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#1 fortson

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Posted 26 February 2009 - 10:46 AM

Well I guess since I replied to a post I should at least introduce myself. I've been embarrassed to post because I don't seem to have the problems that some of you have and yet it wasn't that hard to get a diagnosis of limited sclero.

On my 30th birthday my husband took me to Mexico for vacation and while snorkling we noticed my hands changing colors and a tingling sensation as well, we thought that it was jellyfish stings but come to find out later that it was my first episode of Raynaud's. So my primary care physician pulled blood to look at my ANA and was positive and then referred me to a rheumatologist who determined that I had limited Sclero.

I recently started having trouble with shortness of breath while exercising, and I exercise a lot, so I went to have a pulmonary function test (PFT) and it was determined that I have asthma. I also have had some trouble swallowing and will have some tests done for that in the near future, I forget the names of them, but the gastrointerologist (GI) I saw seems to think its a motility problem. I'm on Nifedipine for Raynaud's and Aciphex twice a day for the reflux but other than that I'm healthy and still running marathons and triathelons! I have noticed some muscle and joint soreness here recently but not sure if that's age or sclero.

I'm also the proud mother of a beautiful two-year-old that my husband and I just adopted from China. She had a cleft lip and palate which we had repaired and my problems seem small compared to the life she lived the 14 months before we met her. Thanks for letting me stalk the forum for so long!

Cindy

#2 Shelley Ensz

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Posted 26 February 2009 - 11:53 AM

Dear Cindy,

Welcome to Sclero Forums! I'm amazed that you got diagnosed so quickly and easily. Most unfortunately that is not the norm. As I understand it (and I'm neither a doctor nor a statistician) it's an average of six years for women to be diagnosed (three years for men with the same symptoms).

This must be a sign of something good, perhaps like increased awareness of scleroderma, at least in your medical facility. It's terrific that you are able to still enjoy your athletics. Triathelon?! Amazing. We will have to make you our personal Sclero Fitness Trainer!

Give some extra warm cuddles to your wonderful daughter, just from me.
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 Penny

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Posted 26 February 2009 - 01:51 PM

Hi, Cindy, and welcome to the land of the de-lurked!

You will find a great group of people here that will pick your brain for exercise ideas and offer a shoulder whenever you need it.

Penny

(ps- congratulations on your little girl... she was born under your heart no matter the distance in miles.)

#4 Jeannie McClelland

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Posted 26 February 2009 - 01:59 PM

Hi Cindy!

I want to welcome you to the Forum too. I'm glad you've introduced yourself (and please may I sign up for your ISN Personal Trainer Services? After Shelley, of course. :lol: )

Have you found your way around the site yet? On the menu to the right, under the Medical drop-down, you'll find a sub-section for Scleroderma which has another drop-down that will lead you to a treasure chest of information. You can also search the Forum too - I keep going back to old posts, because the memory isn't what it used to be.

Now what was I saying? Oh yeah! Many congratulations on your daughter!! I was impressed by the Marathons and Triathalons, but what really impresses me is that you keep up with a 2-year old. Now that takes stamina.

Warm welcomes and best wishes,
Jeannie McClelland
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#5 jillatk

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Posted 26 February 2009 - 03:04 PM

Hello,

This is my first time to this website. I was given the diagnosis of Systemic Sclerosis on Monday and have been spinning around trying to figure out what it is and what I can do about it. This all started after seeing my doctor for my annual physical and mentioned that my hands are sensitive to cold and two fingers turn sheet white and freeze up over a little cold. I also have been having strange pressure on my head and then I see colors and can't focus. I have a long history of treatment for asthma. I also have always been susceptible to colds that land in my chest and cause significant breathing issues.

In general I am healthy, active and strong. I can hike 20 miles a day and am out skiing, rock climbing, hiking on a regular basis. I don't feel sick and have no pain, other than the usual bangs and bumps that happen in an active life.

My doctor ordered an MRI of my brain and discovered some "white spots". I saw a neurologist and he said there is no neurological impairment and it is likely normal aging. The head pain is just a migraine. My blood tests on the other hand came out alarmingly. My ANA titer level is off the chart high. My doctor then did a full ANA panel and some other numbers came back off the chart high as well. She has come to the conclusion that I have Systemic Sclerosis based on the blood test and the limited symptoms I have. Next week I am scheduled for a high resolution CT scan of my chest. I am desperately trying to get in to see a rheumatologist - my doctor is calling in favors to get someone to see me before July.

