I have been doing MW since ceasing topical steroids but I agree with you! I think looking at NMT as a "quick fix" or the fastest road to healing is not healthy because of the added mental strain it can cause being in so much discomfort. I didn't feel comfortable limiting my water intake at all (especially living in Australia) and so I decided to drink as much as I needed, but I did limit my showers to once every 2 days. I'm about 5 months in TSW and I'm oozing on my face, hands and behind my legs, but that's about it. There are different severities of TSW online, but you have to listen to your body first. And don't compare your healing journey to other people or take everything you read online at face value. There are so many factors behind the scenes and nuance that might be missed, leading to people feeling bad about their own healing. Just remember that making the decision to stop steroids was HARD, but we did it because we know it was causing more damage than good. It takes an incredible amount of mental strength to get through this, so keep pushing on everyone! Healing is inevitable, let your body do what it's capable of doing.
Thanks for such a thoughtful comment! ❤️ I couldn't agree more with you and I'm sure your story is going to be a huge encouragement to others! Stopping steroids and going through TSW is so hard (especially the first 5 months!!) but it absolutely gets better and we have so much to look forward to when this is all over with. Big hugs and best wishes on the rest of your TSW journey! You have already accomplished so much! 💪🏻
Totally agree with you and I’m glad you said it. I have a more severe case as well and I can’t even imagine going NMT- both for the social consequences and the personal well-being. Seems like a privilege for those who can. Hope everyone finds healing ✌️
Micah, THANK YOU! This comment gave me life. I couldn't agree more about NMT being a privilege for those who can. For the rest of us, we can do without the condescension, thankyouverymuch! Hoping you're healing and doing better each day. 💪🏻
Yeah, I agree with you. NMT is harsh. I was able to do it after 1 year of TSW when I was somewhat kind of healed. NMT only helped me for 6 months, and then it stopped working. I was just dry and uncomfortable all of the time. Moisturizer made my skin feel hard after a couple of days of continuous use, and then the skin would just flake off eventually. I feel like the skin can handle water exposure, NMT, moisturizer, at different stages of healing. it just depends on each individual and how the body responds. If you need to move your body, just use the moisturizer..lol.
Love this! I totally agree. I think there’s room for everything (except for not drinking water, haha) at different stages of TSW and there’s no 1-size-fits-all solution. It’s heartbreaking for me to hear about people who have been bed-bound for weeks because they’re trying NMT to heal and literally can’t move! No one needs to live like that! Glad to hear you’re doing better! 🙌🏻
Thanks for this. As you say, I think the most important thing is to listen to your body and do what makes it the most comfortable. This may change day to day and that's ok. Emotional and mental health, and attitude are vital. Let's not play mind games with ourselves. Let's be there for ourselves and love ourselves through it. I am sure that that is much more conducive to (faster) healing. I love your channel. You speak a lot of sense. Thank you. Warmly, all the best to you ❤
Aw, I love this! I especially like how you said it's important not to play mind games with ourselves! With so much time alone and too much time to think about our skin, it's way too easy to play mind games with ourselves. Showing ourselves patience and compassion is key! ❤ Thank you for such a kind comment!
I have mild tsw affecting my face down to my neck, on a few of my fingers, a small/medium patch on my chest and small patches on my shoulders. Praise the Lord the patches on my shoulders have healed! I had been using over the counter hydrocortisone for 7 years and finally I decided to just stop because I found it wasn't working any longer. Little did I know I would be going through tsw. I'm on month 4 of withdrawal and my skin is getting better but still a ways to go. I'd like to say that you're doing incredible work and I appreciate you sharing your journey and giving very insightful information that you have picked up along the way to help others with.
