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#1 Rachelle

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Posted 15 June 2007 - 10:17 AM

I am a 35 year old female who may have scleroderma. I have a history of fibromyalgia, anxiety, depression, endometriosis, and I think thats all!! My left index finger knuckle on my hand became very sore and inflamed a few months ago. The skin kinda flaked off and opened up. Since then I have been dealing with it scabbing and opening back up. It remained open with a hole in the center that turned white in the opening for a while before a scab formed. Keeping a scab on it is hard because I bump it and roll around alot in bed. I have been on a few rounds of antibiotics on and off which seems to make it heal somewhat, but not completely. Right now it really hurts and the scab is off and the middle of the "sore" is yellow with new skin around it. The yellow is firm like skin. I have not had any tests done and havent seen the same doctor. I went to urgent care last week to get antibiotics because I thought it was infected. My finger is swelling somewhat and I cannot bend it. It hurts!! I am going to address this with my regular doctor and get some tests done. Does this sound like sclero?? I have been reading all the posts here and I am a little less scared that this could be my diagnosis.

#2 nan

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Posted 15 June 2007 - 12:46 PM

Rachelle,

Welcome! You have come to the right place for support and information. It sounds like you might have a digital ulcer, but since I am not a doctor I don't know. I think it would be a great idea to discuss with your doctor and maybe go see a rheumatologist. Do you also have Raynaud's? I too have fibromyalgia. I was diagnosis in 1998. At that time I was also diagnosis with Sjogren's syndrome, Raynaud's Phenomenon, and GERD. I was diagnosis with CREST/limited scleroderma in December 2006. I hope that you will be able to figure out what is going on with you. I am sorry that you are in so much pain.

Take Care!

Nan

#3 jefa

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Posted 15 June 2007 - 08:05 PM

Welcome to the ISN Sclero Forums, Rachelle. I am glad you found us and started posting right away, but sorry that you may have scleroderma. As nan said, you may be describing a Digital Ulcer. Do you have problems with cold hands and/or feet that sometimes change color? Another ISN link to explore is the one on Raynaud's phenomenon. Digital ulcers are more likely to occur in conjunction with Raynaud's (pronounced RAY-nose) attacks and are caused by lack of oxygen to skin cells. Seeing your doctor is a good idea, but try to read as much as you can so you can go in with the right questions.

Please feel free to post in the Getting to Know you thread at the top of the page. It is good reading, too.


Warm wishes,
Jefa

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#4 barefut

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Posted 15 June 2007 - 08:23 PM

Rachelle,

Welcome. Sounds pretty painful! I had just what you describe, only on my right middle finger tip. It took months to heal. That was 3+ years ago (before sclero diagnosis) and I haven't had one since.

I eventually got a metal finger brace and wrapped it up big to cushion the blows when I bumped it - and I bumped it a lot! Sounds like yours is in a hard place to protect though.

Do you also have Raynaud's?

I hope you find out soon what's going on and get some relief!

Take Care
Keep in touch,
Barefut

#5 janey

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Posted 16 June 2007 - 07:53 AM

Rachelle,

Welcome Darlin'! I'm sorry that you are here thinking that you might have sclero, but it's good to see you searching for the cause of your sore. OUCH! It does sound quite painful. Since the antibiotics don't seem to be healing it, I agree with the others, that you need to see a doctor and possibly a rheumatologist. It does sound like a digital ulcer which normally accompanies Raynaud's. Please review Carrie's links and see if anything looks familiar.

I hope you get into to see a doctor very soon. Please let us know what you find out and keep us up on how you are doing.
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#6 Sweet

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Posted 16 June 2007 - 11:09 AM

Hi!

Welcome to the Sclero Forums. I'm so glad you found us, but sure sorry it's due to your illness. Carrie gave you a couple of excellent links that should help you understand the problem you are having right now.

You will find a lot of information, support and friendship here. I look forward to knowing you better.

:)
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#7 Rachelle

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Posted 16 June 2007 - 12:00 PM

Thank you all for the welcome! I have been reading the information here. It is the best site I have found so far!

#8 Michelle2

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Posted 19 June 2007 - 09:15 AM

Hi Rachelle~

I'm brand new to this site as well and what you are describing is exactly what I have going on as well. My digital ulcer is on the tip of my middle finger on the right hand side. It's been there since last October. It is very small now and I am sure I have scar tissue because the pain is much less than it use to be. I had some much pain that I would think to myself, I would be better off just cutting it off. Of course I would never do that, but that's how much pain I was going thru. I go to a rheumatologist monthly. She has given me rx for antibiotic which has cleared up the infection. I have even asked if she could refer me to a wound care specialist that I learn about from the Raynaud's forum website. She said "what do you need to go there for?" Ahhh the sore on my finger that won't heal. I didn't get the referral.

My problem started in 2004. The finger tip on my right hand would go purple and numb. I went to my dr and had many tests done. They thought it was Raynaud's and then referred me to my rheumatologist. After going to her for 3 years, she has diagnosed me with Lupus secondary to Raynaud's. She also said that I have Arthritus. I read an article on Scleroderma and even brought it to her to read. She said, No No No you don't have that. (I was releaved because the article said most people with Sclerodema "can" live up to 10 years with the disease.) Needless to say I was freaking out. Ok, so the my last visit 6-15-07 I told the Dr. that the skin on the back of my hands are really tight, so tight that you can't pinch any skin at all. It feels like I have really tight gloves on. My fingers are a little swollen as well. This is also going on with the sking on my calfs. Her remark was, "well that's your scleroderma doing that." I said you told me that I don't have that. She told me it was all linked together. Well, I think that's the last I want to have with her. I'll have to go back to my primary to ask for another referral to someone different.

