Scleroderma Nova Scotia Support Group

Jessie’s Story

Hello, my name is Jessie and this is my Scleroderma story. In April of 2009 my hands were swollen and very stiff; they also hurt during the twisting motion when I would wring out a dishcloth. I soon noticed that my feet and lower legs would swell a lot by the end of the day. I allowed this to continue for a week and then decided to see my family doctor. It was at this time I noticed a dime size red circular spot on my right waistline. It was just there, not elevated, not sore and not itchy just there. By May I was feeling heat and burning in my whole body. One of the strangest things I had noticed was that I would bite my tongue frequently for no reason. I had to pay attention to chewing and would chew slowly and consciously so not to bite the center of my tongue. I found if I chewed fast or (normal) I would end up biting my tongue (not always but too frequently not to observe). In mid May my family Doctor put me on a five day course of Prednisone starting with 20 mg. for 1 day, and decreasing daily by 5 mg. I didn’t notice any effect from this at that time. My palms and the back of my hands were sore. My knees were stiff and sore. My wrists were very tight and sore. I can remember a few times feeling a bit claustrophobic when my wrists and instep’s were so tight. It was like wearing a tight watch at the end of the day only I couldn’t remove it.

I developed fevers. I would have a normal to low temperature reading in the early morning of about 36.6. By mid afternoon it would elevate to 38.2 to 38.9 and I would have bouts of chills under my skin, chills going to bed and I would feel like my whole body was inflamed. At times I thought I could fry eggs on my skin especially my lower legs when going to bed. During this time I did try an anti inflammatory with temporary relief. I took Tylenol extra strength at least twice a day and again had temporary relief from fevers and pain.

By August another red spot identical to the first red spot showed up on the left side of my waist line. The first red spot started to grow and was the size of a loonie at this time. Both remained flat, round and just there. My family doctor decided to do a massive amount of blood tests to cover all bases. All was normal except a muscle damage test called CP or CPK. It was elevated to about 800, normal is around 120, so I was referred to a rheumatologist. My family doctor thought I might have Polymyositis.. She placed me on a much longer course of Prednisone. It helped this time.

In December, 2009 I met with a rheumatologist and had an extensive interview with the Doctor and more blood tests which included and ANA test. Everything was negative but the Doctor was sure I had CREST Syndrome or Limited Scleroderma, and she was correct. I was 62 years old at this time. To this day my ANA test is negative (I was rechecked last spring 2014). It’s a false negative as I was told that at least 20% of people are false negative.

I was prescribed Methotrexate in January 2010 in order to try and get me off the prednisone. I was on Methotrexate for awhile and it didn’t work for me at all. I tried to get off the prednisone over the next year by trying several other autoimmune suppressants but they didn’t work. It was at this time that my daughter told me about the annual general meeting for Scleroderma taking place in Halifax; this was in 2011. I was still very inflamed in my body at this time, unable to stand for long periods as my legs would swell especially below the knee and ankles. I knew that I was becoming weaker and had to rest more. The AGM was the turning point in my relationship with Scleroderma and the people that were affected by the disease. It felt so good to meet and see other people, to talk to someone with the disease and know that I was not alone in this. To know that there was scientific research being done and that people cared about it. I reached out to the Nova Scotia person whose phone # was on the National Site. I was invited to a support group and it was the very best thing I did for myself and family.

It took me along time to get off the prednisone. I think it lasted until sometime in 2013. It was a long slow process. I developed Raynaud’s in 2013, three years after I was diagnosed with CREST. I had some digestive difficulties in the early stages of the disease. With my weight loss (25 lbs) it was obvious I had a food absorption problem. I was malnourished and not absorbing nutrients from my diet. I will say that I did a few things at this time that I know made the biggest difference in my body. I modified my diet, drinking healthy smoothies and trying to eat healthier. I read a book about “gluten” and the effects it can have on the body. I decided to try and be gluten free. I can honestly say that within a few weeks or so all the heat (inflammation) left my body. I felt much better physically and mentally. I am not celiac but am defiantly sensitive to gluten and believe it negatively affects people with auto immune disorders. Even today, if I am bad and eat bread I will notice chills that night.

The other change; I started a few years ago was yoga style stretching. I was always into fitness of some kind most of my life. I had stopped being fit after I retired in 2007. I just got away from it. So I started doing morning stretches and added more stretching as time went on. I start by stretching my mouth and tongue. This helps with swallowing and chewing. I move on to my body and that’s before I get out of bed. I wake up every morning trying to talk myself out of doing this stretch routine and sometimes I skip it, but not often. I used to have such a zeal for exercise and fitness but now not so much, I know I must keep at it every day. Its hard work now and it used to be fun. If I skip one day its like I haven’t done stretching for years.