So I guess I have a few questions. Can I feel healthy, not fatigued, no pain and still have this serious diagnosis? What are the chances that there is another diagnosis? Is is possible that the worst symptoms will simply be Raynaud's?

BTW - I live in Eastern Nevada, where the nearest large town and health care is in Salt Lake City, UT.

Thanks for any feedback/support.

#6 Shelley Ensz

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Posted 26 February 2009 - 03:32 PM

Hello Jill,

Welcome to Sclero Forums!

I'll attempt to answer some of your questions. However, you must keep in mind that I have no medical training; in fact, quite often, I can't even pass a blood test.

Yes, it's quite possible that you may have Raynaud's and antibodies but never develop anything further. About 1 in 20 adults have Raynaud's. As I understand it, it's even more likely to have Raynaud's with some antibodies if you have some close family members who have autoimmune diseases (such as rheumatoid arthritis, lupus, scleroderma, etc.). In fact, about half of the people who develop some symptom of connective tissue disease, never go on to develop any definitive disease, and the majority of people with Raynaud's never develop scleroderma. That is why scleroderma is diagnosed based on a constellation of symptoms (and never on blood tests alone).

On the flip side of that, many people have Raynaud's as their initial symptom of scleroderma, often preceding the onset of other symptoms by months, years, or even decades.

So, you might never get any worse than you are now. Your Raynaud's might even clear up, once you know what it is and have a good plan for avoiding attacks. I may be wrong (I often am!) but I'd guess you'd have maybe 50% odds or perhaps even better of never developing scleroderma. Then again, there is no typical course of the disease and the onset is different for everyone.

That sort of uncertainty is very hard to live with. Most of us need to develop additional coping skills just to deal with the uncertainty and the new threats to our health and well-being. Keep up with your active lifestyle! See a scleroderma expert.

I'm sure that others here will give you some excellent advice on how to keep things in perspective and cope during this time, to help reduce the stress of it as much as possible.
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.

#7 jillatk

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Posted 26 February 2009 - 03:42 PM

Shelley,

Thanks for the kind words. My mother has rheumatoid arthritis (RA). She got hit with it at about the same age I am now (44). Because of that, I determined to live as healthy and stress free as possible to avoid her same destiny. When my doctor called and told me that my blood test was problematic, I immediately suspected that I was heading for the same diagnosis. Thankfully, my sed rates are normal, as is my liver and kidney functioning.

I will have to say that I have never heard of this disease and was horrified after looking at info on the internet. I have lost some sleep over this whole thing. It is a terrifying prospect to have a full blown episode of this disease. I am also quite aware of the dissonance between my experience of being healthy and the data that suggests that my body is at odds with itself. I am a psychologist and often work with folks who have chronic pain and other disorders such as multiple sclerosis (MS). I found myself thinking about all the things I encourage them to do to have the best quality of life.

I have a super support network that I am using heavily right now. We are all in a state of shock and denial. It has really thrown a monkey wrench into my life. It is nice to know that others are living healthy, meaningful lives with this disease.

Jill

#8 janey

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Posted 27 February 2009 - 06:33 AM

Jill,
Welcome to ISN. As you can see from Shelley's post, we can keep you occupied for a very long with lots and lots of information. :) I agree with everything she said! With this disease anything or nothing can happen. The main thing is to just be aware of your body and take note of any changes such as you did with the Raynaud's. The trick is to catch things early and stop them in their tracks.

Emotionally you are doing the right thing by working with your extended support system. That is one of the best coping mechanismsout there. Keep up the hiking, the socializing and the communication! Continue to live life as you know it, but just be aware. Please keep us up on how you are doing.

Cindy,
I'd like to welcome you again and say congratulations on your new daughter!!!! I can't think of a more positive thing to help you through the rough times. We have several super moms and dads on this site who are doing well because of their children. Talk about a great reason to beat the odds!

Big Hugs to you both,
Janey Willis
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#9 Sweet

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Posted 27 February 2009 - 06:41 AM

Hi Cindy,

Welcome to our group. NEVER be embarrassed. Sclero effects everyone differently, and with a large range of severity. We're just so glad you're here!
Warm and gentle hugs,

Pamela
ISN Support Specialist
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#10 Jeannie McClelland

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Posted 27 February 2009 - 07:05 AM

Hi Jill,

Shelley is absolutely right. It might never go beyond Raynaud's. And in my personal experience, even if it does, with all the new treatments available (and more coming down the line everyday), 'it' might be stopped in its tracks. That's what has happened with me and lots of others.

