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Gertie: Systemic Scleroderma without Raynaud's or Skin Involvement

I now fully understood why the rheumatologist always pinched my skin.

Cockatiel by Shelley Ensz Early in 2001 it hit me that since childhood I have had numerous inflammatory conditions, many chronic and lifetime such as dermatitis and gingivitis and more. I would developed allergies in adolescence, and during my only pregnancy I was virulently nauseous, throwing up constantly until medicated, causing my doctor to comment that it seemed I might be allergic to pregnancy hormone. Some kind of inflammation, or apparent self-rejection process, was always going on somewhere in my body.

Then in February of 2001 the possible engine driving this inflammation process fully manifested itself in what I now call my year of total health meltdown. I would just started a challenging new job and within a month I developed increasingly severe hand, arm, feet and lower leg swelling. At night I would awaken with my right hand asleep, or with a stabbing pain in my left upper arm, or with a strange tingling sensation running up my leg, or a sharp burning pain in my toe. I would had several of these symptoms about four years ongoing, but they were becoming more urgent and troubling now.

My feet were so swollen and the pain so intense I had to wear soft clogs to work. I saw my GP (General Practitioner) for the toe pain and she diagnosed osteoarthritis. But I knew it wasn't. I had felt a change in my system the preceding autumn, like a change of gears in a car, or like when you generally feel you're coming down with something. My eyes had begun to water profusely when outdoors and I got tired faster. I told her this. She did a blood test and my ANA was 1:80, borderline positive, and in the nuclear pattern. She insisted my pain was arthritis.

As the symptoms intensified, I asked my GP for a referral to a rheumatologist. All I knew is that a rheum specializes in generalized joint/muscle matters, and I knew instinctively I landed in that category. The next six months became a blur of pain, uncertainty, anxiety and tests, tests, tests. I kept wondering when I could just take a pill and it would all go away. With each test battery results, it became increasingly clear that this mystery condition had taken me into a new realm. We monitored blood, urine, all major organs including neurological. I had MRIs, CTscans, PFT (Pulmonary Function Test), ultrasounds, 24 hour urine monitoring, etc. All this intensified my anxiety, which I now know was fueling the underlying condition, flaming the fires of inflammation in my hands and feet.

Meanwhile, the health meltdown continued when I was diagnosed separately with hiatal hernia for which I would gone back to the GP complaining of heartburn and food getting caught on the way down. I developed persistent moderate asthma and had to begin using inhalers, something I would never had before. I kept my rheum informed of all these other parallel health developments. In about six months, a complete picture began to emerge.

After an EMG to try to determine a neurological cause for the leg tingling, the neurologist proclaimed there was no neurological problem, but that I probably had a serious connective tissue disease called lupus. He prescribed an arthritis medication which did not really improve my soft tissue pain. My rheumatologist had been doing tests all along to exclude lupus. I finally asked her bluntly what - if anything - I had. She told me I was in the early stages of an autoimmune disease, a cousin of Lupus. That stung. Insurance companies do not like things like lupus or its family members. So we tacitly agreed that we would not hang labels on the aches and pains we discuss. Now the possible causes of my health meltdown had narrowed dramatically. Disbelief and shock began to set in.

Due to the economic depression, I lost my job in August, a blessing. I could not control the swelling and pain, and had some very tough days functioning. Heavy fatigue, mind fog and pain crowded out my productivity. Then, on 9/12, as the TV in the background replayed the horrific scenes of our 9/11 tragedy, I learned from my Internet research and a book on scleroderma which of the autoimmune diseases I was in collision with. The only connective tissue disease whose early stages are swollen hands and feet, and that is a cousin of lupus became clear—scleroderma sans scleroderma—systemic sclerosis without skin involvement. Like New Yorkers, in that instant I felt my world come crashing down.

I now fully understood why the rheumatologist always pinched my skin, aggressively monitored every major organ function and my rising blood pressure (which she was having me monitor daily); why she asked repeatedly if my hands and feet ever got cold, if I could swallow okay, and why she told me to get myself to the emergency room if 'XYZ' happened. In September my ANA was higher than 1:650, which my rheumatologist called "through the stratosphere," and in the nuclear pattern (strongly associated with scleroderma).

I stopped taking one medication in October because my blood pressure was rising (up to 150/88 from being low) and we suspected the meds aggravated the problem. Ibuprofen worked better for the pain and swelling. In November I went to the emergency room with acute stomach pain and vomiting for which I had an upper abdominal CT scan. The problem was probably a virus, but the technician reported a scar on the base of my lung. When I told my rheum about episode, she jumped to the medical group computer immediately and pulled down the technician's report. I ended up getting another CT of my entire lung within weeks. Luckily, it was inconclusive, and we retest in six months.

In January of 2002 I requested meds for my anxiety. My GP gave me Paxil, and as I suspected, cutting off the constant anxiety was like turning the "Off" valve to the aggressive progression of this disease. Out of work, the stress level of my life decreased. Stress and anxiety for me are the true triggers of my disease. By February my rheum said my disease had stabilized, the acute hand/feet swelling had greatly subsided. I asked her what I might expect next, and she shrugged her shoulders saying, "It is what it is."

I'm doing a home renovation project currently, and my condition has unfortunately destabilized since I began two weeks ago. With the vigorous hand/arm motion of the work, my hands are again swollen with soft tissue pain, and arthralgic pain in my right pinkie. My hand fell asleep last night, waking me up so I had to shake it. Old symptoms revisiting, and unwelcome.

I still have no signs of Raynaud's, though I do have a migraine condition but I do not get migraines as I used to. I do not have any skin thickening or hardening, either. But my hair's falling out again as it has done in cycles since late adolescence, my asthma is worsening, and my right hand feels like a tight old leather glove; red, hot and angry. I'll just pop Ibuprofen and push on. Having resigned myself to the fact of this disease, I intend to keep falling forward, perhaps now more aggressively so.

It has taken several months to come to any terms of acceptance, and I avoid thinking of my condition by name. Denial, anger, grief and frustration all converge at once. Some of my family members pooh-pooh my claims, saying I am a hypochondriac, or to stop reading the medical encyclopedia. My husband is strangely skeptical, which I interpret as his form of denial. Sadly, my sister sides with his challenging attitude, saying it's all in my head. But my friends really get it, and have been very supportive and sympathetic.

Above all, my mother gets it. She asked me a very poignant question after I explained the illness to her. She looked thoughtful for a moment, then quietly asked "Is there hope?" Her simple question forced me to arrive at a conclusion after all the things I would researched about scleroderma. In an instant I reviewed all I would read of the suffering and disability and the statistics and the cold clinical details in medical journal articles. Well, is there hope? After some thought, I told her yes. Her smile brightened my day

To Contact the Author

Email: [email protected]
Story submitted 3-30-02
Story posted 4-19-02

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
PFT (Pulmonary Function Test)
Pregnancy and Scleroderma
PDF Brochure: What is Scleroderma?

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

ISN's Voices of Scleroderma Volume 2

The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.

Go to Gianna: Progressive Systemic Sclerosis

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)