred to a rheumatologist, who talked

about symptoms said " yeah think u got it " basically then tested me

again , she says " different blood tests " then said, " no you dont, i

dont have any idea what u have, lose weight " basically. SO I was

left with a nothing diagnosis, for about the 20th time in the 4 yrs

Ive had EN. I too have severe severe joint pain and swelling of the

feet and ankles (one more so than the other). I also elevate my legs

under my desk (i sit for 12 hrs at a time, not the best thing). At

25, i really didnt want to have RA or anything else! I refused to

take prednisone because of the weight gain side effect, since IM

getting married in 19 days now (it was 3 mos away at the time ), so

I just left it alone, used tylenol arthritis and aleve which helped

some and tried to rest. Now they think my EN was from birth control

pills which Ive been off about 4 months now and now in " remission. "

Hopefully IM done. LEt me know what u find out! I learn so much from

everyones experiences!

>

> I have a question for those on the list who are seeing a

> rheumatologist. My question is; did you test postive for Rheumatoid

> arthritis on a blood test? Or were you refered to a rheumatologist

for

> the sevre joint pain associated with EN?

> I'm curious because I'm still suffering from very serve joint

pain

> & swelling of my feet and ankles and it's now been just over a

month

> since the last of the nodules have gone down. When I get up in the

> morning I can hardly walk, it's extremely painful just getting down

> the stairs to make it to the bathroom in the morning. And I'm

having

> to wear ACE ankle braces in order to be able to work. I'm a systems

> admin so I mostly sit at work and I have some thing under my desk

to

> keep my feet elevated. But on the days when I do have to spend more

> time standing or walking I really pay for it,by the time I get

home I

> don't even recognize my own feet and ankles they are so swollen.

I've

> been on Relafine (NSAID)since the flair-up began back in mid-April.

> And on nights when the pain is really bad I take a Vicodin when I

go

> to bed.

> Anyway just curious, I've been debating returning to the Dr. I

> haven't been since May 3rd when I was given a shot of Artistacort

and

> a 16 day run of Prednisone to get the nodules to go down.I have

> noticed in the last two days the the gland on the right side of my

> neck is swollen again and this was my first sign of something

going on

> and not feeling well back in April when this entire thing started.

I

> had, had EN in my 20's and then no full blown flair-ups again until

> this year at age 45. I have had strange episodes of fevers and

swollen

> glands & fatigue for 20 yrs or so that no Dr. could ever explain.

> Which makes me very reluctant to seek medical attention. Because

I've

> found sometimes when Dr.'s can't figure out what's going on with

you

> they tend to make it that it's you or all in your head kind of

thing,

> that you're not REALLY ill and you're wasting their time.

> So any opinions, infomation or thoughts on seeing a

Rheumatologist

> or if I should think about going back to the Primary care Dr. and

> discuss these issues and symptoms.

>

> jewells

> EN- 1983 and 2006

>

[Guest guest]

Birth control pills huh? Well that was what they told me triggered my

first round of EN, back when I was in my early twenties. I only had

one nodule come up then,in the calf of my left leg, and some joint

pain. They took me off birth control pills and I managed to not have a

relapse for about 20yrs. Or so I thought, but now I'm wondering if EN

has been giving me problems for years and I just didn't realize it.

Off & on for years now I'd have fatigue and random fevers and swollen

glands and every time I went to a Dr. they couldn't find any reason

for it.

Until this past spring when I got a bad case of strep throat. That

seemed to set the EN back in full swing. I ended up with about 16

nodules and very serve joint pain.That was in mid-April I ended up

having to give me a shot of Artistacort & a 16 day run of Prednisone

before the nodules went done. And lucky me I got strep throat yet

again last week. While we were on vacation, no less. And as I feared

my joint pain has gotten even worse and I've had about 5 small nodules

come up and a golfball sized swollen gland on the right side of my

neck. Just like I had back in mid-April. I'm now on a 10 day run of

antibiotics. And when I went to the Dr. on Saturday she reffered me to

a Rheumatologist for the joint pain. I hate this I feel like I can't

do anything I get so tired and my joints make it hard for me to do

anything.When we were on vacaton at Deep Crrek Lake I normally take

our dogs for a long walk through the woods every day but this time it

was all I could do to take the down the hill in the morning for them

So I suppose from now on when I hear someone at work has strep throat

I'm going to have to breakout a Hazmat suit to wear to work, cause I

can't afford to catch strep throat.

