Moisturizer withdrawal: day 13

Tomorrow will mark 2 weeks of no moisturizer! When I went into it, there was no doubt in my mind that it was the right thing to do. It just makes sense that applying moisturizer will delay healing because 1 you're weakening the skin barrier and 2 if you're using over the counter lotions, you're also adding a bunch of chemicals to your already unhealthy skin. But a few days ago I wondered if maybe I was a rare case that would not benefit from "nomo"...I had the most intense pain in my worst area, my neck, for about 3 days. It was excruciating. I felt so low, I just wanted to give up and succumb to the desire to put some jojoba or coconut oil on my neck just so it would soften up a bit. I mean, how could it possibly heal if every time it dried out, I itched it right off?! Well, I'm glad I didn't!!! I realize now that I must have been flaring at the same time as stopping moisturizing. Last night was the first night in over a month that I slept the entire night. And without an itch attack!!! Hooray!!! If you're thinking about doing it or having a hard time as you do, please just give it some time. Last night could be a fluke so I will report tomorrow but it really seems as if my skin is stronger now. I'm really hoping that it just gets better from here! I know according to research that each subsequent flare during TSW is supposed to be not as bad as the prior one. For me, the second one was much worse than the first. Hopefully they get easier from here on out since I've stopped moisturizing. Will post pictures later. Happy healing!!

Moisturizer Withdrawal: Day 9

Today marks day 9 without moisturizer and I am feeling myself beginning to waver. I know logically that it is the best thing to do. Most of my body has responded well to it: less red & itching everywhere except my worst places. But my neck, as you'll see below, just doesn't want to heal. Every single night, I suffer from insomnia and rip off any skin that has regrown. I feel like im being swallowed by despair. It is so difficult to live every day in such extreme pain and discomfort. I just want to see the light at the end of the tunnel. 

My neck, obviously. After an itch attack.

You would think that the pain would deter me from scratching. I wish!! I know this post is quite negative but that's how I'm feeling and I'm sure others have felt the same way at some point. Why make TSW look easy when it most certainly is not?! It makes me so angry that these doctors prescribe these drugs blindly without acknowledging the potential danger they can cause. And to think that little kids are suffering through this same thing...I dont know what I'd do if I had to watch my baby go through this.

Okay, so I feel a little better after this rant! Who knew blogging could be therapeutic??

Moisturizer withdrawal day 5 - pictures!!

Here are some pics of the last few days...

This is just a few hours after stopping moisturizing...

This was my face on day 1 (after first night)

 
Day 2


Day 2


Day 3

I'm definitely drying out and less red but still very uncomfortable. For some reason, it doesn't let me access photos from today or yesterday so though I'm on day 5/6, I can only post pics up to day 3.

I had a crazy itch attack last night, as I do every night... Scratched my neck RAW. Couldn't fall asleep until 7am and even then only slept 4 hours, waking up every hour during. It's really starting to wear on me. My skin always gets worse with my period, which is about to come, so I'm blaming it on that. Hopefully once that's passed I will notice some healing. I will say that the pain of drying out after a bath is lessening so that's good! The first few days, I would cry the hour or so out of the bath because it was unbearable. Now an ice pack keeps me comfortable enough. The night times are the worst and I don't look forward to them. Tonight, after putting the baby to sleep, I'm going to take a sleeping pill and see if I can get some sleep in the early hours of the evening. It probably won't work but neither is what I'm doing now so it's worth a shot. Last night I took 2 Atarax and 4 sleeping pills. It's driving me crazy!!! I just want to sleep AT NIGHT and be able to wake up with my baby again. I'm so fortunate my husband works from home and has been able to be so helpful during this time. I'm gonna owe him BIG TIME once this is all over!!!

Moisturizer withdrawal: night 1

In my last post I said I was planning to do it in a few weeks. Well things have changed! This past week of partial MW has been brutal. I can't tell if I'm flaring bc I drank this past weekend or if my skin is reacting to the elimination of cerave & aquaphor (among other things). I've only used coconut oil and neosporin but have noticed that I'm basically withdrawing each time anyway because I let my skin get really dry, tight and painful before reapplying. At which point I scratch all the newly moisturized skin off and then it oozes, which is the worst. So what's the point?! I titled this post "night 1" instead of "day 1" because I already used coconut oil and neosporin today. It's been about 7 hours since my last application and already I'm feeling it. My hands and arms have a painful tingling that feels like it's coming directly from the nerve while my neck and face are just burning, tight, and all around painful. I've been sitting on my hands to relieve some of the pain and icing my neck/face as necessary. It's 11:30pm here and I'm not looking forward to the night ahead. I've been averaging a 5-6am fall asleep time. Not by choice, of course. I take my Atarax & unisom but they do nothing for me at this point.

