SCLERO.ORG is retiring 4-24-2021. Thank you for the memories! You'll still find us in the Wayback Machine, and we'll carry your stories in our hearts forever.
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Debbie: CREST

"I am much better than when I first posted my story."

Sunflower Closing photography by Shelley Ensz Here is a copy of the letter I sent to my rheumatologist seeking answers. I have seen this doctor three times since my diagnosis. So far, I have heard nothing back from him.

Dear Doctor,

Thank you for taking the time to call me back last week. Unfortunately, we were not able to connect. I wanted to talk with you about some of the symptoms I have been experiencing. I decided that it may be prudent to write you a short letter outlining these symptoms and to tell you a little about my medical background, because you really do not have that much information. I know your time is valuable and I thank you in advance for taking the time to review this letter. I chose to write this with the hope of improving my current situation and possibly getting answers to some of my questions.

I have had the symptoms of Raynaud's phenomenon for nine years. It started after I was hospitalized for nonspecific uterine bleeding. Up to that point, I had never been sick. Even as a child I was pretty healthy. After the bleeding, which they say may have been caused by a ruptured cyst, things have not been quite the same with my body. I have had a dull pressure and, at times, pain under my left rib ever since. I do not know why, and one of the many physicians I went to said it may be irritable bowel syndrome (IBS). Sometimes the pressure moves to my back and it feels hot. This past week, it was like that and accompanied by headache and vomiting. It might have been caused by a bug, but everything was happening at one time.

During the past six months, I have had at least four very intense headaches accompanied by vomiting. They feel like very bad hangovers. (I remember one from college.) When I get like this, I usually have to stay in bed all day. I was like this for two days this past week, on Tuesday and Saturday. I wondered if it was the medications or a bug.

This past week, I noticed some pain in my jaw (ear area on the right side). It is rather dull, but there is also some discomfort on the left side under my chin and it goes down almost to my collarbone on the left side of my neck. There is a swollen lymph node on the left side of my neck. Sometimes it is bothersome.

The other most notable change is in my thinking. It seems that I have become so much slower in my thinking. I do not know if it is depression and I need something for it or if this disease is affecting my brain. I have told you about the pressure and dizziness. It comes and goes. The best way I can describe it is the way one gets when they cannot sleep and the mind is going one hundred miles an hour. I get like that and I cannot think straight. It is really maddening. I have always been very sharp and on top of things. I would like to know if something is wrong with me medically.

Right before I came to see you in November, I visited a therapist as a last resort. I had been feeling so badly for nine years and thought maybe it was mental since the doctors had treated me that way and could not come up with a diagnosis or reason for my pain. I had never been to a therapist in my life, but I thought, “I have got to change my life.” After seeing me twice, he suggested I get a referral to a neurologist to be tested for Multiple Sclerosis (MS). I told him about various symptoms: double vision; dizziness; mental confusion; inability to think straight; numbness in hands, feet, and legs; tingling; Raynaud's phenomenon; fingers locking up on me on the left hand; and pain on left side.

To date, no testing for MS has been done, but when my general practitioner heard this he decided to do the antinuclear antibodies (ANA) panel. Then I was told I had CREST. At first I was relieved and felt, at last, my symptoms have been validated. But now I find myself wondering what is happening to me. It is frightening.

Over the past couple of years, I have noticed diminished mental ability. I do not remember things as easily. I can read something and not remember any of it. There are times when I do not recognize things for a couple of seconds. It is really weird. To a degree, it has affected the way I interact with others. I am afraid I am going to have one of these episodes when I am doing something really important. I just need to know what I can do about this and whether or not scleroderma is affecting my mental abilities. Can it? Do you happen to know what is causing the itching? I am taking the medication, and it has helped me a great deal, but why is it happening in the first place? Should I see an allergist? I have mentioned the tightness in my chest and the feeling of restricted airflow. I have also noticed discomfort on the left side above my heart. Could this be the esophageal dysfunction? As for other symptoms, the headaches are the worst aside from the confusion. The tingling and numbness comes and goes in my hands, feet, and legs. Note that it is not accompanied by color changes. I feel some discomfort where a lymphoma was removed from my left arm in 1995.

That just about covers it. I am greatly concerned about some of these things and would like to know if it is just part of the disease. If it is, then I will learn to deal with it. My concern, though, is that I do not want something to go undetected that could be corrected. If it cannot be corrected, I just want to know what I am up against.

Thanks again for your time and I hope to hear from you.

Symptoms: Dizziness; light-headedness; confusion; pressure in head; pressure and pain under the left rib (sometimes more intense, it burns and gets very hot); headaches and nausea; lymph node in neck swollen and slightly tender; tired all the time. Lately, my sleep has been affected somewhat. I wake up very hot and almost sweaty, but then I am okay within a couple of minutes. I wake up at least four to five times a night; I have chest discomfort on the left side above my heart. Sometimes I feel my pulse beating heavily in my temple and neck (left side), tingling in fingers, feet, and legs, and some cramping in calf muscles and fingers. Six months ago while paddling my kayak, the fingers on my left hand locked up, and I had to pry them open (maybe my fingers were tired, but I had been kayaking regularly for two years without this ever happening). I have not been in a boat but one time since then. I have blurred vision. Nail beds still show broken blood vessels, and the skin on my fingers feels a little tighter.

After summing up my story, I am still angry, still sick, and still confused. I'd like to thank everyone who has answered my questions and shared their stories. It has truly been a big help.

~ Update - March 2002 ~

Since I posted my story, several people have contacted me to learn more about my condition, while others simply emailed to wish me well. I want to let everyone know that I am much better than I was when I originally posted my story. I have good days and bad days like anyone, but I am functioning quite well.

In 1999, I was scared about my future and this disease called scleroderma. Now I understand it much better, and I know that, to a degree, I can change the way I feel. It was quite difficult to get to where I am because emotionally, I was a wreck. However, when I learned to accept and understand my condition, I was able to develop a more positive and healthy attitude.

In the beginning, part of my problem was adjusting to the side effects of prescription medications and accepting the fact that I have a degenerative condition. It is not easy to accept at first, but it gets better if you have supportive family, friends, and coworkers. I am blessed in this area.

I have joint and nerve pain, chest pains, irritable bowels, headaches, and Raynaud's phenomenon attacks. Some days my entire hand turns blue! I get through it though. Now these symptoms are part of my daily routine.

If you have been recently diagnosed and you are going through the frightening adjustment phase, perhaps reading how my situation turned around might give you hope.

To Contact the Author

Email: [email protected]
Story posted Posted 2-1-99
Email address updated 2-21-02
Story update posted 3-13-02
Story edited VH1: JTD 8-9-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Irritable Bowel Syndrome (IBS)
Multiple Sclerosis (MS)
Voices of Scleroderma Volume 1

This Story is Featured in Voices of Scleroderma Volume 1

Voices of Scleroderma Volume 1 The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

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!

Go to Debbie B: Mother of Linear Scleroderma Patient

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected]. Disclaimer. Privacy Policy.