How I (Barely) Survive the Annoying Scleroderma Itch
Does scleroderma itch? More than you can imagine
When I moved to Florida in 2002, I knew nothing about tropical climates, other than they’re great for beach vacations. While unpacking the moving truck, I sat down in the grass for a quick rest. That was my first mistake.
Within seconds, my upper legs were covered in fire ants. The tiny monsters went straight to work injecting their venom. No matter how fast I swiped them off, they had already left behind burning bites all over the back of my legs and up to my lower back.
Once I was finally rid of them, I made my second mistake: I scratched the burning itchiness that had spread across my skin. That was a quick lesson: The scratching only exacerbated the problem and made it last longer.
My skin itches
Fast forward to 2016, my second year after receiving a scleroderma diagnosis. My skin, muscles, and everything in between began a “turning to stone” journey. My form of scleroderma constantly leads to tissue damage and the overproduction of collagen, which causes my organs — including the skin — to harden and tighten. While it is painful, it’s the insane itching that drives me crazy.
I live in a body that feels like it’s forever covered in an army of fire ants. Not in the sense of an initial sting, but rather a burning, itching sensation that makes me want to desperately claw at it with long fingernails. Worse, the itch is deeper than solely on the surface of the skin.
Sadly, I’m not exaggerating. Once, when I was holding a piece of sandpaper, I thought about using it to grind at the insane irritation on my body.
Of all of scleroderma’s symptoms, itchy skin is by far the biggest nuisance to me. It requires constant moisturizing and even dictates the clothes I wear.
Sometimes even the tickle from a single hair from my head can set off an uncontrollable urge to scratch. When I’m in public, it looks like I’m awkwardly squirming, as if I had ants crawling up my back.
The right clothing helps
For the most part, when this happens, I keep busy and can ignore the itch. If I remove tags from clothing and make sure I’m wearing soft materials, I get by pretty well. Of course, I also must ensure that no loose hairs are trying to hitch a ride in the threading of my clothing.
Bedtime is when I must be extra diligent, however. Lying idly to watch TV or fall asleep is when my focus shifts to the irritating areas of my body. Without realizing it, I’ll start scratching. When I notice blood under my fingernails, I must force myself to stop. It is so hard to resist the urge to scratch once I’ve started doing it. Yet no matter how hard I try, I can never get deep enough to relieve the itchiness.
I do better at night when I wear soft cotton pants and loose T-shirts. I used to love the freedom of wearing a nightgown, but even the tiniest stubble of hair from one leg touching the other becomes a trigger.
Moisturizers also help
Another way I battle the urge to itch is by always staying moisturized. Right after getting out of the shower, I drown my body in coconut oil. It’s cheap, healthy, odorless, and lasts longer than other products I’ve tried. As a bonus, one of my dogs follows me around trying to lick it off my feet. It’s like a comedy routine trying to race him to get socks on. And I welcome any form of comedic relief in my life!
I also have moisturizers strategically placed around my home — by the sink, at my desk, on end tables, and elsewhere. My hands take a beating throughout the day, especially since I wash them often. (Germs are not my friend.) If I don’t moisturize my hands regularly, I’ll be destined for a miserable, painful, itchy experience.
My favorite hand moisturizer is Mary Kay’s Satin Hands. It’s thick and coats my hands like armor. It also helps to keep my nail cuticles soft, which is important because they tend to scab and harden if I don’t maintain them.
My face, however, is a different ballgame. Thick lotions give me pimples, and fancy ones make my skin red. The only product that doesn’t irritate it is Cetaphil Moisturizing Cream, the original version. It’s the first thing I put on after showering — and I mean the very first thing. Scleroderma is stretching my cheeks, jawline, and forehead like it’s trying to pop my skin like an overfilled balloon.
Do you have a favorite moisturizer you can’t live without? Or perhaps you’ve found another secret weapon that battles the itch. Please share in the comments below. We can all support and learn from one another while the experts find us a cure!
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.
Try vinegar water spray. I keep near my bed. Instant relief.😌
You are right cause the itch in the beginning was just crazy. I even had to leave own son:s wedding party early because I had worm a long sleeve wool coat!!!
I tried everything on the shelves in addition to Benadryl!! Baths with baking soda and Epsom salt did help some but not completely, mainly calmed down my constant need to scratch!!
Finally, I entered the sunscreen section of the grocery store where I found a bottle of aloe vera lotion!! The lotion soothed the skin taming down the itch.
A sidenote for dog lovers:. Im those days,my dogs were not allowed on the bed!! But Chiquita could sense my misery and landed on my pillow for support!! I needed her love and she knew!!
If there is any comfort, the itch did eventually go away.//joy b
I use the medicated version of Selson Blue. I just pour it into my than and apply it full strength to those are that are driving me crazy. I let it stay in for a couple minutes and then gently shower it off. I hope it gives you some relief.
Two products I love: Endoca Hemp Whipped Body Butter - it has saved my hands and feet from turning into crocodile skin. It is so organic you can eat it. As my skin and soft tissue hardens from the disease, it has really helped on the joints too. My wrists get the itchiest and it does help to lessen the itch. The other product I have discovered for the Raynaud's ulcers on my fingers, the itch on my wrists, and the hardening of my face is Maria Valentino Skin Nourishment for Face and Neck. It is made from Reishi mushroom oil and CBD. I use it on my face and wrists at night. I massage the oil into my hard hands and fingertips then put band aids over the ulcers. It has really made a difference in healing the ulcers.
Thank you for the product information. I'm going to order both!
I love Curel itch defense wet skin and the Curel itch defense moisturizer.
Janet M Blumenshine
What could be used for scalp itch?
The only place I have itchy skin is on my legs. By the end of the day, they are driving me nuts. I get in the shower and run super hot water on my legs. At first, it makes them itch more, then the itching stops. I use Trader Joe's Coconut Body Butter on my legs after showering It keeps them moisturized well. Also, Vanicream works great also.
Both my lower legs were so dry and the skin on both is very tight. I used to scratch and scar them so bad, till they bleed. It took a lot of moister cream and care to get to a decent place. I recently started using Dove for men every day in my shower. While my legs are not perfect they are doing better.
Please please try SARNA anti itch lotion. They told me about it 27 years ago when first diagnosed. Get it at cvs, Walgreens, any drug store!! It has menthol in it. You will be amazed!!! I too still itch, but not as much as initial few years. Thank God!
I was diagnose 2 yrs ago with Systemic Scleroderma the itch was unbearable. I use gold bond lotion the green bottle it has menthol in it. It relieves the itch and gives your skin a cooling effect. You can order on Amazon is hard to find in stores.
Valerie Jean Romero
I try to have a frozen bottle of water in the freezer for my flare ups. Which is often. I apply the frozen bottle and roll it around on my skin. It calms the burning sensation and the itching. I also take hydroxyzine per my Dr. I will try some of the moisturizers mentioned on this site.
I took a 10 mg Claritin tablet a day which really helped with the itching! Fast forward 21 years….. except for raynauds I was in total remission. Now developing swollen fingers, increased raynauds and synovitis. So sad😥
I hear & sympathize with you all, as I am going through the exact same things … for my itching, I use AVENO RESTORATIVE SKIN THERAPY Itch relief balm … it works quickly & lasts … for cleanser & moisturizer, I use CeraVe, it is light & really soaks in & last all day … hang in there everyone … we will get through this DESPICABLE DISEASE ❤️