Re: Question for Zena re: Dermatomyositis

January 4, 2008

MB,

I didn't even know you were having this trouble. Sorry, you don't need this now. This is your rest period. Hope it isn't serious.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Zena,> I know you won't see this for a bit because of the time difference but I was wondering if you could share with me what kinds of symptoms you have/had from the dermatomyositis? How was it diagnosed? My doctor is planning a biopsy of the rash and blistering on my hands but I'm having alot more fatigue recently and some muscle and joint pain. I was wondering if you had those kinds of symptoms?> Anything you'd care to share I would greatly appreciate. I feel like my body is revolting against me. LOL> > Beth in NC age 48 Fibrotic NSIP 06/06>

January 4, 2008

This is Babs in Texas. I have DM also. It first presented itself with

extreme muscle fatigue. Could barely lift my arms over my head. Then

it was the rash over the eyes. My eyelids turned purple and were

swollen, then scaley and itchy until I thought I would go bonkers.

Next came the muscle fatigue in my legs. It felt to me that this must

be what it's like to walk through quicksand or one of those weird

dreams where you're trying to run or walk and making no progress.

I still have problems though my eyes haven't been as bad in years. My

arm and leg muscles aren't as bad either. It seems to come in flares,

like my lupus flares.

I have several auto-immune diseases including fibromyalgia,

scleroderma, lupus, raynaud's, sjogren's and rheumatoid

arthritis...possibly crohn's.

Rest, rest and more rest. Lots of fluids, just as if you had the flu

or a cold. Aleve or Ibuprofen. These all help me and are what my Doc

has said to do.

Hope that helps!

Hugs, and best wishes for rest and relief.

Babs in Texas

> >

> > Zena,

> > I know you won't see this for a bit because of the time

difference but

> I was wondering if you could share with me what kinds of symptoms

you

> have/had from the dermatomyositis? How was it diagnosed? My doctor

is

> planning a biopsy of the rash and blistering on my hands but I'm

having

> alot more fatigue recently and some muscle and joint pain. I was

> wondering if you had those kinds of symptoms?

> > Anything you'd care to share I would greatly appreciate. I feel

like

> my body is revolting against me. LOL

> >

> > Beth in NC age 48 Fibrotic NSIP 06/06

> >

>

January 5, 2008

The stress of a move like that can cause every part of your body to

react. Not at all uncommon to see it come out in ways from allergies

to skin. Also, your body is adjusting to a new environment and

everything in the air, the humidity, temperatures, pollen, just the

natural plants and trees are all different. It may seem minor but not

in our especially sensitive stages, but your system is actually being

widely exposed to things in the air it has never experienced. (Ever

seen so many pine trees in your life?) However, regardless, it still

means you need to see your doctor about all of it.

I lived in NYC for a year, moved to Miami. I adjusted to humidity and

salt air, so every time I flew back to NY for a day or two my throat

got scratchy. I had a friend lived his entire life in OK. He worked

six months in Puerto Rico, went home for the holidays, could not keep

enough lotion and chapstick on to protect himself against the dry

winds that had never before bothered him.

> >

> > Zena,

> > I know you won't see this for a bit because of the time

difference but I was wondering if you could share with me what kinds

of symptoms you have/had from the dermatomyositis? How was it

diagnosed? My doctor is planning a biopsy of the rash and blistering

on my hands but I'm having alot more fatigue recently and some muscle

and joint pain. I was wondering if you had those kinds of symptoms?

> > Anything you'd care to share I would greatly appreciate. I feel

like my body is revolting against me. LOL

> >

> > Beth in NC age 48 Fibrotic NSIP 06/06

> >

>

January 5, 2008

Hey Beth!

Take good care of your sweet self! Sorry you are ITCHING! I have atopic dermatitis or eczema. In the past, I have had major problems but try so hard to keep it in control. I think we are just wearing out.

Toodles!

Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl

> >> > Zena,> > I know you won't see this for a bit because of the time difference but I was wondering if you could share with me what kinds of symptoms you have/had from the dermatomyositis? How was it diagnosed? My doctor is planning a biopsy of the rash and blistering on my hands but I'm having alot more fatigue recently and some muscle and joint pain. I was wondering if you had those kinds of symptoms?> > Anything you'd care to share I would greatly appreciate. I feel like my body is revolting against me. LOL> > > > Beth in NC age 48 Fibrotic NSIP 06/06> >>

January 5, 2008

Hi Bruce,

Thanks for the input and yes to some extent I think that some of my symptoms (especially the fatigue) are products of the move and the adjustment to new surroundings.

The rash on my hands however predates my move to NC. It actually started back in the fall of 2005 well before my PF was diagnosed. I've always had dry skin so I didn't give it alot of thought at first and I certainly didn't associate it with my respiratory symptoms. Once I was diagnosed I was put on high doses of prednisone and the rash (for lack of a better phrase, it's not really a "rash") disappeared. My hands stayed clear till about September of this year (6 or 7 months since I had been off the prednisone) When I saw Dr. on at Duke last month I showed him my hands and asked him what he thought. He said right off that this was likely a symptom of some type of connective tissue disease and mentioned Dermatomyositis as a likely culprit. He said there is actually a name for this type of rash, it's called "mechanics hand" because my hands look as though I've worked all my life

as a mechanic (minus the grease of course LOL) rough, dry, calloused, peeling gross. He wants to biopsy the rash at some point and do more bloodwork. We agreed to wait a bit to get any of that done for a couple of reasons. First I'm stable at the moment so there is no great rush and I am still working on getting Medicaid coverage in NC so I can't afford the tests without it.

The rest of my transition to living down here has been relatively easy. Maybe because I've spent so much time in NC prior to living here. The biggest source of stress honestly is living in much closer quarters with my 73 year old parents. It's an adjustment, no matter how much I love them and how much they love me. It's a process and it will be fine because it has to be fine.

So that's the story mornin glory, again thanks for the input. I appreciate it!

Beth in NC age 48 Fibrotic NSIP 06/06

Re: Question for Zena re: Dermatomyositis

The stress of a move like that can cause every part of your body to react. Not at all uncommon to see it come out in ways from allergies to skin. Also, your body is adjusting to a new environment and everything in the air, the humidity, temperatures, pollen, just the natural plants and trees are all different. It may seem minor but not in our especially sensitive stages, but your system is actually being widely exposed to things in the air it has never experienced. (Ever seen so many pine trees in your life?) However, regardless, it still means you need to see your doctor about all of it. I lived in NYC for a year, moved to Miami. I adjusted to humidity and salt air, so every time I flew back to NY for a day or two my throat got scratchy. I had a friend lived his entire life in OK. He worked six months in Puerto Rico, went home for the holidays, could not keep enough lotion and chapstick on to

protect himself against the dry winds that had never before bothered him. > >> > Zena,> > I know you won't see this for a bit because of the time difference but I was wondering if you could share with me what kinds of symptoms you have/had from the dermatomyositis? How was it diagnosed? My doctor is planning a biopsy of the rash and blistering on my hands but I'm having alot more fatigue recently and some muscle and joint pain. I was wondering if you had those kinds of symptoms?> > Anything you'd care to share I would greatly appreciate. I feel like my body is revolting against me. LOL> > > > Beth in NC age 48 Fibrotic NSIP 06/06> >>

