{"id":6041,"date":"2021-11-11T19:12:37","date_gmt":"2021-11-11T19:12:37","guid":{"rendered":"https:\/\/www.itsan.org\/us\/?p=6041"},"modified":"2025-08-14T14:22:55","modified_gmt":"2025-08-14T14:22:55","slug":"interview-with-tsw-warrior-sam","status":"publish","type":"post","link":"https:\/\/www.itsan.org\/us\/2021\/11\/11\/interview-with-tsw-warrior-sam\/","title":{"rendered":"INTERVIEW WITH TSW WARRIOR SAM"},"content":{"rendered":"\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf\">\n.flex_column.av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf av_one_full  avia-builder-el-0  el_before_av_one_full  avia-builder-el-first  first flex_column_div av-zero-column-padding  '     ><style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_heading-b55ecc0a8981cd647c18659b10d2ec53\">\n#top .av-special-heading.av-av_heading-b55ecc0a8981cd647c18659b10d2ec53{\npadding-bottom:10px;\n}\nbody .av-special-heading.av-av_heading-b55ecc0a8981cd647c18659b10d2ec53 .av-special-heading-tag .heading-char{\nfont-size:25px;\n}\n.av-special-heading.av-av_heading-b55ecc0a8981cd647c18659b10d2ec53 .av-subheading{\nfont-size:15px;\n}\n<\/style>\n<div  class='av-special-heading av-av_heading-b55ecc0a8981cd647c18659b10d2ec53 av-special-heading-h3  avia-builder-el-1  avia-builder-el-no-sibling '><h3 class='av-special-heading-tag'  itemprop=\"headline\"  >INTERVIEW WITH TSW WARRIOR SAM<\/h3><div class=\"special-heading-border\"><div class=\"special-heading-inner-border\"><\/div><\/div><\/div><\/div>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf\">\n.flex_column.av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf{\nborder-radius:0px 0px 0px 0px;\npadding:0px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_one_full-15d750bd1b332b34c6e70b077ebbccdf av_one_full  avia-builder-el-2  el_after_av_one_full  el_before_av_textblock  first flex_column_div av-zero-column-padding  column-top-margin'     ><section  class='av_textblock_section av-av_textblock-2de302bf1aa3cf4c9157dbe6f50ac7eb '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p>At 4 months TSW Sam describes his experience and what has helped him the most. He shares an update on his health at 9 months TSW.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-large wp-image-6043\" src=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/2-1030x228.jpg\" alt=\"\" width=\"1030\" height=\"228\" srcset=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/2-1030x228.jpg 1030w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/2-300x67.jpg 300w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/2-768x170.jpg 768w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/2-705x156.jpg 705w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/2-450x100.jpg 450w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/2.jpg 1272w\" sizes=\"auto, (max-width: 1030px) 100vw, 1030px\" \/><\/p>\n<p><strong>How did your health condition begin?<\/strong><br \/>\nI was diagnosed with eczema in 2017. I was prescribed topical steroids to use on the small areas affected. I used them on and off for a couple of years but my symptoms got worse. I then had a massive flare all over my body in 2019 after I stopped using the creams. Knowing what I know now, I believe I had TSW in September 2019 or earlier. I had a massive breakout of red patchy dry skin over my face and upper body in September. I couldn\u2019t sweat, the hair under my arms fell out, I couldn\u2019t sleep and itched all over. When I went to my dermatologist she prescribed stronger creams, oral steroids and antibiotics. She said to rub the creams all over my face to get rid of the inflammation, and if my skin flared up, just use more cream.<\/p>\n<p><strong>How did you discover what you were going through?<br \/>\n<\/strong>My partner, Fay found a Reddit thread about stopping topical steroid creams. After 18 months of gradually watching my health and my skin decline I wanted to give up the creams. I\u2019d tried every diet there is, as well as every healthy lifestyle choice I could think of and yet my skin kept getting worse. My health took a downturn. I had pains all over my body, I wasn\u2019t sleeping, I had nerve damage in my eye, a rotator cuff injury, early signs of arthritis and I could no longer deal with stress of any kind.<\/p>\n<p>I said to hell with the creams and I\u2019ll probably have to move my life to somewhere hot and sunny. That\u2019s when Fay found the thread on Reddit which mentioned TSW after googling &#8216;why steroid creams don\u2019t work&#8217;. We then found a YouTube video of someone explaining their TSW experience. As I watched that ten minute video, every single thing I\u2019d gone through was checked off one by one. I broke down in tears and realised that I had TSW.<\/p>\n<p><strong>How long did you use topical steroids?<br \/>\n<\/strong>4 years.<\/p>\n<p><strong>What steroids did you use?<br \/>\n<\/strong>Fucicort\/Fucibet. Prednisolone. There were a couple of other creams I tried but I can\u2019t recall.<br \/>\nAnd Protopic (nonsteroidal\/immunomodulator)<\/p>\n<p><strong>When did you stop using topical steroids (month\/year)?<br \/>\n<\/strong>February 2021<\/p>\n<p><strong>How long was your withdrawal from topical steroids?