I've been taking Relafin for the joint swelling & pain since April

and when it's really bad and I can't sleep from it I'll take a

Vicodin, I hope this Rheumatologist can come up with something better.

jewells

-- In erythema_nodosum_Group , " Thats 10-35 "

wrote:

>

> YAY! Not cheering because u are in pain . but because you get

> swollen glands in your neck and SO DO I. I really wonder if mine is

> associated to my EN. (Thx for sharing that so i can pass it along to

> my doc!) I too, was diagnosed with RA after having a " high "

> rheumatoid factor. I was referred to a rheumatologist, who talked

> about symptoms said " yeah think u got it " basically then tested me

> again , she says " different blood tests " then said, " no you dont, i

> dont have any idea what u have, lose weight " basically. SO I was

> left with a nothing diagnosis, for about the 20th time in the 4 yrs

> Ive had EN. I too have severe severe joint pain and swelling of the

> feet and ankles (one more so than the other). I also elevate my legs

> under my desk (i sit for 12 hrs at a time, not the best thing). At

> 25, i really didnt want to have RA or anything else! I refused to

> take prednisone because of the weight gain side effect, since IM

> getting married in 19 days now (it was 3 mos away at the time ), so

> I just left it alone, used tylenol arthritis and aleve which helped

> some and tried to rest. Now they think my EN was from birth control

> pills which Ive been off about 4 months now and now in " remission. "

> Hopefully IM done. LEt me know what u find out! I learn so much from

> everyones experiences!

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> >

> > I have a question for those on the list who are seeing a

> > rheumatologist. My question is; did you test postive for Rheumatoid

> > arthritis on a blood test? Or were you refered to a rheumatologist

> for

> > the sevre joint pain associated with EN?

> > I'm curious because I'm still suffering from very serve joint

> pain

> > & swelling of my feet and ankles and it's now been just over a

> month

> > since the last of the nodules have gone down. When I get up in the

> > morning I can hardly walk, it's extremely painful just getting down

> > the stairs to make it to the bathroom in the morning. And I'm

> having

> > to wear ACE ankle braces in order to be able to work. I'm a systems

> > admin so I mostly sit at work and I have some thing under my desk

> to

> > keep my feet elevated. But on the days when I do have to spend more

> > time standing or walking I really pay for it,by the time I get

> home I

> > don't even recognize my own feet and ankles they are so swollen.

> I've

> > been on Relafine (NSAID)since the flair-up began back in mid-April.

> > And on nights when the pain is really bad I take a Vicodin when I

> go

> > to bed.

> > Anyway just curious, I've been debating returning to the Dr. I

> > haven't been since May 3rd when I was given a shot of Artistacort

> and

> > a 16 day run of Prednisone to get the nodules to go down.I have

> > noticed in the last two days the the gland on the right side of my

> > neck is swollen again and this was my first sign of something

> going on

> > and not feeling well back in April when this entire thing started.

> I

> > had, had EN in my 20's and then no full blown flair-ups again until

> > this year at age 45. I have had strange episodes of fevers and

> swollen

> > glands & fatigue for 20 yrs or so that no Dr. could ever explain.

> > Which makes me very reluctant to seek medical attention. Because

> I've

> > found sometimes when Dr.'s can't figure out what's going on with

> you

> > they tend to make it that it's you or all in your head kind of

> thing,

> > that you're not REALLY ill and you're wasting their time.

> > So any opinions, infomation or thoughts on seeing a

> Rheumatologist

> > or if I should think about going back to the Primary care Dr. and

> > discuss these issues and symptoms.

> >

> > jewells

> > EN- 1983 and 2006

> >

>

[Guest guest]

Hi, I am finding all your posts fascinating. I have had Sarc. since being a kid, and it was Sarcoidosis that was blamed for the EN, the fevers and the arthritis. But Sarcoidosis has been very quiet for almost 20 years now. But, I am still getting the random fevers, the skin (look like hives for me) and the joint pain. I have blood work done every month and nothing abnormal shows up other than I am a little bit anemic. I tried taking Plaquinel (spelling) without Prendisone, but just felt worse. I'm not advocating prednisone, but I take only 5 mg. a day and it does really make me feel so much better. I look and feel like myself at this dose. I don't know if you have to be on a high dose for it to work, and I understand the fears and risks of it, but for me I need it to feel better and I'm grateful that it does make me feel better. But I'm just so

