• Announcements

    • Joelf

      Upgraded Sclero Forums!   05/18/2017

      Welcome to the Upgraded and Redesigned Sclero Forums!!   Our Forums are even better and more up to date than before.   Happy Posting to all our Members!!
doublehippy

New here.....just diagnosed

7 posts in this topic

Hello and I'm happy to have found you all! 

 

Long story short, my feet started swelling at the end of last summer.  Within a month or so, the skin on the top of my feet, around my ankles and up the calves of the legs started feeling tight and were mottled red.  I went to my primary care physician, who ordered up tons of tests; x-rays, mri, bilateral venus doppler of legs, to rule out any sort of vascular issue.  Eventually, I was referred to a Rheumatologist who ordered lots of bloodwork.  One test led to  another and to another.  Bottom line: my ANA is 1:1280 Centromere; CRP and Sed Rate are elevated; SCL 70 is Negative.

 

I now have an appointment. at the UPMC (University of Pittsburgh Medical Center) Scleroderma Clinic on May 4th with Dr. Domsic and am hoping to get some answers to so many questions.  I have no GI issues (other than constipation) although I do get short of breath at times.  I have indication of Raynaud's in one finger only!  My hands are fine, no hardening or tightening anywhere other than my feet and ankle area. 

 

My biggest issue is exhaustion!!  I have zero energy and it's so frustrating.  Sure, I've slowed down (I am 68, will be 69 next month) but this fatigue is debilitating!!  I fall asleep sitting upright in a chair.  I feel drugged, constant heavy feeling eyes.  I force myself to get up and move and get nothing done.  Is this a symptom?  My Rheumatologist sort of dismissed this.

 

Thanks for taking the time to read and I sure would appreciate hearing from any of you who have dealt with any sort of extreme fatigue as a symptom. 

 

Linda

Share this post


Link to post
Share on other sites

Hi Linda,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with extreme fatigue symptoms and I can understand how debilitating it can be.

 

Fatigue is certainly a very real symptom of autoimmune diseases and unfortunately many doctors are unaware of just how incapacitated it can make you feel. It doesn't only relate to scleroderma, which is a very difficult disease to diagnose, so it's a good move that you've got an appointment with a scleroderma specialist.

 

Please do let us know how you get on with that appointment.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Linda,

 

Welcome to the forums. I'm so glad you've found us. Fatigue indeed is certainly an issue. It's a BIG one for me. 

You're starting out right by seeing a Sclero specialist, so kudos to you on that one. 

Really look forward to hearing the outcome of that visit. Keep us posted.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Linda,

 

Welcome to Sclero Forums, I'm glad you found us.

 

Fatigue can be a big issue with scleroderma, and with many other conditions as well. Sometimes it is due to general inflammation, but it can sometimes be caused by overlapping conditions or complications, such as internal organ problems or even sleep disorders.  Occasionally just the stress of illness or the diagnostic process can cause anxiety or depression, which can also lead to exhaustion.

 

And, all fatigue is not necessarily the same. Sleeping sitting up is probably an indication that it is time to discuss a sleep disorder evaluation with your doctor.  Sleep disorders are very common in the general population, and also with scleroderma, too.

 

:hug-group:


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.

Share this post


Link to post
Share on other sites

Welcome!  Sounds like you have good doctors that have really jumped on trying to get you diagnosed.  Hopefully you will get some definitive answers when you go to UPMC. 

 

As you probably already know, scleroderma affects everyone differently.  However, as the others have said, fatigue is a common issue.  Fortunately, my extreme fatigue only lasted a couple of years, then one day it just magically lifted.  I get it for very short periods of time now, but usually it's during a flare-up.  During my fatigue periods, I don't fight it.  When the afternoon nap calls, I answer it.  If a nap comes in mid-morning, I let it happen.  I personally found that the short cat naps helped me to make it through the day.  Without them, I am constantly exhausted and do absolutely nothing.  Eating small snacks during the day help to provide a little more energy, so don't forget to snack of healthy snacks.

 

Hugs,

Janey


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

Share this post


Link to post
Share on other sites

Hi Linda,

 

So, how did your appointment with the scleroderma expert go?  Do you feel that you have more answers, or  only more tests, or questions?

 

:hug-group:


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.

Share this post


Link to post
Share on other sites

I certainly get tired, but unfortunately cannot sleep - I would love to be able to nod off upright in a chair, in fact I would love to be able to sleep for more than an hour or two.

 

I suppose that it affects us all differently.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now