<br \/>\n<\/strong>Coming up to 4 months now. Still ongoing.<\/p>\n<p><strong>Why did you start using topical steroids?<br \/>\n<\/strong>Prescribed treatment for eczema<\/p>\n<p><strong>Why did you stop using topical steroids?<br \/>\n<\/strong>Stopped working\/found out about TSW.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-large wp-image-6044\" src=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/3-1030x344.jpg\" alt=\"\" width=\"1030\" height=\"344\" srcset=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/3-1030x344.jpg 1030w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/3-300x100.jpg 300w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/3-768x256.jpg 768w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/3-705x235.jpg 705w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/3-450x150.jpg 450w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/3.jpg 1234w\" sizes=\"auto, (max-width: 1030px) 100vw, 1030px\" \/><\/p>\n<\/div><\/section><\/div>\n<section  class='av_textblock_section av-av_textblock-2de302bf1aa3cf4c9157dbe6f50ac7eb '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p><strong>The worst TSW symptoms you experienced?<br \/>\n<\/strong>Hell. I went to hell it seemed, that was pretty bad. What I mean by that is for a couple of weeks I went into a fight, flight, freeze response, where I waddled from the bed to the bath with binaural beats playing constantly and pure fear in my eyes. I was in pain all over and I thought I was dying. I prayed each night for another day. Just one more chance to tell Fay that I loved her.<\/p>\n<p>That was really bad. In those weeks I couldn\u2019t tell you who I was or what was going on, I lost all my memories. I would stare into space in a catatonic state scratching myself all over, not responding to Fay\u2019s calls for me to look at her. It was terrifying. At points I would be aware of what was going on, I was recognising the fact I was losing myself to depression and manic states. I thought a lot about death, and about stopping this suffering. I didn\u2019t want to die, but I wanted the suffering to stop. It was the darkest point of my life.<\/p>\n<p>All the oozing, pain, blood and tears that followed those weeks were manageable compared to that time in hell.<\/p>\n<p><strong>What treatments have you tried?\u00a0 What worked\/what didn\u2019t work?<br \/>\n<\/strong>I tried a lot. As people with TSW will tell you, sometimes one thing works for a moment, then the next week it doesn\u2019t. And everyone has different sensitivities. But alas if I had to say what consistently worked for me:<\/p>\n<p>Getting my mental health stable &#8211; Gratitude practice (writing down what I was thankful for each day), meditation, breath work, reminding myself of my body&#8217;s capabilities to heal itself.<\/p>\n<p>Routines around bedtime and waking up.<\/p>\n<p>When my skin was at its most painful and sleep was hard in all those bandages etc (the first few weeks) I\u2019d bath until I felt a sense of calm, then my partner would apply a natural CBD balm to my skin, then she would bandage me up, all while binaural beats were playing. This routine would usually get me a couple hours of sleep. Then meditation, breath work, ice packs would get me through the rest of the night.<\/p>\n<p>I kept my immune system healthy with supplements &#8211; All the vitamins especially D &#8211; plenty for the skin, collagen, vitamin A, E, K, Boswelia. I took every vitamin I could find. For the gut I took probiotics, amino acids, folic acid etc. I took L Theanine and 5HTP to sleep. Examine.com was a great resource to check supplement information.<\/p>\n<p>A game changer for me was ZINC! As soon as I started using zinc, zinc supplementation and zinc oxide ointment my skin healed 2 to 3 times quicker than it was before.<\/p>\n<p>Bandages! Changing the sheets. Bamboo sheets and clothing.<\/p>\n<p>When I could walk (I\u2019m usually very active) I saw a massive improvement. Mainly in my mental health. I was finally out of bed\/bath cycle. It hurt for a long time. I would have flushing episodes outside and start itching, I would get stressed, and the burns in my legs would be excruciating. But all that weeping aside I saw each step as a big win. And although I couldn\u2019t get out everyday, and most days I didn\u2019t want to, when I forced myself outside, even just to walk down the road and back, I felt much better for it. With the depression that goes hand in hand with TSW, just getting out of bed is an achievement and something to be grateful for. Even if you just make it to the couch and spend some hours there. Hey you made it to the couch! Give yourself a very gentle pat on the back.<\/p>\n<p>What didn\u2019t work\u2026Geez a lot didn\u2019t work. Fasting, over focusing on diet (eat what you want you are in recovery ((I ate a lot of protein after being a pescatarian and this was a mental hurdle for me to go back to red meat, but my body wanted it)) listen to your body).<\/p>\n<p>THC &#8211; for all the reasons I usually enjoy it. I was more aware of my body and mind = more suffering. That goes for anything that is slightly toxic. Alcohol etc. Don\u2019t put toxins in the body &#8211; it is dealing with enough. Don\u2019t eat too many processed foods if you can for the same reasons it is extra work for the body.