Guest Sadie

What were your first symtoms of your illness when it was starting up?

21 posts in this topic

What were your first symtoms that you got when you first were getting sick? Mine were the raynauds, ulcers on finger tips, joint pain and digestive problems. I was a jr. in high school and missed alot of school that year and my Sr. year I missed alot of school that year too. I had a tutor that came out to our house to teach me. I'm now almost 36 years old.

Now that I think back to those times I recall having alot of pain in my right leg for a few years before I got sick. I wonder if that could've been the scleroderma starting up? As a kid, I was always very healthy. I use to roller skate and swim.

 

Sadie

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Hi Sadie,

 

My symptoms started with Raynauds as well. Then over the years the other symptoms started creeping up, like the infected cuticles and tanglestia. Not long after that the stiffness set in. But, I don't beleive that's when the auto immune issues began. I think they started in my late teens/early 20's when my thyroid shut down and my hair fell out. I just never put two and two together until now. I guess it takes it's own course differently in everyone.

 

Karen

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Hello Sadie & Karenlee....My first symptoms were pain and stiffness in my hands and feet along with chronic fatigue. I could barely walk on my feet they hurt so bad.


I may have Scleroderma, but Scleroderma doesn't have me!

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My feet and hands started tingling and then went numb. I was first diagnosed with Peripheral Neuropathy and the eventually was able to get to the bottom of what was going on. I had a lot of muscle pain and they couldn't put the puzzle pieces together. It took a year but I finally was able to get some results.

 

Warm hugs,

 

Peggy

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I suffered with severe heartburn and indigestion for three years before my primary care physician sent me to a gastro doctor. He did bloodwork, endoscope and colonscopy. Results of his blood work is what sent me to rheumatologist. So lots of stomach troubles seem to be the starting point for me to be diagnosed,although I had other symptoms for a long time before the stomach trouble So, who knows for sure?

 

Sherion

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My very first symptoms that I recall was one year ago, I woke up to stiff/sore achilles tendons on both legs. Very shortly afterwards came Raynauds, SOB,chest pain and fatigue,. My PFT 12 months ago was above normal in everything., now have declining DLCO, which may mean PH or ILD. I also have reflux/bowel/lung issues.

 

Most of my life though I have had joint pain , like growing pains, and have not been very flexible in the legs and knee area.

 

Take care

Celia

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Hi,

 

Mine were fatigue and joint pain. I think I just lucked out with my doctor. She said they learned in medical school never to take the ANA tests because it was rare they were ever positive. She did that after my iron was in the low but normal range and thyroid came back normal. She sent me to a rheumatologist right away. So now everything is starting.

 

Cheri

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I had that with the feet too. In the morning, just getting up, the pain so bad could only hobble. It would disappear during the day. I'm lucky in that the real first symptoms of Raynauds was 17 years ago, and just this past year, other symptoms. They say based on my age, I could go into my 80's before real damage sets in.


Tru

 

It is what it is...........

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Hi Sadie,

In some ways I guess I should consider myself lucky because I found out fairly quickly. My first symptoms were puffy fingers that were getting stiff then terrible fatigue. Then my ankles got puffy and stiff, then I got raynouds and the heartburn this all within 6 months. At this point my doctor did the immune serious blood work and it advised the speckeled pattern and to investigate scleroderma. By the time I got to the specialist 12 months after my first symptom my skin had started to thicken and my hands would not close or open flat. She took one look at me and said without doubt it was SD.


Lucy

Diffused Scleroderma

Diagnosed Dec/06

First Sympton Nov/05

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Hi,

I was so small when this all started that I actually cannot remember it by myself.. but my parents have told me that it was the skin that made them take me to the doctor. I actually find some photos of me, taken in a hospital, when I was like 8 years or so.. Compared to a current situation, in those pictures I have much less skin involvement but luckily SUP is helping with it now :)

 

Emmi

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Well I had pain growing up and was really always tired.. Then I had raynauds at the age of 21. The pain has always stayed with me. Then it was reflux then more pain and other diagnosis's as the years go by.


Sam

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For me it was Raynauds and ulcers. But I remember my legs going numb several years before in the cold and I could barely walk, they were so numb I hobbled inside and had to sit on a radiator for about an hour to heat up.

Annie

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It was long before I began with what I would call Sclero symptoms... that I frostbit my fingers one winter. My raynauds came on after that, then the Fibro diagnosis.

In 1991, I began displaying more symptoms, at which time the testing began.

It took 4 years for the diagnoses to be made, at which time, I would vomit each time I would try to eat anything, losing 18 lbs in a month... flu-like.

The horrific joint pain, microstomia, tautness, pain in the hands... all seemed to come on about the same time. The "heartburn" symptoms steadily worsened, from then, on.

 

Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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My first symptoms were Raynauds, then GERD, next anemia and hypothyroidism, then telangiectasias made their way. Lastly, the lungs got pretty intense and that's when I found out it was systemic scleroderma. I was always tired, but assumed it was lifestyle related and working out too much.

Tangelo

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