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#1 RobinAustin

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Posted 21 March 2008 - 03:35 AM

Hi Everyone!

My name is Robin, I'm almost 44 (my birthday is this coming Tues) and live in Austin, TX. I am a teacher/behavior specialist with Austin ISD. I was diagnosed with Raynaud's about 7-8 years ago and was recently diagnosed with diffuse scleroderma. My reheumatologist has me seeing a plethora of specialists right now to see if any of my internal oirgans have been compromised. Cardiologist says my heart is fine :o ) but I'm still waiting for various tests to be run with the gastroenterologist and pulmonologist. The dermatologist was so supportive and chatted with me for a VERY long time .. anyone out there every feel like they're the guinea pig? or on a more positive spin, a test case to teach the various doctors out there more about scleroderma?... she gave me a topical steroid cream for my hands and forearms, a cream to help with the calcinomas and other owies that crop up, and an oral anti-itch medication for night time. Im scheduled for an endoscopy on March 28th and I'm NOT looking forward to that one .. the pulmonologist will likely do a CT scan since I've already had a chest x-ray that came back normal. Unless something shows up on those last two tests, it looks like for now I'm only dealing with the Raynaud's and incredibly irritated hands and forearms. My question to y'all is ... has anyone found ANYTHING that relieves the itchy, creepy crawly, swollen sausage-like burning sensation in your skin????? I'm surprised we don't all go NUTS!

To date I have tried several over the counter creams (which give me about 5 minutes relief), cool compresses (sweet relief until they warm up), hot compresses (yuck..definitley NO), and Clobetasol propionate cream USP 0.05% (newly prescribed yesterday so don't have a verdict yet).

The swelling and redness are always worse in the mornings so has anyone discovered something I can do at night to keep this to a minimum? I took the oral antihistamine last night but other than sleeping like the dead I noticed no difference. I also struggle with those pesky calcinomas. I currently have one on the second knuckle of my right index finger. I can't bend the thing without tearing up and forbid I should knock it against even a pillow!! Wild dances often follow such unwelcome occurrences. I've had several on the tips of my fingers (well, I think that's what they were since I wasn't diagnosed at the time..thought they were ulcers at the time as I only knew about the Raynaud's part of my diagnosis but in retrospective, I now believe at least half were calcinomas). I have traditionally been smearing my finger with TONS of antibiotic cream and then wrapping it gently with a padding of gauze and securing that with athletic, self sticking tape. Any others suggestions would be greatly appreciated.

I work with behaviorally disordered children and most have no social skills so I am constantly being asked why I have blue fingers and why do I keep having to bandage my fingers?? I use it as a social skills lesson on who you can ask those types of questions to and who you can't :o ) As is very common, my students tend to be of above average intelligence so the younger ones who I work with regularly are aware that "Teacher has problems withe her hands so if we see blue fingers we're supposed to let her know and then we have to endure the temp in the room being raised to an uncomfortable level for us but better for her fingers" :o ) The older ones had a lesson in autoimmune disorders a few months ago so we've been doing research on the various manifestations of autoimmune disorders and the implications. They're fascinated by the fact that there is no reason for this disorder .. I.e. nothing I could've done to prevent it from happening .. and that there is currently no "magic pill" to make it go away. Ah, the naivete of youth :o ) I burst into tears one day when I banged my current owie on the corner of a desk as I was passing a student and bless their little hearts, they were ready to call 911 and through tears and laughter I had to assure them I was fine, just that the pain was the kind that makes your eyes water really badly!! I wear a two-way radio and pager so that I can be reached if I have a student in crisis and one-day I couldn't get the radio off of my belt. It had hooked itself onto my belt loop as well and my hands weren't working well that day (hate when that happens). I was getting frustrated and one of my students, a real tough, 14 going on 30, very gently came up to me, placed his hands on mine, looked me in the eye and said "please...let me get that for you". I'm tearing up just thinking about that moment. But I digress ... this forum is for those of us living with scleroderma and all that that implies.

I'm very happy to have found this forum and look forward to getting to know all of you better.
Always,
Robin

#2 relicmom1

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Posted 21 March 2008 - 05:12 AM

Welcome Robin!!!
You will find that this site and everyone here are absolutely WONDERFUL!!I'm sorry you had the need to find us, but happy that you did. I compare having sclero to riding a roller coaster.....alot of sudden ups and downs and turns :P .
Unfortuneatly the testing is an ABSOLUTE MUST. You need to get a baseline and then you will have periodic repeats to monitor progress. I have had many upper endoscopies and they aren't bad at all, so don't be afraid of that one :) I have had sclero for 10 years and I yet to find a decent remedy for the itchy skin :angry: I commend you for teaching special needs children!! I have had the expierence from the parents side of view. My son (now 23) was diagnosed as Learning disabled and attention deficit disorder (not hyperactive) when he was in the second grade. I am so glad to hear someone else speak of their intelligence, my son's IQ is just below gifted. He was in "co-taught" classes from the 5th grade on because he had good coping skills. The parents of the "normal" kids got angry that there were "dumb" kids in the class with theirs :angry: I had to bite my tongue or else I would have said some very ugly things :rolleyes: Anywho..I've digressed...Welcome to our wonderful site and if you ever have any questins or conerns, don't hesitate to ask, someone here will do their best to help you, even if it's to hold your virtual hand,
Peace :)
Barbara aka relicmom1

#3 Sweet

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Posted 21 March 2008 - 05:50 AM

Hi Robin,

Welcome to the Sclero Forums. I'm so glad you've found us. You will find a wealth of information, support and friendship here.

