The Scleroderma Foundation Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group
All new and active discussions & journals
leg cramping
- By marieclr78 · New reply 9:26 pm
- Journal · 4 replies
- Recently ive been having horrible leg crampings that have kept me up at night. My feet are also painful to walk on immediately after waking up in the morning. My body seems to constantly ache. I have ...
Bottoms of Feet Hurt - especially the Heel
- By Peggy59 · New reply 7:55 pm
- Journal · 38 replies
- I've had a new development in the last couple of months in that the bottom of my feet hurt, especially the left heel. I brought it up with my apt with my rheumatologist in October and he said I may need ...
Is anybody feeling better? What meds helped?
- By jeanniej1515 · New reply 6:40 pm
- Discussion in Systemic scleroderma · 36 replies
- Hi, My name is Jeannie. I've been sick since Oct 2008. I would just like to know if anybody's feeling better and what medications are working for you. I'm 46yrs old and scared to death that I will be ...
GOOD NEWS BAD NEWS PULMONARY CHECK UP
- By Blkjewelz8960 · New reply 6:26 pm
- Journal · 13 replies
- Well had my 6 month Pulmonary check up. Visited the vampires and photographer first. Took pretty pictures of my scarred up lungs. They have automated the system now so no film to take with you. Did my ...
So far, So good
- By gettingby · New reply 5:47 pm
- Journal · 6 replies
- It seems to me that everyone at this web site has as illness. So with that in mind I would like to tell a story I heard from a friend. There was a man who was very optimistic. Accidently he fell from ...
Remission?? Is it possible?
- By saranil · New reply 5:27 pm
- Discussion in Systemic scleroderma · 2 replies
- Hi all So I hear a lot of people throwing around the word remission and I must say that it gives me hope, but why do my doctors at least, basically say this is permanent and I will never gain back my ...
Plaquenil and SEVERELY ITCHY SKIN! PLZ HELPPP!!!!
- By AmandaMichelle · New reply 5:23 pm
- Discussion in General discussion · 27 replies
- PLEASE HELP! I have been on Plaquenil (well the generic form-- hydroxychloroquine) since October, and for the past about 2 weeks, I have been SEVERELY itchy. My skin turns red, and it feels like something ...
I'm having such a bad flare!!
- By samknow · New reply 5:09 pm
- Discussion in Systemic scleroderma · 1 reply
- Hi everyone, I hope everyone is feeling good. Well i'm not doing so well, my SD has now spread to my right knee and leg. I forgot how much it can cause, since i've had my implant done for my arm, i don't ...
A nice puszzle
- By gettingby · New reply 4:36 pm
- Journal · 2 replies
- Today being the 20th of November I am working on a puszzle of the ship Titanic. As I looked at the box it came in it came to me that even though we might be sick it could be worse. Know what I mean ...
Do you know your hands are soft?
- By M_McF_M · New reply 3:52 pm
- Journal · 4 replies
- This was a rhetorical question; of course I know my hands are soft -- I've been holding them out for weeks now for my friends and family to touch, and squeeze. It's such a simple thing, but such a delight ...
Chang Shan / Halofuginone
- By evanrb1 · New reply 3:40 pm
- Discussion in Treatment options · 4 replies
- Has anyone tried Chang Shan? I have been reading about positive effects of Halofuginone for systemic scleroderma. Halofuginone is derived from the Chinese herb Chang Shan, which is available over the ...
Water or Coke? (or rather any carbonated drink)
- By meriterry · New reply 12:39 pm
- Journal · 11 replies
- This was sent to me by a friend: Focus on the hydration thing....... Water or Coke? I could not believe this..... Very interesting WATER #1. 75% of Americans are chronically dehydrated. (Likely applies ...
Almost at my breaking point
- By Terri9967 · New reply 12:25 pm
- Journal · 45 replies
- Well things go from bad to worse for me it seems! I got a call yesterday from my pcp and he wanted me in today to discuss the results from that 30 day event heart monitor. So I went in today at 10am ...
Gift Suggestions
- By DaisyDD · New reply 12:25 pm
- Discussion in General discussion · 10 replies
- Hello to all. I joined this group because one of my closest friends has scleroderma and with the holidays approaching, I am wondering if anyone can give me any gift suggestions for her. We exchange gifts ...
Bloated Belly
- By JoanCMD · New reply 11:55 am
- Discussion in General discussion · 10 replies
- My upper belly has been bloated to the point that I look like I'm 7 months pregnant and carrying it very high. I still have a waist line on sides and in back. This has happened over the last year or so ...
2 Yr Old Little Girl with Morphea
- By daniel2009 · New reply 9:14 am
- Discussion in Newly diagnosed · 5 replies
- Does anyone out there have any experience with this horrible issue? She has this in her upper inside thigh. Is there anyone out there that specializes in this so rare form of Scleroderma? Please let us ...
Angela Martinez- "That's Who I Am"
- By angelacountrystar · New reply 9:07 am
- Journal · 1 reply
- First of all I would like to introduce myself to everyone before I start telling you my story. Actually it's a continuing story because I am young and I have so much more to experience in life before ...
Guttate Morphea
- By Terri304 · New reply 3:19 am
- Discussion in Newly diagnosed · 2 replies
- I'm completely new to this, confused and worried. If anyone has advice or suggestions it would be greatly appreciated. My 13 year old daughter was just diagnosed with Guttate Morphea, I can only find ...
Lung involvement or Anemia?
- By keribear · New reply 12:58 am
- Discussion in Systemic scleroderma · 16 replies
- I live in central california and just visited a scleroderma specialist at UC San Francisco. I have Diffuse Scleroderma, it's been on my hands for about 4-5 years and of the last year it's hit my arms ...
Thanksgiving Day Dilemma
- By sjess · New reply yesterday at 5:46 pm
- Journal · 7 replies
- What do I do for Thanksgiving day? I've been invited to my brother's family get-together which is over an hour away. There will be quite a few people there and children. And then I'm supposed to sing ...
- More »
- New
- Active
- Discussions
- Journals
Sign in to see more
Inspire others
From the Scleroderma Foundation
Scleroderma Foundation on Twitter 
Group leaders
Discussion topics
You
About this group
The Scleroderma Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. The Scleroderma Foundation Support Community is sponsored by the Scleroderma Foundation in partnership with Inspire.