[special post] what to expect when you’re expecting

no no no i’m not pregnant! just thought it’d be funny to use that as the title.
this entry is meant to tell you what to expect during the course of TSW,
hopefully to prep those who just started on the journey, or are contemplating to embark on the journey.
i think i’ve mentioned this before, when i’ve decided to stop steroids for good, i never expected TSW to be THIS tortuous.
the paper written by dr rap was informative, but it wasn’t super detailed.
(on hindsight, perhaps it was a good idea to leave out the most gruesome symptoms so as to not scare those who are preparing to quit steroids.)
so this is my version and overview of what shit i’ve been through, and what you MIGHT go through.
i say “might” because everyone is different fundamentally, you may or may not have the same symptoms as me.

the warm up trek (month 1-4)

turning red and swelling up

one of the first symptoms that was out of the blue was the swelling of the face and legs. the spreading of the rashes were thought to be a case of my worsening eczema. the redness start to spread out all over my skin and soon i’m shedding like a snake. i felt miserable because i’ve always felt confident about my appearance, but now i look like i’m constantly sun burnt. very soon, my whole body was swollen (to a certain extent)

dry skin

dry skin was an issue. they were so dry they can’t stretch properly. cracking was very normal. feels like having a thousand paper cuts.

temperature dysregulation

temperature dysregulation was a big issue for me. singapore is sunny all year round, and under the 30 degrees celcius heat, i’m clad in a sweater and long pants but i do not perspire. when i’m in an air conditioned room, i will start to shiver despite my skin feeling really warm.

i think the correct description of how i felt was.. FEVERISH. i feel feverish ALL THE TIME! it doesn’t feel good at all.

insomnia

started to lose sleep at night. sometimes i’ll get really tired in the morning though. i guess it has something to do with the cortisol levels in my body, but it’s just a speculation, since i can’t really determine and keep track of what’s going on inside my body.

minimal oozing

there were some oozing, especially when my skin touches each other (such as my tummy folds, behind of my leg, and the inside of my arm). they dry upon contact with air, so i just have to make sure i sit up straight and spread my arms and legs. my legs however, oozed a little more than the body.

sore and swollen finger joints

is this arthritis!? it could be. i still haven’t find out what and why my joints on my fingers are swollen back then. they hurt a hell lot too, i feel like an old lady. good news is, they no longer hurt today. BUT i think my joints have been deformed (just a little) permanently. i used to have straight and slim fingers, now the joints are significantly wider than my finger. but it’s okay! i’m not some sort of hand model so it’s ok to not have long and slender fingers~ (self consoling statement)

hair loss

i think mothers would have experienced this. hair falling out everytime you brush your hand through your tress. a rough estimate of the amount of hair i lost – one quarter of my original hair volume. it did stop for a while towards the end of the 4 months. my eyebrows that has thinned a little also grew back.

loss of sebum and perspiration

i’m quite sure it has got something to do with the dry skin. i won’t say the loss of sebum caused the dry skin. rather, something caused the dry skin and shut down my sebum factories. my scalp was so dry, there are skin flakes falling off my hair. i start to miss my oils. back then i find them to be stinky, but i’m totally embracing it now. perspiration operation ceased to a zero. i’m quite glad to be honest, i can’t imagine how bad the sweat will irritated my skin.

the amazingly gently sloped downhill (month 5-10)

“bloody wounds”

gotta mention this first, because this little bugger is one of the most inconvenient things throughout the whole TSW. i call it the “bloody wound” not because it’s bloody, but because it’s bloody irritating. if i were to describe it, it’s more like an oozing wound. it looks like a wound that is infected (but it isn’t). it just keeps oozing a clear yellow fluid and it is bloody annoying because it stains my clothes, bed sheet and whatsoever that comes into contact with it. for many months i had to sleep with cotton pad stuck onto my body so that it would soak up the ooze. i also have to limit my position when i sleep so as to prevent staining the bed sheet.

