Sweating through symptoms of scleroderma is a practiced skill
Like a snowflake, this columnist's journey with scleroderma is unique
The feeling of overheating while being cold at the same time isn’t an unfamiliar symptom to me. For almost a decade, I have dealt with hot flashes due to medication-induced menopause.
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.
About the Author
Comments
Helen
Loved your article. I’ve had SSc since 2002 and still don’t know enough about it. I do have night sweats all the time which definitely aren’t menopausal as I had a hysterectomy in 2003 and am 53, my pillows get completely soaked every night but funny enough my feet and hands are still cold.
Thanks for the article it made me smile 😊
Best wishes
Helen x
Ramona Krone
I enjoyed this article. I too have bad lung involvement but don’t need oxygen yet even though, when I walk, I feel like I need the good O2. I also am a hard case with medication. I have reacted badly to so many. Keep going with one foot in front of the other.
johnny lopez
I liked the article. I haven't got the night sweats, but still suffer from the Reynaud's on my fingers. I fear the winter months. Even here in SoCal. I pray that your lung function improves. I didn't know how many ways people suffer with different illnesses. I'm glad that you were able to share your experiences with women SSc patients. When in doubt, a blood test. thanks
Dawn Maglish
This is very interesting! I was going to the Dr. for hormone help when, there was inconsistency in my bloodwork. My hormone Dr. said I was not in menopause but was severely lacking DHEA and Progesterone. She said there were other things in my blood I needed to go back to my GP for. This is when my GP tested my ANA and found the Centromere antibody. All this was last year. I have had night sweats, restless sleep, and body aches this whole time. I assumed it was Scleroderma related, but who knows. I am early in my diagnosis and it doesn't seem like there is much proactiveness with noticing things that can progress the disease. Anyway thank you for sharing
Debbie
Amy, as always, nice to hear from you. Bummer to hear of your continued struggles. Congratulations on your positive attitude!
Amanda
I have hyperhidrosis from way before scleroderma. My whole life actually. But night sweats became a thing where they weren't before. I don't know if it's the scleroderma , medication, or something else. Raynaud's is what makes that a special hell. Being cold and hot at the same time. I use a blowdryer to regulate my temperature, I use the cold on my sweaty head/face and warm all over elsewhere to keep my sweat dry and warm up my hands and feet. It works better than anything else to get me comfortable quickly.
JoAnne Staehnke
Thank you so much for ALL your information. I've just started learning about Scleroderma since my diagnosis in Dec 2023. Just how long I've had it, know one knows. I can identify with the night sweats, hot and cold at the same time. Menopause and hysterectomy was several years ago, not part of this. July of 2019 I was told I had Hypothyroid, Lupus and Hashimoto's, but not told they are/I have 'autoimmune disease' or given information. So, I started learning on my own, stopped taking certain meds that were know to cause Lupus and was cleared of it according to lab work 2 or 3 years later. But, other autoimmune diseases were not tested for until recently. Learning about Scleroderma and the Vasculopathy is scary. I am so grateful for 1 Functional Medicine Doctor who is working through this with me. More labwork coming this month.
I'd like to be involved in trials and definitely learn more from others of how and what to do to help myself. I have read that I need a Rheumatologist , but in my town I cannot find doctors who know or want to know these root causes and with new treatments. Medical Colleges need to train them in so much more. I have learned that of the list of medications that cause autoimmune, I was on three (3) of them at the same time for years.
I wonder if there have been any studies on how Covid 19 may effect/increase the symptoms/severity of SS.
Joanne Griffin
I was diagnosed with scleroderma 18 months ago. Lately I cannot seem to regulate my temperature well. I am either all hot and sweaty at night or freezing. I no longer get goosebumps' - instead it feels like a fizzing sensation under my skin. Anyhow, I recently found some sheets for the bed that seem to regulate your temperature. I no longer wake up because I am hot or cold. They say they are designed for Space by NASA. I recommend them.