Re: Idiopathic is a pain.......

[Guest guest]

Hi ,

I'm with you on this... moveing is the best thing for all of us. If we just do nothing we will cease to be able to move.... all the joints will stiffen up. Sometimes it take a lot more effort but I do believe it is worth getting up and moveing as much as we can without over doing it... Keep going , I do believe you have the right idea.

Jackie

Idiopathic is a pain.......

Hi , I hope all is well with you and that this message finds you and the rest of the group in good spirit, well rested, and pain free. I wanted to share my EN experience as of lately with you. The Rhematologist that I am seeing felt that I didn't have EN. He was sure it panniculitis so he ordered a biopsy. A punch biopsy was done on my upper thigh. The area is healing with lots of keloid and still hurts. The results of course suggested Hypersensitivity VS a fungal imfection, not to rule out acute transient Sarcoid. during this time I have faithfully taken my medications with no relief. I am still in a flare, not bad, two nodules per leg. The arthralgia in my hands is unreal....I wake up in the morning and can barely make a fist. Despite the pain I stretch my fingers and move them to get my hands working in the morning. I have made it a habit to play the piano everyday to keep them from stiffening up. My GP decided to run blood tests again. They only thing alarming was my cholestrol. LDL 189 HDL 20 Triglycerides 174. The Angiotensin (SP)?Converting Enzyme was normal. RA factor was lower than the last time, ANA/normal, ASO/Normal, ESR was a 2.... So I fiqure what is the purpose of the RA Meds. The joint pain is related to the EN. I guess it is chronic idiopathic Erythema nodosum. This Flare has lasted now for 2+ years, with no relief. March it will be 3 years. As much as it hurts I am going to get up and keep my body parts moving. Thanks for letting me vent....... I hope everyone has a great weekend

[Guest guest]

I wake up with the same pain . . . the hands are so stiff, as well as

my back and ankles . . . it really sucks! It does get better, the

move we move . . . but we wake up with it all over again in the

morning! It's like the illness settles in our joints overnight . . .

kinda like how gout works. Oh, well, right? So nice that you play

the piano! There's nothing like home-grown music in the house. My

dad played all the time . . . and now my husband does! Just love it!

Keep that and the shins up!

M

>

> Hi ,

>

> I hope all is well with you and that this message finds

> you and the rest of the group in good spirit, well rested, and pain

> free.

>

> I wanted to share my EN experience as of lately with you. The

> Rhematologist that I am seeing felt that I didn't have EN. He was

> sure it panniculitis so he ordered a biopsy. A punch biopsy was

done

> on my upper thigh. The area is healing with lots of keloid and

still

> hurts. The results of course suggested Hypersensitivity VS a

fungal

> imfection, not to rule out acute transient Sarcoid. during this

time

> I have faithfully taken my medications with no relief. I am still

in

> a flare, not bad, two nodules per leg.

> The arthralgia in my hands is unreal....I wake up in the

morning

> and can barely make a fist. Despite the pain I stretch my fingers

and

> move them to get my hands working in the morning. I have made it a

> habit to play the piano everyday to keep them from stiffening up.

My

> GP decided to run blood tests again. They only thing alarming was

my

> cholestrol. LDL 189 HDL 20 Triglycerides 174. The Angiotensin (SP)?

> Converting Enzyme was normal. RA factor was lower than the last

> time, ANA/normal, ASO/Normal, ESR was a 2.... So I fiqure what is

> the purpose of the RA Meds. The joint pain is related to the EN. I

> guess it is chronic idiopathic Erythema nodosum. This Flare has

> lasted now for 2+ years, with no relief. March it will be 3 years.

As

> much as it hurts I am going to get up and keep my body parts

moving.

> Thanks for letting me vent.......

>

> I hope everyone has a great weekend

>

>

[Guest guest]

m,

i saw my doc friday. i asked him about alternatives to celebrex. i

found info on lodine (generic is etodoloc) and also naproxen. doc

felt neither would bother my crohns but based on research the lodine

appears to bother gi even less, about 60% as compared to naproxen via

a study done. lodine is in the same class as celebrex, not a cox 2,

but he explained there are like 7 classes and if celebrex works, then

lodine should also be okay. going to experiment. going to pick up

the rx tomorrow. lodine is many, many, MANY times cheaper than

celebrex. oh and btw, absolutely NO cardovascular issues with

lodine. it has been out since 1991, so it has had plenty of time to

develop a history. just thought you might like to know.

jeff (the one) :-0

>

> I wake up with the same pain . . . the hands are so stiff, as well

as

> my back and ankles . . . it really sucks! It does get better, the

> move we move . . . but we wake up with it all over again in the

> morning! It's like the illness settles in our joints

overnight . . .

> kinda like how gout works. Oh, well, right? So nice that you play

> the piano! There's nothing like home-grown music in the house. My

> dad played all the time . . . and now my husband does! Just love

it!

>

> Keep that and the shins up!

>

> M

[Guest guest]

I'm glad you found a new alternative! Did you ask about guiafen??

for your upper resp clutter?? There's a new one out, saw a

commercial with a green Jabba the Hut type monster moving into the

lungs =) I wrote the name down for you, but have since lost that

piece of paper! No idea if it works, what's in it, etc . . . but I

do know about guiafen! Probably best to stick to the old meds, just

as you've found with the Lodine. Congrats on that and I hope it

helps!

M =)

> >

> > I wake up with the same pain . . . the hands are so stiff, as

well

> as

> > my back and ankles . . . it really sucks! It does get better,

the

> > move we move . . . but we wake up with it all over again in the

> > morning! It's like the illness settles in our joints

> overnight . . .

> > kinda like how gout works. Oh, well, right? So nice that you

play

> > the piano! There's nothing like home-grown music in the house.

My

> > dad played all the time . . . and now my husband does! Just love

> it!

> >

> > Keep that and the shins up!

> >

> > M

[Guest guest]

hi m,

actually i did. and it works great. i was on this about a month ago

for sinus infection, didn't even realize it until i picked up the

bottle with a few tabs in it and saw it was identical to the new rx i

just got. funny, doc says, " only thing to remember about this is

that sometimes its hard to pee " . lol. he is right. sometimes he

has patients call him back that he forgot to tell and they yell at

him for not telling them...lol. i learned that the first time i took

one. funny, the insert does not say anything about it, that i recall

anyway. i take it when i need it, about every other day, just one in

the am.

okay, dumb or dumber here.... " neo " ??? huh? clueless here.

jeff

>

> I'm glad you found a new alternative! Did you ask about guiafen??

> for your upper resp clutter?? There's a new one out, saw a

> commercial with a green Jabba the Hut type monster moving into the

> lungs =) I wrote the name down for you, but have since lost that

> piece of paper! No idea if it works, what's in it, etc . . . but I

> do know about guiafen! Probably best to stick to the old meds,

just

> as you've found with the Lodine. Congrats on that and I hope it

> helps!

>

> M =)