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Scary changes to my hands


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#1 celiesblues

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Posted 18 October 2008 - 01:21 PM

Hi there,

I'd appreciate your help.

I was diagnosed with the secondary form of raynaud's last year after about 4 years of symptoms. It was conisdered secondary by my dermo/rheumotologist because I have the feature (can't remember the medical name) where skin grows up behind my nails onto the nail itself.

I took a series of blood tests but nothing turned up.

This year my raynaud's is in overdrive and my hands are deteriorating but something fundimentally different than before is occuring.

My fingter tips have perminant lines down them and become wrinkled like prunes (like they've been submerged under water for hours) when I'm slightly cold. The quality of the flesh is bizarre... it's more like silly putty than flesh. I touch anything and the flesh indents and stays that way for disturbingly long periods of time. I cut my food with a knife an fork and have deep indentations that remain... I set my alarm clock and the finger that pushed the button has a huge crater that remains for 10-15 minutes.

Now, on the side of my index finger, at the tip, where my thumb nails meets skin when I hold a pen to write has become hard, numb and white. It looks like my fingerprint is disappearing in this patch and the indent when I write (trying to be wary) is so deep and frightening. It seems like dead flesh.

The skin is so dry in general that it's cracking open all over.... over a week ago the skin on the side of both my thumbs cracked open really deep and is very hard to get to heal. It's so much worse than last year and the temperture is still in the 60's (I'm in NYC).

I had strongly suspected scleroderma last year (when we began looking for an autoimmune explanation) because of the myriad of other symptoms that were layering on for years... I've seen so many doctors for these varying things with no explanation

I'm 30 (female) and have been loosing my hair for at least 5 years (that's when I noticed, at least)... something that seems to have excellerated in this last yr... extreme dry eye (in winter I have to use drops several times a day and have gotten abrasions when I didn't). Near continual chest pain, the hands that are fragile and cracking open and... in the mornings swollen and stiff... all my joints are swollen and stiff in the morning.

I made an appointment withthe dermo/rheumotologist for next tues... because, I'm quite frankly terrified about my hands. All the fingeritps are sensative and these strange perminent lines... maliable flesh...


Do these recent changes to my hands sound like scleroderma to you guys... is this what "digital pitting" is?? I keep googling but can't find an explanation I understand for digital pitting. Do the perminant lines and silly putty flesh seem familiar??

I'm so scared.... even now, I'm typing with out my index finger (it's so sensative).

I'd really appreciate any help or insight you guys my have.

Something is just so .... wrong :-((

#2 janey

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Posted 18 October 2008 - 03:32 PM

Celies Darlin',
Welcome to the ISN forums. I'm so sorry that you have joined us due to the problems you are having with your raynaud's and fingertips. My fingertips were very sore, tender, and dry when I was first dealing with Raynaud's. Please be sure to keep your body warm so that you maintain circulation to your fingers. By avoiding the Raynaud's attacks you may be able to reduce the tenderness.

I'm glad to read that you are seeing a dermatologist and rheumatologist this week. Please be sure take in a written list of all of your symptoms so you can talk to your doctors about them. You definitely have several symptoms that need to be addressed. Please let us know how the appointments go and what you find out. We're all here for your Darlin'.

Big Hugs,
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#3 canon

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Posted 18 October 2008 - 05:08 PM

Welcome Celies,

Sorry you are having trouble with your fingers and raynauds. Raynauds can be very painful and unpredictable. Mine seem to go through different phases also, especially as of late but not like yours. The doctors you are going to see can hopefully give you some type of treatment and more answers. Janey has provided good information for you.

Take care of yourself and keep us posted.

Judy
A happy heart is good medicine.

#4 jefa

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Posted 18 October 2008 - 06:41 PM

Let me add my welcome to the ISN Sclero Forums, celiesblues. I am not a doctor and it is impossible for any of us to make a diagnosis or even an informed opinion without a physical examination and the appropriate tests, but what you describe sounds more like pitting edema. Here is a MedicineNet.com article on Edema (Pitting and Non-Pitting) which explains the difference. It is my understanding that the finger swelling that comes in the first stages of scleroderma is of the non-pitting variety. Whatever the cause, it is good you are seeing someone about it. Let us know what your doctors say.
Warm wishes,
Jefa

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#5 anonym4444

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Posted 18 October 2008 - 08:05 PM

Hi,

please keep us postet, what they find out, as I have some of the same stuff (search for my posts or answers) that you describe...however without Raynauds.

I guess here it is not about pitting or non-pitting (at least in my case and yous sounds similar)...the reason for the long indentation is very dry and less flexible skin on the tips..and other parts. Edema in my case is on the lower parts of the fingers...but while it is no soft it is also not totally hard so that you couldn't pit it.