Hi Debbie! Thanks so much for your thoughtful comment! That is so kind. ❤️ I’m sorry to hear you’re going through withdrawal, but I’m happy to hear you’re healing! It’s amazing that even supposedly “safe” over-the-counter corticosteroids don’t have any sort of warning label on them saying they can lead to withdrawal! I hope we can continue to spread awareness and change that so other people never have to go through TSW. (And aren’t shoulder patches THE WORST?! Haha, I feel so seen!! They restrict your range of motion so much!!) All the best wishes for your continued healing and big hugs. ❤️
@@yourTSWgirl Hi, hope you are doing ok.. I am homebound for more than 2 years now, because I am doing MW and my most severe area’s are my shoulders.. 😢 As you said, the WORST! I literally can’t do anything, my boyfriend does everything for me and in the house for so long… I am seeing progress, but with TSW you know how it is; it can be a whole different stage tomorrow… I wish you all the best and we can beat this monster!
@@lindabart I'm so sorry to hear you've been homebound for so long! TSW is so mentally tough. I hope you'll be able to re-enter the world soon! I remember being so happy and surprised at all the small things I'd taken for granted being outside after being homebound for so long too. It's so hard living life just looking out of a window and wishing you could be a part of the world! Hoping we can both rejoin it soon and make up for lost time! I'm rooting for you! ❤️
I agree that probably *most* moisturizers are irritating for TSW skin, but I think I'd disagree that *all* moisturizers or oils end up irritating TSW skin. There are lots of different itches to TSW (deep itch, hot itch, raw itch, burning itch, etc.) and I've found for me that A&D ointment takes away the dry itch. It's not the answer for everything, but it's a helpful tool in my toolbox! Side note: I try and only moisturize after my skin is damp (out of the shower, wet wraps, etc) because I do feel like putting moisturizer on dry skin makes it really itchy and hard! I definitely don't recommend that!
It's so hard! Congratulations on making it through for over 2 years though! I definitely believe the worst is behind you at this point, and I hope your 3rd year brings marked improvement! His strength is made perfect in our weakness. ❤ Sending a big hug your way!!
I’m having a mild case of TSW with red arms and neck, scaly shins, feet, and no way could I do the NMT method. I’m moisturizing with a mixture of raw shea butter, coconut oil, and geranium oil from Dr. Axe. Celery juice and carrot juice, lots of water, long baths, loafer skin. It’s not worth being so uncomfortable being dry and cracked which can cause infection. Yes, mental and physical heal is so incredibly important. Leggings and clingy long sleeves have been comfortable. Thank you for your RUclips channel. Im so incredibly grateful to God that my experience had been less severe.
Thank you so much for your thoughtful comment! It sounds like you're on such a great protocol right now! 🙌🏻All of the things you listed that you're doing and you like are pretty much exactly what I did and brought me relief too! I'm so happy your experience hasn't been as bad as mine and I hope that means you get over your withdrawal so much faster too! 🥳 Thank you so much for making me smile!
It definitely changes in time with this condition….. there are times when moisturizing and showering feels so good, and there are times when putting ANYTHING on causes pain and then an itch attack… there was a time too when I couldn’t shower because it was too painful. But now it feels good and definitely helps with my self esteem when it comes to the smell and ooze factor. Sweating always feels bad but my intuition tells me it’s a good thing! Especially if I just shower off after my work out, it doesn’t cause too much more discomfort than if I didn’t work out.
This past summer I did go crazy and apply Bag Balm which is a Vaseline based ointment ALL over my body multiple times a day because of the comfort it gave me from the extreme dryness and tightness and burning…… but then I got a fungal infection…. Don’t know if it was because of the excessive moist barrier I was putting on my skin all of the time or not, but I have a feeling it was….. Living and learning ❤️
I couldn't agree (and identify) more with everything you said! It's so important to try and listen to your body and stay flexible with how you're taking care of yourself. And I also agree about sweating! It feels SO bad but I really think it's a good thing too! My mom had TSW for a few years and it only got better for her after she started working out and sweating - I don't think it was a coincidence!
@@nomadvintageclothingonetsy4416 Aw, living and learning is all we can do! It sounds like you've gotten a good rhythm down. And who knows about the Bag Balm! I definitely like a thicker emollient too because it keeps the air from stinging me. I'm so glad you got over your fungal infection. TSW by itself is hard enough without having to deal with that! You're a trooper!
