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Hi New here with 2 questions


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#1 tsaddict

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Posted 03 November 2008 - 08:35 AM

Hi, My name is Gina. I'm new here and I have a question. I have a positive SCL-70 and the rheumatologist and dermatologist think I have scleroderma. I have a facial rash, long term fatigue, uveitis, and seem to be developing Raynaud's of the toes. However, they are also testing me for carcinoid tumors with a 24 hour urine test. I am currently awaiting the results. Have any of you had this test done? I'm having flushing which is why they are doing this test. (I also had a spot show up on a chest x-ray of the lung.) I'm nervous. I didn't think it was a big deal to turn red but the doctor saw it and was concerned.

My second question is related to fatigue. I really really struggle with it. Is this something you all struggle with too?

Gina

#2 Snowbird

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Posted 03 November 2008 - 12:23 PM

Hi Gina

I can't answer your questions about the tests you've had run but fatigue is a major player in this disease. You have come to the right place for support and answers since there's always someone here that can help and no doubt, before long, you will get a some answers. I just wanted to say hello and welcome you in the meantime.
Sending good wishes your way!

#3 Peggy

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Posted 03 November 2008 - 03:38 PM

Welcome. I think you will find this site a wonderful place to go for support and for answers to questions. Everyone here is fantastic.

With regard to your questions, I too have had the 24 hour urine collection. This was done by my oncologist and was for testing being I have used cyclophosphamide, they are watching my kidneys and bladder.

With regard to fatigue, I struggle with it daily. It's something that never seems to get better and I have just come to realize that I am now a daily napper. I don't try to fight through it anymore and if I'm tired I lay down and rest. From what I've seen this is the one of the common element that we all seem to have is terrible fatigue with this disease. When I've told my sclero doctor about this she said that a lot of her patients struggle with it too. I have yet to find a remedy for it though.

Again, welcome and I wish you all the best.

Warm hugs,

Peggy



#4 Nina

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Posted 03 November 2008 - 04:04 PM

Hi Gina:

So glad you found our site and wonderful forum. I'm sure someone will be able to help you with regard to the tests that concern you. I am not familiar with them, but wanted to welcome you.

And YES ~ fatigue is terrible. I have been told that I also have fibromyalgia, so I have always attributed the fatigue to that. Only now I have learned that I have Limited Scleroderma/CREST and Raynauds and who knows what else. I have had to learn how to really pay attention to my fatigue ~ if I over do it, the results can be terrible, as in days in bed. I tend to push myself and find this one of the hardest lessons to learn.

Stick around, ask lots of questions ~ the folks here are all wonderful.

Much love,

Nina (DE)

#5 janey

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Posted 03 November 2008 - 04:08 PM

Gina,

Welcome to the ISN forum. You've found a great place for support, information, and to just unload. I'm not familiar with the urine test and I've never experienced the flushing that you are experiencing; however, fighting fatigue is an on-going problem. Some medications can help reduce it while others can add to it. Many times it's a matter of trial and error and finding what works and what doesn't. We do have an information page on fatigue. You might find some ideas to try there.

It does sound like your doctors are working toward getting you a diagnosis. Scleroderma can be a very difficult diagnosis to make. It takes quite a bit of testing and as much information from you that you can supply. Please tell your doctors everything. The more information they have the quicker and best the diagnosis.

Please let us know how your test goes and what you find out. In the meantime, if you have questions, just asks. Someone will always help to find an answer.

Big Hugs,
Janey Willis
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#6 Amanda Thorpe

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Posted 05 November 2008 - 12:31 PM

Hello Gina

If they made sleeping an olympic sport someone with scleroderma would bag gold, silver and bronze. You can't fight it or work through it you have to accomodate it. Today I spent most of it asleep because my body would not let me do anything else, a crash and burn day as a result of too little rest and too much activity.

Fatigue is common to everyone with scleroderma and some do find meds to help with it whilst others sleep/rest more in response.

