INTERVIEW WITH TSW WARRIOR SAM
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.
How did your health condition begin?
I 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’t sweat, the hair under my arms fell out, I couldn’t 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.
How did you discover what you were going through?
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’d 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’t 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.
I said to hell with the creams and I’ll probably have to move my life to somewhere hot and sunny. That’s when Fay found the thread on Reddit which mentioned TSW after googling ‘why steroid creams don’t work’. We then found a YouTube video of someone explaining their TSW experience. As I watched that ten minute video, every single thing I’d gone through was checked off one by one. I broke down in tears and realised that I had TSW.
How long did you use topical steroids?
4 years.
What steroids did you use?
Fucicort/Fucibet. Prednisolone. There were a couple of other creams I tried but I can’t recall.
And Protopic (nonsteroidal/immunomodulator)
When did you stop using topical steroids (month/year)?
February 2021
How long was your withdrawal from topical steroids?
Coming up to 4 months now. Still ongoing.
Why did you start using topical steroids?
Prescribed treatment for eczema
Why did you stop using topical steroids?
Stopped working/found out about TSW.
The worst TSW symptoms you experienced?
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.
That was really bad. In those weeks I couldn’t 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’s 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’t want to die, but I wanted the suffering to stop. It was the darkest point of my life.
All the oozing, pain, blood and tears that followed those weeks were manageable compared to that time in hell.
What treatments have you tried? What worked/what didn’t work?
I tried a lot. As people with TSW will tell you, sometimes one thing works for a moment, then the next week it doesn’t. And everyone has different sensitivities. But alas if I had to say what consistently worked for me:
Getting my mental health stable – Gratitude practice (writing down what I was thankful for each day), meditation, breath work, reminding myself of my body’s capabilities to heal itself.
Routines around bedtime and waking up.
When my skin was at its most painful and sleep was hard in all those bandages etc (the first few weeks) I’d 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.
I kept my immune system healthy with supplements – All the vitamins especially D – 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.
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.
Bandages! Changing the sheets. Bamboo sheets and clothing.
When I could walk (I’m 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’t get out everyday, and most days I didn’t 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.
What didn’t work…Geez a lot didn’t 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).
THC – 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’t put toxins in the body – it is dealing with enough. Don’t eat too many processed foods if you can for the same reasons it is extra work for the body.
Now that my body is stronger (and we are out of lockdown) I’m going to try many different treatments. I have scheduled hyperbaric chamber therapy, infrared saunas, integrated healing and lots of other treatments.
What kind of help during TSW do you wish from the medical community?
Any kind of help. I couldn’t 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.
My own dermatologist didn’t 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.
Apart from that through the NHS – nothing. They just want to refer you to a dermatologist. I went to a private doctor who googled TSW and told me to moisturise.
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’t have the energy.
The biggest help to me came from information I gathered from fellow TSW warriors and the community. Whose advice was usually spot on.
How are you doing today and what interests do you pursue in your free time?
Today, I’m better than I was yesterday and better than I was a month ago. And although sometimes it’s two steps forward one step back, I’m moving in the right direction. Now that I’m stronger I started playing football again and going for long walks. As I said I’m 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.
Read more below for an update from Sam.
November 2021 – How are you doing now at 9 months TSW?
The last 5 months have been pretty tough. I have left my job and therefore had to move out of London. I couldn’t guarantee when I could work – what with the flare ups and so left by mutual consent. It’s 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.
I went to see a ‘top’ 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.
It would be foolish of me to recommend that anyone ignore professional health advice. So I’ll try to use my words carefully. Your body wants to reach homeostasis, listen to it. If you can’t 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.
I tried many different treatments over the summer – light therapy, saunas, cold therapy, hyperbaric chamber. The list goes on and on. Some things worked some of the time and then didn’t. Overall I wouldn’t feel confident, or comfortable recommending one thing or another. Try anything you want. Listen to your body. Don’t get too disheartened by the healing process. Stay strong in the mind and the body will follow.
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.
My wife, Fay, (we got married in July) has been my saviour. My carer. My rock throughout all this. I wouldn’t be here if it wasn’t for her. She gives me a reason to live and to keep fighting.
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.
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 ’skin’ condition has been a massive test. Also a massive stress. Which doesn’t help the skin. We have a cat who we’ve brought with us. TSW has affected the lives of everyone around me. I feel sad sometimes that I’ve burdened people with my issue. But mostly I’m so grateful for the support of my circle. I’m so lucky to be able to leave a life in London behind and live in Athens. I know a lot of people who don’t have the support system, or the options I have.
We’ve been here now for nearly 3 weeks and my skin is going through some massive changes. I’m swimming in the sea which is very painful, but seems to be helping my skin heal. I have a renewed focus for healing. I’m here to get better. I feel stronger. More at peace with TSW.
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’s stories. https://www.youtube.com/channel/UCrjPoh9qPBswHUqmcTMq1lQ/videos
*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 “supportive” by members of ITSAN support groups. This usually means supporting your wishes to use a ‘no steroid’ approach, and does not always mean they are familiar with TSW. You may want to confirm their perspective on TSW before booking an appointment.
ITSAN’s list of member recommended TSWS supportive doctors is located in the Facebook group: ITSAN Topical Steroid Withdrawal Syndrome Support Group – Private Group
