Navigating the Uncharted Waters of Scleroderma

Navigating the Uncharted Waters of Scleroderma

I like to read online about how other patients experience systemic scleroderma, especially when I encounter unusual symptoms that don’t seem to have any relevance to the disease. So far, I have amassed a small collection of minor, but annoying and somewhat peculiar, ailments that puzzle me.  

These symptoms range from my nose running uncontrollably every time I eat, to the feeling that a large piece of tape is stuck to the soles of my feet. I frequently have a sensation as though the skin across my scalp has tightened, which causes annoying headaches. My gums have receded, exposing dentin and causing pain when I eat cold or crunchy foods.

I often discover at least one other person online who is also experiencing these quirky symptoms, but they still baffle me because I can’t find any reliable information to prove or disprove a link to scleroderma.

As I was pondering my latest oddity — tachycardia when I attempt to stand and engage in a task for longer than a few minutes — I remembered a common issue my clients had when I was working as a counselor. 

The issue relates to the confusion and anxiety that people experience as they transition between life changes, such as retirement, becoming a parent, or when their children leave home. While there are many other examples, those significant shifts can leave a person feeling disoriented.

The resulting confusion occurs because the person’s way of life suddenly becomes unfamiliar. I used to liken it to traveling between towns without a road map or any recognizable point of reference. It is scary when one is stuck in the middle of nowhere, unsure of which direction to take, and with no indication of what to expect at the destination. Counseling was a way to try to chart some kind of map with the client to help them feel safer and allow them to move onward toward their new location in life.

It strikes me that living with scleroderma is similar because we are in uncharted territory. As our disease is rare, there is little funding available for our dedicated researchers to chart our map in as much detail as I’m sure they would like.  

Many aspects of the various forms of scleroderma remain unclear. Currently, patients do not fully understand some of the things that happen to their bodies and whether some of their symptoms are linked to the disease, or are associated with an entirely different issue. 

While it does make living with the disease scary and unpredictable, I remind myself that there are many amazing people out there tackling those challenges and navigating the uncharted waters of scleroderma.  

Those teams of medical researchers and specialists are my heroes because they have chosen to invest their lives in helping me to understand mine. Their dedicated work takes up a significant part of their time, and I imagine that it isn’t easy trying to map out this complex and unpredictable disease. 

I wish to express a special thank-you to all of those talented, clever people for all that you continue to do. Your work is helping to paint a continually clearer picture of scleroderma, and the details are slowly and steadily becoming sharper. You continue to give me the best map possible to negotiate this disease and hope for a better tomorrow.

As a positive finish to this column, I invite you to enjoy “Sailing to Philadelphiain honor of our researchers and medical experts. The song features the beautiful, velvety-rich voices of Mark Knopfler and James Taylor singing about two of the world’s greatest mapmakers, Charles Mason and Jeremiah Dixon.

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

Kim Tocker Author
I’m 49 and live in Christchurch, New Zealand. I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years. Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound. Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component. These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort. On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.
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Kim Tocker Author
I’m 49 and live in Christchurch, New Zealand. I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years. Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound. Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component. These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort. On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.

13 comments

  1. I have had a runny nose since last September, the beginning of winter. I have it when I am vertical but not when horizontal in bed.
    Because the skin on my feet is indurated I could not stand in a shower or bath for fear of slipping and falling.
    Chris Nickerson

    • Kim Tocker says:

      It’s amazing how many small symptoms are classed as “minor” but which are such an inconvenience! Keep your chin up, and keep on fighting!

    • Kim Tocker says:

      It’s very strange, but I hope that one day research will give us all a much better picture about all the issues this disease can bring about. All the best fellow Scleroderma warrior!

  2. Barbra Ferguson says:

    After being told I had Lupus for 5 years when I went to A USF doctor here in Tampa. I was put on a drugstore of different medications(Cellcept, Predesone, Neurontin, and Plaquinel). that has helped stabilize me. Yes, I have Raynauds along with rough sneezing spells, runny nose, allergic symptoms when I get chilled from eating cold foods or beverages. I have ILD, I’m on oxygen at night and when exercising or on exertion. I have no motility left in my esophagus. Anything consumed goes down by gravity and has for many years. I have discovered crushed ice will send any stuck foods down my esophagus. My grown daughter saved me from choking to death a few years ago with the Heimlich maneuver when I choked on a piece of pancake I was preparing for the family breakfast. So I agree with the statements people make, I don’t look sick and some days I don’t even feel sick. But it doesn’t mean you are not, it just means you are good at hiding it.
    Good luck and try to find competent specialists.

    • Kim Tocker says:

      Wow! You have had quite a journey! Great advice there regards the ice….thats worth a try for sure. Sending you heaps of healing vibes.

  3. Carole Cash says:

    I’m so glad I joined your site. I have the CREST syndrome.
    I too have the problem of a runny nose when upright and especially when I eat.
    I also get tachycardia for absolutely no reason. Had multiple tests from a cardiologist, one week halter, stress tests, nuclear ultrasound and no cardiac problem could be found. Didn’t think about my scleroderma. Your column is great.

    • Kim Tocker says:

      I’m so glad you joined it as well :). And thanks for the kind words about my writing, I appreciate that. I’ve just been diagnosed with POTS for my heart issues, the POTS is connected to the fact that my blood pools in my lower legs (thanks scleroderma) and so I get tachycardia when it is trying to get the blood to my heart. About to try new meds, ill keep you posted via the column.

    • Linda M says:

      You and I have much in common with the CREST syndrome! I too have a runny nose when vertical and yet my nose is dry because of sjogrens syndrome. My heart beats funny often with no explanation and heart tests have proven negative. I can’t take plaquinil any more due to eye problems so I am on nothing for my immune system other than small aspirin dose and OTC for reducing dryness. I’m 60 now and this all started when I was in my late 30’s or early 40’s. Thanks for listening. I don’t feel that friends and family really understand how I feel.

      • Kim Tocker says:

        It can be really hard to get to the bottom of all the strange things that happen to our bodies with this disease can’t it? And yes, I totally agree, often only others suffering with the same disease can truly understand what it is like to live with it. A supportive Scleroderma support group can be very helpful. Your lead Medical Specialist should be able to put you in touch with one in your area, or as close to as possible. All the best 🙂

  4. Caryl says:

    Starting with only a bite of food, the nose starts running and continues til early evening. Does no run so much in a restaurant. Odd.my receding gums and subsequent sensitivity are probably a thing of aging. My feet feel like I’m wearing an ace bandage. But I don’t have scleroderma.

    • Kim Tocker says:

      It’s so strange the things that happen to our bodies. So hard to know what these things are connected to for sure.

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