However the index tip feels like dead skin....and if you work with something that is dry, then this skin is more like plastic (you can squeeze it on both sides and it will lift up in the middle and stay that way for a while) and if feels also like the whole area is pushed in if you push even with a needle. In my case it goes down about half of the uppermost part of the index...and then turns into a leathery but at least a bit more flexible remainder of the index... The right index is affected most.

E.g. if I cut and the index pushes the blad of the knife from behind, than this imprint is there for a long time....(or the trackpad)....also this wrinkly stuff (especially in the bathtub it looks way more weired than normal) I got.

I tried to rip of the excess and hard skin of the tip (try that with normal skin...it would not work)...but in this case as it is so hard and dry you can actually rip it with the nails....however what comes back is the same shinny, hard, dry skin and if you rip it off it is tearing strangely (and shows also strange white color in the bathtub...like it is dead). Also no blood when you rip off the uppermost layer...dead stuff? And certainly I am loosing my fingerprints there as well...almost invisible and even less feelable.

With the rest of my symptoms it obviously also brought me here....and it seems that at least 4 people here (plus you) have such similar skin issues and hunt for diagnosis. Strangely they all ended up here....

K.

#6 ez62

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Posted 19 October 2008 - 12:06 AM

Hi-I have alot of changes to my hands as well. You can see a post towards the bottom of this page where I posted about palm changes. Actually though when I read you post, I realized I neglected to mention that my finger tips are almost always wrinkled and raisiny as well, and I have the indentation thing too whenever I hold something. All my bloodwork is negative. Best of luck to you, please keep us posted as to what your dr. says.

#7 isobelle44

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Posted 19 October 2008 - 05:33 AM

I would also be interested in what your doctor says cause I have alot of the same things in my finger tips. I have been diagnosis with morphea for about 18 months, started plaquinil 4 months ago. My whole body just seems so dry. My morphea spots are super dry and very unbendaby uncomfortable and very large spots. But my hands and palms have alot of the same things that have been posted here and on the other post about palms, and actually the top of my hands have puffiness where the fingers meet the hands between the fingers. Not sure if anyone else has noticed that with your hands. Sharon

#8 anonym4444

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Posted 19 October 2008 - 10:15 AM

Hi Isobelle44...

what do you mean with "top" of your hand...is that the inside or outside....

There is a little bit of swelling on the outside (opposite the palm) sometimes where the fingers meet the hand and where normally you can nicely see the tendons...if they are swollen (in my case really only very little and very seldom and again right hand more than left) then you see the tendons less...as they "disappear"...

But the main swelling is in the lowest part of the digits and again mainly towards the index...the more you go to the little one the less the swelling is...and right more than left.

K

I guess it feels so strangs as the normal fluid is missing...it is like dry leather rather than normal skin...

#9 Amanda Thorpe

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Posted 19 October 2008 - 10:56 AM

Hello Celies

I am glad you've found this forum, it's a great help.

Please try not to worry about possible diagnoses because "it is what it is" to quote a member of this forum. In other words you can't effect the outcome by worrying although you are going to be concerned.

That you have lined up appointments with a dermatologist and rheumatologist is excellent and as already advised take written questions with you and if possible another set of ears to listen. It can be hard to take it all in and remember it.

Please keep us posted and take care.

Amanda
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#10 celiesblues

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Posted 19 October 2008 - 11:44 AM

Thanks everyone for your welcome and your replies.

And thank you so much jefa for the article on pitting vs non-pitting edema... I get it now. I'm definitely "pitting" though to look at my fingers, I'd never think there was fluid retention. They're so... deplteted and wrinkley looking.

I was thinking the pitting had to to do with these weird perminant lines down my fingertips... even when I'm as warm as I can get and my fingers are as plump and rosey as they will get there are these weird, perinant lines down them, some very deep.

Does that feature sound familiar to anyone as well?


The doctor I'm seeing on Tues is a dermotologist/rheumotologist who diagnosed my Raynaud's as 2ndry form last year. When the blood tests didn't turn anything up, I tried to push everything out of my mind and the warmer weather helped though my body kept getting less and less familiar. And I was now so cold sensative that it was only the hotest of of the hot summer days (upper 80s & 90 degree) where I found relief from my Raynaud's and didn't have to have some kind of jacket with me. I chill soooo easily now.

My big questions - Can you have normal blood results and have scleroderma??

Thank you again everyone. I was feeling so alone with my fears.

#11 Lyn

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Posted 19 October 2008 - 04:08 PM

When I hold a needle when I quilt, the indentation from it stays forever it seems. It is almost like my fingertips are dehydrated. When I worked at a doctor's office, one test for dehydration was how long it took for the fingertips to rebound. But I am not dehydrated, just my fingertips are! Thankfully I do not have pain, it just feels like everything I touch has a paper layer on it! I would also love to know what your doctor says about it.