surprise to find all of you whom have erythema and fevers, and nodules in the neck and joint pain. I dont have answers but at least I know there is a connection. I'm not alone. You aren't alone. Louise EN-Sarc. 1976Thats 10-35 wrote: YAY! Not cheering because u are in pain . but because you get swollen glands in your neck and SO DO I. I really wonder if mine is associated to my EN. (Thx for sharing that so i can pass it along to my doc!) I too, was

diagnosed with RA after having a "high" rheumatoid factor. I was referred to a rheumatologist, who talked about symptoms said "yeah think u got it " basically then tested me again , she says "different blood tests" then said, "no you dont, i dont have any idea what u have, lose weight" basically. SO I was left with a nothing diagnosis, for about the 20th time in the 4 yrs Ive had EN. I too have severe severe joint pain and swelling of the feet and ankles (one more so than the other). I also elevate my legs under my desk (i sit for 12 hrs at a time, not the best thing). At 25, i really didnt want to have RA or anything else! I refused to take prednisone because of the weight gain side effect, since IM getting married in 19 days now (it was 3 mos away at the time ), so I just left it alone, used tylenol arthritis and aleve which helped some and tried to rest. Now they think my EN was from birth control pills which Ive

been off about 4 months now and now in "remission." Hopefully IM done. LEt me know what u find out! I learn so much from everyones experiences!>> I have a question for those on the list who are seeing a> rheumatologist. My question is; did you test postive for Rheumatoid> arthritis on a blood test? Or were you refered to a rheumatologist for> the sevre joint pain associated with EN? > I'm curious because I'm still suffering from very serve joint pain> & swelling of my feet and ankles and it's now been just over a month> since the last of the nodules have gone down. When I get up in the> morning I can hardly walk, it's extremely painful just getting down> the stairs to make it to the bathroom in the morning. And

I'm having> to wear ACE ankle braces in order to be able to work. I'm a systems> admin so I mostly sit at work and I have some thing under my desk to> keep my feet elevated. But on the days when I do have to spend more> time standing or walking I really pay for it,by the time I get home I> don't even recognize my own feet and ankles they are so swollen. I've> been on Relafine (NSAID)since the flair-up began back in mid-April.> And on nights when the pain is really bad I take a Vicodin when I go> to bed.> Anyway just curious, I've been debating returning to the Dr. I> haven't been since May 3rd when I was given a shot of Artistacort and> a 16 day run of Prednisone to get the nodules to go down.I have> noticed in the last two days the the gland on the right side of my> neck is swollen again and this was my first sign of something going on> and not

feeling well back in April when this entire thing started. I> had, had EN in my 20's and then no full blown flair-ups again until> this year at age 45. I have had strange episodes of fevers and swollen> glands & fatigue for 20 yrs or so that no Dr. could ever explain.> Which makes me very reluctant to seek medical attention. Because I've> found sometimes when Dr.'s can't figure out what's going on with you> they tend to make it that it's you or all in your head kind of thing,> that you're not REALLY ill and you're wasting their time.> So any opinions, infomation or thoughts on seeing a Rheumatologist> or if I should think about going back to the Primary care Dr. and> discuss these issues and symptoms.> > jewells> EN- 1983 and 2006>

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[Guest guest]

Hi, My name is and I am new to this group. I wanted to comment on Jewells E-Mail regaurding Birth control pills and EN. I too originally began having symptonms of EN when I was on birth control pill when I was 22 yrs old. I had red lumps up and down both shins. My doctor immediatley took me off the pill and gave me prescription diuretics. Within 2 weeks they were completly gone. I am now 32yrs old and have not taken birth control ever scince the first episode, but developed the same symptoms about 9 months ago. Not quite so bad this time. I only have it in my right leg. It started with just one knot and over the last 4 months have developed 2 more. They never completely go away they just fade in and out flaring up about once a week. I had a biopsy 3 weeks ago and have definatley been diagnosed with EN. I was also tested for lupus, strep, and valley fever since I live in AZ. Everything came back negative. I also have

Hepatitis C and wonder if it may have something to do with my EN, since is a viris. I talked to a friend how is a acupuncturist and she thinks it is the Hep C trying to make its way out of my body. However I did go through treatment with peg-intron and ribivarin ( for HEP C ) for 6 months and have been in remission for a year and a half now. If anyone has any insight please let me know. All the help my dermatologist gave me was lets wait to see if it gets worse before we do anymore testing. Thanks, tte

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