Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Is this scleroderma? Unsure

New Member

  • Please log in to reply
6 replies to this topic

#1 vfazfont



  • Members
  • Pip
  • 2 posts
  • Location:New Orleans, LA

Posted 19 March 2015 - 10:30 AM

I apologize in advance if this is not the correct place to ask these questions, if that is the case and you know another site where I should post this, please let me know.

Scleroderma as a whole is very new thing to me but after reading through several websites and looking at pictures I am wondering if this may be something I have been dealing with. I am a 26 year old female and was diagnosed with a severe case of Ulcerative Colitis and general anxiety when I was 18. I have attributed some of these symptoms to the fact that UC is also an autoimmune disorder and others I just assumed were “oddities” about my body that had no significance regarding my overall health. I had a really bad fall about 3 weeks ago and a cut on my finger about 2 weeks ago that are healing much slower and quite frankly they are healing strange to me-this is what started my search for answers. To keep this brief I have added pictures to my profile and will sum up my symptoms for you-

After my 2 injuries, in additional to slow healing I am experiencing a hard/tough feeling under my thumb injury and on the sides of both on my leg. It looks like my cut ‘dips’ into my skin on my leg and my knee has a large lump that is hard but not painful

Symptoms I assumed were a part of my autoimmune disease/anxiety lowering immune system:

-slow/abnormal healing

-daily fatigue

-body aches and weakness (especially in the a.m., I am especially weak in my hands. I need my husband to open any ‘jar’ that is what I consider too tight)

-I have always thought my heart would beat strangely (and have very small pains in that region of my chest, currently experiencing this) but those close to me have always said this is probably in my head from anxiety

-pain/tightness in my stomach area (not lower intestinal) that I attributed to stress

Symptoms I assumed were “oddities” that had zero significance to me:

-very low tolerance to cold/chilly weather

-cold hands and feet that are difficult to warm up (currently sitting at home with both freezing hands and feet. Temperature in the room is 70 and I have a heating pad wrapped around my feet) and turn a bluish color particularly in my toes

-‘splotchy coloring across most of my body’ (especially in hands and legs)

-small cuts on sides of fingers?

-a strange red curved line between my eyebrows

-shallow breathing that keeps me (most of the time) from being unable to rely on breathing through my nose, needing large deep breaths periodically to not act up my anxiety, which always makes it worse (I’ve noticed this has become frequent as of late, today being especially worse)

-trouble swallowing, especially during periods of increased anxiety. Recently, while experiencing an anxiety attack I began to have that sensation and insisted I needed to stop at the very next gas station for something to drink

-bouts of thirst that cannot be quenched (I was eventually tested for diabetes, which was negative)

-slightly swollen hands at times and when I experience this it is difficult for me to keep my hands in a fist because they are too weak feeling

-bouts of tenderness on my finger tips especially with cold/weak hands


I am also not sure if this is Raynauds. I don’t want to rush into calling a doctor and rev up my anxiety but from what I’ve read, some of these symptoms can be very serious.


Any information would be a great help, thank you!!

#2 judyt


    Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPip
  • 638 posts
  • Location:Auckland, New Zealand

Posted 19 March 2015 - 03:48 PM

Hello and welcome to this Forum.   


Yes this is the right place to post your story and we are happy to read it and try to offer sensible advice.   First of all, though, none of us here are medically trained and all we can give you is sympathetic support and suggestions of what to do next.


You will maybe have to take courage and get in touch with your usual GP and ask for a referral to a Rheumatologist because that is the right place to start researching what might be ailing you.   I am not in the US so do not really know what the usual form is for referrals, but somebody who is au fait with your system is sure to pop along soon and help you.


I had very similar symptoms to yours when I was your age and just put it all down to stress and being newly married and all those things, but in the end I would have been better to try to follow it up.  It is not easy though and you will have to be pro-active about your health to get the best outcome possible. 


Take Care and best wishes


#3 vfazfont



  • Topic Starter
  • Members
  • Pip
  • 2 posts
  • Location:New Orleans, LA

Posted 19 March 2015 - 05:41 PM

Thank you for your reply! I am so glad you added the last part because that is exactly what I thought it was- high stress and being newly married - I only stumbled on this disease when trying to find answers about my strange healing process that just started recently...courage is exactly it as well, I've shared my symptoms with my parents but they always insist that it's nothing so I feel like I'm being dramatic. I'll be looking into a referral tomorrow morning only because my chest pain and shallow breathing has become considerably worse today, I'd hate to do something stupid because I was afraid of looking stupid I suppose.



Thank you again, I really appreciate it!!

#4 Joelf


    Star Ruby Member

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPipPip
  • 4,549 posts
  • Location:West Sussex

Posted 20 March 2015 - 02:31 AM

Hi Vfazfont,


Welcome to these forums!


I'm sorry to hear that you've been experiencing worrying symptoms; I do understand how anxious it can make you feel, especially as fear of the unknown is the greatest fear of all!


Please note that I have no medical training (apart from an out of date first aid certificate and a fondness for telling my medical team how to do their job). Unfortunately, Scleroderma is very difficult to diagnose, not least because it manifests itself in so many different ways and affects all sufferers differently. Many of the symptoms you describe can relate to any number of autoimmune diseases, including Ulcerative Colitis.  I would also mention that anxiety and stress can exacerbate these problems and as stress can slow down wound healing, it's possible that this could be one of the reasons your injuries are taking longer to heal than normal and that your symptoms are so much worse during an anxiety attack. I'm afraid stress and anxiety are not good, particularly in relation to autoimmune diseases. :(


As Judy has advised, it is better to be proactive with your health problems and make an appointment to see your doctor and possibly a rheumatologist to see if further tests are required in order to follow up with any treatment.


