I've been flaring now since the end of December and things are actually getting worse rather than better. Every night, the skin on my neck and is soaking wet and my sleep is broken. When I get up, the wetness dries to a thin, flaky crust and I can't turn my neck. It stings like acid has been poured all over me.
I was actually looking at my photos from this time last year and my skin was good back then.
What's really sad is that my kids are off school for half term week and I can't do anything with them or take them anywhere because I'm stuck on the sofa in terrible pain. So on top of everything else, I have kids moaning in my ear about how bored they are and how they'd rather be at school!
I also keep getting phone calls and texts from my friends who can't understand why I've been AWOL for so long and probably think I'm avoiding them.
By next week I will have been flaring for two whole months. Unless a miracle happens and the flare ends.
BTW I'm still on the vitamin D and its having absolutely no impact on my skin whatsoever.
I actually have zero optimism today. It feels like I'm just stuck like this.
26 comments:
So sorry to hear you are flaring. I am only (lol only) 21 months in but I am having the worst flair really of my whole withdrawal - not too much weeping but general pain and EXTREME itching.
I only mention this because I live in the UK too and think the weather this year might have something to do with it??
Thanks for your blog - it's really helped me through the whole experience. Also actually, could I ask you, do you get excessive sweating as well? I'm having a really hard time of that too when I am flaring badly.
xxx
Hi Cara,
It's comforting to get a friendly message when I'm feeling so low. Thanks for reaching out.
Yes, this UK winter seems to be affecting a lot of people with TSW. i wish I understood it better.
Right now I'd just like some kind of confirmation that there is an end in sight!
I don't really have a problem with sweating, but the neck ooze feels like sticky sweat and seems to be triggered at night when I pull the blankets up.
Hope you feel better soon, x
Ah Louise I'm so sorry to hear this, you poor love.
I'm doing the night sweating thing and my feet have swelled up (26 months) so it must be something in the air...
Going to Nottingham in a fortnight to the CEBD Patient Panel so I'll be sure to let them know about this!
Hope you feel better soon.
Hugs xxx
Great minds, kitty...I was about to email you to see how you were doing!
Sorry to hear you are flaring too. I honestly think that we Brits seem to be getting the worst of it this winter, with poor Jenny and Siegfried flaring too.
Toying with the idea of going on the dupilumab trials, but REALLY uncertain about whether it's a good idea this far in, or whether I should just ride the TSW wave to its natural conclusion.
Eek.
Hi Louise,
Not throw fuel on the fire but I don't feel weather has anything to do with it. I flared badly my first four months, then healed for so long and then flared HORRIBLY months 22-25/26. My first flares were in the winter and the more recent batch was in the summer. It sucked. It felt like it lasted forever and parts that had totally healed (arms, legs, stomach) flared, as well as new spots (front of one knee????). I'd been dosing Vitamin D for months and still got whacked. This beast is just that - a beast. I'm much better again at 30 months now but it does beg the question .. how long will this REALLY go on? Will we all actually really heal? Watching vets like you and Julianna go through this so late in the game is completely disheartening. I hope you get a break soon.
Hi Mandy, thanks for your honest comments.
TSW is a beast, absolutely.
The reason I think weather is involved in my case is because I heal every summer and flare between October and March. Most of the other Brits and those of us in northern latitudes seem to have the same pattern.
I agree that weather can't be the whole picture with everyone, as there are people in hot climates who get lots of sun and still flare. I guess we will never really know unless more research is done.
I know my posts are disheartening and upsetting people and I'm sorry for that. I've had quite a bit of feedback that this last post has upset a few TSW'ers but I feel that I've always had to be honest about this journey. I know Juliana feels the same way. I could have ended the blog when I healed last summer, but I have to be true to myself and the TSW community.
As for the question about how long does it go on, I just don't have any answer or idea. There are people on the forum who healed in 18 months and have not flared since. There are people who have flared constantly for 3 years with no break and there is even a person who is 8 years into withdrawal and still suffering. It does concern me that I've possibly done permanent damage to my blood vessels, but going back to steroids is not an answer for me. I'm sticking with this even if I don't heal completely.
I'm glad you're feeling better at 30 months and hope that this marks the end of your TSW and the beginning of healing. It's a long road.
Much love and best wishes x
Thank you Louise :) You too. I got this lovely quote from my aunt last year and it's seems apt 'The crocus reminds us that no matter how harsh the winter, spring always returns
x
I am so sorry that this is happening to you.
I have the thought that it may not be
just the weather. It may be clothes/bedding/etc. that one wears/uses in that weather. Have you been patch tested for contact allergies?
Cara- that's lovely. I will remember that one. Great quote!
Rosemarie- I had patch testing for allergies as a child and some RAST tests as an adult. The results were pretty inconsistent, but this could have been affected by the steroid use creating false positives/negatives.
I've tries changing lots of things like detergents, clothing etc. I even stopped using the gas fire in case the artificial coals were triggering it. I really have no idea if there is a trigger. I'm stumbling in the dark.
I managed to sit out in the sun this afternoon for nearly an hour before I got too cold. I'm hoping it will help!
