During Flare-ups, My Scleroderma Body Pauses Life

I am newly diagnosed with Scleroderma. This hit it on the head for me! She described me to a T! Sharing it with my husband so he can better understand what is going on. Thank you!

I know what scleradoma brings such chronic pain I pray someday we will get a cure I'm 74 and suffer from tumors calcification it is such pain .

I experience the same. I get so stressed about what I'm not doing and the things that are put off. Surely that lengthens the exacerbation. I am learning to embrace my good times and and love myself through the rough ones. It's only dirty dishes and laundry etc.

Hi Lisa,
thank you so much for writing your stories in such an open way. unfortunately they are true, so true for us, life on pause, a perfect way to describe it. You have my highest admiration. I also have scleroderma, Lupus, Severe Raynauds, gerds , crest and drye eyes. Hopeless some days,hopeful on others. My urge to run into my neglegted garden during the day, my wish to wake up one morning : it was all a nightmare, now I am healthy....
pls keep going , virtuell hug to you, M.H.

Hi Lisa,

Oh my goodness! You described my life to a nail head (I too, like building things)! For me, as time goes by, the pauses seem to come more frequent. I’m having to set priorities for my days and energy level. I was going to grow a vegetable garden this year, as I raise enough food for a year. This year I’ll have to skip gardening and canning, but also know that quality of life can still be great if I just slow down and take care of myself.
Thanks for you encouragement and keep dreaming and building!

bonnie

I also suffer with scleroderma crest syndrome, AVM's of stomach and digestive track, Raynauds, calcification in fingers and toes, fibromyalgia, anemia, congestive heart failure.I live with severe pain that opioids only make my pain bearable. I live basically in my bed or chair under an electric blanket unless at a doctor appointment.Most doctors don't know how to treat this and pass you off to another. I have basically learned to try to treat each symptom with whats available and try not to aggravate painful sores and flareups. Hopefully a treatment will come along soon.

After a long and difficult journey I have finally got a referral to a Specialist Scleroderma Unit and awaiting an appointment. It may be
that I haven’t got Scleroderma but reading your article Lisa and the comments I can understand everything you are all saying. My life feels as if it is rapidly going downhill, all the signs and symptoms are there.
I do feel hopeful that with a diagnosis I will receive the support that is sadly lacking now.

I have reynauds disease, i am positive for the lupus coagulant , have antiphospolipid syndrome, which basically overlaps with the lupus antibodies , and now, scleroderma for a year ..my hands feel like stone and sometimes things fall and I have trouble picking them up ... it’s so frustrating.. I also have ulcers on my knuckles & cuts on my fingers caused by the scleroderma
I have good days/bad days .. sometimes I cry in my room cause I feel my life has changed so much because of these autoimmune diseases.. thank god I have a loving husband who helps me greatly and never complains and 2 wonderful children who help out
I also have a very strong faith which keeps me going! I refuse to give up , even on bad days
Lastly,,I have a good support system with my parents actively involved in me and my families life and for that I am very appreciative !!

I'm sorry your having a bad day.
I have Limited Scleroderma please know you are not alone .I promise you will have a better day.

I just want to thank everyone for sharing their stories and information. After what was first diagnosed by a dermatologist for more than 4 months I diagnosed last month by two doctors, including the UAB Kirklin Clinic in Birmingham, with diffuse systemic scleroderma. Needless to say it’s a huge learning curve and I’m trying to educate and inform myself basically on a daily basis. It’s still just settling in.

Scleroderma is an insidious disease that most people don't understand (including many doctors I think!). Lisa, thanks for being so honest about how terrible it makes you feel. Your frank admission makes others feel that it's ok to acknowledge their pain. And I'm beginning to think that's half the battle!

The fact that you were even able to find words to describe it is amazing! I try to explain and make others understand and I can't even put into words.

Every weekend I plan to get so much done in my personal life, Each day I plan to tackle tasks for work and most times none of it comes to be because I hurt and I am tired. Then I beat myself up for it. I constantly feel like there are a million balls in the air and I am usually dropping most of them. Always disappointing and letting somebody down.

Thank you for putting how I feel into words.

Two weeks ago I ended up in ER with a twisted small intestine and having emergency surgery. I was in hospital for 6 days since my intestines took five days to start working since I also have gastroparesis.
I don’t know if that caused a flare but I just can’t seem to get up and going. I feel useless and like I’m being lazy. I just want to sleep all the time. Barely can eat but trying to stay hydrated.

Hi Lisa. Thank you so much for your words. I was diagnosed 8 weeks ago and all my world turns around.
I'm from Quito- Ecuador and there is not much information. They just said it is a rare desease but I found great doctors that are trying to help. Thank God for my family support and caring. I just can say that to take one day at a time with hope and faith, it's helping to go trhough.

I have not made any comments for a long time because I listened to all of you and my heart breaks. My Crest disease is progressing and there is not much I can do. As all of you know this disease does not forgive and only we can relate to how this changes our lives. But we can only like Lisa said wake up and do what you can and what makes you happy. Not funny but only you and I can relate my insurance company denied me for my secondary disability benefits. They say I can work in hospitality and food service with my 4 amputated fingers and i can be a clerk or insurance clerk and I could be a Greeter. I at first laughed and then cried for 2 days. How could anyone understand how we manage the little things at home and then push and push to get through the day. We all enjoy and cherish the good days and with gods blessing get through the worst days. Needed to share this. My heart is with all of you. Lorraine Jones

Thank you for everyone in our group to tell a story a bad or good one. We are the only small group that has to go through these challenges. I have a thought, how about we all tell a good story about a small thing that made our day great!!! My heart is with all of you. Lorraine Jones

I am going to start with a good day. The weather is getting warmer in North Carolina so sitting in the sunshine as we all know with Raynauds feels great. My disease is starting to affect my feet so just recieved a new pair of sneakers with memory foam that feels great. My little Corgy named BOBO always senses when I do not feel well and has made we laugh when he surrounds me with his stuffed animals and balls. Hope everyone had a small thing today that made them smile. Blessings to all of you,Lorraine

Thank you everyone, as a newly diagnosed scleroderma patient, I appreciate all information. Just so confusing! Looking for something to relieve the skin stiffness, any recommendations appreciated.

thanks

Yep, i love furniture painting, etc. but can't seem to find the strength most days. Think I will purchase a mechanics chair so I can sit/and roll around the pieces I want to paint. Maybe that will help.