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The topic no one wants to talk about...but I sure would like some advice! new member

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#1 Tootired



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Posted 15 January 2012 - 10:44 PM

I am new to this site and have already learned so much about limited scleroderma, which I've had for about 15 years. I am now having "disturbing" symptoms - bouts of uncontrollable diarrhea. I have read that many people with systemic sclero have IBS and other intestinal problems, but did not see anything about limited scleroderma bowel involvement.

Yeah, the severe Raynaud's and living in Western NY, is no picnic, but this has really interfered with my life. Also, I recently had a heart attack. I am a regular exerciser, not overweight, low cholesterol and good ratio, so I am totally shocked that this happened, especially at the completion of a 30 mile bike ride.

Hiked the Grand Canyon a week prior to the "event" (still hate to write "heart attack"...). Are cardiac conditions associated with CREST/limited scleroderma? Anyone out there that has similar diagnosis and is aware of this association with Limited scleroderma, please respond.

Thanks, tootired (but, hey, that seems like something I shouldn't complain about..now!)

#2 judyt


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Posted 16 January 2012 - 12:33 AM

Hi Tootired,

Yes I am too!!! Too tired to ride a bike, too tired to hike anywhere, can't hike anyway because I need a loo every little while. Does that answer your queries. Actually when I think about riding a bike, I can only remember an episode a couple of years ago when I got on an Exercycle. I had it set on the easiest programme and all I could get on the readout was PEDAL FASTER.

Seriously, the questions you have asked all come up with a definitely YES answer from me. I don't have a cardiac condition relating to Scleroderma but I do have Rheumatic Heart Disease and have had that investigated and repaired. The reason I was given priority treatment when my condition was really only moderate, is that the heart is very susceptible to Sclero related issues and it was necessary to check what was going on in my case.

I am sure you will get a post from Amanda telling you about her heart issues.

As for the bowel thing. Yes a large proportion of us suffer in this area too. Some people call it IBS but personally I don't. It is not simply IBS, it is the result of the changes caused by our disease. Jo will not doubt chime in with links to the appropriate research for you to read.

What it comes down to in my opinion is having a Rheumatologist who is a Scleroderma Expert, who will know all the ins and outs and what ifs and maybes and can guide you to the proper therapy.

Since you live in New York state (I presume) a scleroderma expert should not be hard to find if you don't already consult one.

Warm Hugs and Best Wishes


#3 Joelf


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Posted 16 January 2012 - 07:20 AM

Hi Tootired,

I'm so sorry to hear about your recent heart attack; how frightening it must have been for you and equally surprising as you're obviously very fit (I consider myself to be relatively fit but certainly wouldn't contemplate a 30 mile bicycle ride!)

Judy's absolutely right; I'm afraid gastrointestinal involvement is a very common problem with both Limited and Diffuse Scleroderma. I've also included a link to Bowel dysfunction which will give you more information about this distressing problem.Heart involvement can also occur in Limited Sclero as can other Lung (pulmonary) problems which I can verify as I have Limited Sclero with lung involvement (but not heart involvement, I'm thankful to say.) As Judy has said, I expect Amanda will be able to give you more first hand advice about heart involvement.

I do hope that you are able to get some relief from the unpleasant symptoms with which you're suffering.

Kind regards,
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#4 Amanda Thorpe

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Posted 16 January 2012 - 11:07 AM

Hello Tootired

Limited scleroderma is a type of systemic scleroderma, the word limited just refers to skin involvement which is less than with diffuse. Both can affect the gastrointestinal tract, heart, lungs and kidneys although limited usually has a slower onset and progression with a better outcome than with diffuse.

Heart involvement is actually one of the earliest symptoms reported by people with diffuse scleroderma and it can also affect people with limited scleroderma as well. Now that's not to say scleroderma is the cause of your heart involvement, not being a doctor I couldn't say, all I can say it systemic scleroderma can affect the heart.

Did you have yearly ECHO's for the first years after diagnosis and were they all normal? I have had scleroderma for 4 years now and having an ECHO each year certainly saved my life for sure. I had an ECHO at year 2 that showed a left ventricular bundle branch block caused by scleroderma and at year 3 I was having major shortness of breath and my ECHO showed an ejection fraction of 32% (normal is 55-60%) so I had a left and right heart catheter and MRI that showed myocardial fibrosis, hardening of the heart itself caused by scleroderma. This hardening lead to the heart failure and after implantation of a biventricular implantable cardioverter defibrillator (beat that for big words!) my ejection fraction is now 35-40%.

Bowel involvement, now that's a whole different matter. Are you seeing a scleroderma expert because if you are your symptom will be nothing new to them I am sorry to say. I have the opposite issue of constipation but I have always thought it better than diarrhea as it's easier to manage.

Take care and let us know how you get on.
Amanda Thorpe
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#5 barefut


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Posted 16 January 2012 - 11:29 AM

HI Tootired,

Everyone gave great information - just want to say welcome and sorry you are having to deal with all that. I have diffuse with gastro involvement. I know what you are dealing with and wish you the very best!

#6 Sweet


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Posted 16 January 2012 - 07:48 PM

Hello Tootired,

Welcome. You've been given excellent information, I hope it helps you. I look forward to knowing you better, after we're all a little less "tired" :)
Warm and gentle hugs,

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