You mentioned: "I am a psychologist and often work with folks who have chronic pain and other disorders such as multiple sclerosis (MS). I found myself thinking about all the things I encourage them to do to have the best quality of life." Would you be willing to share that advice?

In the meantime, welcome!

Best wishes and warm welcomes!
Jeannie McClelland
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#11 razz

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Posted 27 February 2009 - 07:28 AM

Cindy,

Welcome to our forum and congratulations on the new member to your family! Don't fret about being embarrassed to post here. Many of us are at varying stages and/or degrees of scleroderma and other symptoms. It is amazing that you got diagnosed right away and are now on the road to treatment. I hope you feel well and you can stalk as much as you want. We don't mind. (I didn't post right away either, but now you can't stop me!)

Jill,

I also wanted to welcome you to the forum. I sure could use a personal trainer to keep me going on my slow days! Even at my healthiest, I wasn't as active as you are now. I am impressed!

You've come to the right place to ask questions. I am not a doctor nor do I have a medical background, but I can say it is difficult to predict what a individual's prognosis with scleroderma will be. You have the right psycholgical mentality and determination to lead as normal a life as possible. I am also glad you have a group of support in place to help you out. We are all too familiar with that monkey wrench to say the least. I was diagnosed over ten years ago with systemic scleroderma and after many years of adjustments, live a normal and fulfilling life as possible.


Welcome and we look forward to hearing more from both of you!!

Hugs,
Razz
Live well, Laugh often, Love much

#12 jefa

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Posted 27 February 2009 - 08:05 AM

Welcome to the ISN Sclero Forums, Cindy and Jill. It is good for both of you that you are active and I hope you will be able to continue with this.

Cindy, certainly having your new child will keep you moving and it is always good to have a focus outside of yourself for motivational purposes.

Jill, as someone who works with chronically ill people, I am sure you will be a valuable contributor on the forums.

I look forward to getting to know each of you better. Please let us know if there is anything specific you'd like help with on the forums.
Warm wishes,
Jefa

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#13 fortson

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Posted 27 February 2009 - 09:12 AM

Thank you all for your kind words and I'm sure I'll post more as I get more questions! :)
Cindy

#14 Nina

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Posted 27 February 2009 - 03:03 PM

Welcome Jill and Cindy,

So glad you have found our wonderful site. There are an abundant number of caring, compassionate, bright, cheerful, helpful, positive, supportive people on this forum. Don't ever be hesitant to post and believe me, there are no questions that are dumb nor should any question or concern ever make you feel embarrassed. We are all in this thing together!!

Cindy, you are impressive, marathons and triathalons? Just keep on running, don't let this diagnosis even enter your mind. It may very well turn out that the Raynaud's is the worst of it for you, you just never know. So, until something else does show up, keep it out of your mind. And focus your time and energy on that wonderful little baby ~ congrats!

Jill, how fortunate that you have some experience with chronic illness. I'm sure you will heed your wisdom and treat yourself well. This disease is so different in so many ways than most others, and many people just don't understand. Try to learn a little at a time, and know that each and every person experiences different levels of pain/tiredness/lung involvement/digestive involvement on and on and on. We are all different, each and every one of us!! Imagine that.

Actually, I haven't posted in a while, and it seems I'm trying to make up for lost time in one post. Sorry. Just wanted to welcome both of you to our wonderful place to be ourselves!

Much love,

Nina (DE)

#15 LisaBulman

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Posted 28 February 2009 - 03:05 AM

Welcome Cindy and Jill!!!

Cindy,
I am so glad that you have decided to post! We don't bite... Congrats on your daughter!

As you both can see we are a friendly bunch here with a wealth of information! It may seem overwhelming at times but take it slow. Never give up what you are doing now, exercise, socializing or any activity unless you have to. Live life as you would do if you were not diagnosed but just be aware of your body and the changes that may or may not take place. If you are feeling new symptoms mention them to your dr even if they seem small. If there are changes you want to nip them in the bud.

You both have many links to read from our sclero.org site, but please don not be afraid to post or ask questions! We are here to help with information and support!

Hugs,
Lisa
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#16 jillatk

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Posted 28 February 2009 - 01:46 PM

Thank you all for your responses of support. I am getting over the shock - I feel like I have lived about 10 years in the past week. I am feeling way more hopeful than Monday night when my doctor called me (always a bad sign when a doctor calls you personally and after hours) and told me her diagnosis.