something worth noting. it forms alot of vesicles underneath the skin. these wounds takes several months to heal. throughout the healing process, they will ooze, scab and peel and the process repeats. i gotta say i enjoy peeling off the scab and it was one of my entertainment during TSW. (thumbs up if you have itchy fingers like me)

the wounds were spread throughout parts of my body. my scalp had it, my face, my left shoulder, my right elbow, my right knee, my ankles, my foot, EVEN MY SOLE!

those days were plain miserable.

insomnia

it’s an on going issue since the beginning, nothing much has changed. just that i was living in the united states time zone during this time. it means i’m sleeping during day time in singapore, and awake throughout the night.

voracious appetite and weight loss

for once i can eat like i’m dying tomorrow. if you are health conscious, please don’t do what i did. i was hungry 24/7, during my waking hours. i ate everything in sight – cake rolls, biscuits (my favourite is mcvities), bread, 2 servings of rice every meal, fruits, every thing i can find at home, i eat them ALL UP. funny thing is, i kept losing weight despite the high calorie diet i was taking. something must be wrong with my metabolism.

hair loss

again!!! lost another quarter out of the remaining hair that i have. never been sadder, because i already had thin and flat hair to begin with. now it’s only getting thinner and flatter.

loss of sebum

the oils did come back for a while after the first 4 months, but they didn’t stay for long. ๐Ÿ˜ฆ

temperature dysregulation

i perspired a little during my 5th month, but it only lasted for about 2 weeks. after that my body was feverish again, and it marks the beginning of a no perspiration life for me.

“rotting” fingers

i’m sure you’ve seen some of the photos before, my finger will be so swollen and inflammed, it oozes and peels. even my nail growth is affected by the inflammation. at one point in time there were ridges and grooves in my nails. not only that, my nails grows out to be yellow. i think some people with psoriasis on their hands might have experienced this (not due to TSW).

to be honest, i don’t feel like any of the symptoms i’ve experienced in the first few months has stopped during this period of time. therefore, you can assume that things have only gotten worse all over my body. i can’t really recall every bit by now, but yea, things only got worse.

random joint pains

is this what arthritis feel like? i remember my finger joint hurting quite alot. along with many other random places too.

HUGE lymph nodes

i thought i had beans in my body. i can feel the lymph nodes very prominently. no amount of lymph massage helps.

the plateau which is actually yet another gentle upward slope, but too gentle to be detected as a slope. (month 10-20)

“bloody wounds”
things becomes a little different. the wounds will now scab every few days. that means it’s not oozing everyday anymore, perhaps only for the first day after the scab has “fallen off” (actually, i peeled them off. i can’t stop myself from doing so!!!). at least i know the skin is growing out.. my face was oozing yellow fluid, i wake up with yellow crystals on my face every morning. if only they were gold…

red and dry skin
skin throughout my body is dry and red. it feels slightly different from the first stage though. during the first stage, the dry skin is very superficial – white flakes coming off to reveal brand new skin everyday.. but now, the dry skin seems more deepset. i can see lines on my skin, if not, elephant skin. the skin is thick and rough. clear fluid will seep through my skin if i scratch it. on my hands where the inflammation is worse, the fluid is yellow.

“rotting” fingers
they take turns to “rot”. that’s all i can say.

hair loss
it’s an on going thing. hair is 1/3 the original volume by now. eyebrows are either broken or they fell out. eye lashes are growing strong though! but it doesn’t really matter.

the following might be TMI, but i think it’s significant to mention. my body hair and pubic hair became super fine during this period of time. i guess the hormones affected the hair follicles, it sort of make it go back to its pre-puberty stage. but it’s just my guess. it could be due to the swollen skin pushing and shrinking the hair follicles. i don’t know! it is also super easy to pull hair off my arm.

