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Tight but not hard skin?


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#1 luvbnmom3

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Posted 26 March 2009 - 02:01 AM

Hello!

So, I have a question, as scleroderma progresses, does the skin feel hard as it gets tight or what? I ask because my skin on my face is getting tight, I especially feel it around my eye and mouth and my right eye is harder to close. I have hyperpigmentation around the outside corners of both eyes and under my bottom lip.

But, my skin isn't hard at all, it is just getting tighter and tighter! I am frustrated because I know my skin is getting tight, but it isn't hard, so does that mean it isn't scleroderma?

Thank you for your help! I'm sorry I'm not around a ton, I am so busy with school I barely have time to use a kleenex instead of my sleeve. Just kidding! :)

luvbnmom3

#2 Jeannie McClelland

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Posted 26 March 2009 - 03:24 AM

Hi Luvvie,

You know, I've wondered the same thing? Anybody?

Hugs,
Jeannie McClelland
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#3 lizzie

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Posted 26 March 2009 - 04:28 AM

Hi luvbnmom3. I think we must all suffer the same confusion! I think the answer as with most other things with scleroderma is that it varies. My rheumatologist confirms that I have systemic scleroderma (SSc) skin involvement in both face and arms. I had very much the same sensation you describe in my face as well -- the skin is tight, the naso-labial lines have disappeared, but is still soft to the touch. The skin on my arms is also tight -- can't pinch it -- and also feels slightly harder. Even so, this was not what I was expecting from descriptions of skin hardening. It will be interesting to hear others experience.

Lizzie

#4 Shelley Ensz

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Posted 26 March 2009 - 08:11 AM

I will make a lame attempt at answering this, but keep in mind that I am so not a doctor it isn't even funny. But we did have this cute little doctor kit when I was young, however I never could hear anything out of the stethoscope and finally gave up on that career idea in total frustration. I was an adult before I understood that playing doctor was supposed to be more involved -- and fun! -- than that. :blink:

Oh well, now onto this skin hardness question. As I understand it, scleroderma skin involvement has several phases. Some people skip through all the phases extremely fast (like, in a few weeks with rapid onset systemic scleroderma) but most of us have very gradual onset and do not always succeed (thank goodness) in advancing through all the stages.

First, there is usually inflammation and swelling of the affected area. For people with limited systemic sclerosis, the areas would be limited to the hands and/or face. For people with diffuse systemic sclerosis, it could occur anywhere or in several places at once. Most often, though, it would begin in the hands, with the fingers swelling up and looking like sausages, especially early in the morning. Sometimes the swelling might subside a bit during the day. This can also be accompanied by joint pain, stiffness, general feelings of arthritis and systemic complaints such as fatigue (due to the inflammation that is going on.)

It seems to me that sometimes people go through the swelling phase, but never really advance to a good stage of tightening. Oh, it might tighten a little bit, but not especially noticeable, at least, as not as noticeable as the initial swelling phase. Whereas, others will progress and get significant tightness in that area, to the point where you really cannot pinch the skin.

Then, since scleroderma is nothing, if not unpredictable, some people remain at that phase, some people experience skin softening (a natural or drug-induced remission) and some progress to the phase of skin hardening, where the affected area becomes hard as a rock and gives off a shiny and totally unpinchable appearance.

Then, believe it or not, some people get skin tightening from literally head to toe, remain that way for awhile, and a few of them will also experience a phase (or, another phase) of regression. When the skin starts softening at this time, it is my understanding that it usually begins at the head and goes downward. Sometimes people report the last areas affected are the first to soften. Although this should be a totally positive event, in some people, the softening begins and then things take a fatal turn just when hope for a full recovery is at hand. This is what happened with Sherrill Knaggs, whom many of you will remember.

All of these phases and remissions or regressions may take place over days or weeks or months or years or decades. Absolutely everyone is different and there is no predictable course of the disease in anyone.