Kind regards,





Jo Frowde
ISN Assistant Webmaster
ISN Sclero Forums Manager
ISN News Manager

ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#5 Amanda Thorpe

Amanda Thorpe

    Platinum Plus Member

  • ISN Senior Support Specialist
  • PipPipPipPipPipPipPipPipPipPipPip
  • 2,921 posts
  • Location:U.K.

Posted 21 March 2015 - 01:47 PM

Hello Vfazfont


Welcome and most of what I could say has already been said! I can confirm that diagnosis of scleroderma can be long and arduous because there is no one diagnostic test to confirm it, rather diagnosis is based on symptoms, physical exam and clinical history. I suggest you see a scleroderma expert and have a look at our scleroderma video series which includes videos about symptom and diagnosis of scleroderma as well as our Raynaud's video series.


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)

#6 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,263 posts
  • Location:Minnesota

Posted 31 March 2015 - 07:07 AM

Hi Vfazfont,


Welcome to Sclero Forums. I'm sorry you have concerns about autoimmune disease and send my best wishes to you.  Please keep in mind, of course, that I have no medical training at all and verify everything I say with a reliable medical source.


I think you could begin by consulting your primary care doctor about your concerns. To me, most of them sound like they might be entirely in line with ulcerative colitis and anxiety.  I know it must be extremely hard to draw the line between the symptoms of anxiety and other illnesses, especially since anxiety can make one worry so much about other illnesses, so it is quite a catch-22, isn't it?


I'd approach it by first just trying to figure out whether or not you have Raynaud's. It's really rather simple.  Do your hands or feet turn white or blue in response to cold or stress?  If so, then you may want to have further testing. With vascular lab testing, they do very precise tests to measure the exact temperature of every finger after generalized cooling and heating.  Some doctors skip the fancy testing for starters and just dunk your hands in a bucket of ice water to see if they turn the right sort of colors, quickly enough.


What I like about Raynaud's is that it is measurable and visible. You can't fake attacks, or their severity, and the colors neatly display for the whole world to see!  Because of that, if you are doubtful you have Raynaud's, it is quite possible that you might just have poor circulation which can often be improved by drinking more water, eating better or more regular meals, and appropriate exercise, etc.


I hazard to say that most of us with Raynaud's would say that attacks are absolutely unmistakable. The color changes are quite startling and we move into action to warm them up as soon as possible. Therefore, it may be a very good thing that you are not sure you have Raynaud's.  If you have poor circulation, though, then you will still want to do things to both improve your circulation and to avoid developing Raynaud's.  See Raynaud's Prevention which includes a video presentation by Amanda Thorpe.


I'd use Raynaud's as the cutting edge to see whether or not other things matter.  Some problems swallowing and breathing go along with anxiety, and so on and so forth. Its the range from slight to severe and constant where in the middle the line is usually drawn between anxiety, and symptoms worth pursuing.  So pay special attention to doing everything possible to keep anxiety under control.  If the anxiety is just fine, you are feeling calm, happy and providing excellent self-care, and then you notice singular prominent symptoms when the anxiety is at bay, then you can more confidently zero in on them.  I'm sure worrying about scleroderma is not going to help anxiety at all.


Therefore, let's back off the idea of scleroderma for a minute, okay? The first step is make sure your anxiety and ulcerative colitis are being managed excellently. Then, consider the question of Raynaud's.  You can have Raynaud's all by itself, even.  If you do have it, then get it properly diagnosed and deal with it.  I don't think going to the doctor with a laundry list of things that they feel are already accounted for is going to get you anywhere, especially since they can account for the vast majority of them with things you have already been diagnosed with, so they very likely to chalk it all up to anxiety. So my reasoning is that focusing on just a single item, at this point, would be more effective in moving your medical care forward IF it needs to be moved forward.  (That, I simply don't know!)


So, if it were me, I'd start with Raynaud's.  It's not a "soft" symptom. It's provable. It's a great starting point...or perhaps even a great way to put the idea to rest, depending on how things go. In any regard, we're here for you as you go through the sorting out process, and as you see, we offer a whole range of ideas in how you might want to approach things!



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 quiltfairy


    Silver Member

  • Members
  • PipPipPipPip
  • 165 posts
  • Location:mapleton , Iowa

Posted 31 March 2015 - 02:08 PM

I can testify to anxiety.  I have had it for many years.  


Some times I just need to step back and relax.   I also have meds to help with anxiety.  I would sugest seeing your primary care doctor and also seeing a therapist. 


It took me getting a broken neck injury at work to find out I had Systemic Scleroderma.  I think the day I found out what was going on I cried most of that day and the next thinking my life was coming to a end. 


Yes this is a incurable disease but I will also have a long life .


 With the anxiety I had chest pain, trouble breathing and at times it even effected my vision and ability to do my job.  Now before I go into the total panic thing, can't breathe, heart beating too fast, I take my prn meds and relax.  Then I realize it is just anxiety.  If the issue continues after I take my meds I know it is time to call my GP or Scleroderma Doctor.


So I would suggest a call to your doctor and see a Scleroderma Specialist