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I Just Want..

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#1 angie louise

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Posted 28 March 2010 - 11:14 AM

I'm Angie and suffering from this horrible condition for the last 15years. My life nowadays is becoming unbearable. I am not and never have been a vain person, but I just look so bad and just wish I looked NORMAL. I feel I'm turning into a recluse as its less painful to go out and be seen, as people stare, laugh and point at me. This cuts me up. I am only 42 and for the past 5years it has been so obvious Im sick just by looking at my face. My top lip has all but disappeared and my skin is nearly totally covered in the red rash. These things aren't painful physically but affect my life the most.
The pain I endure is mainly in my hands and chest. My hands are unbearably painful, I have some fingers so tight they no longer bend and some just curled over. Presently I have ulcers under my nails and they make me cry as they are so painful.
Anyway this is just a little of my condition.
I don't take any meds anymore as they don't help me.
I recently had a course of 6hrs a day for 5 days of Illoprost infusion which didn't help me either.
I'm originally from England but now live In Mexico with my husband James.
Right now I feel my life stinks big time and Im feeling really down today!
Maybe I feel a little better getting this off my chest.
If there's anyone there...Thanks for listening...(or reading) to me.

#2 janey


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Posted 28 March 2010 - 11:28 AM

Hey Angie,
I am so sorry to read about everything you are going through. Have you been able to find a doctor where you are that knows about scleroderma? I know it's always hard to find and set up new doctors when you move. The physical changes that scleroderma cause is definitely something that affects all of us. I, too, have no lips, just deep vertical lines that travel to where lips are suppose to be. I have finally accepted it and have decided that those that have a problem with it - well, it's their problem! We have to keep on living and enjoying life in the best ways that we can.

We do have a section on emotional adjustment that has help me a lot. It offers lots of ways to cope with our many issues and to relax. Do take some time to read through that section.

I'm sorry the Illoprost didn't work for you. Have you tried anything else? Based on the fact that you have so many new and ongoing symptoms, I would highly recommend seeing a rheumatologist, preferably a scleroderma specialist. If you need help finding one in your area, let us know and we'll help.

Feel free to get it off your chest anytime! This is the place to do it.
Janey Willis
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#3 Amanda Thorpe

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Posted 29 March 2010 - 08:14 AM

Hello Angie

Welcome to the forum! Firstly what are you doing about the chest pain? There could be many causes some minor some major so it is something you should definitely see a doctor about if you have not already.

Janey's suggestion that you consider seeing a scleroderma expert is a very good one and something to consider. I know you say that medication does not help which is why you have stopped taking it but scleroderma is a progressive illness after all.

Now the aesthetic changes scleroderma brings with it are in a league of their own. We make deals with ourselves, I can cope with this as long as I don't get that...then that comes along and it's I can cope with that as long as I don't get this...then this comes along. Ultimately we cope, that doesn't mean it's easy, pleasant or something we want to do but something we do. It is my considered opinion that we sclerodermians are incredible, resilient, and determined...we have to be!

Take care.
Amanda Thorpe
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#4 susieq40


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Posted 29 March 2010 - 04:05 PM

Dear Angie...Go ahead and let it out!!! It helps.This is a great place to do that! My Sclero isn't as much on the outside as on the inside. But my skin does hurt, and my lips are disappearing. And with the meds they have me on, I've put on 20lbs now. That I hate with a passion! I don't even think beautiful people, like models, love the skin they are in. No one is perfect and we all have to look in the mirror some times...
It is hard though, don't get me wrong. I feel for you I really do! I would look into the chest pain though. I went undiagnosed for 3 years with the Sclero lung disease. When it's on the inside, we can't see it and have a tendency to ignore symptoms. Get checked! Never know! Definately don't want to get worse! Warm Hugs and Best Wishes!


#5 bookworm


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Posted 29 March 2010 - 04:57 PM

Hi Angie,

I can certainly understand what you mean! My fingers are stiff and bent, and I have no lips. I have a rash all over my face and a bad case of psoriasis that is due to taking Prednisone all the time- very low dose.

I also understand your feeling that medicine can't help you, but I hope you will reconsider that. There is help available and I just believe that if you find the right doctor, you will get relief. Don't give up!

Mary in Texas

#6 enjoytheride


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Posted 29 March 2010 - 05:29 PM

Having pain wears one out so that it's hard to deal with other things at the same time. I have great sympathy for your situation. You certainly can let it out here as many will be able to really understand. I wish we could do more. (((((hugs)))))

#7 Sandy B

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Posted 30 March 2010 - 01:06 AM

Hi Angie.
So sorry you feel so bad about yourself, it made me feel so sad when I read your post, so I just want to send you a big hug and say I hope you feel a bit better soon. Depression can be such a lonely business and it isn't a case of just snapping out of it, so hang on in there,

I was just wondering whether camouflage make-up might help hide the skin blemishes. I have purple scarring on my nose, totally unrelated to the scleroderma, (surgical scar) and I use camouflage make-up on it and have been very pleased with the result, I wonder whether this would be an option for you to try.

Take care

Sandy B

#8 Jeannie McClelland

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Posted 30 March 2010 - 09:53 AM

Hi Angie,

I am so sorry you have so much to deal with. It does help to talk about it to understanding friends, but it can also be helpful to talk to a professional. Autoimmune diseases can cause depression in and of themselves, and when you add in all the other things you and many others have to deal with, it can be pretty overwhelming.

I thought Sandy B's suggestion about the make-up has a lot of merit. Is there any possibility of seeing a camouflage cosmetician (as they are called in the UK)? I think it could be money well spent. Often a plastic surgeon will be able to recommend someone skilled in this area. Anything that improves your spirits will improve your overall quality of life.

Please post often and don't ever feel alone. We're here for you.

Best wishes and warm hugs,
Jeannie McClelland
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#9 Sandy B

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Posted 31 March 2010 - 04:03 AM

Hi Angie,

Hope you are having a better day today. Just a post script to my message the other day, about camouflage make-up. Have tried concealer sticks, without succes as they tend to rub off, but the make-up I bought comes in a tube with a wand which you apply it with and then gently blend with a make-up brush. I bought it from a department store in the UK for about £15 and it is a well known make (with the initials E L, sorry can I do this) anyway just wanted to say, I didn't have to spend a fortune and it has given me so much more confidence. I feel people no longer stare at me.

Take care

Sandy B