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Regular Contributor
Posts: 191
Registered: ‎03-28-2010

I'm in the process of getting diagnosed with some type of connective tissue disorder.  It's not rheumatoid arthritis.  Some skin thing.

Just wondering if any of you are dealing with this and what your experiences have been.

Thanks

Honored Contributor
Posts: 8,229
Registered: ‎03-09-2010

Re: Connective Tissue Disorders

[ Edited ]

@hick 

 

Is it lupus erythematosus?  Systemic lupus erythematosus is the kind that involves other organs but just plain LE involves the skin but there is more than one connective tissue skin disorder, so once you have a specific name, you can be more specific and so can those responding.  

Honored Contributor
Posts: 23,161
Registered: ‎05-22-2016

Re: Connective Tissue Disorders

[ Edited ]

I  was diagnosed with scleroderma almost twenty years ago. It has affected almost everything in and on my body, not to mention the emotional and psychological effects which have also happened to me.

 

Scleroderma means 'hard skin'. But it is more than just an autoimmune skin disorder. It involves everything which has connective tissue....and that's almost everything.

 

I have heart valve, lung and kidney involvement. Malnutrition and low vitamin levels from malabsorption issues. Incontinence (comes and goes) with both #1 and #2. My hands are permanently in fists where my fingers can't move and cutting my nails has become a huge problem...my rheumy suggested I get my nails permanently removed. I have chronic joint pain everywhere, my neck especially. I have dental problems....lost 6 teeth and gums have receded so much that now I need work done. I have extreme hair loss. My skin is so tight in areas, including my face, that it hurts and itches all the time. 

 

There's more. I know! I sound like a complete mess but that's what it is. It's taken a long  time to get along with living and there were times I thought I couldn't do it any more. But I'm still here and doing okay. Smiley Happy

Respected Contributor
Posts: 2,085
Registered: ‎07-26-2019

Re: Connective Tissue Disorders

There is a demonstrative rash with Psoriatic arthritis  .

Esteemed Contributor
Posts: 6,267
Registered: ‎12-24-2010

Re: Connective Tissue Disorders

@SilleeMee Read your post twice - I can't imagine going through what you have to endure daily.  My heart goes out to you -  - truly.

Prayers for you...............

Honored Contributor
Posts: 23,161
Registered: ‎05-22-2016

Re: Connective Tissue Disorders

Thank you @fthunt 

 

Esteemed Contributor
Posts: 6,633
Registered: ‎08-19-2014

Re: Connective Tissue Disorders

@SilleeMee  OMG! I'm so sorry for your pain & discomfort.I had no idea you were going through so much.Your're my new hero!! 💐

Super Contributor
Posts: 391
Registered: ‎05-09-2010

Re: Connective Tissue Disorders

@SilleeMee , I have a dear friend with scoloderma so I will send an extra prayer for you.

 

Respected Contributor
Posts: 3,780
Registered: ‎12-02-2013

Re: Connective Tissue Disorders

@SilleeMee 

 

We never know what life is like for any of the posters on this board.  I am so sorry that you have to endure so many difficult ailments.  My thoughts will always be with you: no more complaining about my truly minor aging issues !

 

Don't know how you came to choose your nickname here, but I will think of you as " CourageousMee " !!!

 

 

We make a living by what we get. We make a life by what we give.
Sir Winston Churchill
Honored Contributor
Posts: 23,161
Registered: ‎05-22-2016

Re: Connective Tissue Disorders

In my wreckage I've found hidden treasures in myself. Things like being more humble, being more compassionate and learning to live for today...in the moment!  Everything happens for a reason, good and bad.