I think last night was the final straw. Yesterday I had convinced myself to stop torturing myself and just put on the lotion to have some mobility. I rationalized this in my head by saying that I was going to do the moisturizer withdrawal soon anyway so may as well be comfortable in the meantime. Well I now realize that moisturizing does not in fact make me any more comfortable. I end up itching off any skin I had built up by letting my skin dry out. That resulted in me oozing uncontrollably for hours. I don't know about anyone else but for me, oozing is the absolute worst. I was sticking to my sheets and comforter, cursing myself for being so stupid. I ended up putting a towel over my pillow and an ice pack on the bare skin but then woke with lint from the towel in all my wounds. Cleaning that off was fun. So if I'm going to torture myself this way, I may as well do it for a positive outcome! And so here we are. Night 1. If you are a praying person, please send a prayer my way. I will certainly need it.

This was just a few hours after my last moisturizer application!

Moisturizer withdrawal?

This is a hot topic within our little community. I haven't done it yet but am convinced it is beneficial to those suffering from TSW. I've set my date for MW to be on March 13, about 2.5 weeks from now. Due to having a toddler at home and a wonderful husband who travels often for work, we had to pick a date which would leave him available to take care of our son during the first few wretched days. In the meantime, I'm trying to lessen the amount of moisturizer I use in a day anyway because I notice the more I use, the more I itch and feel hot. So far, I've only used coconut oil after a shower or bath, jojoba oil before my afternoon nap and neosporin right before I eat to get some mobility of my face and neck. Based on my experience so far, I have an idea of what the withdrawal will be like. One word: ouch! My biggest concern is the itch that comes with the extreme dryness. I'd love to hear your experience if you've already been through MW! Do you have any home remedies that worked for you?

My first post!

Let me start out by saying that I am not a blogger. I just want to document my experience with topical steroid withdrawal, or TSW, in hopes that one day I will look back and see that I actually have made progress. And if I help anyone else along the way, great!

My story:

I was born with eczema. At 4 months old was when my mom first started applying topical steroids every now and then for little flares and nothing too strong. She was just following doctors orders as any concerned mother would. At 8 years old, my skin took a turn for the worst and I started using the creams regularly. For years after that, I would use them daily for months at a time (they are recommended for only 2 weeks at a time). There would be months that my skin was relatively clear and I didn't use the creams but never did the eczema ever fully go away. Fast forward 20 years and here we are. It was December 24, 2013 when I applied my last bit of ointment. It was by chance, really, that I stopped. I just happened to run out. By the end of that day, my skin was on fire.

I had just started to see a functional medicine doctor in hopes of curing my eczema. See, I felt I had tried everything with little to no success. The steroid creams had stopped working years ago and the only solution given to me by dermatologists for my worsening eczema were stronger steroid creams. So I used them because I didn't know any better. Well when I got pregnant, I inadvertently started withdrawing without meaning too as well. This one dermatologist said the only thing I could do was get a steroid shot and no, it wouldn't hurt the baby. It was safer than the topical creams! Ya, whatever. I also did narrowband UVB tanning at another dermatologist, bleach baths per an allergist, got expensive food intolerance tests, followed a strict and limited diet, all to no avail. So mid December, I meet with my functional medicine dr - she introduces me to a paleo diet while ordering a bunch of tests and advising to ditch the steroid creams. (In my head, like a true addict, I thought I would get rid of them when my current tube ran out. Why waste, right? Never mind that I had probably 5-10 old tubes laying around the house.)  When the test results came back, they showed that I was in stage 3 adrenal exhaustion (no wonder I'm always so tired!!!), borderline hashimotos (my immune system is essentially attacking my thyroid), and hypoglycemic (my blood sugar's messed up). We are waiting on a new test to see whether I have candida and parasites. Fun! Will touch on all this stuff later though. 

It's been just about 2 months since I started withdrawing. I didn't know about TSW until one day while googling away about my skin I stumbled on a picture of a girl whose skin looked just like mine. Her blog led to me itsan.org and thank God because I thought I was alone in this. It's comforting to know that, in fact, I am not the only one to have suffered through this!! Alas, there are accounts of those who have been cured! I can't wait to be one of those people. Until then, I will also account for my experience and try everything in my power to get through this.