One of the best things about an invisible illness is that you can live a normal life and people leave you alone. However one of the worst things about invisible illnesses is that its invisible, because no one believes you when you’re struggling. Scleroderma is brutal and some of my closest friends (or rather ex friends) just thought I was a lazy and that because I don’t look sick I cant be sick in their eyes. My doctors have always said I’m the healthiest looking sick person they know but thats the problem, if people can’t see something they don’t believe it.. no one I know has morphine for breakfast but people are selfish sadly.
Glad I found this. I am 66 years old and was always very fit and did a lot of physical stuff, I was doing dog walking as an avocation and extra income. Over the last couple of years I started having the problems you described here. I had known about the Reynauds for a long time, but things got so much worse fast. I felt like a whiner because I often could not do anything because of pain in my whole body. I finally went to a doc, and figured he could tell me it was all in my head like I figured it was. But he diagnosed me with CREST syndrome, which includes scleroderma, Reynauds, and some other auto immune stuff. My physical health has been so eroded by this I barely recognize myself, but I don't look any different physically. I know what you mean about people thinking you are lazy or something. It is an isolating illness. Thanks for sharing your story.
Lorraine and SRUK are perfect examples of why I am so very, very, proud to be British. Thumbs up to this great woman and the caring organization behind all who are challenged by Scleroderma.
I am the same like you then the Scleroderma hit me and then the stress of losing my job. It has made it worse. But I am on the mend. We know there is no cure. Keep strong. I have all the problems you have. Going down by the freezers are terrible and so true that we are all different. You are like me You have to keep going.
Diagnosed with Sclorderma five years ago, I don’t ever bother going to the doctor when a new flare up occurs , as I know doctors cannot do anything for me . Rheumatologist is hour and half away , told that one I wasn’t coming back .
I found out I had Raynaud's a couple days ago. I believe how many symptoms and difficulties I have similar to her! Fortunately it's not as bad because I don't have scleroderma. But I'm also 18 which seems unusual because I hear it usually affects women over the age of 50. My grandma has it too. It's painful but manageable.
Fern = Pa-ku-pa-kis Us-ta-z|ah (Ar) = a female teacher Ustazah Jasmin is my mother's best friend. A Kedahan. Mak-tab = institute Per|gu-ru|an = teaching
One of the best things about an invisible illness is that you can live a normal life and people leave you alone. However one of the worst things about invisible illnesses is that its invisible, because no one believes you when you’re struggling. Scleroderma is brutal and some of my closest friends (or rather ex friends) just thought I was a lazy and that because I don’t look sick I cant be sick in their eyes. My doctors have always said I’m the healthiest looking sick person they know but thats the problem, if people can’t see something they don’t believe it.. no one I know has morphine for breakfast but people are selfish sadly.
🙏♥️
Glad I found this. I am 66 years old and was always very fit and did a lot of physical stuff, I was doing dog walking as an avocation and extra income. Over the last couple of years I started having the problems you described here. I had known about the Reynauds for a long time, but things got so much worse fast. I felt like a whiner because I often could not do anything because of pain in my whole body. I finally went to a doc, and figured he could tell me it was all in my head like I figured it was. But he diagnosed me with CREST syndrome, which includes scleroderma, Reynauds, and some other auto immune stuff. My physical health has been so eroded by this I barely recognize myself, but I don't look any different physically. I know what you mean about people thinking you are lazy or something. It is an isolating illness. Thanks for sharing your story.
Thanks you! Newly diagnosed and when you said, “ready to defend myself”, that hit home.
Lorraine and SRUK are perfect examples of why I am so very, very, proud to be British.
Thumbs up to this great woman and the caring organization behind all who are challenged by Scleroderma.
❤❤❤ thank you!
Thank you x
Thank you for sharing your story. You have given me hope!!!
Thank you for your input. Great positivity. 👍🏾
I am the same like you then the Scleroderma hit me and then the stress of losing my job. It has made it worse. But I am on the mend. We know there is no cure. Keep strong. I have all the problems you have. Going down by the freezers are terrible and so true that we are all different. You are like me You have to keep going.
See my comment above.
Best wishes x
I have Raynauds and tested positive for polymerase III...my hands and toes turn white and I live in Florida, USA. Waiting on more results.
your so positive thank you 😊
Diagnosed with Sclorderma five years ago, I don’t ever bother going to the doctor when a new flare up occurs , as I know doctors cannot do anything for me . Rheumatologist is hour and half away , told that one I wasn’t coming back .
I found out I had Raynaud's a couple days ago. I believe how many symptoms and difficulties I have similar to her! Fortunately it's not as bad because I don't have scleroderma. But I'm also 18 which seems unusual because I hear it usually affects women over the age of 50. My grandma has it too. It's painful but manageable.
Thank you xx
I have Raynauds that is out of control and can happen while I'm washing dishes in hot water. I live in Northern Ontario and winter is unbearable.
Lathyrus odoratus = Sweet Pea
100 = 1 ra-tus
Tos = se-jat
Jasmine = Jasminum polyanthum
Fern = Pa-ku-pa-kis
Us-ta-z|ah (Ar) = a female teacher
Ustazah Jasmin is my mother's best friend. A Kedahan.
Mak-tab = institute
Per|gu-ru|an = teaching
🙏♥️
My symptoms are not that bad, fingers toes and back of my legs,
I have erythromelalgia. Annoying but thank goodness not this.
My pill is effecting my raynards and blocking my vitamin b
Seriously 😳 why do you all do these video's, bur don't help anyone 😭😭😭😭
My all body like rock my toung also like rock difficult to speak
Hi I am better now I was sick for 4 years I found the best choice from herb juice in Thailand my condition very good right now
@@pizzatime5442 name of juice pls tell 9888221082 india
@@pizzatime5442 Plz tell me of the juice
It is a kind of dietary supplement made of a certain local veg.
It is a kind of dietary supplement made of a certain local veg.
My toes hurt so much they has turn black so painful
Eat what you want?
Yet one thing you lack-Jesus Christ!
You have no idea is she has Jesus or not. Be better or please stop using the name of Jesus.
@Happy go Lucky Blow it out your arse! One thing you lack- a brain!
Wtf