Given that our skin is the most prominent organ and constantly in our consciousness, there are challenges with each skin condition. However, some are more serious and life-altering than others, with “TSW skin” being one serious example.
What is TSW skin condition?
“TSW skin” is a result of Topical Steroid Withdrawal (also called Red Skin Syndrome, Steroid Cream Withdrawal etc), which means getting addicted to steroid creams and going through a withdrawal phase after stopping the usage. This results in severe painful and itchy skin rash, sometimes all over the body. The frequency of TSW occurrences remains uncertain, but more often it occurs after prolonged cream application.
TSW skin can be incredibly difficult to deal with. To gain a better understanding, of how a person with such skin condition feels, let’s explore how it feels to be in TSW sufferer’s shoes. If you’re also going through Steroid Cream Withdrawal, you probably can relate a lot, unfortunately. If you need more understanding and empathy from those close to you, feel free to send them this article.
How does TSW skin feel physically?
The severity of steroid creams withdrawal can vary greatly. In severe cases, a person with TSW is not able to work and might even become bedridden and need to be cared for. It affects every aspect of your life and the duration of this condition is very individual. Here are some main physical challenges.
1. The everlasting itch.
Itchy skin is one of the most excruciating symptoms TSW sufferers have to deal with day in and day out. It is not an ordinary itch, but rather a sensation that penetrates deep into the skin. Despite the rational understanding that scratching is detrimental when the itch attack occurs, it’s almost impossible to resist it. Some people have found relief in meditation, antihistamines or applying icepacks to itchy areas. Having acrylic nails cause less damage to your skin, as they’re thicker than your natural fingernails. Itch is an inevitable part of TSW, but sometimes it can have its triggers. It might be a good idea to take notes of consumed foods and any minor lifestyle changes, to understand yours.
2. Sleep is interrupted.
Itch is usually worse at night. Regardless of whether it’s the whole body itching or one small area, sleep is interrupted both ways. Some people also experience disturbing night sweats, which can further exacerbate the situation. Besides ruining your nights, it also ruins your days, as you feel tired and sluggish. In severe cases, it can escalate into extreme insomnia. You might find some relief in taking antihistamines, ibuprofen or CBD oil before going to bed.
3. Water is not a friend.
Anything water-related, such as showering, a trip to the spa or going swimming, can worsen the itchiness and your skin condition. To ease these symptoms, opt for quick, cooler showers or use wet wipes for a quick freshen-up. Some people find solace in a method called No Moisture Treatment (NMT), which has its own strict guide, on how to do it properly. It does come with its own set of challenges.
4. Sweating is extremely uncomfortable.
Sweating stings the sensitive skin and creates further itching. This is why intensive workouts and sauna are out of the question during the severe TSW period. Hot weather also exacerbates the condition. Exercise is still very much recommended, so you should just choose some less demanding training options to ensure your well-being and comfort.
5. Sun exposure can be hit or miss.
While some people may find relief from sunlight for their TSW skin, others may experience a worsening of their condition. It is important to note that in the early stages of inflammatory TSW, when blood vessels are already dilated, sun exposure is not recommended, as it can further contribute to that. However, for later TSW phases, combination of sunlight and infection-killing salty sea water has impressive healing properties. Still, moderation is the key and overexposure to sun is never healthy.
6. Managing the ooze and scabs is overwhelming.
Probably the worst part of TSW, that transforms your skin into something unrecognizable with oozing and hard scabs. You’re trying to manage it with bandages and gauze, changing bedlinen often and avoiding mirrors. You might be worried whether it’s infected and it’s not a bad idea to have it tested, as staph infection is a potential threat. Some people have sped up the oozing phase with “no moisture treatment”, as theory behind it is that it dries up the ooze. Cleaning affected areas with colloidal silver is also a good idea.
7. You look old(er).
Your skin’s texture appears different, exhibiting a thicker and more wrinkled appearance that is often referred to as “elephant skin”. It’s most visible on your bending body parts, such as knees, elbows and fingers, creating the illusion of excess skin. It can also affect your facial appearance, making you actually look older. Try supporting your skin’s healing process by incorporating supplements known for their role in rejuvenation, such as collagen, Vitamin B, Vitamin E, and more.
Managing everyday life with TSW
To make yourself more comfortable, you have to make some adjustments in your daily life too and some factors you haven’t even bothered to give too much thought to, now start to emerge.
8. New expectations for clothing
People with TSW skin condition often find certain fabrics uncomfortable to wear. Wool, for example, can be rough and itchy, while synthetic materials don’t breathe well and can cause excessive sweating. It’s recommended to opt for soft and breathable fabrics such as silk, linen, cotton, and well-made merino wool. Additionally, during the flaking stage of TSW, black clothes may not be the best choice as flakes are more visible on them. Due to insecurities about blemished skin, many individuals prefer to wear turtlenecks and long-sleeved clothing.