January 5, 2008

My sweet mountain climbing, chicken dancing buddy. Did you forget"NO GETTING SICK" or other stuff.I know it has to be hard living with someone else. Just don't forget you can always run away. to me. hee heeJust be sure your up to the drive. Love and Prayers, Peggy ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Hi Bruce,Thanks for the input and yes to some extent I think that some of my symptoms (especially the fatigue) are products of the move and the adjustment to new surroundings.The rash on my hands however predates my move to NC. It actually started back in the fall of 2005 well before my PF was diagnosed. I've always had dry skin so I didn't give it alot of thought at first and I certainly didn't associate it with my respiratory symptoms. Once I was diagnosed I was put on high doses of prednisone and the rash (for lack of a better phrase, it's not really a "rash") disappeared. My hands stayed clear till about September of this year (6 or 7 months since I had been off the prednisone) When I saw Dr. on at Duke last month I showed him my hands and asked him what he thought. He said right off that this was likely a symptom of some type of connective tissue disease and mentioned Dermatomyositis as a likely culprit. He said there is actually a name for this type of rash, it's called "mechanics hand" because my hands look as though I've worked all my life as a mechanic (minus the grease of course LOL) rough, dry, calloused, peeling gross. He wants to biopsy the rash at some point and do more bloodwork. We agreed to wait a bit to get any of that done for a couple of reasons. First I'm stable at the moment so there is no great rush and I am still working on getting Medicaid coverage in NC so I can't afford the tests without it.The rest of my transition to living down here has been relatively easy. Maybe because I've spent so much time in NC prior to living here. The biggest source of stress honestly is living in much closer quarters with my 73 year old parents. It's an adjustment, no matter how much I love them and how much they love me. It's a process and it will be fine because it has to be fine. So that's the story mornin glory, again thanks for the input. I appreciate it! Beth in NC age 48 Fibrotic NSIP 06/06 Re: Question for Zena re: DermatomyositisThe stress of a move like that can cause every part of your body to react. Not at all uncommon to see it come out in ways from allergiesto skin. Also, your body is adjusting to a new environment and everything in the air, the humidity, temperatures, pollen, just the natural plants and trees are all different. It may seem minor but not in our especially sensitive stages, but your system is actually being widely exposed to things in the air it has never experienced. (Ever seen so many pine trees in your life?) However, regardless, it still means you need to see your doctor about all of it. I lived in NYC for a year, moved to Miami. I adjusted to humidity and salt air, so every time I flew back to NY for a day or two my throat got scratchy. I had a friend lived his entire life in OK. He worked six months in Puerto Rico, went home for the holidays, could not keep enough lotion and chapstick on to protect himself against the dry winds that had never before bothered him. > >> > Zena,> > I know you won't see this for a bit because of the time difference but I was wondering if you could share with me what kinds of symptoms you have/had from the dermatomyositis? How was it diagnosed? My doctor is planning a biopsy of the rash and blisteringon my hands but I'm having alot more fatigue recently and some muscle and joint pain. I was wondering if you had those kinds of symptoms?> > Anything you'd care to share I would greatly appreciate. I feel like my body is revolting against me. LOL> > > > Beth in NC age 48 Fibrotic NSIP 06/06> >>

January 5, 2008

Peggy,

Oh my MCCD buddy (that's mountain climbing, chicken dancing) please don't worry 'bout me. The most important thing from my point of view is that my breathing is right where it's been since I was diagnosed. O2 use is the same and sats are stable so I really have nothing to complain about.

In some ways this may be good news. If I have a connective tissue disease there is something to treat and that treatment may slow the fibrosis. Sometimes a new doctor and a fresh perspective is a good thing, right?

Trust me dear one, I will be running away to you for a visit. GUARANTEED! Just need to get some rest and make sure my parents are settled and acclimated. They are only 73 but they are an "old" 73.

Love,

Beth in NC age 48 Fibrotic NSIP 06/06

Re: Question for Zena re: Dermatomyositis

The stress of a move like that can cause every part of your body to react. Not at all uncommon to see it come out in ways from allergiesto skin. Also, your body is adjusting to a new environment and everything in the air, the humidity, temperatures, pollen, just the natural plants and trees are all different. It may seem minor but not in our especially sensitive stages, but your system is actually being widely exposed to things in the air it has never experienced. (Ever seen so many pine trees in your life?) However, regardless, it still means you need to see your doctor about all of it. I lived in NYC for a year, moved to Miami. I adjusted to humidity and salt air, so every time I flew back to NY for a day or two my throat got scratchy. I had a friend lived his entire life in OK. He worked six months in Puerto Rico, went home for the holidays, could not keep enough lotion and chapstick on to protect himself against the dry winds that had never before bothered him. > >> > Zena,> > I know you won't see this for a bit because of the time difference but I was wondering if you could share with me what kinds of symptoms you have/had from the dermatomyositis? How was it diagnosed? My doctor is planning a biopsy of the rash and blisteringon my hands but I'm having alot more fatigue recently and some muscle and joint pain. I was wondering if you had those kinds of symptoms?> > Anything you'd care to share I would greatly appreciate. I feel like my body is revolting against me. LOL> > > > Beth in NC age 48 Fibrotic

