Did Chronic Stress Cause My Scleroderma?
Because no one else in my family had scleroderma, I’ve often wondered where I procured this delightful autoimmune disease.
Scleroderma is the gift that keeps on giving, something I wouldn’t wish on anyone. I wonder if there’s a way I can return it, maybe for an in-store credit or a gift card.
But alas, there is no return policy for scleroderma. Once you have it, you have it, just like that ugly sweater Grandma put under the tree — you have no choice but to wear it. Now I understand why the kid with the bunny suit in “A Christmas Story” was scowling.
But where did it come from and how did I get it? No one really knows for sure, and I find this very intriguing. My private investigator personality will kick in, and I’ll start researching the answer.
A scleroderma patient is a whiz at investigating, researching, and discovering. We turn over every stone. We will find the answers.
But that’s the tricky part: There’s no definitive reason why any of us has scleroderma. Of course, there are multiple theories, and my main one is stress.
We all know that life can be stressful, and that stress affects us in many ways. Stress is a killer. Being in a constant state of fight-or-flight triggers an acute stress response that keeps our body in its heightened state.
Our bodies want to maintain homeostasis, a fancy word for a state of balance. Sustained stress will cause the body to break down. It has been scientifically proven that a homeostatic imbalance can lead to disease.
I have spent most of my adult life under moderate or severe stress. I have an outstanding ability to compartmentalize my emotions. If something needs to be handled, I handle it. However, managing it all doesn’t mean it isn’t hard to handle.
For many of us, managing stress is a challenge. We may have families to take care of, careers to excel at, and a multitude of other responsibilities that fall on our shoulders. We don’t have time to let the stress bring us down. And those of us with scleroderma have to manage a rare disease on top of everything else.
However, women are 4 times more likely than men to be affected by scleroderma. I think women are often expected to handle more stress. We are encouraged to have it all and do it all. That pressure alone is extraordinarily stressful.
Once we’re living with scleroderma, or any autoimmune disease, stress can significantly affect the severity of the disease and trigger flares. Therefore, it would stand to reason that stress could trigger an autoimmune response. Stress affects every organ when our body is under duress.
According to an 2018 article published in JAMA, a large study of Swedish patients found that “exposure to a clinical diagnosis of stress-related disorders was significantly associated with an increased risk of autoimmune disease.”
Doctors can’t definitively tell me what caused my scleroderma. All that matters now is managing my symptoms, and most importantly, slowing disease progression. To do that, I must reduce my stress levels.
For anyone else living with scleroderma, do whatever you need to do to minimize stress. Personally, I love hot yoga. The moist heat helps my joints, and I find it to be a very cleansing activity. Just be sure to get your physician’s approval before starting any exercise program. Alternatively, you could read, write, create — whatever makes you happy.
Your body will thank you for it.
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, and are intended to spark discussion about issues pertaining to scleroderma.
Could someone address the perfect eating plan for scleroderma?
Linda, that is a great question. I have seen many people utilize the Autoimmune Protocol Diet but I don't think there is a specific perfect eating plan. With each person having a different experience with scleroderma, it would be hard to pinpoint one. I would talk to a dietician or ask your rheum if they have something they recommend you follow!
Very relevant questions and insights Amy! I wonder about and grapple with these issues constantly. With a scleroderma/autoimmune disease I find I am more sensitive and susceptible to all stressors by many multiples as compared to my family members - food variation, temperature swings, emotional demands, noise... I too find that regular exercise (in my case light circuit weight lifting) makes me more resilient and able to recover. That and making sure I do something enjoyable everyday, like setting aside even a bit of time to listen to music.
Yes, my friend! I couldn't agree more. I too find myself a tad more susceptible to those emotional demands. My body seems to react to the stressors a bit quicker these days. I love listening to music. It just transforms my soul! Great choice. :)
I have absolutely no doubt that years and years of stress finally caught up with me and triggered my Scleroderma (SSC). I had been a police officer for over 25 years at the time and it almost killed me. That was back in May 2016. Now, I'm doing much better! In fact, save for a few digestive issues and medications I take as a result of having to have a kidney transplant, no one would know I have the disease by just looking at me. I've lost some good friends however and stress management is now part of my daily routine.
Darryl, please accept my gratitude for your service to your community. Being a police officer, is by far, one of the most stressful occupations out there. I am so pleased to hear about your stress management. I removed myself from a stressful environment last year in March. Since then, I have had less than a handful of flares. I was having them all the time and felt like I was constantly sick. I can appreciate the pain of losing good friends. I did as well when I removed myself but I truly believe it has saved my life! I am so happy for you!!! Keep kicking being a total warrior!
