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tillytowler

Recently diagnosed with CREST

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Hello, my name is Gilly and I am a 46 year old married mum of 4.

 

I have recently been diagnosed with CREST. I would really like to just hear about other people who have it. The physio at the local hospital laughed when I said I had CREST and said 'That's highly unlikely dear, it's very rare' I am waiting for an echo and barium swallow at the moment.

 

Is it common to be choking on food and having terrible heartburn? I have lost over two stone in a few months. Also, I am in constant pain and have terrible bowel problems. I also have fibromyalgia and am never sure if my symptoms are that or CREST. Sorry to moan but I have nobody else to tell. I don't want my family and friends to worry.

 

So, if you have any advice, please feel free to give it to me. Thanks.

:flowers:

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Hello Gilly

 

Welcome to the forums! With a CREST aka limited scleroderma diagnosis you're now a member of a very exclusive club, it being a terribly rare disease as you know.

 

Firstly if you aren't seeing a scleroderma expert you may wish to consider doing so because scleroderma is a very complex disease that needs the right monitoring and treatment of symptoms. Speaking of which gastrointestinal involvement can be very common in scleroderma.

 

Are your tests coming up soon?

 

Take care and keep posting.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Gilly

 

A warm welcome to these friendly and informative forums.

 

I'm so sorry to hear that you've just been diagnosed with CREST (Limited Scleroderma) and are experiencing such horrible symptoms. I also have it, but thankfully I don't have the gut involvement so I'm afraid I can't advise you about that. HERE is a link that should help you and I'm sure some of our other members who are personally affected will be able to give you more advice. :) We also have some very useful facts regarding CREST (Limited Sclero) HERE which I hope will enable you to understand it better.

 

Are you able to see a Scleroderma specialist? Sadly it doesn't sound as if your local physiotherapist is very knowledgable about it and as Scleroderma is such a complex disease, it's always worth trying to get a referral to a Sclero expert as opposed to a general rheumatologist.

 

Do please keep posting whenever you need support and help; I'm looking forward to reading more of your posts and hearing how you are faring.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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I was diagnosed with CREST in 1991. Not the end of the world for me but I do have my bad days. I have all of CREST letters, each of which stand for a symptom. I did lose a large toe in 2007 due to Raynaud's Syndrome so you must be careful to cover up. A prescription medication works for the heartburn. I'm in the "donut hole" (of health insurance) at this point and cannot afford the medication. I purchased an over the counter substitute which I will have to use come December so I'm hoping that will work. If not, with the new health care program I can get my other medication back in January 2011. Don't fret, it's been pretty manageable for me. I do get tired easily, the legs don't seem to want to climb the stairs but all in all, there are others I'm sure worse off.


Tru

 

It is what it is...........

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Hi Gilly,

 

Welcome to the Forum. I'm sorry you needed to find us, but glad you did. Did you know we have a whole section of personal stories from those with scleroderma, their families, and friends? You can also go to either the main site or here on the Forum and search either one for CREST. We have a number of members with CREST and I'm sure you'll hear more from them.

 

The GI issues are quite literally a pain, but there are treatments and coping strategies that can help and you've already been given some links to them. Hopefully your doctors will soon get you on a treatment plan that will ease those symptoms and also the fibromyalgia (another real pain!).

 

Keep posting, let us know how you are doing, and pop in anytime you might need a big ISN hug. :emoticon-hug:

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Gilly,

 

I'm just dropping by to say hello, and welcome to Sclero Forums. I'm glad you found us and hope we hear lots more from you, over the years.

 

:emoticon-hug:


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.

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Hi Gilly

 

I have the Limited form and my biggest problem is the Raynaud's which I suffer with all the time even in the Summer! I do have mild problems with reflux andwallowing and joint pain and fatigue. But life does go on and although scary when first diagnosed I find it easier now because at least I have had a diagnosis.

 

Hope the tests go well for you.

 

Best wishes

 

Buttons

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Hi Jilly.