In thinking back I believe I have probably been having various symptoms for many years, but always just lived with them or worked around them. It was just in passing that I mentioned these Raynauds symptoms to my doctor at my last annual physical. So now I just have a name for it and some direction to go to manage things. That feels doable. I have been making adjustments for several years - certain foods I just cannot digest, so I quit eating them, I had my husband put hand guards on my motorcycle to reduce the cold air on my hands, packing extra clothes and gloves when backpacking and climbing etc. Making these adjustments have kept me active with a good quality of life.

Some of the things I do with my clients with chronic illnesses (both physical and mental) are:
1. Be in the moment - practice the skill of mindfulness - observe, describe and participate in whatever you are thinking or feeling. Just allow it to be. Sometimes the best thing we can do is to tolerate uncomfortable feelings. Focus on one thing at a time - don't let your mind swirl around and generate tons of anxiety and fear about things you cannot control and may only be "worst case" that your mind and anxiety are generating. I can go on forever about mindfulness, but won't unless folks want more info about it. It is just a super useful tool for everyone.
2. Deal with anger directly. There is compelling research that suggests anger that is unresolved increases pain and flares in disorders such as fibromyalgia, and chronic fatigue syndrome. If you are angry, then be angry and do something useful about (instead of something unhealthy like isolate, shutting down, injuring oneself, using substances.) It is hard to learn how to do, but is important especially when you have a body that is not cooperating.
3. Be active - find things to do every day, even if they are small things. Having structure is important to sanity and stability.
4. Get out and put your nose in the air and get some sunshine and fresh air everyday.
5. Find meaning and purpose everyday.
6. Find joy in the small things - a child's giggle, a chirping bird, a nice breeze over your skin.
7. Get exercise at whatever level you can everyday. There are tons of research on neurotransmitters (serotonin and dopamine in particular) and the effect of exercise on those levels in your brain. 10 minutes twice a day will in fact change the way your brain looks in terms of areas that are lit up.
8. Contact with people. Want to light up your brain then have contact with people. Develop a strong support network and use it.
9. Take good care of yourself - eat a healthy diet, get exercise, get adequate sleep, take your meds as prescribed.

Those are the basics. I can go on and on.

I have a high resolution chest scan scheduled for Thurs and hopefully can get in to see a rheumatologist in the next week or two. I will post info as I get it.

Jill

#17 debonair susie

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Posted 01 March 2009 - 11:28 AM

Hi Cindy,

I'm so glad you are posting and am pleased that you got a dagnosis as quickly as you did, too.
It's so much better when we can be treated sooner, rather than later, when dealing with symptoms and pain of Scleroderma. It's especially important for us to get treatment for Raynauds,, as you spoke of those symptoms also.

It is truly wonderful that you are able to participate in marathons and triathalons...I am in awe of your ability to do so!

Congratulations to you and your husband and to your little 2 year-old daughter, too! May all of you enjoy the special times to come to the fullest!
Special Hugs,

Susie Kraft
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#18 debonair susie

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Posted 01 March 2009 - 11:39 AM

Hi Jill and welcome to "the family"!

I am so glad to read that you aren't letting your illnesses control you!
That isn't an easy thing to accomplish!

To live life to its fullest and
to do our best to keep as positive an attitude as we can, truly helps us
feel the best we are able.

I really like the list you posted...it's great!

Thank you for posting and look forward to hearing from you anytime!
Special Hugs,

Susie Kraft
ISN Support Specialist
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International Scleroderma Network (ISN)

#19 MajorMark

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Posted 03 March 2009 - 12:16 PM

Nice to meet a fellow newbie. I have had Raynaud's for 6 years and did nothing for it except tolerate it. My story turns a little left of yours. Two months ago I started with respiratory shortness of breath. The CT showed 4 masses that were negative for cancer, but did show pulmonary fibrosis and interstitial lung disease; also severe pulmonary hypertension. The good news for you is that you are getting a CT and any lung involvement can be ruled out. There are A LOT of people with Raynaud's and in some cases it even improves, and they never get any other systemic involvement. I do suggest you get treatment for the Raynaud's. I will send good thoughts your way.

Mark

#20 Penny

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Posted 03 March 2009 - 04:42 PM

Mark,

Welcome to the forum!

You will find a great group of people here ready to ask your opinions and offer their own at the drop of a hat and will form behind you like a solid wall of support if you ever need it.

Penny