<\/p>\n<p>Now that my body is stronger (and we are out of lockdown) I\u2019m going to try many different treatments. I have scheduled hyperbaric chamber therapy, infrared saunas, integrated healing and lots of other treatments.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-6045\" src=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/4.jpg\" alt=\"\" width=\"848\" height=\"273\" srcset=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/4.jpg 848w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/4-300x97.jpg 300w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/4-768x247.jpg 768w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/4-845x273.jpg 845w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/4-705x227.jpg 705w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/4-450x145.jpg 450w\" sizes=\"auto, (max-width: 848px) 100vw, 848px\" \/><\/p>\n<\/div><\/section>\n<section  class='av_textblock_section av-av_textblock-2de302bf1aa3cf4c9157dbe6f50ac7eb '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p><strong>What kind of help during TSW do you wish from the medical community?<br \/>\n<\/strong>Any kind of help. I couldn\u2019t find a dermatologist that had experience with TSW. I was referred to a teacher of dermatologists (the top dermatologist in London according to a doctor I saw) who had no experience of TSW.<\/p>\n<p>My own dermatologist didn\u2019t respond to the last email I sent her in February when I mentioned that I thought I had TSW. The only help I have received so far has come through ITSAN.<\/p>\n<p>Apart from that through the NHS &#8211; nothing. They just want to refer you to a dermatologist. I went to a private doctor who googled TSW and told me to moisturise.<\/p>\n<p>All these experiences were early on in the process and I was so disheartened by the response I got, that I gave up. It was too stressful and I didn\u2019t have the energy.<\/p>\n<p>The biggest help to me came from information I gathered from fellow TSW warriors and the community. Whose advice was usually spot on.<\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>How are you doing today and what interests do you pursue in your free time?<br \/>\n<\/strong>Today, I\u2019m better than I was yesterday and better than I was a month ago. And although sometimes it&#8217;s two steps forward one step back, I\u2019m moving in the right direction. Now that I\u2019m stronger I started playing football again and going for long walks. As I said I\u2019m booking appointments and treatments throughout June to help with my healing. In general this has shaken my whole life up and now I would like to dedicate as much time and energy as I can to help others with this condition. To raise awareness about TSW, as I fear there will be many others out there treating their TSW with steroids, who are not aware that they are no longer dealing with eczema.<\/p>\n<p><strong>Read more below for an update from Sam.<\/strong><\/p>\n<p><strong>\u00a0<\/strong><\/p>\n<p><strong>November 2021 &#8211; How are you doing now at 9 months TSW?<\/strong><\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-full wp-image-6046\" src=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/5.jpg\" alt=\"\" width=\"790\" height=\"351\" srcset=\"https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/5.jpg 790w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/5-300x133.jpg 300w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/5-768x341.jpg 768w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/5-705x313.jpg 705w, https:\/\/www.itsan.org\/us\/wp-content\/uploads\/2021\/11\/5-450x200.jpg 450w\" sizes=\"auto, (max-width: 790px) 100vw, 790px\" \/><\/p>\n<p>The last 5 months have been pretty tough. I have left my job and therefore had to move out of London. I couldn\u2019t guarantee when I could work &#8211; what with the flare ups and so left by mutual consent. It\u2019s very difficult to get help through the NHS, even with the increased acknowledgement of TSW as a condition. I did get some counseling sessions which helped my mental health somewhat.<\/p>\n<p>I went to see a \u2018top\u2019 dermatologist in London, who apparently had experience in treating TSW. She tried to prescribe me lots of medication and was dismissive about the importance the role of food played in skin conditions. I ignored her advice. And I am so much better for it. My skin was changing week by week and judging it at any one moment was doing an injustice to the next. My body was healing.<\/p>\n<p>It would be foolish of me to recommend that anyone ignore professional health advice. So I\u2019ll try to use my words carefully. Your body wants to reach homeostasis, listen to it. If you can\u2019t hear it, go somewhere very quiet, try to remove the noise from your life. Eventually you might hear something. Do your own research. Trust yourself.<\/p>\n<p>I tried many different treatments over the summer &#8211; light therapy, saunas, cold therapy, hyperbaric chamber. The list goes on and on. Some things worked some of the time and then didn\u2019t. Overall I wouldn\u2019t feel confident, or comfortable recommending one thing or another. Try anything you want. Listen to your body. Don\u2019t get too disheartened by the healing process. Stay strong in the mind and the body will follow.