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Amanda: Diffuse Systemic Sclerosis

Although I have no internal organ involvement I can no longer work due to poor mobility, chronic pain, fatigue and itching.

Pink Orchid by Shelley Ensz, ISN Artist Scleroderma greetings! My name is Amanda, I am thirty-nine years old and was diagnosed with diffuse scleroderma systemic sclerosis in August 2007, on the day of my tenth wedding anniversary in fact. I live in England although as you can see I visit Scleroderma web sites all over as I am fascinated to see how others are doing.

Although I have no internal organ involvement I can no longer work due to poor mobility, chronic pain, fatigue and itching. If I am going out I have to be accompanied by someone to push the wheelchair. My husband does a lot to care for me as I can't do basic things like get in/out of the bath myself anymore. He is simply incredible.

I have secondary illnesses such as Raynaud's phenomenon, erythromelalgia and interstitial cystitis (IC). I have since found out that IC is also an autoimmune disease and I was diagnosed with that three years prior to scleroderma. The erythromelalgia makes me a "hottie" as it causes blood vessels to over dilate making me the only scleroderma sufferer I know who dreads the warm and seeks the cold.

By the time I was diagnosed with scleroderma I could hardly walk having had rapidly progressing symptoms for seven months. I realize now that it began as morphea back in 2003 with a waxy patch of skin on my shin that sat there for three years then suddenly grew and appeared on the other shin hence the search for a diagnosis from November 2006 to August 2007.

During that time symptoms would appear and worsen quickly, one week my wrists ached and the next they no longer moved. It was as if overnight my hands had been fused to my forearm and the same thing happened to my ankles. Meanwhile I literally dragged myself into work spending time each day in the ladies toilet crying because of the pain, diminishing mobility and trying to pull myself together. All the time I never actually believed that there was in fact something terribly wrong with me.

I can't remember what it is like not to be in pain/itch/be exhausted all of the time as this has now become what's normal. I have tight constricted skin most everywhere.

This has been and still is some journey that my husband and I are taking but we both firmly believe that God has allowed it so there must be a purpose in it. I admit to having no idea yet as to what that purpose is but trust that God will show me and work it out for my benefit.

Finally I would encourage you to be involved with other sufferers as we are unique and everyday is an achievement for us. From your difficult experience someone else can reap a blessing.

Update: 09-06-08

…it's my disease and I'll cry if I want to cry if I want to! …you would cry to if it retired you!

It's been just over a year since I took home the diagnosis of scleroderma, and I may as well have taken home a dozen chimps—they would have been less disruptive and more productive! Scleroderma has outstayed its welcome like the bride's cousin's drunken uncle at a wedding.

Getting serious now, I am pleased to report that my mobility has improved. I still require walking aids/wheelchair and adapted cutlery, but I no longer walk like Frankenstein's Bride. The itching and pain have not improved much, nor have they worsened. I recently had my first flare up in which skin that had previously softened, nothing like normal skin, tightened up again. My joints, particularly my knees, did the same. As far as I am aware, I still have no internal involvement apart from uncooperative bowels.

Thanks to the ever-persistent systemic sclerosis, I am now officially a pensioner at the age of forty - a lady of leisure if only I were awake long enough each day to enjoy it. I always fancied the idea of being a stay-at-home wife, but not a stay-in-bed one.

Still, scleroderma has introduced me to amazing people in the United Kingdom and elsewhere. Since posting my story on the ISN web site, I have been privileged to receive many encouraging emails from wonderful people all over the world. Long gone are the days when I felt like I'd become one of "THEM," transported into a 1950's black-and-white sci-fi movie in which I was desperately searching for other "THEM." I now know that we are everywhere. The invasion has begun, and my journey continues.

~ Update 07-31-09 ~

Well it's been about a year since I updated you all on my fun 'n' frolics with mr Scler O Derma.

Two years in and I am a fully fledged sclerodermian! I have joined the sclero gastro club with reflux and esophageal motility issues. I have also been hazed into the internal organ involvement club with scleroderma induced changes to my heart. As yet they don't seem to effect function but further tests are required to confirm this.

Mobility is still an issue but I am amazed how well I have adapted to having the typical sclerodactyly hands. Nothing says scleroderma like a deformed hand or two.

Fatigue is an issue as always, my record is 20 out of 24 hours viewing the inside of my own eyelids.

I decided to get more involved in all things sclero so have become a volunteer as a Support Specialist with ISN. As a result I have met the most wonderful people, clearly scleroderma is a discerning disease picking only the best people who are funny, tenacious, and very determined.

I have been asked to speak about handling adversity, apparently I do it well. Any sclerodermian could do this because we know adversity by name and continue to overcome it in style.

