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


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#1 Guest_Sadie_*

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Posted 17 April 2008 - 08:48 AM

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

#2 Karenlee

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Posted 17 April 2008 - 09:22 AM

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

#3 smac0719

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Posted 17 April 2008 - 11:56 AM

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!

#4 Sweet

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Posted 17 April 2008 - 12:14 PM

My first symptoms that had actually gone on for quite sometime before anyone figured things out was PAIN. I had severe joint pain that I was unable to get under control.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Peggy

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Posted 17 April 2008 - 12:15 PM

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

#6 Sherion

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Posted 17 April 2008 - 01:39 PM

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

#7 summer

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Posted 17 April 2008 - 02:17 PM

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

#8 Cheri

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Posted 17 April 2008 - 02:23 PM

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

#9 truman

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Posted 17 April 2008 - 02:42 PM

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...........

#10 Lucy

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Posted 17 April 2008 - 03:54 PM

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

#11 epasen

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Posted 17 April 2008 - 09:44 PM

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

#12 Sam

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Posted 18 April 2008 - 12:51 AM

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

#13 Annie N

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Posted 18 April 2008 - 01:23 AM

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

#14 debonair susie

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Posted 18 April 2008 - 02:59 AM

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
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International Scleroderma Network (ISN)

#15 Clementine

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Posted 18 April 2008 - 03:26 AM

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

#16 omaeva

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Posted 18 April 2008 - 03:52 AM

As a kid I always had raynaud's and facial/hand/feet swelling. Then 2nd year in college I developed severe tiredness, then calcinosis, and ulcers, this year telangiectasia. I think I'm starting to have some tummy issues but that's not a definite yet.

#17 GocartMoz

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Posted 18 April 2008 - 04:00 AM

My first system was pain in the knees and weakness in the knees. Simultaneously I began to experience reflux and had trouble eating and holding down food. Shortly thereafter I started experiencing joint and muscle pain throughout my body and horrible fatigue. I would come home from work and go right to bed. Interestingly, Raynauds came much later for me but eventually showed itself in full force.

#18 relicmom1

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Posted 18 April 2008 - 04:55 AM

In 1998 I had a finger joint that would be "frozen" in the morning and hurt like the dickens. The dr did an xray , which was normal, and ANA, which was Sky High, Sed Rate was Sky high. That started the diagnostic journey for me. I was 40 at the time. But when I think back, I've always had the Raynauds symptoms since I was a young teen. Also had extremely painful knee joints. So I often wonder if things were starting back then.
Peace :)
Barbara aka relicmom1

#19 Guest_Jude the Grouch_*

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Posted 18 April 2008 - 06:00 AM

Most definitely my first symptoms were Raynaud's and finger ulcers. But, I was always cold, always. Brrrrr...

I was diagnosed when I was 12, but had the disease for several years before that.

#20 Margaret

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Posted 18 April 2008 - 06:14 AM

Hi Sadie ,

This is interesting how everyone is different in their initial symptoms!!!

Gareth's first symptom was the esophageal dismotility and 10 lb wt loss. Immediately after they found the dismotility, they did blood work that came back positive for sclero. Withing a month after the esoph stopped working, he went downhill fast with restrictive lung problems, losing his voice, more wt loss, and major fatigue. Although his hands were cold, they weren't diagnosed of Raynauds because there was no color change and his capillaries were normal.

Take care, Everyone.
Margaret