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#1 willow


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Posted 26 December 2009 - 02:43 PM

Hi, I have just found this forum. I've been reading the articles at sclero.org and learning so much.

I was just diagnosed with limited scleroderma a week ago. It's been a long confusing road getting here.

As I am looking back I am really not sure exactly when I first had the first symptoms. I had a bout of leg pain 15 years ago and was told I had fibromyalgia. I had a change in my digestion probably 10yrs ago. In 2001 I developed Hashimoto's thyroiditis and became really ill. My doctor felt I had a 2nd autoimmune disease but it wasn't clear what it was. After a year bedridden, in unbearable pain I suddenly recovered and picked back up with my life. No one knew what it was and I just hoped whatever it was, it was over.

I was healthy and active until 2007 when I developed heart pain and arrhythmia. I had a stress test with ultrasound, showed mitral valve prolapse. 5 months later I developed really severe leg pain, fatigue, aching joints, shortness of breath, constant nausea, loss of appetite and weight loss. My new doctor thought scleroderma and sent me to rheumatologist but he said impossible because blood test showed no inflammation.

I improved some in the next months, the leg pain faded but not the nausea. Then last winter my feet became very painful and swollen, difficult to stand or walk on. Podiatrist 2 thought connective tissue disease but I thought no blood test still showed no inflammation. Then in spring, it hit my hands. First they were all itchy, then swelled then painful. So I finally went to the rheumatologist my podiatrist wanted me to see. He was very thorough and tested me for antibodies, which I have. He says I have limited scleroderma and put me on plaquenil, which I started today.

I have mixed feelings- relief at finding the explanation and having found a doctor who is taking care of me, but of course, discouraged and frightened by the diagnosis. A friend of a friend died from the serious form of the disease a few years ago.

I have been told for so long that I was just imagining the sensations I was feeling because I had anxiety, that I had stopped trusting my own perceptions. Now it is very strange to find out it is all very real. It is good to find this place and people who understand. Thank you for putting up this site.

I hope this wasn't too long. I don't usally write so much because the ends of my fingers hurt!

#2 Joelf


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Posted 27 December 2009 - 02:57 AM

Hi Willow

Welcome to the forum although it's a shame that you had to find us through your health problems! :bye:

Please don't be discouraged and frightened by your diagnosis; at least you now know what the problem is and I think you will feel encouraged by the positive stories from other members who also have this bizarre disease but are living full and happy lives in spite of it. :)

I also have Limited Scleroderma with Non Specific Interstitial Pneumonia and have just completed 6 months of IV Cyclophosphamide to help my lung involvement (I do further Lung Function Tests in a couple of weeks to determine the improvement after my treatment) and like you I was a very fit and active person who barely had a days illness before my diagnosis.

However I am still fairly active and have what I consider to be a reasonable quality of life so there is hope after Sclero!! ;)

I look forward to reading your posts!! :)

Jo Frowde
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#3 Sweet


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Posted 27 December 2009 - 07:11 AM

Hello Willow,

Welcome to the Sclero Forums. I'm glad you found us, and that you are enjoying the information you are reading. I love this site. It has been a life saver for me. I'm deeply sorry to hear about all the ill effects you are having. It's nice to know you can come to a place where people truly understand what you are going through, and give much needed support.

Again welcome, and I look forward to knowing you better.
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)

#4 Amanda Thorpe

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Posted 27 December 2009 - 11:01 AM

Hello Willow

Welcome to the forum and no it's not all in your head! Many people here have taken a number of years to achieve a diagnosis and through the process have been told they're imagining it all, they have anxiety, they're overweight, they're depressed etc. Guess what...they were right all along...doh!

Getting a diagnosis can be a double edged sword, you are relieved that something terrible IS wrong with you and you have a name for all your ills which now named can be treated. However the diagnosis is scleroderma a rare, incurable disease many people have never heard of. Deciding which is worse is down to personal preference. For me, diagnosed in 2007 with diffuse sclero, not having a diagnosis would have been unbearable.

Life with sclero is certainly very different to what it was but it's still a good life!

Take care and keep posting.
Amanda Thorpe
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#5 Snowbird


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Posted 27 December 2009 - 11:58 AM

Hi Willow

Just wanted to welcome you too....and I have to say that I like your name!! Always loved those whispering willow trees...they give that feeling of something majestic about them when they sway in the wind (I read too many novels perhaps!!). Anyway, rest assured that you've come to the right place for knowledgeable information about this disease...and loads of support.
Sending good wishes your way!

#6 willow


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Posted 28 December 2009 - 07:19 PM

Not sure if I am doing the replying and so on right but bear with me as I learn!

Thank you so much for your kind welcome everyone! You just don't know what it means to me.

Over the past couple years I have really gotten out of touch because it is just so uncomfortable and fatiguing to go out and do things. I am hoping that with treatment I will regain strength enough to get out and do some things again. Right now it takes me all day to recover from a trip to the grocery store. I can't tell you what it means to have found people who understand what I am living with and who I can connect with from right here at home. Bless you all.

#7 Shelley Ensz

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Posted 29 December 2009 - 03:57 AM

Hi Willow,

Congratulations, you graduated from our Welcome Forum! That was a few posts ago, actually, but I am just moving this thread to the Main Forum now.
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.

#8 kaykay


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Posted 29 December 2009 - 07:18 AM

Hi Willow,

I'm glad to hear you are getting treatment and I hope the plaquenil will work for you. I am on plaquenil too and I think it is having some positive affects for me. I'm very new here too - but am curious about those years leading into your diagnosis - did you have any skin involvement?

#9 willow


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Posted 01 January 2010 - 09:24 PM

Hello Kaykay,

I wasn't aware of skin involvement until just the past year but now that I know about scleroderma, I can see that my skin was kind of different. It has always been kind of tight and shiny.

How about you? How did the disease creep up on you?

#10 tngrits


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Posted 02 January 2010 - 12:52 AM

Hi Willow - I am new to this site also and learning so much!!! It is okay to feel relief that you finally have a diagnosis. I bet everyone here felt the same way. I went to doctors for 2 years trying to find out what was wrong with me. I actually had a doctor tell me there were three things wrong with me: I was a woman; I was over 40; and I was overweight!!!!!!!! Wish I had hit him in the nose :angry: Two months later I went to another rheumatologist who did the ANA test. Turned out I had the CREST form of scleroderma and fibromyalgia. It was such a relief just knowing I wasn't crazy. I hope the plaquenil helps you (I was allergic to it) and your symptoms improve. You have come to the right place. These people are so very nice.

#11 Deb1million


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Posted 02 January 2010 - 11:16 AM

Hello Willow

Nice to meet you here, you're in the right place for super support and information.

You have certainly had a tough time leading up to your diagnosis, and lets hope that now you are getting the right treatment, you will be much better. I've been diagnosed one year now, and am also on plaquenil. It has been brilliant for me, I hope it helps you, too.

Best wishes