~ Update 10-15-10 ~

So it's been a long while since I updated my story and as expected it has its ups and downs thanks to scleroderma. Well at least life is never boring! So I sailed along for two years with no internal organ involvement and no additional symptoms except shortness of breath (SOB). It started out as just a bit pesky and I though it was due to being out of condition but by December 2009 it was a real problem. Getting up/down the stairs was a major adventure with me huffing and puffing all the way. Of course it never occurred to me that something was terribly wrong.

I saw the rheumatologists in December 2009 and they wanted to take a closer look at my heart, although I mentioned my SOB I didn't really do it justice. I already knew I had a left ventricular bundle branch block (LVBBB); it was discovered in February 2009 and at the time didn't necessarily affect function. Well they wanted me to have a heart MRI which I immediately refused due to claustrophobia issues and after all it wasn't as if there was anything seriously wrong.

I have to say that at this appointment the rheumatologists should have been more forthcoming about what they suspected and why they wanted the MRI. I now know they were suspecting myocardial fibrosis and pulmonary hypertension (PH). In the end we settled on having a holter monitor test as soon as possible instead of the MRI. So I had the holter monitor test that showed a LVBBB and that was about it.

I went back to the rheumatologist in April 2010 having a lung function test and annual ECHO on the same day. Great timing as I could get the results at the same time as seeing the rheumatologist. I don't think I could have been more caught off guard if the rheumatologist had hit me around the face with a wet fish. The LVBBB was now described in terms of significant and my ejection fraction had gone from 50% in 2009 to 25-30%. The normal range is 55% to 70%. The ejection fraction basically measures how efficiently the left side of the heart is pumping blood around the body. I had heart failure with the left side of the heart being the problem, there was diastolic and systolic dysfunction, potential pulmonary hypertension (PH) and, oh yes, heart failure.

So in the following months I had a left and right heart catheter test and the dreaded MRI, which turned out to be no biggie, and it showed my ejection fraction to actually be 34%. The results also showed mild post capillary pulmonary hypertension with the likely cause of the change in pressure being a knock on result of the left heart problems rather than an issue with the right side of the heart. I had myocardial fibrosis and class 3 limited heart failure; there are 4 classes of heart failure, mild, mild, moderate and severe. I'm only 42.

The plan was to put in a biventricular pacemaker and intercardio defibrillator as soon as possible with the hope that it would improve heart function. Thankfully the myocardial fibrosis had become inactive so no rounds of cyclophosphamide were required. In light of the heart failure things started to make sense symptom wise. I realized why my fatigue had become worse, since I had fatigue from the heart failure as well as from scleroderma. Getting out of breath even in conversation made sense as I had heart failure after all!

Oh, I mustn't forget to mention my trip to A&E whilst I was waiting for my pacemaker appointment. One Sunday morning when I was about to snuggle up in bed with my little cat…bang!! My heart rate suddenly went berserk; it was so fast I couldn't count it. Ambulance came and took me to A&E with sirens and everything but the best bit was to come. They gave me two rounds of a drug that stop/starts the heart and before they gave it to me the doctor said that one of the side effects could be an impending sense of doom. I kid you not. How disappointed I was that nothing much happened, apart from a regular heart rate of course.

So I am now a proud owner of a biventricular ICD and prestigiously proud of my scar, having flashed it at anyone and everyone. The pacemaker looks like a huge watch battery and I can feel it under the skin, the lump is visible to the naked eye…cool! My breathlessness is better but by no means gone, that said it can take up to a year for me to feel the full effects of the pacemaker and did you know that 30% of people never feel any better?! Having had some improvement I at least know I ain't one of the 30% thankfully!

Now I continue my scleroderma journey having collected myocardial fibrosis, heart failure and post capillary pulmonary hypertension to add to gastrointestinal issues, mobility issues, skin involvement, joint contractures, sclerodactyly, chronic pain and fatigue. I wonder what I'll collect next…any suggestions? Well let me just say that despite it all I am determined to keep lovin' the weird n' wacky world of sclero. What else can I do! I'll finish by saying that the best people have scleroderma and I know because I continually communicate with and meet them. Each one has a unique journey because everyone with scleroderma is unique!

To Contact the Author

Email: [email protected]
Story edited 04-13-08 JTD
Story posted 04-23-08 SLE
Story update edited 09-06-08 JTD
Story update posted 10-03-08 SLE
Story update edited 07-31-09 JTD
Story update posted 07-31-09 SLE
Story update posted 10-15-10 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
Amanda Thorpe: ISN Support Specialist
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ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Amber: Morphea with Possible Systemic Sclerosis
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In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
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