#12 summer

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Posted 19 October 2008 - 10:23 PM

I also have I think pitting though it is on my knuckles on my fingers, not on the hand. I first noticed it months ago whilst I was bathing my son. It seems to be very wrinkly and indented when I put my hands in the bath water and apply pressure to my knuckles. When I take my hands out of the water the skin on the knuckles seemed stretched over the bones and I can actually move the skin from side to side if I want to and it stays in place.

Thanks
Celia

#13 lizzie

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Posted 19 October 2008 - 10:56 PM

Hi Celies, you asked if anyone had those permanent lines down their fingertips- I do. I think they are digital pitting scars. I also have pitting odema off the fingers- so that when I write with a pen I get a dent in my finger- I have a definite diagnosis of SSc.

Lizzie

#14 isobelle44

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Posted 20 October 2008 - 01:34 AM

Hi Celiasblues,
I have those permanant lines your talking about on my fingertips as well.

Annomonys4444 Both sides of my hands are swollen where the fingers meet the palm or top (opposite palm), I think as you describe yours, thats right where mine are to. I noticed it about a month ago and have since been watching others hands to see if it is normal. Some have it and others dont. But my worst hand is my left.

I sure would like to know what your doctor says celia. I have an appt coming up myself but its a little ways off. Sharon

#15 Amanda Thorpe

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Posted 20 October 2008 - 11:21 AM

Yes you can have normal bloodwork and have scleroderma e.g. I have a negative ANA and have diffuse SSc. It's important to be aware that no one test can rule sclero in or out but rather a collection of info is required because every sufferer can be so different.

Keep us posted.

Amanda
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#16 Snowbird

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Posted 20 October 2008 - 12:24 PM

Hi Celiasblues

You can also have positive ANA bloodwork and still not have scleroderma yet too.....like Amanda says, a collection of information/symptoms is needed as well. My rheumatologist says the bloodwork assists in the diagnosis but that the other clinical symptoms must also be present for scleroderma (so bloodwork alone is not enough either). Good luck with your appointment tomorrow....hope you come back and keep us updated.
Sending good wishes your way!

#17 celiesblues

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Posted 21 October 2008 - 10:05 AM

Well, my dr had an "emergency" and canceled on me today so I'll be seeing him on Friday instead.


Amanda, snowbird thank you so much... it was never clear to me if the blood tests had difinitively ruled it out.

And now I have a host of more symptoms since I was with him last yr...

And just last night I noticed the skin down the insde of one of my thumbs has begun go harden. Lovely.

I'll let you all know how it goes on Friday.

Anxious, anxious....

#18 celiesblues

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Posted 25 October 2008 - 11:35 AM

Hi everyone,

I saw my doctor on Friday and says he doesn't think what is happening to my hand's is autoimmune as my ANA & RF screen were negative last yr. . He says though my Raynaud's is "secondary form" he thinks it's cause is hormonal (ie the birth control pills I use to control my Poly Cystic Ovarian Syndrome).

He's having me repeat the ANA & RF tests as it's been over 6 months and thinks I should be checking at that rate for a while.

He *also* says (as an eye specialist told me when seeking treatment for abrasions) that he thinks I have sicca syndrom (Sjogren's) because I've tested positive with the Schirmer's test (that measures dryness) and my mouth was coated.

He said that he might want to do a biopsy of one of the glands in my mouth to test for that at a later time.

What is strange to me is that I can find no link, no matter how I search on the net, to Raynaud's and birth control pills. Has anyone every heard this?

And so severe?

And Sjogren's is autoimmune, isn't it?

I hate leaving an realizing all the things you *didn't* ask...

I will see him again in 3 weeksso at least I'll have a second chance.

For the Raynaud's he wants me to start taking L-Arginine (supplement) 3x a day... to help the circulation....

At first I was relieved and reassured but now I'm swirling in those ambiguous loose ends... :-((

#19 jefa

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Posted 25 October 2008 - 11:33 PM

Hi, Celiesblues

I found this information on the MayoClinic.com article about Raynaud's under the Treatments and Drugs section:

Birth control pills. If you use birth control pills, you may wish to switch to another method of contraception because these drugs affect your circulation and may make you more prone to attacks.

Mayo's article on Arginine offers some warnings of danger in some situations (asthma and certain lung conditions, among them). I also came across some medical trial information which warned against use by patients who had previously suffered heart attacks. I would definitely ask my doctor about this if he offered this as a solution.
Warm wishes,
Jefa

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#20 Amanda Thorpe

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Posted 26 October 2008 - 01:45 PM

Hello Celiesblues,

Sorry your appointment has left you with many questions, perhaps writing some down for your next appt would be helpful and taking someone else in with you to remember the replies. My husband always comes with me.

Yes Sjogren's is an autoimmune disease.

Keep us posted and I hope you get some definitive answers after your next appointment.

Take care.

Amanda
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