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#1 jae3



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Posted 30 June 2009 - 04:31 AM

Hello to all! :rolleyes:
I am a divorced--soon to be 50-- mother of 2 boys.

I am relatively new to scleroderma. I had tests done last spring when my arms and hands went numb every night. It took until fall for the final diagnosis of systemic sclerosis. Since then, I have had both hands operated on for carpel tunnel. I have to monitor my blood pressure. I have high cholesterol that cannot be controlled by diet alone. I have hypothyroidism. I take antacids for severe acid reflux. I have constant headaches and fight fatigue everyday! Recently my stomach stays swollen and, at times, have a hard time swallowing. Is this the beginning of GAVE? I have had a few abnormal kidney function tests which I went to a specialist for, and who said that it has nothing to do with the scleroderma and I was worried over nothing. Is this correct??

My hands still hurt and have woken up at night with one hand numb and 2 fingers curled. They and my feet are swollen ALL the time.

I stay worried....read everything....then worry more.

I need your help!! Where do I go from here?

I've been reading your posts and know everyone sounds amazing!! I already know how wonderful and close you all are! I hope you welcome me to become part of your community.

#2 Shelley Ensz

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Posted 30 June 2009 - 05:27 AM

Hi Jae,

Welcome to Sclero Forums! I'm very glad you've joined us, but sorry that it is because of scleroderma.

It's terrific that you're reading everything. Eventually that will be a feather in your cap, and with reading about how others have survived and thrived, somehow, with similar situations or symptoms, you'll probably quit worrying and get busy seeing how you can help others. That seems to be a pretty normal transition for the readers among us.

I'm glad you asked about Watermelon Stomach. There are a lot of misconceptions about it. What it refers to isn't the size or shape or blossoming of the stomach, but rather, bleeding within the lining of the stomach. When doctors look on the inside of the stomach, through special scopes, they see an unusual striped bleeding, and the stripes look rather like those on a watermelon. It is usually detected through blood tests that indicate anemia, I believe. But don't count on everything I say; I am not a doctor and have no medical training at all. Well, that's an exaggeration -- I do know how to put on a bandaid. :lol:

I'm sorry for all you are going through. We welcome you with open arms and lots and lots of warm hugs!
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.

#3 Cheerful Carole

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Posted 30 June 2009 - 06:08 AM

Hi Jae,

Welcome to our exclusive club - only very special people allowed.

#4 Amanda Thorpe

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Posted 30 June 2009 - 06:17 AM

Hello Jae3

Welcome to the forum! Having scleroderma's a bummer but being on this forum isn't so there's always an up side. :D

Try and source all your sclero information here because its bona fide and not hysterical plus you can read others personal stories and see that people with scleroderma still live good lives. You don't have to have good health to have a good life.

I'd also suggest that you see a rheumatologist who is a scleroderma expert and we have a list of them on this site. The link takes you to all of them, just choose your area. Whoever you see it's important to engage in your treatment, asking questions and challenging what you're told when you feel it's appropriate to do so, it's your disease and you shout if you want too.

The kidneys can be involved in systemic scleroderma but before you worry I have a friend who had kidney involvement some 25 years ago, she's still alive and kicking today. The swelling of the hands and feet can pass and there are various medications for reflux and I am told the fatigue does get better. I am into my second year with systemic sclerosis and have just joined the gastro club, I also struggle with the fatigue and frequent migraines.

Well I'm looking forward to seeing out year two and going into year three, I'm also looking forward to hearing more from you.

Take care.
Amanda Thorpe
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#5 janey


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Posted 01 July 2009 - 07:33 AM

Welcome!!!! With the size of the hearts in this group, there is always room for member. I'm sorry you are here due to your diagnosis, but you certainly have come to the right place.

You mentioned that you fight fatigue every day. That is very common! Not only does the disease itself cause it, but so do some of the medications. We do have a section on fatigue that you might want to take a look at. You'll probably find some helpful information. Each of us are different, but I have found that nibbling throughout the day helps to keep my energy level up somewhat. I also try to get a tiny bit of protein in with each nibble. Believe it or not, exercise has also help. I'm exhausted after my exercise, but the following day I have a lot more energy. Please talk to your doctor about your diet and exercise. S/he might have some suggestions. Unfortunately, we do have to push ourselves a lot to get going. Mind over matter is one of my chants. :)

Now that you do have a diagnosis it is very important to keep a written log of how you feel - new symptoms, worsening symptoms, improving symptoms, etc. Believe it or not, some things do get better! Make sure that your doctor has given you a thorough exam and run the standard medical tests for scleroderma to ensure that nothing else is going on and to get a baseline of your vital organs. As you've probably already discovered there are a lot of tests! The good news is that their frequency does decrease with time, especially as thing stabilized.

Hang in there Darlin'. Just stay in touch with your doctors and with us here at ISN. It's a great support group, especially when you don't have one that can meet face to face.

Big Hugs
Janey Willis
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#6 nan


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Posted 01 July 2009 - 09:23 AM


Welcome! I have GAVE. Dr. Shelley is correct in describing it to you. Mine was discovered when my hemoglobin went down to 6.1. An upper endoscopy was done and the doctor said I had GAVE. Some doctor told me to think of it as telangiectasia in the stomach. I have CREST.

Take care,


#7 Jeannie McClelland

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Posted 01 July 2009 - 12:43 PM

Hi Jae,

I want to welcome you too! I think the best thing about having scleroderma is all the friends we make here on the ISN Forums. I think you've gotten links/comments for all of your questions, so I'll close with the instructions for one of our famous hugs.

Here goes:

Put down anything you may have in your hands. Open your arms wide, put a big warm smile on your face, then take a deep breath. Ready? OK, wait for it, wait . . . HUG!

When we're having one of our group hugs, we tend to circle clockwise (left, right? I'm directionally challenged), but if we're really excited and happy, as we often have cause to be, then it's a free-for-all. (Steel-toed shoes are not a bad idea.)

Ready for another hug? Here goes . . . HUG!!
Jeannie McClelland
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#8 Sweet


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Posted 03 July 2009 - 01:20 PM

Hi Jae!

So glad you've joined our family. Looking forward to knowing you. :)
Warm and gentle hugs,

ISN Support Specialist
International Scleroderma Network (ISN)