the attack of the sweat glands
it wasn’t pleasant. it seems like it’s in an overdrive or something like that. after i shower, i must dedicate at least an hour to cool off (i can’t shower in cold water because i just can’t tolerate it. i shower in warm water.), otherwise i’ll heat up and get into a sweaty and itchy mess. heat attacks can go on for half an hour and it is tormenting. it doesn’t help even if i sit right infront of my fan. i’ll just be scratching like a monkey.

moles…?
i have alot of black spots popping up all over me. tried to find a reason for it, so.. i guess the constant scratching irritated my melonocytes..?

abnormal heart rate
i just got reminded about this one. i can’t remember when it started, but i first noticed it during this phase of my healing. my heartbeat would be about 120 per minute when i’m sitting down. it freaks me out, got me worrying if my blood vessels will be damaged due to the increased pressure. also afraid that my heart will be working overtime pumping faster than normal. i thought too much eventually. it went away on it’s own in the next phase.

joint pain

it got a little bit more serious during this period of time. i remember my hip muscle/nerve was somewhat affected. i had to do so much stretching that targets the piriformis syndrome to seek temporal relief. there was also a pain in my right wrist, i thought it’s because i used my phone too much. turns not it’s not really related.

numbness in limbs

it happens when i sleep. i wasn’t even sleeping on my arm! it could be placed above my head and the next morning it’d be lifeless. i suppose the way my swollen skin folded had inhibited blood flow somehow. my entire leg will feel numb very easily too..

“good morning, hand. can you please wake up?”

the uphill (month 21 onwards)

red and dry skin
they have changed form again! skin is much more calmer than before, but there are still patches of redness. some of the fair and normal skin is coming back, albeit slowly. skin fall isn’t as scary as it used to be, but there is still a significant amount of dead skin cells every day. skin is generally smoother than before. elasticity has improved. i can skip my morning showers!

my red patches are very wide spread, they are places that used to have eczema rashes. actually, what i have right now sort of resembles my initial eczema. what i’m saying is, yes, this is eczema (based on the definition of skin being inflammed), but the cause of the eczema is the TSW.

sweat like you never before!
i always thought i was blessed to not perspire too much in the singapore weather.. looks like i was wrong, at least for now. i’ve never seen my sweat glands so active before. i no longer getting into heat attacks, but i can sweat profusely off my scalp and face. must have a packet of good quality tissue.

“bloody wounds”
all of them have healed by now, albeit not completely. most of them are very mild, you can’t see them from the surface but you know there’s something going on underneath the skin because it still shed every day. it’s perfectly fine with me, as long as there’re no ooze!

hives
this is something new. i guess the skin is still very sensitive. it goes away after a while!

small white vesicules
ON MY FACE. at first i thought i was reacting to the sunscreen i was wearing, turns out it’s not. it’s just part of the healing process. tried squeezing it thinking it was a white head, but it’s just some white fluid. squeezing it doesn’t help. i have since learnt my lesson!

swelling
the edema at the beginning did get much better, but i’m still more swollen than before TSW. that’s right, even when i’m 2 years into the journey. i thought i gained fats, but i suspect it’s a mixture of fats and subcutaneous fluids. drinking tea doesn’t help to purge those fluids, dr rap did mention in his papers that edema is expected. i didn’t expect it to stay for this long. oh man. got to assure myself that a puffy face can make me look more youthful since it’s not sagging. gotta be positive..!

bean like lymph node, joint pain and numbness in limbs

things did get better by now, but it’s still present. eventually they all disappeared though.

———————————-
first edit: ok, i just want to roll out this entry ASAP, so alot of the things are not exhaustive. i’ll update again when i recall more things.

second edit (190813): i’ve added symptoms like.. swollen lymph node, joint pain, and numbness in limbs.