I'm sorry you are having such a hard time with your fingers and the itching! I had a bout of the "itchies" last night. Uggghhhh Sounds like you've tried most of the things I would suggest. So instead I'm give you a link to skin involvement that goes into so many areas that may be of help for you.

Again welcome!
Warm and gentle hugs,

Pamela
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#4 Peggy

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Posted 21 March 2008 - 06:18 AM

Welcome. I don't have the itchy skin but have the real tight skin that keeps getting worse and affecting more areas of my body. I have systemic sclero and was just diagnosed last August so like you I have had the tests that they initially run and have just had my 6 month checkup to compare if there is any change. I still haven't gotten the lung results but the heart is still OK. This forum is great especially if you have questions as there is always someone who knows what you are going through and willing to lend advice.

Good luck and warm hugs.

Peggy

#5 jefa

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Posted 21 March 2008 - 07:14 AM

Welcome to the Forums, Robin. Sounds like you will be a great addition to the group. Hope you will be able to find what you are looking for in the link Sweet gave you. I am glad you are able to continue to work and have such a good sense of humor about it.
Warm wishes,
Jefa

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#6 Sheryl

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Posted 21 March 2008 - 08:33 AM

Robin, Welcome to our Sclero Forums. We are an awesome group of people from all walks of life. We spend our days trying to learn and recover from all our various symptoms. Your question about getting relief from the severe itching. That would be awesome if someone came across a sure fire method to alleviate the pain and anguish this causes. Some company would get truly rich just from all the sclerodians in this world. Most of us have tried everything that anyone suggests, even ancient old wives tales. I know people who go to allergists and dermatologists and try any and all treatments without much success. Prescribed antihistimines that help with the severe cronic type itch have sedative properties. Most people can take them a couple hours before bedtime and get some releif. But, those same people aren't always able to function properly during the day it they take the same dose as they do at night. Or take anything at all and be able to function. Others can take prescribed Xanax during the day and find enough relief from the anxiety and itch that they can function properly. When the itch isn't severe or you catch it before it becomes severe with something simple like Xanax then you can head off severe cases most of the time. Most of the prescribed creams don't appear to help any of us cronic itchers during our worst times. Maybe some doctor who reads these messages and is in his lab at this moment, working on something that will help all of us. We live in hope. Let us know about this new prescription cream you were give to try. Oh! and by the way WE DO GO NUTS at times or drive our families nuts. My family constantly tell me to stop itching or grab my hands to control my behavior. You don't realize how strong you are until you can truly yank your hands and arms away from someone who is holding them to stop you from itching. Sheryl
Strength and Warmth,
Sheryl

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#7 janey

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Posted 21 March 2008 - 08:39 AM

Welcome Robin!
I'm sorry to read about all you are having to deal with. It does sound like those wonderful children you work with give you some of the attention and comic relief that you need when you get cold or bump those fingers. I certainly admire you for continuing to work with those kids. I'm sure it's physically hard on you.

Apparently what I use for itchy skin doesn't work for you, so hopefully you'll get some ideas from Sweet's link as well as from forum members. You might take a look at our page on Raynaud's prevention tips. Preventing Raynaud's episodes could help with those sensitive fingertips.

Look forward to learning more about you.

Big Hugs,
Janey Willis
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#8 nan

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Posted 21 March 2008 - 02:36 PM

Robin,
Welcome to the forum! This is a great site for information and support. I don't know any recommendations for your skin itching. I do not have that. As far as the endoscopy goes, that's a piece of cake. If it's the upper endoscopy, they put you out and stick a tube down your throat and no problem. If it's a colonoscopy the only problem with that is the prep. You'll be fine. I was in to see my primary care physician about two weeks ago and he had a med student with him. The med student's eyes got huge when he saw my purple hands. He asked permission to touch them. He was a first year med student. I started telling him all of this info on scleroderma and told him that he would really impress his teacher with that knowledge. It is amazing how little people know about this disease.
Nan

#9 omaeva

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Posted 21 March 2008 - 06:32 PM

Welcome to the forum!
Sorry to hear about your itches! I find that using a lot of really creamy (bod butter) all the time helps me a little bit. At least the smooth sensation of the lotion keeps me from scratching and somewhat calming.

and to Nan:

Med students love me! I've met them in all the doctor's offices I've been to in the past few years. They particularly like touching my lumps (calcinosis) with those WIDE eyes. Yawozahs!