9. Struggle to find suitable cosmetics.
Your face is what represents you and if you are used to wearing make up in public, it can be difficult to accept that now, when your face looks blemished, flaky or even scabby, makeup may not enhance your appearance. In fact, it could potentially worsen your condition by causing further skin irritation. If you do feel that your face can handle make up, try avoiding drying products as they bring out the dryness even more. Personally, I’ve found that using a moisturizing face cream as base and then applying a deeply moisturizing CC cream is the most suitable option. I’m using Madara CC cream with hyaluronic acid, that has very nice thick and moisturizing consistency and makes my face look more even-toned without drying it.
10. Kitchen activities require extra precautions.
Even the thought of peeling potatoes or chopping tomatoes with bare hands might make you anxious, as touching food can trigger severe skin reactions. Washing the dishes or using detergents is not much better. Keep your delicate TSW skin safe and use rubber gloves. It’s best to have thicker ones with cotton linings for dishwashing and thinner ones for meal prepping.
11. Always vacuuming the flakes.
Another “fun” and often long-lasting TSW phase involves constant shedding of your skin. The reason for shedding is that your skin cells are trying to rebuild itself, but skin itself not strong enough, so the cells get to the top and flake off. Thereby the dust from your skin can be found anywhere from your home and you even have to vacuum your bedsheets.
How TSW feels mentally?
Topical Steroid Withdrawal is a marathon, not a sprint. Your mental state can change a lot during this period. In times you feel full of hope, knowing that one day this will be over and you’ll get your life back. Other times you feel hopeless and start to question – W I L L this be over? You might doubt yourself, if you’re doing the right thing and maybe even weigh the thought of going back to steroids. Please try hard not to do that!
12. Your skin is always on your mind.
You can’t get your skin off your mind, as it’s constantly bothering you. It’s definitely harder when being alone with your thoughts and it also might lead to skin picking, which is definitely not good. If your current state allows, go out, have a walk with a friend. It’s up to you whether you want to vent your frustration about the challenges of dealing with your troubled TSW skin; or just talk about anything else to get your mind off.
13. Sometimes you’re tired of explaining your condition.
It would be so much simpler if you could just say you have something more well-known like eczema or psoriasis. But, because not many people are familiar with Topical Steroid Withdrawal, you end up having to explain the whole concept. Try to think of it this way – by explaining it, you raise awareness and it’s especially important to enlighten those battling with eczema and using topical steroids.
14. Skepticism hits hard.
Whether it’s from a doctor or a family member, it’s difficult to feel like you’re misunderstood and not believed in. Send them some resources or even invite them to some TSW Social Media groups, if they’re interested. Then they can observe what you’ve been going through and how TSW works.
15. You might become less social.
Due to your physical discomforts and insecurities about your skin, you might not feel motivated to go out and socialize. Sometimes it’s worth making an effort but if you really don’t feel good about mingling, accept the situation and do what feels best for you. Try to lose that FOMO and remember that this challenging phase will eventually pass, and better times will come. Until then get your socializing needs fulfilled online. A good support group of those going through the same thing makes you feel less alone.
16. You mourn the life you had before.
When going through old photos, it’s painful to see the life you had before steroid cream withdrawal – the lifestyle, the looks and the carelessness. In some ways, it seems like another life. Who would have thought that your biggest wish in this life is to have normal skin again? Not even perfect, but just normal and functioning. Unfortunately, life is not fair and this is where you are right now, so try to evaluate little things in life. A day with less redness, oozing or flaking is worth a smile, and remember that each day is closer to healing!
17. Possible Mental Disorders.
Given all the life changes and challenges listed above, it’s no wonder that this condition starts to get to you mentally. Some TSW sufferers develop depression and/or anxiety due to their circumstances. Even after healing, there is a risk of developing PTSD aka Post Traumatic Stress Disorder, which unfortunately is quite common. It is crucial to remember that seeking help and acknowledging these mental struggles is not a sign of weakness. In fact, it is often one of the most arduous battles that many of us have to confront. Pay close attention to your thoughts and mental state, and if you find yourself overwhelmed by darkness, do not hesitate to seek assistance.
18. Success Stories give a boost of hope.
When you see that someone has endured the same hardships as you and has come out from the other side, it really gives hope that this will be you one day. And it will! Keep this healed version of you in front of your eyes, as positive thinking has its own role in your physical health too!
Be thankful for what you have!
When such a comprehensive and always visible organ is compromised, you start to understand, how important function your skin bears. When being healthy, you don’t thank your skin for being able to swim, do sweaty workouts, and spend time in the sun without any discomfort. These things seem very common and they should be.
You also have to understand that it’s not easy for your loved ones either – seeing you go through this hard time. Be open about your concerns, discuss how you can support each other physically or mentally, and show gratitude for being by your side. Make an effort to still enjoy each other despite the hardships.