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Sclerodactyly & Ild


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8 replies to this topic

#1 Clementine

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Posted 10 October 2007 - 10:51 AM

Hello,
I just got my DR report in the mail. This is the first report that states that I have Sclerodactyly. My Dr didn't mention this to me while in the office but he did note that my hands were not as puffy as they were in the past. I've lost four lbs...ha ha...that is probably why. Anyway, they don't appear to be curling, but they are puffy and my knuckles look odd. Is that a sign of sclerodactyly?

Next question...I have ILD, but does that always mean pulmonary fibrosis? I am now confused after reading some recent posts. My dr has never used the term pulmonary fibrosis. I know I have ground glass and some scarring, so I guess that means fibrosis...

Thanks,
Tangie

#2 Margaret

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Posted 10 October 2007 - 01:20 PM

Hey Tangie ,

I don't have any answers to your questions but want to say I 'love' the new picture of you.

Take care, Everyone.
Margaret

#3 Patty

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Posted 10 October 2007 - 03:06 PM

hey girlfriend!!

I have Sclerodactyly. My right hand is worse then my left. My fingers are puffy and bent slightly. They look strange kind of curled and bent to the side. I got a RX for hand splints but when I got them, I could not put them on. The medical supply store is looking for better ones for me. I Use a ball to work my hands and I do finger exercises like touching my thumb to all my fingers and a couple other ones.

Do you plan on calling your Dr to find out why he didn't say anything to you about this? Let us know if you do and what he says.
Hugs,
Patty

If Life hands you lemons, make lemonade.

Hashimoto's thyroiditis, Limited scleroderma, Dermatomyositis. Diastolic Dysfunction, dysphagia, Fibro, restless leg. Lupus is a maybe.

#4 barefut

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Posted 10 October 2007 - 04:07 PM

Hi Tange,

I have read different things about sclerodactyly some information just saying it is the curling of the fingers, other info saying it also involves the thickening of fingers.

I guess the thickening can be considered "mild" or beginning stages of sclerodactyly. My doctors said I have it too although I have no curling. I have obvious thickening in the first and middle fingers of both hands but it is worse in my dominant hand (right). You cannot pinch the skin on the knuckles of those fingers.

My rheumatologist keeps a close eye on the skin on the backs of my hands and is always excited when she sees it is still very moveable. (She is so cute.)

My hands have lost some range of motion and they tire easily. When they swell, the skin at the base of my nails splits open and bleeds. It's amazing how something so tiny can hurt so bad! I keep about 17 different kinds of moisturizer around! (I'm always trying new stuff)

Anyway, that's my 2 cents.....

Keep 'em warm!
Love ya,
Barefut

#5 janey

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Posted 10 October 2007 - 04:42 PM

Hey Darlin'

Here's our information on Sclerodactyly.

It does say "The initial stage is swelling (edema), which can last for weeks, months, or years. Often the swelling is intermittent and worse in the morning. It can cause the fingers to look like sausages, with far fewer wrinkles. Skin tightness in the hands can make it impossible to pinch the skin on the fingers."

Start doing those hand exercises It will help. It sure helped me.

In reference to ILD - ILD is a general term for a variety of lung diseases that characterized by scarring and inflammation. Fibrosis due to CTD is a type of ILD. Hope this helps.

Big Hugs,
Janey Willis
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)

#6 peanut

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Posted 10 October 2007 - 08:47 PM

Hey Tangie,
The fingers on my right hand slightly curl. I think I read somewhere that the tendons thicken... I dunno. They use to get puffy but that was years ago. Now they just ache and are weak. The other day I made hubby finishing cutting carrots because it was just too hard. Stretches and daily paraffin baths help with mobility. Heating up a moist towel in the microwave... carefully taking the towel out, wrapping it in a dry towel and wrapping that whole thing around your hand also helps. A little trick from the hand rehab people.

I use the terms ILD and Pulm fibrosis interchangeably... technically they're different but most people don't know that and they also don't know what ILD is... interstital whosawhatsit?

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#7 Curt

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Posted 14 October 2007 - 03:40 PM

I have severe contractures in both of my hands which is pretty much the last stages of Sclerodactyly. They have no motion and my skin is pretty much rock hard. It took about a year and a half for this to happen, but they started out like what you are describing. I am in no way saying that you will end up like me, just simply that my problems started out much like yours. As a precaution I would strongly suggest wearing soft cushiony casts/splints on your hands at night to keep them from ever contracting. I wish I had done this in the early stages and perhaps I could have avoided all this. I cannot stress how important stretching is either! I am in no way perfect and dont do it as often as I should, but when I do I can feel a difference. Nothing fancy either, just try and stretch every finger for 15seconds or so 1 or 2 times a day when your watching tv etc. If you need help finding some night splints or stretching tools/toys I can certainly make some good suggestions!


I hope everything is going well!
-Curt-

#8 barefut

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Posted 15 October 2007 - 01:52 AM

A good place to mention my dream lastnight....

I dreampt that my pinky fingers on both hands started turning outward at a 90 degree angle beginning at the first knuckle. It happened overnight and without any pain.

I am the queen of weird dreams...

B

#9 peanut

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Posted 15 October 2007 - 02:21 AM

I had a dream that my pulse was too high so they gave me more meds on top of the meds I'm already taking... and I started to cry. A person can only take so many meds before they are what they eat.

Good thing my cat was in my dream to comfort me.

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...