The Scleroderma Foundation Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group

ssdi denied

tashan74
  • By tashan74 · New reply 6:14 pm
  • Journal · 32 replies
  • I got my ssdi denial today. Actually was surprised since my job approved Ltd, but then again we are talking the government. I had to giggle because the letter states that I am being treated for scleroderma ...

Tierd of Blood work

vanillastar33
  • By vanillastar33 · New reply 6:06 pm
  • Journal · 5 replies
  • Every time I have blood work they never can find a vein because my veins are small and very deep. I am so tierd of hearing the techs say did you drink water, if I drink any more water I will float away ...

Barretts Esophagus and Scleroderma

Angelsky22
  • By Angelsky22 · New reply 6:03 pm
  • Discussion in Systemic scleroderma · 28 replies
  • I have has Systemic Scleroderma for about ten years. I have had GERD for a long time, at least twenty years. Been on Prilosec forever and even upped the dosage couple of years ago. Still have breakthrough ...

Just found out

Caca1990
  • By Caca1990 · New reply 6:01 pm
  • Discussion in Newly diagnosed · 16 replies
  • Hello all, I have been diagnosed with scleroderma just a little over a month ago and have just recently found this website. I was wondering if anyone has any advise with coping with this disease or any ...

Groundbreaking Cure Video for Scleroderma!

LAMMY
  • By LAMMY · New reply 5:40 pm
  • Discussion in General discussion · 4 replies
  • There is HOPE!!!! http://www.clickondetroit.com/news/groun dbreaking-scleroderma-research-being-don e-at-michigan-state-university/25598280 ...

Scleroderma Breakthrough Announcement

evanrb1
  • By evanrb1 · New reply 5:20 pm
  • Discussion in Treatment options · 6 replies
  • Hope is alive and well. Please check out the below video. http://www.clickondetroit.com/news/MSU-r esearchers-reach-scleroderma-breakthroug h/25605924#.U1b6X_rfVpA.facebook ...

Better choices than adderall

sharn
  • By sharn · New reply 5:17 pm
  • Discussion in Systemic scleroderma · 2 replies
  • I've been on adderall for debilitating, could -sleep-24/7 fatigue for about 3 months. I can sleep right when I take it. Has anyone tried anything else that helps? This is one of the hardest symptoms for ...

Educational/Support Opportunity

RCB14
  • By RCB14 · Posted 4:53 pm
  • Discussion in General discussion · 0 replies
  • The Participation Program for Pulmonary Fibrosis or P₃F is excited to introduce their new project. The P₃F is a program that gives power to people affected by pulmonary fibrosis (PF): power to not only ...

General questions about living with scleroderma (esp. with a baby!)

Dburkhalter
  • By Dburkhalter · Posted 4:29 pm
  • Discussion in Newly diagnosed · 0 replies
  • I was diagnosed with localized scleroderma last week. My rheumatologist is (apparently) unwilling to talk to his patients about anything besides what pills to take for it (he is the only one that takes ...

Exercise with PAH

sootys
  • By sootys · New reply 4:09 pm
  • Discussion in Systemic scleroderma · 10 replies
  • I have PAH and am on a lot of medication and now feel well enough to exercise. I started on Saturday for approx 25 minutes on my exercise bike, not mad of course, just a steady pace, then on my weights ...

need adjustable bed

MBK
  • By MBK · New reply 3:17 pm
  • Discussion in General discussion · 6 replies
  • Due to health issues I need an adjustable bed ASAP.. I have scleroderma CREST past 11 yrs, among other dxs I was dx with achalasia and can no longer lay in conventional bed I must be elevated....I also ...

need opinions!

tocoimimi
  • By tocoimimi · New reply 3:14 pm
  • Discussion in Newly diagnosed · 3 replies
  • Does any one here know of Dr. Virginia Steen? She trained at University of Pittsburgh and is now at Georgetown University. My local rheumatologist recommend her and I am seeking further knowledge/opinions ...

Cellulite on legs

jehago
  • By jehago · New reply 2:44 pm
  • Discussion in Systemic scleroderma · 12 replies
  • Hello all! I was wondering if anyone could tell me if this is scleroderma related on not. I am 30 years old and have been diagnosed with limited scleroderma. I am on prednisone, imuran and plaquinil (along ...

Yoga DVD recommendations?

ksinger
  • By ksinger · New reply 2:36 pm
  • Discussion in General discussion · 3 replies
  • Can anyone recommend a Yoga DVD? I would like something on a beginner level, with shorter (30 minutes) work outs, if possible, because I work full time. I don't have the time or energy to do a long work ...

red face and loose front teeth and diffuse dx

fletcher21
  • By fletcher21 · New reply 2:26 pm
  • Discussion in Systemic scleroderma · 30 replies
  • Hello everyone - I have asked this before but it is so frustrating. I have a red face ( sometimes it is very itchy like the sides of my face) and it gets more red at certain times. My teeth in the front ...

GERD in the throat?

Not-Crazy
  • By Not-Crazy · New reply 2:18 pm
  • Journal · 8 replies
  • I have been hearing gurgling sound in my throat and sometimes my nasal cavity. I have heard it before and always thought it was part of my asthma. I have to cough to try to get something out of my throat ...

Sick of wearing gloves!

theswordpen
  • By theswordpen · New reply 1:19 pm
  • Discussion in Newly diagnosed · 17 replies
  • Ever since my Raynaud's has onset I haven't been able to even wash my hands without having to put on my gloves after because they turn to icicles! It's emotionally taking a toll on me to have gloves and ...

happiness

hannaohhhsbaby
  • By hannaohhhsbaby · New reply 1:08 pm
  • Discussion in Family and friends · 5 replies
  • Me and my wife read and watched a video about the breakthroughs they have made toward a cure at MSU. We both cried for an hour ...

foundation yips

lucy118
  • By lucy118 · New reply 12:59 pm
  • Discussion in General discussion · 6 replies
  • I am post menopausal 54 yr old woman.diagnosed 18 months ago with systemic limited sclero. as the seasons change here in new england loiking to change my foundation.any one had good experience with ones ...

Gastroparesis and Erythromycin

tlg725
  • By tlg725 · New reply 12:40 pm
  • Discussion in Systemic scleroderma · 1 reply
  • Hi everyone, was wondering if anyone has been given Erythromycin for their gastroparesis and if so how long have you been on it? I am always hesitant to take new medications and the Dr has ordered erythromycin ...

Log in to see more

Don't have an Inspire account? Sign up now!

Forgot password?

Things you can do

Support the Scleroderma Foundation

Help the Scleroderma Foundation reach its goals and support people like yourself by making a donation today.

Donate to the Scleroderma Foundation

Discussion topics

From the Scleroderma Foundation

Community leaders

Inspire others

About this community

The Scleroderma Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Scleroderma Foundation, an Inspire trusted partner.