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38 thoughts on “[special post] what to expect when you’re expecting

  1. Hey Juliana.
    My name is Cory. I’m 39 years old, live in Thunder Bay, Onatrio (Canada) and have been steroid free for 203 days. Used them all my life, so as you can imagine, I still have a long way to go. At least the worst is behind me. I’m not laying in bed with ice packs anymore. In fact I’m sleeping almost normal now, which is the most important thing. I just want to thank you for all of your work you have put into this diary. I have been a long time follower of your story and have read it, along with others blogs when I wanted information, or just needed some motivation. Knowing what others are going through makes it so much easier to cope. I especially want to thank you for keeping up with for so long. It would be easy to leave this behind you when life started to get back to normal for you. God knows, no one could blame you for wanting to run from the horrors you experienced, let alone relive them here. I think it’s so important for early sufferes to be able to follow someone right through to the end of this long horrible road, so they can actually witness that it will end. God bless to you and all of our fellow sufferers.

    • hi Cory, thanks for showing me your appreciation. it motivates me to write! when I was in my early TSW days I felt very lost and hopeless as there wasn’t enough first hand accounts available. I want to be able to relief that hopelessness from new warriors! 203 days is a lot, you will only get better from here! have faith and persevere on. nothing is permanent even though the immediate pain feels like forever.

      god bless you too!

  2. Thanks for posting all these great info. Your blog is a huge encouragement. Bloody wounds are just spot on, with the description. ๐Ÿ™‚

  3. thanks for posting this! it’s a great reference for those of us starting TSW. i am just entering month 2 and bracing myself for the worst to come.

    Megan

  4. Juliana, Thank you for your diary it is much needed. i am 3 weeks into my tsw and am very discouraged. I have been straight non-stop swelling in the lower legs and ankles, shedding skin, red swollen face and eye lids with junk crusted in my eyes every morning. Oozing around my neckk like crazy at night and freezing in 90 degree weather. My hair is falling out which scares me as I already go through this once a year and again get steroid shots in my head to get my hair back but it looks like that won’t be happening now. I used steroids topical, injectable and oral since I was 2 years old and I am now 45. My biggest concern is in the 4 month phase do you get any break in any of it at all? I can’t imagine going through all these symtoms for 4 months daily. Is there any break at all? I just hope I can continue this journey, it is so debilitating.

    Michelle

    • hi Michelle, welcome abroad the TSW family (although I wish you didn’t have to go through this at all). I’m glad to be able to offer some insights ๐Ÿ™‚

      4 month phase.. did you mean my first flare? well.. I don’t get any breaks within that. things will be bad consistently for a long time, healing is slow but steady. you will only be able to notice significant healing after some time, that’s why you will feel that there are no breaks.

      not trying to discourage you, but different people have different flare durations. but at least you know what to expect now..! in the Itsan forum, you will meet people who have used steroids as long as you did, I think Joey used just as long.. she is healed now already!

      have faith. the point of me writing this entry isn’t to intimidate all the new TSW warriors. I want to prepare you all for what is about to come. it’s like knowing your enemies ๐Ÿ™‚ if you can manage to accept what will happen, at least you won’t feel lost and unsettled when certain symptoms that are new to you appears. I kept questioning if I had TSW back then because there wasn’t a reference I can relate to. but now, you all can refer to my experience and gain assurance!

      stay strong. take things one day at a time. do not think about how are you going to manage it yet, because you naturally will be able to when the time comes. god does not give us something we can’t handle. he knows we can do it. ๐Ÿ˜‰

      god bless and stay strong.

      xoxo

  5. Hello Juliana,

    Thank you for being so descriptive of your condition. I am going through TSW myself, entering month 14. I just started my 3rd flare after 3 months of nice healthy tanned skin. so shocking that this can happen when the skin is perfectly clear and healthy ( just a patch of dried on my aerolas) but now back oozing 24/7 yellow fluid ๐Ÿ˜ฆ

    2 days ago, chills came back and also “arthritis” pain on my right arm that kept me awake all night.
    This final flare which I like to assume, giving me intense nightmares which I never had them in the past. Anyways i love your blog, so thorough and you are such a good writer (envy)

    Thank you so much for sharing!
    xoxo
    FLoui

    • hello there florina!

