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New Member Tawanda

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#1 Tawanda70


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Posted 12 February 2009 - 02:55 PM

Hi there everyone! Not sure if I am doing this right, but here goes...

Diagnosed with CREST at age 17, mainly just Raynaud's presenting at the time. No big issues for years, other than this horrible heartburn (anyone had that? :lol: ). Now I am 38 years old, diagnosis reconfirmed as Scleroderma. My presenting symptoms now are swollen and white-to-blue hands and feet along with pain (very sensitive to cold!), bouts of severe fatigue, joint pain particularly in left shoulder, right hip and neck, and esophageal dysmotility (confirmed by an esophageal manometry done last year). Also was diagnosed with hypothyroidism. Current medications are for thyroid and the heartburn. Went to see a rheumatologist who basically (and with no bedside manner) told me "there is no cure and scant treatment, so deal with it". I have felt so alone for a long time. I have a very supportive husband and am thankful for that. I did recently meet a woman at my general practitioner's office who works in the lab and she also has this disease. We both cried together because we had never met anyone else who has this! I am very lucky not to have the actual skin hardening, but know that is a definite possibility due to my hands particularly. Seems like the past 4 years, symptoms have really started to be more persistent. I feel very fortunate that I have not progressed more than I have.

Am so glad to find this site and this forum and will be catching up on a lot of reading here. Looking forward to being a part of this forum!

#2 jefa


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Posted 12 February 2009 - 09:16 PM

Hi, Tawanda. Looks like you managed just find. I'd like to welcome you to the ISN Sclero forums and assure you that you have found an excellent source of support and information. I hope you were able to find another rheumatologist along the way, preferably one who specialises in scleroderma.

You may find our page on Thyroid Disease useful. Do let us know if you have any specific information you are looking for.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 Shelley Ensz

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Posted 13 February 2009 - 05:53 AM

Hello Tawanda,

Welcome to Sclero Forums! I am sorry you have been living with scleroderma for so many years, with little chance to meet your fellow sclerodermians, to boot. But at long last you have found us!

You really do need to get a scleroderma expert on your medical team. It looks like Jefa has already encouraged you with that. It seems like it is not all that unusual for milder forms of systemic scleroderma to act up, at the 10-year mark and the 20-year mark, it seems we hear about that a lot. But of course, I have no medical training, I haven't even played a nurse at a costume party.

What things have you found helpful for dealing with your symptoms, over the years?
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.

#4 debonair susie

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Posted 13 February 2009 - 07:51 AM

Hi Tawanda,

I would like to join Jefa and Shelley, in welcoming you. You HAVE dealt with this for a long time!

I am really glad you have joined us, as there are so many awesome members here, who are very supportive, as well as helpful!

I hope your next rheumatologist is completely the opposite of the one who lacked compassion that you had seen. I'm sorry any of us must have such experiences, but unfortunately, it does happen to alot of us.

As you already know, your symptoms should not be dismissed by any dr...they should be treated. Raynauds is one of many that should be addressed!

I can appreciate how you must have felt meeting the lady who shares the same disease...it's like gaining a sister you never thought you had!
I am so glad your husband supplies you with support...mine is also wonderful that way!

I'm sending good thoughts your way and hope to see you here often!
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#5 Sweet


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Posted 13 February 2009 - 12:01 PM

Hi Tawanda,

Welcome to the Sclero Forums! Now you know ALOT of people with Scleroderma. :) Sorry to hear you have it at all, but glad you found us and glad you have a very supporting husband. That in itself is a huge blessing.

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

ISN Support Specialist
International Scleroderma Network (ISN)

#6 Amanda Thorpe

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Posted 13 February 2009 - 12:33 PM

Hello Tawanda

So glad you've found us, they recon we're rare critters but there's lots of us in them there hills!

When diagnosed in 2007 all I wanted to do was see in the flesh someone else with sclero, just to know there was another human being living with what I was. It seems that we are an exclusive bunch but we're out there you just gotta find us...and you have.

Now to the rheumatologist, please go back and tell him he knows nothing about sclero despite it being a rheumatic disease and him being a rheumatologist, he needs to back to medical school via charm shool and he should just deal with it! Alternatively refer him to this site.

My sister was once told by a doctor that sclero was untreatable and she enlightened him with the facts, incurable but eminently treatable.

As already suggested get a sclero expert on board as you can be treated just not cured. Also post often as you'll pick up lots of useful info, support and encouragement.

Take care.

Amanda Thorpe
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International Scleroderma Network (ISN)

#7 razz


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Posted 13 February 2009 - 02:07 PM

Hi Tawanda,

I'm glad you found this website too and I'd like to join in the welcome! You've been diagnosed and dealing with scleroderma at such an early age and I can only imagine how difficult it must have been, especially being so young. Even though I live in a large city, I rarely if ever, run into anyone who has scleroderma or is familiar with it. You've come to the right place! We are a huge family and everyone is so helpful, supportive and generous with sharing information.

Even though you're not experiencing hardening of the skin, the other symptoms alone can take a toll on your strength and energy. Feel free to vent any time! I hope by now you've found a rheumatologist with a mature bedside manner.

Just remember, you're not alone. We're here for you!


Live well, Laugh often, Love much