This is a great article and I agree that stress played a huge role in my diagnosis of scleroderma. I am male by the way.
Thank you for your kind words. I definitely feel like stress does not discriminate nor do chronic illnesses. I hope you are finding ways to reduce your stress!!! Stay well and healthy.
Hi Amy, thank you for sharing your thoughts. I have been diagnosed with undifferentiated connective tissue disease ("The term "undifferentiated connective tissue disease" (UCTD) is used to describe a condition in people who have symptoms and lab test results that indicate a systemic autoimmune disorder or connective tissue disease, but which do not meet enough such characteristics to indicate a diagnosis for a well-defined connective tissue disease such as rheumatoid arthritis, systemic lupus erythematosus (lupus) or scleroderma.") As a trauma survivor and an advanced trauma sensitive mindfulness teacher, I've studied a lot of the research evidence around how chronic stress and trauma gets stored and stuck in the body and how it impacts one's nervous system and can potentially be a "doorway" to autoimmune disorders or connective tissue diseases. To your point, it is so important to find modalities that support reduction stress in one's life.
Thank you so much for replying Jeanine. I was initially diagnosed with UCTD. My body had the physical symptoms of Scleroderma and Lupus. I have all three, Scleroderma, Lupus, and RA. I do not wish that on anyone. It can be extremely stressful trying to find a definitive diagnosis. I truly believe trauma can certainly be a "doorway." Stress reduction for me has been key. I left an extraordinary extremely stressful situation in my life and my health has definitely improved.
Hi Amy and friends, I have a theory on how I got Scleroderma, which does involve stress but also environment/situations. This is based on NO scientific evidence lol. I was working as an armed guard at a nuclear power plant, which could be stressful and also exposed me to low levels of radon. While there I was told my son had a progressive brain disease. That is what I see as my "situation and stressor". I left and went into nursing. While there I contracted Hepatitis C from a patient. I believe my immune system was already compromised. I started on a brutal 6month treatment plan which included an immunosuppressant drug. My son passed away around that time (situation and stressor). My theory is that's when Scleroderma snuck it's way in. Two - three years later I was diagnosed with an Interstitial lung disease and scleroderma. And the rest is history.
Hi Tobey, WOW, you have been through the wringer with stressors. I am so very sorry to hear about your son's passing. Please accept my condolences. I can see the environment and situations. I would be interested to see more studies on this hypothesis. It has to be triggered, in my humble opinion, somehow. I hope you are doing well now. Managing this disease is undoubtedly key to living a more active life!
Mary S. Northington
Inasmuch as scleroderma is reported to have a higher incidence among African Americans and women, I wonder how much the racism stresses endured by black people, particularly in this country, contribute to black susceptibility to scleroderma.
That is a solid question and one, being a white woman, I cannot answer. But, I can see where the correlation could be reached. It would be interesting to do a study with African American women with scleroderma.
I recently been tested for scleroderma, been under a lot of stress lately, past history of Lyme Lupus and now one test done in sep was positive and now again positive and the rest level was higher, been in so much pain, my dr said he doesn’t want to diagnose me because my skin doesn’t look like plastic yet, I cried in so much pain don’t know what else to do. Anyone has any advise or testimony of their experience would help me understand I don’t know much. I understand this is not medical advice just looking for someone that might have experience the same
I am so sorry to hear you are in so much pain. I would suggest finding another physician if yours does not seem to be listening to you. I went to three different rheumatologists until I found one who would listen to me. My skin does not look plastic. And, no doc should wait to diagnose. You will become your own advocate and please utilize this website as a solid resource! That's why we are here. This is a community where you never will be alone. Sending you much love!!
You should eliminate any produce that causes or increases inflammation (dairy, gluten), reduce sugar and salt, and focus on maintaining a strong gut system (lime, coriander and ginger juice in the morning, kombucha, vegetal-based kefir, probiotics). I strongly recommend the Wahl’s Protocol Cookbook, which proposes a modified paleo diet.
Ask for an ANA blood test. If this is positive, the doctors should layout the proper « treatment » for you. As we know, there is no cure, but certain medication can alleviate your pain. The sooner you start, the better it is.
Mary, and everyone, there have been studies on this topic. I heard a well respected scleroderma dr. state that it is very likely that racism and extra stress as well as less access to health care all contribute to the severity of disease in African- Americans. Also there have been studies showing that scleroderma like other autoimmune diseases is caused by a cluster of genes and then a series of triggers such as infections, physical and psychological trauma, exposure to chemicals,etc.