Sweating through symptoms of scleroderma is a practiced skill
Like a snowflake, this columnist's journey with scleroderma is unique
However, severe sweating strictly at night with symptoms of extreme internal heat, clammy skin, sleeplessness, and cold sweats throughout the night was something new, beginning about a year ago in summer 2022.
As frustrated as I am by these mysterious symptoms, I’m at least used to dealing with much more complicated and unusual issues. Nothing about my life since being diagnosed in 2001 with scleroderma has been normal.
Symptoms can be rare and complicated
Since the beginning of my scleroderma journey, I’ve had unique disease issues that are fascinatingly complicated. On one hand, I have what seemed to be normal symptoms of scleroderma, but they present themselves in unfamiliar ways. For example, I have severe lung disease with symptoms of breathlessness, my CT scans reported significant fibrotic dysfunction in both lobes of my lungs, and my pulmonary function tests reveal that the diffusing capacity of my lungs is less than 30% — yet, I have never needed oxygen, nor have I ever failed any six-minute walk tests.
For the better part of my disease journey, I’ve also had a normal Rodnan skin score, which is a measurement of the skin’s thickness in various areas of the body. This has occurred despite the fact that most of the medications I’ve taken to combat scleroderma flare-ups haven’t been effective. My entire life is a confusion.
Leaning on my medical team for support
Thanks to the experience I’ve gained in handling so many complexities and new symptoms, I now know my first step is to always discuss them with my rheumatologist, which I did with the issue of night sweats. We set out to find answers.
Working with my specialty medical team, we began adjusting the medications I take that might cause sweating. But after several weeks of no relief, doctors had another idea: When in doubt, draw blood.
I’ve noticed that when doctors are stumped by my symptoms, they always seem to draw blood to try to figure things out. This time, when my results came back, the news didn’t prompt the sigh of relief I had anticipated.
The labs didn’t show anything abnormal that would indicate a unique issue, which surprised me as thus far I have had so many. The only real concrete problem that stuck out from the bloodwork was the established diagnosis of early menopause from several years prior — a difficult and highly emotional prognosis that left me unable to have my own children.
We still don’t know if my new symptoms are from scleroderma or menopause. Having to deal with sleepless nights full of soaked sheets and pajamas spikes my irritability, and after months without answers, I was as cranky as they come. We needed to do something even if we didn’t know the cause.
Sometimes we only have patches
Without a concrete answer on the cause of the night sweats, my team still chose to tinker with indirect ways to ease the problem and get me more sleep. Our first step has been to decrease my caffeine intake and add some multivitamins to my diet. I am happy to report that although that treatment plan for the night sweats has caused heartburn and constipation, my sweaty nights have become less impactful on my energy.
Scleroderma has a way of shaking up your life unexpectedly. After 22 years with it, I’ve concluded that if I fixate on the worst outcomes I will miss out on the best parts of life. So I choose to address each issue as it appears. I make a point of pushing through the adversities scleroderma creates by educating myself and relying on my medical team for support. Even if we don’t always have answers we still try to maximize quality of life by seeking relief from symptoms through changes in diet and regimens. That’s often the best we can do.
Life is full of choices. I choose to endure hardship by embracing those bumps in the road, each and every step of the way.
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.