2 years 5 months here and now im going through a new cycle, of skin pealing everywhere, it's legit like paper!! cuts all over me coz my skin just rips open so easily. Thought i was 90% healed a year ago. Now i know i have a few more years to go. Acceptance is very important here. Just accept this may take years. No point getting excited about healing when you never known with tsw. Keep holding on guys. Its not permanent thankfully 😅
Ugh, yes, girl! The skin peeling is so psychologically difficult! It seriously is like paper!! It's so hard to be covered in dead skin all the time and cover everything you touch in dead skin! Yuck! It won't always be like this though. 💪🏻 Even though it's two steps forward one step back with TSW, your skin and body are both healing every day. I agree acceptance is key! It's a really hard ride, but it will end! Until then, we're in it together! Rooting for you and wishing you the best. ❤️
Yes. Going on Cyclosporine made my symptoms like 30% better, and then going off made me 30% worse. I still healed during the time I was on it, so even when I went off of it, I wasn’t as bad as I was a year prior. I could have totally stayed on it longer, if I wanted! I was just impatient to get off of prescription meds. Hope that helps!
I did on occasion, yes! I did have to wrap my hands in gauze frequently, and then other very oozy areas (forearms, crooks of elbows, neck) I'd bandage on occasion too. Early on when my whole body was oozing, I wore tight, thin cotton leggings and shirts that were embedded with zinc 24/7 and that was SO comforting. It was like wearing a whole-body bandage. (But softer. 😌) I wanted to be protected as much as I could from the air because air hurt so much. However, I found that bandages sometimes didn't breathe quite enough and made me feel itchy if I didn't change them often enough. (Which I didn't want to do, because changing them hurt.) If someone has full-body TSW, I can't recommend zinc clothes enough! If they're just dealing with smaller areas, bandages or wet wraps might be enough to keep them comfortable. :)
I am on my 5th month of TSW and I'm starting to notice my finger nails are like puffed out like separating from my skin if that makes sense. I'm trying to be patient and think that it's part of the withdrawal, but have you experienced that?
Hi Hana! I did experience my fingernail lifting a little bit from my nail bed at the very tip of my fingers in the beginning, but I haven't experienced anything like the whole nail getting puffed up. I'm sorry I can't be more helpful! :( Symptoms during the first 6 months especially are so confusing and overwhelming!
@@yourTSWgirl Thank you! Yes, these first few months my body and mind is whacked!! Not only am I losing my mind, then I'm paranoid on everything with my body. Once my mind starts tripping off of something, then I know my body will react. Ugggghhhhh!!! I will ask my doctor just to see what he says and continue to try to think positive and not worry. Thank you TSW Girl! Blessings!!
@@hanafelise8242 YES!! Right?! "Not only am I losing my mind, then I'm paranoid on everything with my body." This sums everything up perfectly!! I promise it does get better and it's not always going to be this way! You're doing such a great job making it through this far!! My first five months were seriously nonstop hell. But you're healing every day -- even if you don't feel like you are! Sending you such a big hug!! ❤
@@yourTSWgirl Thank you TSW Girl! Reassurance means a LOT to me and hearing that from a survivor just give me HOPE!!! Thank you for the Hugs and sending you hugs and blessings!!!
Hi Linda! I'm still healing! :) My back and feet are fabulous, but I'm still struggling with my face... which is no surprise since I used Clobetasol on there multiple times/day for about 4 years! Hope you're doing well!
![MISSING: SLIM SHADY [Expanded Mourner’s Edition Trailer]](http://i.ytimg.com/vi/xh8qgHrOO1g/mqdefault.jpg)
I have been doing MW since ceasing topical steroids but I agree with you! I think looking at NMT as a "quick fix" or the fastest road to healing is not healthy because of the added mental strain it can cause being in so much discomfort. I didn't feel comfortable limiting my water intake at all (especially living in Australia) and so I decided to drink as much as I needed, but I did limit my showers to once every 2 days. I'm about 5 months in TSW and I'm oozing on my face, hands and behind my legs, but that's about it.