 

A big welcome to our world!. I was diagnosed with CREST/LIMITED scleroderma in June 2009. I too suffer a lot with Raynaud's, joint pain and fatigue, and other symptoms that come and go. It's not easy, but there IS life after diagnosis, but its scary at the start.

 

I agree with the other ladies here Jilly, its very important to find and be referred to a good specialist at your local hospital, and be managed correctly, and be given treatment that suits your particular symptoms.

 

I've been fortunate that I've been put on a regime that is helping me to be as near normal as I can be, but it takes time to balance the condition, some medications suit some people and not others!

 

Keep posting and don't lose heart. Help will come and hopefully you'll start to feel more comfortable. But I would say its so important to be open with your family and friends about how you feel...they are worried for you too, and you need them.

 

Hugs and warmth,

 

Lynn

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HI Gilly,

 

Welcome to the forum. I was diagnosed with what the rheumatologist termed "probable limited scleroderma" in 2006, . At first I was anxious and thought that a progressive decline was inevitable. Four years on I know better! Over time the diagnosis was changed to "more than limited scleroderma", I started immunosuppression, but I have remained very well. I continue to work full time and do everything I want to do. The major problem for me is the Raynaud's. I do have some gastro problems and see the gastroenterologist on a regular basis. However, I have found that the gastro problems wax and wane. In fact I think things have definitely improved recently - the reflux is not so severe and I have no swallowing problems at the moment. I can empathise with the bowel problems, having suffered both diarrhoea and constipation in rotation, but as with the other GI issues,I have periods of time when these are really not a problem. As for the phsyio-I have often found that health professionals will say things like this in a misguided attempt to be reassuring - when in fact what we want is for someone to acknowledging the reality of our condition and its potential implications whilst engendering optimism.

 

Best wishes,

 

Lizzie

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Hi there Gilly

 

I also have CREST and yes, it is rare, but that doesn't mean you can't have it.

 

I struggle with being stiff and have aching joints, reflux and heartburn and the feeling of something being stuck in my throat. I have a lot of calcium deposits which cause me no end of trouble; my fingers and toes are bent and twisting and my hands and feet swell most of the time.

 

You are certainly not alone now; there are lots of people on here that will talk and listen to you.

 

Be well my friend; I know it's not always easy, but think positive. xx liz

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Hi Gilly,

 

Welcome to the forum, but sorry for being here too. I too have the CREST/limited form of scleroderma and have a lot of gut issues. A good gastro doctor should be able to tackle and help alleviate some of your gastric problems. I find omeprazole has been particularly good with regards to heartburn and reflux and I am on continuous antibiotics because of Small intestinal Bacterial Overgrowth which can course excessive wind, bloating and pain and have never looked back and curiously enough since being on them, nearly all of the muscle pain I experienced before has slowly abated and my chronic fatigue has greatly improved. Never be shy about explaining how bad your symptoms are otherwise you will never get the best possible care that you need, I too lost over one and a half stone and with the help of supplement drinks have managed to put back on nearly a stone, but it has taken a long time, but it is possible. So with the right help and medication it should be possible to reduce some of your symptoms.

 

I hope through this site you will find all the helpful advice and support that you need, I have certainly found this site very beneficial emotionally, just knowing that there are people just like me that understand what I am going through. Sometimes I just don't want to burden my family with what is on my mind, so it is good to come here and sound off, where no one thinks any the worse of you.

 

Try not to worry too much, because some of the stuff you read out there on the internet is pretty scary.

 

You take care

 

Sandy B

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Hi Gilly,

 

I was diagnosed in March 2010 with crest/limited scleroderma. I get Raynauds all year round, fatigue and joint pain and other bits and pieces that come and go. Tried iloprost infusion this year for the Raynauds but it hasn't helped me.

 

I have had my saliva gland removed just over a week ago because of blocked saliva glands due to lack of saliva, so I'm on the mend now.

This forum is a great place for advice and understanding.

 

 

Take care and keep warm.xx

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