I'm pretty sure I have Scleroderma too. I am so glad that I found this site. This has been very helpful and the people seem really nice and encouraging.

Oh by the way, I am 40 years old, married with 2 boys and living in So. Cal. I work full time on a pc all day. Thank goodness I don't have to write with a pen. I can barely grab the pen these days. I am going to look into something called UVA-1 therapy.

(sorry this was so long winded, I am just so glad I saw your post. It makes me feel like I am not going thru this alone.)
Take care and stay warm,

Michelle

#9 jefa

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Posted 20 June 2007 - 03:44 AM

Welcome to the ISN Sclero Forums, kuntrybumzz. I think you will agree after reading and posting for awhile that you have found a great place to share and find information regarding your various problems. I feel your frustration with the rheumatologist who can't remember what she told you from one visit to the next, but it may be that she took on board your question from the first instance and had reconsidered by the second time. At least you are getting monthly visits. Most of us have to wait longer. Mine actually said the same thing the first time I saw him, that it couldn't possibly be scleroderma, but even with negative ANA he is now giving it consideration. As for limits on how long you might live, there are MANY members in the forum who continue to lead full lives with the disease and a good many have been diagnosed for much longer than that. With proper treatment and a healthy lifestyle, things are looking up for all of us.
Warm wishes,
Jefa

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#10 Michelle2

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Posted 20 June 2007 - 04:17 AM

Thanks Jefa for the encouraging words. I can't seem to get this whole scleroderma out of my mind. I am thinking about it all the time and with your what you just said, it makes me feel much better. Not so doomed if that makes any sense.

Thank goodness for this website!

Have a good day!
Take care and stay warm,

Michelle

#11 Sweet

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Posted 20 June 2007 - 09:15 AM

Hi Kuntrybumzz!

Welcome to the Sclero Forums. You will find an immense amount of information, support and great friends here, all from people who can truly relate to how you are feeling!!

I look forward to knowing you better. :)
Warm and gentle hugs,

Pamela
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International Scleroderma Network (ISN)

#12 Rachelle

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Posted 21 June 2007 - 02:43 PM

Thank you all for the welcome and information. I have an appt June 29th with my general doctor and July 5th with a dermatologist. I really need to figure out exactly what is going on, but I am terrified of doctors!!!!!!

#13 emmie

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Posted 21 June 2007 - 05:14 PM

Welcome to both of you: Rachelle and Kuntrybumzz

Rachelle: no need to be terrified of doctors. write down and take with you to your doctor's appointments how you have been feeling, things you have noticed changing, if others have noticed things about you write that down also, questions you have (none are too "silly"). If possible take someone with you to write down answers and ask follow up questions if possible.

And most importantly remember that you are paying the doctor therefore he is your employee the same as if you needed an electrician to rewire a circuit in your home. The doctor has some specialized training, but so does the electrician. So, no need for Doctor Terrification!Good Luck!

Kuntrybumzz: It's good to read that you are happy to have found this site. I know how relieved and happy I was when I did. So many people who understand what it's like and so much good information.

I think the best thing you have found out so far is that we are NOT doomed!!! Isn't that wonderful to know?? Have a fun day.

xoxo emmie

#14 Sheryl

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Posted 22 June 2007 - 01:22 AM

I am the only one around here that can say she has been doomed. I have been a doom by name now for 38 years. My oldest son is PHD Dr. Doom. You have to do something with a name like that. Just a bit of trivia for you. Ha! Sheryl
Strength and Warmth,
Sheryl

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#15 emmie

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Posted 22 June 2007 - 04:13 PM

Too funny Sheryl! Thanks for the chuckle :-)

xoxo emmie

#16 Michelle2

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Posted 05 July 2007 - 10:55 AM

Hi Guys~

Sorry I haven't replied in awhile. I was on a brief vacation with my family. I am happy to say that I too have a doctor appointment scheduled for Monday with my primary care physician and am going to ask for a referral to a dermatologist and also a different rheumatologist. I will feel much better with a second or third opinion.

The skin on the back of my hands are getting SO tight. I think it's getting worse. My ulcer is also bigger and I am not quite sure why. I haven't done anything different. My finger just throbs especially when I am laying in bed, sometimes so badly that I have to get up and take some Motrin.

I have a few questions for my new friends out there.

1. I have seen many abbreviations of tests with number associated with the them. Could someone please explain them to me. They sound pretty important and something that I need to become familiar with.

2. Do you find weather effecting your Sclero?

Currently I live in So. Cal and my husband is going to accept a job in Durham N.C. It has me a little nervous with the thought of being cold. I seem to be ok with humidity, the cold just scares me. My Raynaud's really gets effected with it.

If you can think of anything other info that might be helpful to "us" newbies.

Truly THANK YOU ALL!

It's so nice not to feel alone!
Take care and stay warm,

Michelle