I've been taking vitamin d3 capsules, 5000 i.u. daily.
I've had a bad flare this week, but I don't think it has anything to do with the vitamin D. Realistically, I think I have to get a few more weeks supplementation under my belt before I start seeing any benefits. I'm still staying positive!
So I thought I'd share some photos, but they are bit depressing.
I took this face one in the same place as last week, so you can judge if there is any difference.
My neck is all flaky. The skin is wet and then it flakes off and the skin underneath is exposed too early, so the whole cycle repeats. The oozing is bad at night. I cant turn my neck, as it dries tight.
This is the crook of my left arm. It's all red and wet. Ideally, I'd keep it poker-straight and let it air-dry, but who can do that?
So now I am over 38 months into TSW. I could do with a break here. Ive been flaring since the end of December. Come on sunshine. Come and heal my broken skin.
16 comments:
What is your diet like?
I'm currently trying to lose weight, so I'm on a low calorie, healthy diet, with plenty of good stuff and no junk.
I don't personally believe that there is any connection between flares and diet unless an actual allergy is involved. I have seen some people say that they definitely flare after eating certain foods and believe that can be the case with some people, but I've never noticed a connection between food and flares myself.
I've followed the ITSAN forum since the beginning and members on there have tried everything from no-sugar diets, elimination diets, high protein, paleo, GAPS...nothing has seemed to help with their TSW, although a good healthy diet is the bedrock of good wellbeing and long term health,
I have flared every winter since I started TSW and healed every summer, so for me, there is a stronger link between climate and flares than diet and flares.
This is my personal experience and I'm not suggesting that it would be the same for everyone else.
Hi Louise,
how are you? I have been following your blog since I started TSW (can't remember if I ever left a comment)
I am now 19th months in, been feeling well in the past 6 months and even travelled a bit. All out of a sudden my neck and face and eyes got into a flare. Just like yours. I know how you feel, it's just so daunting after such a long journey. Please hang in there. We need to beat this beast!
p.s. have you heard of anyone has problem with their ears? So far my right side of the body is in flare, yes, right side. My right eye flared up, neck on the right side weeping, and there's liquid coming out from my right ear!! so odd, and I am a bit scared....
Hello Louise!
I am so happy to have found this post by you! I just found out about TSW and found the ITSAN Website. I joined the forum yesterday and actually posted a question about vitamin d! Because I found out that I am very deficient in Vit D (my labs showed a count of 11; I've read that we should be somewhere between 30-70. And crazily, I live in Florida!), I started taking 10,000IU 4 days ago. But after reading a bit more about how it works, I thought maybe I was taking too much, so I'm going to lower to 5000IU.
I've been off of steroids for 24 months now, still doing pretty bad, but so much better than my initial 9 months of withdrawal. I feel as if the Vit D is helping some, but I am also experiencing a big flare due to stopping my use of Protopic on my face after a year.
I am wondering if you know much about how safe taking Vit D is, as I worry if I'm making a good choice in supplementing. I'm so thankful to God that I found your blog! All this information and the forum has been so helpful to me after two years of not knowing that I was experiencing TSW! Would it be possible for you to take a look at my post on the forum in order to get a bit of my history and my questions about Vit D? My Username is JannaMarie.
Thank you so much Louise! God bless you immensely for all your help, and I pray that your flare will subside quickly! :)
With thanks,
Janna
I just did a lot of online research and the general consensus seemed to be that 5000 iu is not likely to be harmful, as long as it is not taken over a long period of time. As I only plan to use the vitamin d for 4 weeks, it seems to be a safe dose for me.
However, I'm not an expert or a doctor and would advise anyone considering vitamin d to do thorough research before using it.
Hi Brenda, sorry to hear you are flaring. Yes, I have heard of people having flares on their ears. I get a lot of weeping skin behind my ears and flaking on the outside. So I can relate and its normal for TSW.
Hope you feel better soon, x
I'm so sorry you're flaring again. You've come so far and you've also witnessed how great your skin was up until now. I've been using your blog for the last 13 months as inspiration. This phase will pass just like the ones before. You're definitely close to finishing TSW so keep strong and look towards the inevitable eternal healing waiting for you! This SOB really tests every fiber of our being but it'll be all just a distant memory soon come.
Thanks Kayse,
Your positive comments are really encouraging and I also enjoy reading your posts on the itsan forum.
We can absolutely beat this. I know. As a TSW community it's nice to know everyone stands together and supports each other.
Much appreciated. X
I am like you, Louise. Your pics could be pics of me. And I am on an immuno! I am 26.5 months without steroids. I wish the spring / summer would hurry up too.
Take care. What a bastard it is!
Elaine xx
Isn't it awful? TSW is a beast. Keep focusing on summer and better skin. I can only imagine how cold the weather is where you are. 😢
Sorry to hear you are suffering so much too. I've restarted my vitamin D intake so hopefully we will both see the benefits sooner rather than later!x
Hi Louise. Sorry to hear you are flaring again. It's interesting you mention you are on a diet at the moment, as I am on a diet and also flaring!
Everytime I calorie count and lose weight my skin goes mad. I have been researching as to why this would happen and have found several sites that come to the same conclusion, toxins!!!
The fat stored in our bodies are full of toxins and when we lose weight these stored fats are released to give energy to our bodies and in the turn the toxins are also released!! It makes sense to me, that and the weather...........bloody UK climate!!!
Siegfried x
Hi siegs!
That's an interesting theory, I will have to look into it more. Gotta shift some weight though, as all the comfort eating during TSW has had me tipping the scales. I'm losing 1-2 lb a week and aiming to lose a couple of stone ideally. I will have to see if there is a way to do it without flaring too badly.
I can see that a lot of us Brits are flaring due to the weather too. I'm noticing the first signs of spring in my garden, which remind me that winter is on the way out.
Take care.
Hi louise, my name is doug, I believe my young son is going thru this withdrawal (although I feel paranoid because derms don't seem to agree), would be great to make contact to have a chat as I'm UK based, not sure how this blogging communication works, and im not on twitter but I'm on facebook, based in northamptonshire, my work website is www.douglas maddy.com where u can find my contact details, with regard to this bit about vitamin D, this video may be helpful, also address nitric oxide.. hope this is helpful xx Richard Weller: Could the sun be good for your he…: http://youtu.be/Lh9lDWPMWrM
Hi Doug!
I agree it's awkward trying to communicate over the blog comments system.
The best thing you could do is to join the forum at ITSAN.org. I'm on there every day and it has a personal messaging system which is great for communication. Also, there are a LOT of other parents on the forum who are in the same situation as you and you would find a lot of support on there.
Hope to see you on the forum. My username on the forum is Louise UK.
Hiya louise, thank you for your response, I have read terms filled in details to register and am just waiting for admin to approve, thank you for your help, look forward to chatting with you on the site... little bit overwhelmed as I've never been a member on a forum before, looks intreasting :-)
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