There are different severities of TSW online, but you have to listen to your body first. And don't compare your healing journey to other people or take everything you read online at face value. There are so many factors behind the scenes and nuance that might be missed, leading to people feeling bad about their own healing. Just remember that making the decision to stop steroids was HARD, but we did it because we know it was causing more damage than good. It takes an incredible amount of mental strength to get through this, so keep pushing on everyone! Healing is inevitable, let your body do what it's capable of doing.
Thanks for such a thoughtful comment! ❤️ I couldn't agree more with you and I'm sure your story is going to be a huge encouragement to others! Stopping steroids and going through TSW is so hard (especially the first 5 months!!) but it absolutely gets better and we have so much to look forward to when this is all over with. Big hugs and best wishes on the rest of your TSW journey! You have already accomplished so much! 💪🏻
Totally agree with you and I’m glad you said it. I have a more severe case as well and I can’t even imagine going NMT- both for the social consequences and the personal well-being. Seems like a privilege for those who can. Hope everyone finds healing ✌️
Micah, THANK YOU! This comment gave me life. I couldn't agree more about NMT being a privilege for those who can. For the rest of us, we can do without the condescension, thankyouverymuch! Hoping you're healing and doing better each day. 💪🏻
I agree with you! And you always make me feel better and not guilty! Blessings to you and everyone going thru this!
Yeah, I agree with you. NMT is harsh. I was able to do it after 1 year of TSW when I was somewhat kind of healed. NMT only helped me for 6 months, and then it stopped working. I was just dry and uncomfortable all of the time. Moisturizer made my skin feel hard after a couple of days of continuous use, and then the skin would just flake off eventually. I feel like the skin can handle water exposure, NMT, moisturizer, at different stages of healing. it just depends on each individual and how the body responds. If you need to move your body, just use the moisturizer..lol.
Love this! I totally agree. I think there’s room for everything (except for not drinking water, haha) at different stages of TSW and there’s no 1-size-fits-all solution. It’s heartbreaking for me to hear about people who have been bed-bound for weeks because they’re trying NMT to heal and literally can’t move! No one needs to live like that!
Glad to hear you’re doing better! 🙌🏻
This has been the most relatable tsw video I've watched.
Oh wow! Thank you so much! That means a lot. ❤️
Thanks for this. As you say, I think the most important thing is to listen to your body and do what makes it the most comfortable. This may change day to day and that's ok. Emotional and mental health, and attitude are vital. Let's not play mind games with ourselves. Let's be there for ourselves and love ourselves through it. I am sure that that is much more conducive to (faster) healing. I love your channel. You speak a lot of sense. Thank you. Warmly, all the best to you ❤
Aw, I love this! I especially like how you said it's important not to play mind games with ourselves! With so much time alone and too much time to think about our skin, it's way too easy to play mind games with ourselves. Showing ourselves patience and compassion is key! ❤ Thank you for such a kind comment!
@@yourTSWgirl ❤️❤️❤️
I have mild tsw affecting my face down to my neck, on a few of my fingers, a small/medium patch on my chest and small patches on my shoulders. Praise the Lord the patches on my shoulders have healed! I had been using over the counter hydrocortisone for 7 years and finally I decided to just stop because I found it wasn't working any longer. Little did I know I would be going through tsw. I'm on month 4 of withdrawal and my skin is getting better but still a ways to go. I'd like to say that you're doing incredible work and I appreciate you sharing your journey and giving very insightful information that you have picked up along the way to help others with.
Hi Debbie! Thanks so much for your thoughtful comment! That is so kind. ❤️ I’m sorry to hear you’re going through withdrawal, but I’m happy to hear you’re healing! It’s amazing that even supposedly “safe” over-the-counter corticosteroids don’t have any sort of warning label on them saying they can lead to withdrawal! I hope we can continue to spread awareness and change that so other people never have to go through TSW. (And aren’t shoulder patches THE WORST?! Haha, I feel so seen!! They restrict your range of motion so much!!)
