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#1 CindyF

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Posted 18 September 2013 - 05:06 PM

Hi everyone! I was diagnosed in July 2013 with Limited Scleroderma Crest.

 

I had symptoms that were common with this disease for years. Joint pain, tingling in hands and feet, numbness in toes, ulcers on my toes, high blood pressure, fatigue, redness on my skin and on my eyelids. Only when my feet turned blue at my doctor appointment did they think something was wrong and started testing me for blood clots and finally all autoimmune diseases. Now I am having severe acid reflux and some problems swallowing.

 

My fatigue has gotten a lot worse and so has my memory. Is this normal too? I feel like I have gone downhill since my diagnosis. Maybe its stress. Any suggestions?



#2 Shelley Ensz

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Posted 18 September 2013 - 08:06 PM

Hi Cindy,

 

Welcome to Sclero Forums!  I'm sorry you have scleroderma but send my best wishes to you. Unfortunately, it is typical to have scleroderma for many years before diagnosis.  Sometimes stress does make our symptoms worse, and other times it is the disease process at work.  Be sure to see your primary care doctor over any new symptom or worsening of any symptoms.  They can help troubleshoot issues between your rheumatology appointments.

 

I'm not sure I can say whether fatigue and memory issues are "normal".  They can occur in scleroderma, but sometimes they are caused by sleep disorders, concurrent fibromyalgia, stress, even thyroid issues. Lots of people absolutely adore our forums because we are the first kid on the block to say, go see your doctor about this!  And I am assuming that you will be one of those. :emoticon-dont-know:

 

:emoticons-group-hug:


Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Joelf

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Posted 19 September 2013 - 01:08 AM

Hi Cindy,

 

Welcome to these forums!

 

I'm sorry that you've been diagnosed with Limited Scleroderma and have been experiencing so many unpleasant symptoms. Once diagnosed, it's easy to put every new symptom down to Scleroderma, although it's possible that they could be unrelated.

 

Are you being dealt with by a Scleroderma expert? We do recommend that, if possible, our members consult a Scleroderma specialist, as sadly many rheumatologists do not have the knowledge and expertise to deal with this complex disease.

 

I've included a link to our medical pages on Reflux,Heartburn and GERD which I hope you'll find interesting and informative.

 

Please do keep posting and let us know how you're faring.

 

Kind regards,


Jo Frowde
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#4 Amanda Thorpe

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Posted 20 September 2013 - 07:28 AM

Hello Cindy

 

Welcome to the forums! Have a look at our video about symptoms of scleroderma, as well as our video about fatigue. Although fatigue is a very common symptom of scleroderma it can also be the symptom of many other illnesses which is why it's not part of the diagnostic criteria.

 

Reflux is a very common symptom of limited scleroderma (aka CREST) and in many cases very treatable with medications and lifestyle changes, if they fail surgery is also an option.

 

Ulcers are another story! I get them on the underside of my wrists, have a rather large ulcer on the side of my right foot that's been there for about 3 years and the one on the side of my left foot has opened up again but it not as bad as the one on the right foot and the one on my right shin is healing! Ulcers are usually caused by blood flow issues but mine are caused by the skin breaking down, so traditional treatments haven't really helped. If you're not on any medication you should be trying something.

 

If you're not being treated by a scleroderma expert you would find it helpful, they are fully aware of the symptoms scleroderma can cause and how to treat them, your reflux and ulcers would be par for the course.

 

Take care and keep posting.


Amanda Thorpe
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#5 CindyF

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Posted 20 September 2013 - 05:23 PM

Thanks for the replies!

 

I'm going next week for a pulmonary function test and whatever my doctor feels I need.  I've been coughing a lot and feeling some chest pain for about two or three months.

 

Yes, I did tell my doctor in July but she said it should pass and to take cough syrup! I don't think coughing for this long is okay.  So that's why I scheduled this appointment.

 

I'll let you know my results.

 

Bye for now.



#6 judyt

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Posted 20 September 2013 - 06:38 PM

Hi Cindy,

 

I see you have organised a pulmonary function test and maybe others and that is good.   

 

I want to ask if your doctor ever thought of your cough being a GERD cough.  I notice that you mention severe reflux and some swallowing difficulties and to my mind that would warrant trying PPI's or one of the other remedies to help the acid reflux.   I am inclined to think that downing cough syrup would be the last thing that would help and, for me at least, would make the situation worse.

 

We all know that Sclero sufferers can have ordinary problems too and not everything can be laid at the feet of our disease but some things can have several causes which need to be thought about.

 

Best wishes

Judyt



#7 Amanda Thorpe

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Posted 21 September 2013 - 12:39 AM

Hello Cindy

 

Judy's right, we should not assume every symptom we have is caused by our scleroderma however, in my opinion, as a non medical layperson, a cough in someone with scleroderma should never be dismissed and left to cough syrup!

 

A dry cough can be a symptom of pulmonary fibrosis - "Pulmonary fibrosis can occur without any noticeable symptoms, so it is often detected only through testing. Shortness of breath (dyspnea) during exertion is usually the first symptom. As it progresses, the dyspnea can occur even at rest. There may also be a dry cough". Or a symptom of GERD - "Although not one of the more obvious symptoms of GERD, cough is perhaps the most easily overlooked. Cough and wheezing are common symptoms often not associated with GERD".

 

If the doctor who dismissed your cough symptom is not a scleroderma expert then this is a perfect example of why someone with scleroderma should be treated by a scleroderma expert!

 

Please let us know the outcome of your lung function test.

 

Take care.


Amanda Thorpe
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#8 Joelf

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Posted 21 September 2013 - 07:27 AM

Hi Cindy,

 

Amanda and Judy have both made a really good point about GERD and coughing; I would just add my tuppence worth as one of the main symptoms I experienced in the beginning was a dry, unproductive cough and later a worrying shortage of breath on exertion (I was very fit at the time, so knew that I should not have been breathless walking up a hill that previously I would have run up without a second thought.) This led to my having all manner of lung tests and thankfully a referral to a top lung hospital.......the rest, as they say, is history! I'm afraid dosing myself with cough syrup would not really have helped in that case!  -_- I must admit that I never actually experienced chest pain as such; any discomfort was in my lungs, rather than my chest (although if I get an infection it usually goes to my chest first.) I know the symptoms so well now (I've been diagnosed for four years) so I can immediately tell whether it's a Sclero flare in my lungs, or just a common or garden chest infection. ;)

 

Kind regards,


Jo Frowde
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#9 Sweet

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Posted 30 September 2013 - 12:22 PM

Hi Cindy,

 

Welcome to these forums!

 

I'm sorry that you've been diagnosed with Limited Scleroderma. You've come to the right place for accurate information, and support from people who get what you're going through. Welcome!


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)