There now, I bet that was just a ton of help. And who knows how medically accurate it is? That is just what I've surmised from the combined stories of many of us and from my own experience and observations of others. If someone has something more -- or different -- to add or correct, I am all ears!!!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 Jeannie McClelland

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Posted 26 March 2009 - 09:37 AM

Thanks, Shelley, that did indeed answer a lot of questions.

I was diagnosed with systemic sclerosis sine scleroderma and have wondered if I could/would get skin tightening or hardening. I finally remembered to ask my rheumatologist at the last appointment if it was possible and he said yes.

The process you describe of swelling in the hands, especially in the morning and then some subsidence (a dirty word in this house because the driveway is cracking up and I don't mean laughing!) later in the day is exactly what's going on with me. In the last few months, my right leg, which has a lot of neuropathic pain, has started to tighten. Nothing is hard, though. It's all very interesting from a certain very personal point of view. :huh:

I think your observations are very valid and probably medically accurate too! Um, do I need to sign off on any paperwork to continue to participate in ISN's Observational Study? :)
Jeannie McClelland
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#6 luvbnmom3

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Posted 26 March 2009 - 12:00 PM

Wow! Well that was all just fabulous information...hehehe! That does help. I have had such a rotten time with doctors. My skin has been getting tighter, I FEEL IT GETTING TIGHTER (not the process of tightening of course...but you know) but they "check" it and say that it isn't tight at all and that I probably had some swelling.

I always have to take my wedding rings off before going to bed because my fingers are too swollen in the mornings. (THEREFORE I know the difference between tight from swelling and just plain old tight).

My eyes have been rather swollen (around my eyes) for just as long as my fingers have been getting swollen and my eye lids are tight enough that rubbing them to get rid of something "in" my eye does no good AND sometimes I get soap in my eyes in the shower because I can't keep them closed tight enough.

So, how about cottage cheese legs? I gained 15 pounds (10 of it in September) and my legs look like the fattest, cottage cheese legs ever. Not just my thighs, but my calves too. I'm within the normal range for my weight (high end of normal, but normal).

And, kind of weird, I lost a lot of hair (more on one side than the other) and the hair on that side of my head is all tightly "leaning" down toward my ear, like a cowlic, but the whole side of my head!

Anyway, my IgG's & IgM's have been high and I don't have what you describe as advanced stages of sclero so I think they're completely ignoring that possibility. I feel that if they looked into it "harder" and found out that it was (if it even is), there is a chance that they could start prescribing whatever (prednisone maybe) and at this early in the disease maybe really slow things down??

For now they say I have antiphospholipid syndrome. I do have the dilated and irregular nailfold capillaries and elevated RF too. I don't have a rheumatologist anymore. I ditched him because he didn't listen either

#7 Jeannie McClelland

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Posted 26 March 2009 - 12:12 PM

Hmmmph, I have the swelling around the eyes too - periorbital edema (just showing off) - and my rheumatologist told me to try a prescription allergy medication (been tested, no allergies). After a month, I've still got the swelling but my, I have been sleeping well! :lol:

I think even the best rheumatologists (and I really think mine is great) can have blind spots~ If at first you don't succeed, try, try, and all that blether.

I don't know about the cottage cheese legs or the cute cowlick effect, but I do know you really don't want to take prednisone if you can avoid it. I had both my rheumatologist and ophthalmologist go through a huge long list of bad things it does. The important one for us with scleroderma is that it can cause renal crisis~

Warm hugs,
Jeannie McClelland
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#8 lizzie

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Posted 26 March 2009 - 12:29 PM

Hi again love, I can really relate to what you are saying about your skin tightening and the doctors saying it isn't tight. In January 08 I told the rheumatologists at the team ward round that my skin felt like it was tightening on my wrists and arms. They did an examination and said my skin score was zero and basically made me feel like I was imagining it. However, by June 2008 they conceded that I did indeed have skin tightening and shortly after I started on Cellcept. We do know better than the doctors do how our body feels and if you feel your skin is tighter, it is tighter!