All the best wishes for your continued healing and big hugs. ❤️
@@yourTSWgirl Hi, hope you are doing ok.. I am homebound for more than 2 years now, because I am doing MW and my most severe area’s are my shoulders.. 😢 As you said, the WORST! I literally can’t do anything, my boyfriend does everything for me and in the house for so long… I am seeing progress, but with TSW you know how it is; it can be a whole different stage tomorrow… I wish you all the best and we can beat this monster!
@@lindabart I'm so sorry to hear you've been homebound for so long! TSW is so mentally tough. I hope you'll be able to re-enter the world soon! I remember being so happy and surprised at all the small things I'd taken for granted being outside after being homebound for so long too. It's so hard living life just looking out of a window and wishing you could be a part of the world! Hoping we can both rejoin it soon and make up for lost time! I'm rooting for you! ❤️
Its wrong to say your addicted to moisturizers. The issue is any sort of moisturizer or oil end up irritating tsw skin. Makes it itch more.
I agree that probably *most* moisturizers are irritating for TSW skin, but I think I'd disagree that *all* moisturizers or oils end up irritating TSW skin. There are lots of different itches to TSW (deep itch, hot itch, raw itch, burning itch, etc.) and I've found for me that A&D ointment takes away the dry itch. It's not the answer for everything, but it's a helpful tool in my toolbox! Side note: I try and only moisturize after my skin is damp (out of the shower, wet wraps, etc) because I do feel like putting moisturizer on dry skin makes it really itchy and hard! I definitely don't recommend that!
Going thru tsw for more than 2 years alr. Its hard. May God give us strength. Thanks for sharing!
It's so hard! Congratulations on making it through for over 2 years though! I definitely believe the worst is behind you at this point, and I hope your 3rd year brings marked improvement! His strength is made perfect in our weakness. ❤ Sending a big hug your way!!
@@yourTSWgirl Amen.
I’m having a mild case of TSW with red arms and neck, scaly shins, feet, and no way could I do the NMT method. I’m moisturizing with a mixture of raw shea butter, coconut oil, and geranium oil from Dr. Axe. Celery juice and carrot juice, lots of water, long baths, loafer skin. It’s not worth being so uncomfortable being dry and cracked which can cause infection. Yes, mental and physical heal is so incredibly important. Leggings and clingy long sleeves have been comfortable. Thank you for your RUclips channel. Im so incredibly grateful to God that my experience had been less severe.
Thank you so much for your thoughtful comment! It sounds like you're on such a great protocol right now! 🙌🏻All of the things you listed that you're doing and you like are pretty much exactly what I did and brought me relief too! I'm so happy your experience hasn't been as bad as mine and I hope that means you get over your withdrawal so much faster too! 🥳 Thank you so much for making me smile!
100% TSW girl. YaY! 🤗 TLC all the way
It definitely changes in time with this condition….. there are times when moisturizing and showering feels so good, and there are times when putting ANYTHING on causes pain and then an itch attack… there was a time too when I couldn’t shower because it was too painful. But now it feels good and definitely helps with my self esteem when it comes to the smell and ooze factor. Sweating always feels bad but my intuition tells me it’s a good thing! Especially if I just shower off after my work out, it doesn’t cause too much more discomfort than if I didn’t work out.
This past summer I did go crazy and apply Bag Balm which is a Vaseline based ointment ALL over my body multiple times a day because of the comfort it gave me from the extreme dryness and tightness and burning…… but then I got a fungal infection…. Don’t know if it was because of the excessive moist barrier I was putting on my skin all of the time or not, but I have a feeling it was….. Living and learning ❤️
I couldn't agree (and identify) more with everything you said! It's so important to try and listen to your body and stay flexible with how you're taking care of yourself. And I also agree about sweating! It feels SO bad but I really think it's a good thing too! My mom had TSW for a few years and it only got better for her after she started working out and sweating - I don't think it was a coincidence!
@@nomadvintageclothingonetsy4416 Aw, living and learning is all we can do! It sounds like you've gotten a good rhythm down. And who knows about the Bag Balm! I definitely like a thicker emollient too because it keeps the air from stinging me. I'm so glad you got over your fungal infection. TSW by itself is hard enough without having to deal with that! You're a trooper!
