Join the Conversation on
2.5K people
0 stories
389 posts
  • About Scleroderma
  • Explore Our Newsletters
  • What's New in Scleroderma

    Chronic pain/condition blogs


    I have been thinking about writing about chronic pain and other conditions for quite some time. I would say I have a lot of thoughts and opinions, and I used to be good at expressive writing (if I've gotten the term right) and getting things down on paper. I was hoping I could potentially make people feel less alone. However, I'm unsure of where I could post things like this or how to get started? Any advice would be appreciated💜

    #MightyTogether #Fibromyalgia #FibromyalgiaDiagnosis #ChronicPain #typeonediabetes #DiabetesType1 #HypothyroidismUnderactiveThyroidDisease #LinearScleroderma #Scleroderma #ChronicIllness #ChronicFatigue #AutoimmuneDisease #RareDisease #MedicalZebra #Depression #Anxiety #AnxietyAttack #PanicAttacks #MentalHealth #youngadult

    23 reactions 15 comments


    Does anyone on this site take medication for their scleroderma? My rheumatologist wants to start me on Actemra injections. Has anyone tried it before? I can’t seem to find anyone to help me.

    1 reaction

    I'm new here!

    Hi, my name is Southpaw60. I'm here because I have Scleroderma and Raynaud’s.

    #MightyTogether #Scleroderma

    2 reactions 3 comments

    Lupus with Scleroderma

    About 3 years ago I was diagnosed with SLE. Accepted the fact that I have this chronic illness. However, recently through an interventional upper endoscopy it was discovered that I have Scleroderma of the esophagus. Does anyone else have both Lupus and Scleroderma #SystemicLupusErythematosus #Scleroderma #esophageal scleroderma#esophagus


    I was wondering how you all feel about new year and celebrating it?
    I find it really gets me down and with the nature of chronic illness, I imagine I'm not alone. It's hard to look forward to the time you have ahead, when you're having a difficult experience and nothing seems to change. I was hoping there may be some advice for me about reframing things or if anyone would like to vent about their own experience, I'd welcome that too💜

    #ChronicPain #Fibromyalgia #Fatigue #DiabetesType1 #LinearScleroderma #Scleroderma #HypothyroidismUnderactiveThyroidDisease #RaynaudsPhenomenon #Anxiety #Depression #MightyTogether

    18 reactions 11 comments

    I’m Aware That I’m Rare: Nola Martin

    Pulmonary Hypertension and Scleroderma patient Nola Martin discusses her road to diagnosis and the importance of support groups and seeing a PH specialist.

    My name is Nola Martin and I’m from Philadelphia, PA, and my journey with PH started about nine years ago.

    I was actually at work exercising one day. I was so excited. We moved to a new building. They put a gym in for us, and I’m on the treadmill for not even two minutes, and I could literally feel my feet swelling in my sneakers, and I’m going, “Well, this is weird.” I was having a lot of shortness of breath, but I kept making up excuses. “If I diet and exercise more. Maybe if I lose a little weight, I’ll feel a little better.”

    I was eating one orange a day. That was my meal for the entire day and it felt like I had a full course meal. Of course, I didn’t share this information with my doctor right away because, in my mind, I’m going, “Oh, diet and exercise more.” But how much more can you diet when you’re only eating an orange a day?

    I got up to walk to the printer which was less than a foot from my desk, and it literally felt like all the oxygen was sucked out of the room. I called my doctor at the University of Penn. She’s like, “I think you need to be seen right away. Are you able to drive? Can you come in?” I’m like, “Sure, I can come in.” But I didn’t tell her I was at work which was an hour away, but I drove to the hospital and when I got in, they put a pulse ox on me and they’re like, “Okay, let’s see if you can walk around this desk.”

    I took literally five or six steps, and all these alarms started going off. The next thing I know, they’re putting oxygen on me. They put me in a wheelchair. And she’s like, “We’re not even going to wait for transport.” They just wheeled me into the emergency room.

    And that’s when I start hearing things like #PulmonaryHypertension, and I’m getting an echocardiogram and oh, you’ll need a right heart catheterization. I didn’t understand any of this stuff at all. But that began my journey with pulmonary hypertension. And from that, I found out mine is due to #Scleroderma. And in addition to the scleroderma, then it’s like, “Well, now you also have congestive heart failure” and I have GERD real bad, and I have Raynaud’s and all of these other things.

    At first, when you first hear this and you go on the internet … most people want to google things and find out, because Google was the answer for everything. And I went onto Google and searched, and it was like oh, well you may have two to three years to live and you go through the whole depression thing. I said, “Wait, just let me talk to the doctors. Get my appointment, see what’s going on.”

    I discovered through that support groups, which was a wonderful thing because I got to talk to people who understood what I was going through. It’s hard when you’re trying to explain something to somebody else when you truly don’t understand it yourself. I learned a lot of information about support groups, about making sure that you are at a hospital or center or have a doctor that understands pulmonary hypertension and that can treat you.

    Because everybody has their own history and their story with pulmonary hypertension, and it may not be the same as yours. It’s very important, first of all, to make sure you get a good doctor, you get good treatment going, and that you learn the disease yourself and learn how it affects you personally.

    Read the full story:

    2 reactions

    I'm new here!

    I'm here because I have a few rare diseases 1st was a congenital heart defect #ScimitarSyndrome which lead to 3 #OpenHeartSurgery and 1 #stent after I was diagnosed with #PulmonaryHypertension and now testing is in the works for #Scleroderma non skin so here I am figuring it all out !!! Hello 👋🏾

    1 reaction 2 comments

    I'm new here!

    Hi, my name is Michelle79. I'm a divorced mom of 2 teens without a support system. I feel like I'm scrambling just to survive. I'm lost - I know that help is available but need help finding it. I'm dealing with all this while still trying to be the mom my kids deserve. My hope is I can gain knowledge, resources and validation that I'm not alone.

    #MightyTogether #MultipleSclerosis #Scleroderma #Hypersomnia #PTSD #OCD #Anxiety #Narcolepsy