I have had the urine test for kidney function when in hospital, what fun it was.

Take care and post as the questions come, someone will have experienced it and someone else will have a comment to make about it. :lol:

Amanda
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#7 Little Red

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Posted 05 November 2008 - 02:20 PM

Hi Gina,

Welcome

You've come to the right place for support and info.

I can't address your blood tests but know a lot about fatigue. I rest as much as possible and try to pace myself. That doesn't always help either. Try to take it as comes.

Take care and again welcome

Little Red

#8 Kamlesh

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Posted 05 November 2008 - 06:07 PM

Gina,

Fatigue is very common in this disease. I can assure you once the disease is under control and you increase your physical activities, it will go away. My worst days are behind me. At the peak of disease, I had no energy, no willingness to do anything, or eat healthy food. But, couple of years of max dose of Cellcept along determination, I am in best shape in the last five years. I am truly looking forward to enjoy my rest of the life. If I can do it, anyone on this message board can do it.
Kind regards,

Kamlesh


#9 canon

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Posted 05 November 2008 - 06:24 PM

Hi Gina and welcome,

Can't help you with the flushing but your doctors sound pretty good. Have had a few 24 hr urines due to protein in my urine but that was for kidney function alone. Not sure what the connection is for carcinoid tumors and will keep you in my thoughts. Fatigue is something I can identify with. It is not an easy thing to cope with either.

People here are great and someone usually can identify in part with what you are going through. There is so much information too that is very helpful.

With gentle thoughts.

Judy
A happy heart is good medicine.

#10 Cher

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Posted 03 February 2009 - 10:28 AM

Hi Gina,

I have flushing too, they checked me for carcinoid and I also had a nuclear endocrine scan that was normal. I still have severe flushing with no answer.

Cher

#11 Margaret

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Posted 03 February 2009 - 02:04 PM

Hi Gina ,

Welcome to the forum. I was curious as to whether you and Cher are taking any high potency multivitamens on your own. High levels of Niacin can cause flushing. Just a shot in the dark.....thought I'd throw out to you.

Take care, Everyone,
Margaret

#12 WestCoast1

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Posted 03 February 2009 - 02:13 PM

Hi Gina,

Welcome to this forum. It seems overwhelming when you have so much going on. One day (or issue) at a time is the only way I can deal with it all. That along with folks that relate to your issues, a team of good doctors, and the ability to see the bright side in everything can really help.

It sounds like your immune system is not happy right now. Have your doctors talked to you about medications for the fatigue? There is no way to get rid of it, but I for one feel a little better when I am on Plaquenil than when I am not. I feel a little less joint pain, fatige and nausea.

Take extra special care of yourself and let us know if you have more questions...chances are one of us has the same question, or an answer! :)

Hugs~
erin
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#13 Stef

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Posted 03 February 2009 - 04:11 PM

Gina,

Hello and Welcome!

I agree with all the other posts. I don't think there is anyone that doesn't struggle with fatigue or have at least some slight limitation. We understand!

You've come to a wonderful place for support, and a fantastic information source as well at this site!

Looking forward to your posts!

-Stef

#14 Jeannie McClelland

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Posted 03 February 2009 - 05:36 PM

Hi Gina,

I just wanted to add my welcome to the Forum. Sorry you needed to, but I'm glad you found us!

Flushing - I'm not much help here, except to agree with Margaret on the niacin-caused flushing. They have me on 500mg 3 times a day to help with the Raynaud's and cholesterol and certain types of niacin turn me bright red and make me itch like mad.

Fatigue, well by now you know that is a major issue with most of us. My kids have decided I'm not Grumpy (well, I am, but that's beside the point) - I'm really Sleepy! I should never have let them grow up on Snow White and the Seven Dwarfs! :lol: I stopped being Grumpy when I realized I just needed to go with the flow and take naps as and when needed. Some days it really is better just to stay in bed. :)

Hope you get good news from your tests.

Best wishes and warm hugs,
Jeannie McClelland
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