2 years 5 months here and now im going through a new cycle, of skin pealing everywhere, it's legit like paper!! cuts all over me coz my skin just rips open so easily.
Thought i was 90% healed a year ago. Now i know i have a few more years to go. Acceptance is very important here. Just accept this may take years. No point getting excited about healing when you never known with tsw. Keep holding on guys. Its not permanent thankfully 😅
Ugh, yes, girl! The skin peeling is so psychologically difficult! It seriously is like paper!! It's so hard to be covered in dead skin all the time and cover everything you touch in dead skin! Yuck! It won't always be like this though. 💪🏻 Even though it's two steps forward one step back with TSW, your skin and body are both healing every day. I agree acceptance is key! It's a really hard ride, but it will end! Until then, we're in it together! Rooting for you and wishing you the best. ❤️
omg i needed this video so much! thank you!
Oh my gosh thank you so much for saying so!! 🥰❤️
Hey girl, hope your better than your last video. Are you still on Cyclosporine if so how much?
Hi Paul! I am officially off of Cyclosporine! I tapered off and my last dose was in March. :) Hope you're doing well too!
@@yourTSWgirlDoes your skin worsen when you are off of Cyclosporine? thank you
Yes. Going on Cyclosporine made my symptoms like 30% better, and then going off made me 30% worse. I still healed during the time I was on it, so even when I went off of it, I wasn’t as bad as I was a year prior. I could have totally stayed on it longer, if I wanted! I was just impatient to get off of prescription meds. Hope that helps!
Hi did u use any medical dressings for your oozing wounds
I did on occasion, yes! I did have to wrap my hands in gauze frequently, and then other very oozy areas (forearms, crooks of elbows, neck) I'd bandage on occasion too. Early on when my whole body was oozing, I wore tight, thin cotton leggings and shirts that were embedded with zinc 24/7 and that was SO comforting. It was like wearing a whole-body bandage. (But softer. 😌)
I wanted to be protected as much as I could from the air because air hurt so much. However, I found that bandages sometimes didn't breathe quite enough and made me feel itchy if I didn't change them often enough. (Which I didn't want to do, because changing them hurt.) If someone has full-body TSW, I can't recommend zinc clothes enough! If they're just dealing with smaller areas, bandages or wet wraps might be enough to keep them comfortable. :)
I am on my 5th month of TSW and I'm starting to notice my finger nails are like puffed out like separating from my skin if that makes sense. I'm trying to be patient and think that it's part of the withdrawal, but have you experienced that?
Hi Hana! I did experience my fingernail lifting a little bit from my nail bed at the very tip of my fingers in the beginning, but I haven't experienced anything like the whole nail getting puffed up. I'm sorry I can't be more helpful! :( Symptoms during the first 6 months especially are so confusing and overwhelming!
@@yourTSWgirl Thank you! Yes, these first few months my body and mind is whacked!! Not only am I losing my mind, then I'm paranoid on everything with my body. Once my mind starts tripping off of something, then I know my body will react. Ugggghhhhh!!! I will ask my doctor just to see what he says and continue to try to think positive and not worry. Thank you TSW Girl! Blessings!!
@@hanafelise8242 YES!! Right?! "Not only am I losing my mind, then I'm paranoid on everything with my body." This sums everything up perfectly!! I promise it does get better and it's not always going to be this way! You're doing such a great job making it through this far!! My first five months were seriously nonstop hell. But you're healing every day -- even if you don't feel like you are! Sending you such a big hug!! ❤
@@yourTSWgirl Thank you TSW Girl! Reassurance means a LOT to me and hearing that from a survivor just give me HOPE!!! Thank you for the Hugs and sending you hugs and blessings!!!
@@yourTSWgirl I'm so dumb. Yeah, it is the tip of my finger nails.
Hi, how is your skin doing today?
Hi Linda! I'm still healing! :) My back and feet are fabulous, but I'm still struggling with my face... which is no surprise since I used Clobetasol on there multiple times/day for about 4 years! Hope you're doing well!
JESUS CAN HEAL ALL DISEASE JUST TRUST LORD JESUS ❤️
Amen!