Lizzie

#9 acksd

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Posted 26 March 2009 - 02:47 PM

I have both hard or thickened skin and tight skin. The skin on my forehead was like you describe - tight. Under all my fingers but particularly my middle and index fingers the skin is thick like the layers have grown together. In my case I am sure that both are a result of scleroderma.

#10 PrincessB

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Posted 26 March 2009 - 09:33 PM

I don't have anything new to add really, except that my skin is also tight but soft. Strangely, the doctor always describes it as my skin having hardened, but if I feel my skin and anyone else's, they feel the same. I even felt his hand! But you can't pinch any skin on my fingers and very little on the back of my hands. But my skin score has improved since my SCT, so I can't complain! I second what Lizzie said, we know our bodies better than the doctors do.
Diagnosed diffuse systemic scleroderma December 2005 (on my 30th birthday, as if turning 30 wasn't enough?!)

#11 debonair susie

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Posted 27 March 2009 - 10:49 AM

Hi love and all you other nice Ladies :D !

Shelley, Sherrill and I progressed the same where our skin was concerned; we often compared with one another. However, she had extreme finger contractures, whereas, mine have clubbed, but not contracted to that extreme.

My skin was very taut, shiny and hard for 8 years. During that time, I was unable to bend my knees, unable to kneel. Prior to my Scleroderma diagnosis, I had the skin changes going on, so much so that a nurse who gave me a flu shot said, "Your skin is like elephant's skin!" My skin was definitely challenging the needle!

Once my skin began to loosen, it also began to soften. I never imagined ever again, having soft skin. One day without even thinking about it, I knelt down to do something. When I realized that I was actually kneeling, I got my husband's attention and then I burst into tears, I was so happy!

Luv, as Shelley mentioned, each of us is so different with the effects of our illnesses, that there is no way to give definitive answers to your question(s), that I know of.
Special Hugs,

Susie Kraft
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#12 jefa

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Posted 27 March 2009 - 09:22 PM

Hi, asksd

I noticed this was your second post and on looking back I see we missed welcoming you into the fold. I am sorry about that oversight, but glad you are still continuing to read and hope you will continue to share.
Warm wishes,
Jefa

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#13 luvbnmom3

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Posted 28 March 2009 - 03:29 AM

Thank you for your input everyone! It is interesting to read, this all makes more sense to me now. My skin on my lower back is tough compared to just above my waist, like it too "fat" so I am always adjusting it; it is kind of weird. That was there before I gained 15 pounds. Anyway, what y'all describe sounds more like tough skin than hard -- maybe when tough is combined with taut it feels hard! lol. I think too hard!

Welcome asksd!!!
luvbnmom3

#14 pieski

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Posted 29 March 2009 - 06:41 AM

The only place I am experiencing really bad tightening of the skin is on my feet. It is getting so bad that my toes are hard to straighten. Really annoying and pretty painful.
~ Teresa~

#15 Honey

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Posted 29 March 2009 - 07:48 AM

Hello, everyone.

I am tight and hard. LOL

It started with swelling fingers/feet and contractures of the joints. After the swelling went down, the skin tightened so around the feet that I could barely walk. I have written that they felt like rubber bands were encasing them. And the tightening traveled up my lower legs to my knees, and even my thighs. The hardening is in the feet and lower legs to the knees. So now the rubber bands are all the way up my lower legs. It is the same in my arms, from the shoulders to the fingertips. My cardiologist asked me if I always had such long and lean fingers. I laughed and told him it was the sclero. My fingers used to be pudgy. No longer!

But the hardening I feel is not of the skin, it is of the muscle and tissue inside. Like you say, I really cannot pinch anything like I could before, and it is quite shiny. The muscles feel like I have been working out strenuously and they are very firm. But I haven't. And it feels like I don't have any body fat. (Maybe I don't since I lost 20 pounds). It feels like this all the time.

I am looking forward to the skin softening stage. I am hoping that will be an encouragement.

Kind regards,
HONEY