      sorry to hear about your 3rd flare, i hope i won’t have any 3rd flares coming :/ do you mind telling me if your 3rd flare is limited your areolas (as in, are the other parts of your skin turning red and dry?)? sometimes i do get the “arthritis” pain in some of my joints but my skin is still fine. also, some parts of my skin are still going through cycles, they still ooze but not as bad as they used to. just very limited areas though!

      i hope your flare ends soon, oozing wounds usually take a while but they do die out eventually. don’t let this bring you down okay?

      lastly, thanks for the compliment on my writing! it’s rare to hear people telling me i write well because i never thought that highly of my writing. thank you for making my day sweetie ๐Ÿ™‚

      i love to share, you are most welcome ๐Ÿ˜‰
      xoxo

  6. thanks for the wealth of info! my skin started itching during the heavy Sumatran haze in SG few months back, went to a GP 2 months ago and was given hydrocortisone, used it and the itch got better but after a while it recurred. so went to a polyclinic and was given betamethasone, used it and got better but the itch came back again, and the raw parts of the skin that I scratched never healed during this period. it was a bad mistake to continue applying the topical steroids. used them for a total of about a month and decided to stop, kinda freaked out when the itchy rash returned so strongly so quickly, with all that snowy flaking and stinky weeping. i thought my original eczema became so bad and infected with staph, only after stumbling across few blogs like yours that i realised this is TSW. I’m about a month in my cold turkey, legs are itchy and flaking, arms are weeping and have to be padded with cotton when i go to work everyday, parts of my back (where i didn’t put the cream) are weeping. my tummy folds were weeping too when the folds came into contact. really hope my flares will clear up soon enough since i don’t have a long history of steroid usage. this physical and mental torture definitely doesn’t go well with the stressful demands of work. how i wish i never started using it. thanks for sharing your battle of living without steroids!

  7. Hi Juliana, I’m so glad you were able to recover and that all this worked for you!

    I’m in a week and half into tsw, and it’s going horrible. I also still have school right now, but I’m off this week so I’m feeling okay. I’ll have to go to school next week and I have 2 months left. My mom suggested for me to try it after I was done school and my exams, but I really just want to do it now after doing a countless amount of research and learning about the negative effects of these steroid creams. I’ve used them for my entire life, and I don’t think I could get the courage to put some cream on my face. However, after waking up today with a very, very red face and very bad swelling on the upper and lower eyelids. I also feel a burning sensation on the face. But I had been feeling this for the past 3-4 days now, it only seems very, very bad today with the swelling and all. Not even being able to open my eyes properly, and just feeling horrible.

    I was just wondering, how did you deal with all the swelling especially swelling around the eyes, and just the whole face? I’ve been only having a rough time on my face and a bit on my neck for now, that’s all. Thanks.

    • hello gurkeerat! sorry to hear about your situation. the good news is facial swelling goes down relatively quickly. I don’t really know of tested ways to reduce swelling since my facial swelling never lasted long enough for me to deal with it, but you might want to try cold compresses, since it restricts the blood vessels and tissues. but I’m not sure if it will work or not since I never personally try that out, I remember seeing it in dr rap’s paper.

      I hope you feel better soon! god bless and take care!

  8. Hi Juliana,

    Thank you very much for writing such a detailed account of your TSW journey! Your story gives me hope and motivation!

    I am currently 2 months into TSW. Regarding the bloody wounds, did you ever get blood mixed with the yellow ooze/crust coming out? especially at the beginning of the withdrawal?

    Cheers!
    Yipa

    • hey yipa!

      thanks for the heads up!

      as for the bloody wounds, i don’t really have much blood mixed in with the crust unless i purposely pick the skin off. if i keep my hands to myself it’s mainly just ooze.