NSIP 06/06> >>

January 5, 2008

Establish the boundaries now. I'm referring to you and your parents.

It can become a problem and I mean you can't establish like a

published list or rules, although would be nice. But, start

saying " no " soon so they know being close doesn't mean unlimited you

come to them or them come see you. My ex-wife lives 1 hour away from

her mother partly for that reason and its still tough. Her mother

tried to trick her (knowing she was exhausted) one day into a trip

over because she had to have groceries and didn't feel like going.

The list was 7 items. And when she said no, her mother had no problem

going. After all she didn't have to go much further than where she

was going for lunch already.

I have no idea what my skin problems are but seem to have calmed down

a bit. Last dermatologist I went to was an idiot. Evidence one wanted

to give me prednisone. Been prescribing 32 years he said and never

heard anything about anyone having mood changes. Evidence two, I

couldn't be scratching in my sleep, although he didn't offer

explanation of why no blood when I went to sleep and blood when I

woke. Oh well.

> > >

> > > Zena,

> > > I know you won't see this for a bit because of the time

> difference but I was wondering if you could share with me what

kinds

> of symptoms you have/had from the dermatomyositis? How was it

> diagnosed? My doctor is planning a biopsy of the rash and

blistering

> on my hands but I'm having alot more fatigue recently and some

muscle

> and joint pain. I was wondering if you had those kinds of symptoms?

> > > Anything you'd care to share I would greatly appreciate. I feel

> like my body is revolting against me. LOL

> > >

> > > Beth in NC age 48 Fibrotic NSIP 06/06

> > >

> >

>

January 5, 2008

Beth.

Darn...oxygen depreivation. Forgot you lived in same house, but

still....boundaries. You're not their slave. When time comes either

you or they need home health care, bring it in, nor for either of you

to do.

> > > >

> > > > Zena,

> > > > I know you won't see this for a bit because of the time

> > difference but I was wondering if you could share with me what

> kinds

> > of symptoms you have/had from the dermatomyositis? How was it

> > diagnosed? My doctor is planning a biopsy of the rash and

> blistering

> > on my hands but I'm having alot more fatigue recently and some

> muscle

> > and joint pain. I was wondering if you had those kinds of

symptoms?

> > > > Anything you'd care to share I would greatly appreciate. I

feel

> > like my body is revolting against me. LOL

> > > >

> > > > Beth in NC age 48 Fibrotic NSIP 06/06

> > > >

> > >

> >

>

January 5, 2008

Hi Beth, sorry, I haven't replied sooner, I haven't turned my laptop on for a while.

The first thing I noticed was stiffening and pain in my joints. I went from being quite agile to not being able to bend down to turn off a plug in a matter of a couple of weeks. The pain and stiffness got worse and worse, but my doctor kept testing for arthritis which came back negative. Despite that he still put me on drugs for arthritis, although they weren't much help.

I also started getting very very dry skin on both my index and middle fingers which would crack and bleed, and my knuckles swelled up and were red and shiney, causing someone to ask if I did boxing! I honestly can't remember whether the rash or the pain came first. I was working in a pub at the time and with all the various detergents used for that, initially the skin problems were put down to that.

I was permanently tired. One monday I even went to bed in the evening and didn't wake up until wednesday. I had moved back home with my dad by then and he came in on the wednesday, understandably quite worried.

I also started getting lots of chest infections which would clear up for a while with antibiotics, but soon come back again.