Thanks for your comments x
Hi Louise,
I am so sorry if my comments came across as unkind in any way. I am so grateful that you continue to update your journey. I, personally, will never go back to steroids either but the longer these flares go on, the more i wonder if the best course is just to ride it out and keep waiting (forever???) or seek SOME other alternative. What that would be, I don't know - nothing seems to have worked so far! I suppose it's just the feeling of helplessness. Not having control over our bodies our our condition is, to me, the most difficult thing of all about TSW. I can only hope we're all coming to the end sooner rather than later!
Hi Mandy.
No, I didn't feel your comments were unkind at all. I agree with what you say, as the same thoughts have been going through my mind too lately. That's why I've been researching dupilumab as a possible therapy.
I'd like to think i will heal completely like I do every summer, but at this point I really don't know. I've a lot of doubts about the outcome of TSW and Dr Raps claim that "everyone heals."
I'm definitely open to new ideas an alternatives. Returning to steroids is the only option I wouldn't consider, but I'm up for everything else!
Hugs x
Hi louise i am 8 months in to tsw and last month i spoke to a homopathic doctor who agrees that steriods are bad. The doctor said to me that long term use of anti biotics and topical and oral steriods can damage the gut especially the liver. So after a long chat with the homopathic we decided that i should post him my hair samples. From my hair samples he could derive alot of information. Once he got my results i was shoked at how much was wrong with me. He said i have got so much pestides and fungi in my gut lining. He said this is the reason why my body is not healing properly. He strongly reccommend a detox. I have been on his medicine for ine month and i feel better.
Hi everyone,
I was wondering if anyone has been to see an acupuncturist/herbalist to try to heal themselves naturally from the inside out?
I've read that many take vitamins, which is fantastic, but I'm talking about helping your blood become helathier, therefore nourishing your skin?
Hi. I pretty much tried everything over the years!
As a child, my mom took me to a homepath, where I followed a desensitisation programme and went on a stride no dairy diet. Years later, I went for a course of acupuncture and although I found it lovely and relaxing, it didn't really help my eczema.
I still think it is worth trying different things, because if something gives you even a little relief, it can make a big difference.
Hi Louise
why not give the tanning salon another shot?
Id try it myself but its not allowed when you're on the drugs...
hope things are improving...
Elaine x
I'd love to give the tanning salon a shot if I can find one that will let me in! I think the best method may be to phone around and explain my situation rather than getting a nasty response like I did the last time I tried.
We've had sun the last couple of days, so I've been sitting out on my plastic chair! Amazingly the ooze dried up on my neck and my face is a lot clearer. I don't know if it's the sun, the vitamin d or something else, but I'm really happy that I'm turning a corner after such a big flare.
I will definitely be thinking about preventative methods next autumn before flare season starts. This might be regular tanning sessions or a holiday somewhere hot!
Hope you are doing Ok Elaine x
Yeh Louise the sun does help. Everytime i have gone abroad to hot country my ezcema literally finishes. But as soon as i come back to england it comes back. So i have finally decided to go abroad for one year. I have notified my worlplace and have resigned. I think its time to put my health first. I will be leaving on March 25th and will keep in touch. I feel one year in sun will heal me completely and fully regenerate my blood vessels. God bless you All trust me you all will fully recover
That sounds fantastic! Please let me know how you get on abroad and whether the sun helps your skin. X
Absolutely louise i will tell you. I really hope i can help everyone. I really think this will be the push i need to getting fully cured
Yeah, moving to somewhere sunnier would be perfect for your situation.
MY anniversary of TSW is smack bam in the middle of winter so I hope I won't be hit with a double whammy
so sorry Louise. The sun will clear it up I'm sure. Just gotta wait unfortunately :(
It is Wynter! We've had sun the last couple of days and I sat outside for a little bit and the improvement in my skin has been great! Will hopefully post some pics next week when kids back at school. X
that's so good to hear Louise. <3 gosh, that sun!! Just move! haha
Hey Louise,
Sorry things are still going so bad for you. I can't remember if you tried cutting out moisturizers or not. It's made a huge difference for me. But it's a really hard withdrawal process. I know you're aware of it, but I just wanted to throw it out there as a possible route. I, as well as some others have blogged about our MW experiences if you would like to read (or re-read) them.
www.itchyred.blogspot.com
Hope this flare goes away soon for You!
JT
Hi JT and thanks for sharing your experiences.
I've tried MW a few times, the last time being the previous January when I lasted about 5 or 6 weeks.
I found it great at reducing the flares, but the tightness and flaking was hard for me to cope with so I now do a modified version of MW which suits me better.
When I flare I never moisturise, because I believe that it exacerbates flares. Once the flare is the in the shedding stage, I gently moisturise with a well-tolerated product like Salcura or jojoba oil or epaderm. In the summer, my skin heals and I can go many months without needing any type of moisturiser at all.
I think MW a is always worth trying, as it really helps some people and it's not the end of the world if someone finds it doesn't suit them personally. Not to mention the cost benefit of not having to buy expensive creams!
I'm really glad it worked for you and I love reading the positive experiences of others too. I know Dr Sato, the Japanese TSW expert, swears by this method.
BTW I love your profile pic. I watched Napoleon Dynamite for the first time a few weeks ago and really loved it.
I hate living in uk ever since I came to this country I flared up with ezcema I've been on topical steroids ever since I can remember its been two months since my tsw
How long does tsw last I'm fed up with flaring up
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