  9. Hi Juliana,
    I’m blessed to have found your blog. I’ve used steriod cream off and on for the past 3 years. I stopped and now I’m a week into dealing with TSW. The worse is on my face. Red swollen crusty cheeks, swollen face and loosing my hair. The ozzing from my cheeks have stopped. It looks like it’s going to heal. I’m glad you mentioned that because I did notice my hair was getting very thin and I don’t have the oils in my scalp. It didn’t realize it’s related to TSW. I look totally different. I had to take days off from work. I’m not sure how I’m going to be able to go to work with a swollen face. I hope it goes down quickly. Thanks for the encouragement because I truly do need it.
    Blessings!
    Mary

    • hello mary! thanks for dropping a comment! i’m glad you’ve found some answers to your situation. the hair will grow back, don’t worry about that! ๐Ÿ˜€

      it may be difficult to face the world with a swollen face, but i’m sure people don’t judge. if they ask, it’s all out of concern. but yea, given a choice i’d just hide home and cry all day. haha! i hope your facial swelling go down quickly too. my initial swell went down within 2 weeks or less.

      good luck!
      xoxo
      juliana

  10. Hi Juliana!

    I’m glad I found your blog! I have eczema since the day I was born. It stopped during my childhood days but it came back in secondary school & that’s when I started using steroids to treat it. I’m going into my 3rd month of TSW & it’s craaaaaazy! I’m glad that I found a fellow Singaporean that has experienced TSW! The net was full of TSW sufferers from the other side of the world and I thought I was the only one from Sg that has TSW (Call me crazy but yeahh, hahahaha). I really can’t wait to fully heal from TSW.

    I just want to ask, how do you cope with TSW since the weather in Sg can get really crazy? I can’t seem to step out of the house cause it’s scorching hot which causes my rashes to get really itchy! It scares me because I’m going to start work soon ๐Ÿ˜ฆ

    xx

    • hello wafa! there’re a lot more coming from SG! you’re not alone!

      hmm, when it comes to coping with the weather.. i tried my best to limit my activity, and i sit in front of the fan to cool myself down. since there’s no way to cool down the temperature, i can only try my best to not overheat. i’m sorry to hear about you having to work soon, the singapore heat lately may make you feel very uncomfortable. you either invest in a really good portable fan, or carry an ice pack with you at all times to cool down any itchy areas..!

  11. Did you have scar after picking the dried ooze or the golden crust from your face? Now i can’t stop picking the crust from my face and i’m afraid it will leave scar behind.

  12. Hi Juliana !

    I’ve noticed too that I’ve been getting those brown spots all over my body which looks sort of like freckles. Have yours managed to go away?

  13. Pingback: [brain fart] how to be happy when you’re in deep shit | juliana's topical steroid withdrawal journey

    • hello R! my body hair.. when my skin was good, they’re fine and long. :/ i’m not sure if that’s a long term side effect of using topical steroids. now my skin is irritated, dry and itchy again, my body hair looks crooked and bent, if that makes any sense! still long and fine though, just a lot of them got broken.

  14. Hello Juliana, thank you so much for writing. Your blog has been my source of encouragement during these TSW insomnia nights. I’m a month in and my face looks different week by week and sometimes day by day. I’m doing allergenix laser treatments to calm down my skin and it helps significantly. The only thing I can’t seem to handle yet is a weird electric stabbing pain that radiates across my face every so often. Did you experience that?
    Seeing your after photos of your smiling happy skin face inspired me to quit steroids. I used to have my asthma kick in after an eczema flare up while using topical steroids. Strangely enough, I’m breathing fine and don’t plan to return to asthma meds (they contain steroids)
    Thank you again for being an inspiration!!!

    • hello!

      i don’t remember feeling an electric stabbing pain. do you think it could be related to the laser?

      ahh! you have asthma!? so glad you’re not having any asthma episodes right now!!

      i’m very glad to be able to be your source of inspiration and encouragement ๐Ÿ™‚ it’s what i aim to do! i hope your skin continues to improve over time! stay strong! you’re already 1 month in, so it’s one month down!

      good luck!

  15. I stop steroid 5% irritation cream for 1 month but myskin become red, itching what should i do? How to reduce the red skin and itchy? Please answere

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