<\/p>\n<p>I went to see Dr Katya Mishanina (who was recommended through ITSAN)* who was very kind and supportive. It is such a blessing to talk to a medical professional who has been through TSW and therefore understands.<\/p>\n<p>My wife, Fay, (we got married in July) has been my saviour. My carer. My rock throughout all this. I wouldn\u2019t be here if it wasn\u2019t for her. She gives me a reason to live and to keep fighting.<\/p>\n<p>We have left our lives in London and moved to Athens, Greece. Fay is from here and we decided it would be a good move to get out of the damp cold of England to the sun of Athens. The cost of living is a lot cheaper here too. Which was a major factor in the decision making process.<\/p>\n<p>We were a little lost for a while. We have become closer through this process, but I must admit we have experienced some real lows. Leaving our jobs, our home, our life, all because of my \u2019skin\u2019 condition has been a massive test. Also a massive stress. Which doesn\u2019t help the skin. We have a cat who we\u2019ve brought with us. TSW has affected the lives of everyone around me. I feel sad sometimes that I\u2019ve burdened people with my issue. But mostly I\u2019m so grateful for the support of my circle. I\u2019m so lucky to be able to leave a life in London behind and live in Athens. I know a lot of people who don\u2019t have the support system, or the options I have.<\/p>\n<p>We&#8217;ve been here now for nearly 3 weeks and my skin is going through some massive changes. I\u2019m swimming in the sea which is very painful, but seems to be helping my skin heal. I have a renewed focus for healing. I\u2019m here to get better. I feel stronger. More at peace with TSW.<\/p>\n<p>I believe everything happens for a reason. And I appreciate the lessons TSW has taught me about life. How to appreciate the simple things, the normal things, the things most people take for granted. I take each day as it comes and roll with the punches. I have been making videos in the hope that I can help other TSW warriors. I know that I was helped so much by other people&#8217;s stories.\u00a0 <a href=\"https:\/\/www.youtube.com\/channel\/UCrjPoh9qPBswHUqmcTMq1lQ\/videos\">https:\/\/www.youtube.com\/channel\/UCrjPoh9qPBswHUqmcTMq1lQ\/videos<\/a><\/p>\n<\/div><\/section>\n\n<style type=\"text\/css\" data-created_by=\"avia_inline_auto\" id=\"style-css-av-av_one_full-267a558e8a794426e60016ccc5a6b0a3\">\n.flex_column.av-av_one_full-267a558e8a794426e60016ccc5a6b0a3{\nborder-radius:0px 0px 0px 0px;\npadding:25px 0px 0px 0px;\n}\n<\/style>\n<div  class='flex_column av-av_one_full-267a558e8a794426e60016ccc5a6b0a3 av_one_full  avia-builder-el-6  el_after_av_textblock  avia-builder-el-last  first flex_column_div  column-top-margin'     ><section  class='av_textblock_section av-av_textblock-2de302bf1aa3cf4c9157dbe6f50ac7eb '   itemscope=\"itemscope\" itemtype=\"https:\/\/schema.org\/BlogPosting\" itemprop=\"blogPost\" ><div class='avia_textblock'  itemprop=\"text\" ><p>*ITSAN maintains a list of TSWS (Topical Steroid Withdrawal Syndrome) supportive doctors recommended by members. Please note that ITSAN has not vetted these healthcare providers independently. These practitioners have been suggested as \u201csupportive\u201d by members of ITSAN support groups. This usually means supporting your wishes to use a \u2018no steroid\u2019 approach, and does not always mean they are familiar with TSW. You may want to confirm their perspective on TSW before booking an appointment.<\/p>\n<p>ITSAN\u2019s list of member recommended TSWS supportive doctors is located in the Facebook group: ITSAN Topical Steroid Withdrawal Syndrome Support Group &#8211; Private Group<\/p>\n<p><a href=\"https:\/\/www.facebook.com\/groups\/ITSANSupport\/\">https:\/\/www.facebook.com\/groups\/ITSANSupport\/<\/a><\/p>\n<\/div><\/section><\/div>\n","protected":false},"excerpt":{"rendered":"<p>At 4 months TSW, Sam describes his experience and what has helped him the most. He shares an update on his health at 9 months TSW.<\/p>\n","protected":false},"author":1,"featured_media":6042,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"footnotes":""},"categories":[5],"tags":[],"class_list":["post-6041","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog"],"_links":{"self":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts\/6041","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/comments?post=6041"}],"version-history":[{"count":5,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts\/6041\/revisions"}],"predecessor-version":[{"id":6056,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/posts\/6041\/revisions\/6056"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/media\/6042"}],"wp:attachment":[{"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/media?parent=6041"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/categories?post=6041"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.itsan.org\/us\/wp-json\/wp\/v2\/tags?post=6041"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}