Some of the symptoms wore off a little after a while and my doc thought that the meds were finally working. The rashes were still there though. As I had a lot of stress in a short space of time before the symptoms started my doc kept telling me it was stress and that I needed to relax.

Eventually a doctor decided I needed to go into hospital as I had yet another chest infection, and was really quite poorly, although at the time I was hallucinating like mad and having a whale of a time!

I was lucky in hospital as the registrar had just dealt with a case of pulomary embolism, which was the reason for my recurrent infections, so I was put on lots of machines and meds and stuff. While he was at it, another doc had recently dealt with a lupus patient and wondered if I had the same. I didn't, but the blood tests showed DMS Jo1 syndrome. They also discovered the anti cardio lipin, anti-phospho lipid problem which caused the pulmonary embolisms.

I can't remember the name of the diagnostic test, but it involved sticking a couple of needles in my leg and taking a reading. As the blood tests and that particular test were positive they didn't see the point of a biopsy to tell them what they already new.

I think that's about right, but I'm bound to have forgotten some of it as this was all between 1993 and 1995, feel free to ask me anything that I might have missed

Love Ze xx Dermatomyositis, Pulmonary Fibrosis and a few more, dx 1995

>> Zena,> I know you won't see this for a bit because of the time difference but I was wondering if you could share with me what kinds of symptoms you have/had from the dermatomyositis? How was it diagnosed? My doctor is planning a biopsy of the rash and blistering on my hands but I'm having alot more fatigue recently and some muscle and joint pain. I was wondering if you had those kinds of symptoms?> Anything you'd care to share I would greatly appreciate. I feel like my body is revolting against me. LOL> > Beth in NC age 48 Fibrotic NSIP 06/06>

January 5, 2008

MB could your hands be psoriasis (sp)? Just a shot in the dark.

I'm sure sorry you are dealing with this now. I wish answers for you.

Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there!

Re: Question for Zena re: Dermatomyositis

MB,

I didn't even know you were having this trouble. Sorry, you don't need this now. This is your rest period. Hope it isn't serious.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Zena,> I know you won't see this for a bit because of the time difference but I was wondering if you could share with me what kinds of symptoms you have/had from the dermatomyositis? How was it diagnosed? My doctor is planning a biopsy of the rash and blistering on my hands but I'm having alot more fatigue recently and some muscle and joint pain. I was wondering if you had those kinds of symptoms?> Anything you'd care to share I would greatly appreciate. I feel like my body is revolting against me. LOL> > Beth in NC age 48 Fibrotic NSIP 06/06>

January 5, 2008

Thanks Sher but it's not psoriasis. That was ruled out by my derm back in NY. He had no idea what it was, he just kind dismissed it as allergic dermatitis told me to get some cortisone cream and sent me on my way. That was over 2 years ago. It doesn't look like psoriasis either. Dr. on was actually not surprised at what I showed him and had a ready explanation. We'll see how it pans out but it does make some sense.

Love,

Beth in NC age 48 Fibrotic NSIP 06/06

Re: Question for Zena re: Dermatomyositis

MB,

I didn't even know you were having this trouble. Sorry, you don't need this now. This is your rest period. Hope it isn't serious.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Zena,> I know you won't see this for a bit because of the time difference but I was wondering if you could share with me what kinds of symptoms you have/had from the dermatomyositis? How was it diagnosed? My doctor is planning a biopsy of the rash and blistering on my hands but I'm having alot more fatigue recently and some muscle and joint pain. I was wondering if you had those kinds of symptoms?> Anything you'd care to share I would greatly appreciate. I feel like my body is revolting against me.

LOL> > Beth in NC age 48 Fibrotic NSIP 06/06>

January 5, 2008

Zena,

Thanks so much for the response!! I really appreciate it. Whatever is going on with me is not nearly as severe as what you describe which is one reason my doctor has put off doing the testing I suppose.

I'm definitely noticing a decrease in my overall strength and agility. And I'm much more tired than I had been but we'll see what happens.

It's all so weird isn't it?