By cutting out as much gluten as I can and my exercising I feel very well. I am underweight for my height. I am more interested in doing things and have more stamina to go places than I did a few years ago. I feel very blessed, I have great family support. I have community support with the Scleroderma Society of Nova Scotia and the Scleroderma Support group within that society. I attend the support group every month and wish to help fellow “Sclerodermites”( a name my daughter lovingly calls us) understand that there is hope and a lot of life after this diagnoses. There are many things we can and should do to help each other and ourselves.
Thanks and God Bless.

Jason’s Story

My mother was diagnosed with Raynaud’s phenomenon, approximately 25 years ago. Her hands would turn blue and purple and she would often have to wear gloves to complete the most basic of chores, such as hanging clothes or mowing the lawn. Over time, she developed ulcers on her fingers that would break open. She underwent surgery, to cut some of the nerves, which did provide limited relief of her symptoms. A few years later, Mom was diagnosed with Scleroderma. She suffered severe scarring of the lungs, which eventually led to a diagnosis of Pulmonary Arterial Hypertension. Lung transplant was discussed with our family and we traveled to Toronto for her to undergo various tests to determine eligibility. Unfortunately, the scarring of her lungs progressed rapidly and she passed away before being placed on the lung transplant list.

The year following my mother’s passing, I decided to attend the Walk in the Park for Scleroderma, as an event to honour her memory. I met a few members of the Scleroderma Society of Nova Scotia and offered my assistance to the group going forward. Over the next few months, I took on the role as Chair of the Run/Walk and also became Vice President of the Society. I feel that by providing my support to those who are living with the disease, I am honouring the struggle that my mother experienced for many years. Hopefully, as a group, we can help to enhance the lives of those living with Scleroderma.

Michelle’s Story

I feel extremely lucky to be able to look back at my journey with Scleroderma and share my story.

I was diagnosed in 2000 at the age of 35. At the time of my diagnoses I worked as a Parks and Recreation Director, I curled a couple of times a week, I didn’t smoke or drink. I ate relatively healthily. Then, suddenly, I am in the hospital fighting for my life.

But, I guess I have to go back just a bit to tell you my symptoms which started the previous year. The first symptom I experienced was fatigue; bone tired fatigue. I would come home from work and go to bed. I just didn’t have any energy or stamina to do anything more. I went to my family doctor, had blood work done which came back as normal, so I continued to monitor my symptoms and was asked to return if anything new happened. In March of 1999 I went to see a rheumatologist, however again my visit proved to uncover nothing specific. I was not very symptomatic so was told to come back if anything changed. I should also mention that I have had Rhynaud’s since I was a teenager. By mid April I showed up at my doctor’s office with swelling in my lower legs, which looked like stove pipes. I also was experiencing swelling in my hands, was experiencing shortness of breath and a general unwell feeling. I went back to the rheumatologist the next day and was immediately diagnosed with Scleroderma. I remember my first thought was “Sclero what?” but also feeling relieved that I was not crazy and that there was something actually wrong with me. So, with that information in hand along with a arm load of meds I returned home. I was not interested in knowing anything about the disease. I had meds, a diagnoses and was good to go.

However, the first weekend in May, my life changed forever. I had spent the weekend sitting as I had trouble breathing and no energy. On that Monday morning I went to see my family doctor who immediately sent me to the hospital. Not sure what was happening I was kept there overnight. The following day I was sent to another hospital because my condition had worsened. After that I don’t remember much. I awoke a few days later and was pleased to see everyone. I spent a couple of weeks in the ICU Cardiac Unit, then my kidneys failed. I started dialysis and was transferred to the kidney floor for care. I eventually had surgery to start peritoneal dialysis and in June I was sent home. Needless to say it was a huge adjustment for me to go from a workaholic, active person to not being able to move far without effort. The whole experience was humbling for me.

I spent the next 9 months or so confined to home, traveling only to doctor appointments and trying to get well. After 10 months or so my kidney function returned and I was able to come off dialysis. What a day that was and how grateful i was to be able to pee!

I would say that over the next two years I worked hard at recovering and gaining my independence. I recovered the ability to walk distances without getting winded, I was able to do house work and personal hygiene. I was going to make it.

Since, my diagnoses I have had some health issues and spent time in the ICU again for blood pressure problems but I have worked very hard to become the healthiest person I can be. For me, this means eating right, exercising, thinking positively, living with no stress and taking care of business everyday. This is not easy all the time. For one, I do not like exercising, I don’t feel better after being physically active, but I do enjoy living and to do that I must exercise my body, if for nothing else but to be ready for the next battle with this disease. I will be ready. I don’t need much time to spend in “self-pity” before I am reminded how lucky I am to have another chance at living. As my mom says, “this is no dress rehearsal, so live well and keep moving”.

Today life is good and I have a whole new appreciation for it!