Author Topic: 18 months in  (Read 363 times)

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Offline pschomer

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18 months in
« on: April 07, 2017, 01:31:55 PM »
I don't post a lot but I'm on here reading a lot, especially during flares.  I'm in my 19th month, I don't know if that makes me a "Long Term Vet" or not.  Just wanted to share a really rough patch about a month ago.

We had unusually warm weather here in Iowa and a weekend in the 70's.  I took advantage of it and spent a lot of time outside that weekend in just a t-shirt (I don't think I got any kind of sunburn).  About 2 days later my arms got really tingly, swelled up, lost elasticity, and oozed every time it was touched.  I could barely move my arms - and I wore long sleeves everywhere, even to bed.  I woke up every morning with soaked arm sleeves (one of the grossest things I've experienced).  That lasted about a 4 days.  We were scheduled to go on a cruise that weekend.  My arms healed ok by that time but my hands had cuts and sores all over, so I had to wear cotton gloves on our trip to Florida.

My skin was actually pretty good during the cruise - not much symptoms while on the cruise but I was out in the sun a lot.  I thought this would be good for me as it seemed to help last summer - but the last full day of our cruise my knees started to get that tingly feeling.  The day we got off the boat I had the same things happen to my legs that happened to my arms just 2 weeks prior.  They swelled, got rough, oozed (wet pants almost constantly), etc...  I was miserable walking off the cruise ship, walking/sitting in the airport, and on the flight home.  All I could think about was how horrible I felt.  This again lasted about 4-5 days and I didn't leave my couch for almost a week because of it (getting up, stairs, and just basic walking was a difficult chore).

It's about a month later now and I'm doing a lot better.  Skin seems to be back to what is somewhat normal (not healed, just the new normal with extreme dryness, itchiness - worse when I sweat).  I'm still jealous of almost everyone that I see with what appears to be perfect skin.

Kind of wondering if anyone has experienced the issue with sun exposure being bad and causing a huge flare?  At 18 months in - this was by far the worst flare that I've had.  I'm thankful that it didn't seem to last long but I'm worried about going out into the sun at all now.  It's getting warmer here in Iowa and I love spring/summer months, but now I'm a little fearful of them.

Offline pschomer

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Re: 18 months in
« Reply #1 on: April 12, 2017, 04:57:19 PM »
An update - last weekend I was outside a little bit (not a lot and tried to keep my hands and arms covered), but still got a pretty bad flare going right now only on my hands and wrists.  Seems to be tied to the sunlight I got over the weekend. 

Really interested if anyone else has experienced this.  In the past (and other people's testimonies) the sunlight seems to have helped with flares - not cause them.   :sad:

Offline xuudxk

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Re: 18 months in
« Reply #2 on: April 13, 2017, 04:03:25 AM »
I think it was about a year and a half in I thought I was doing well and decided to go rafting with my friends. At that time the only real problem areas were my wrists so I said hell, why not? It was as sunny and hot as it gets that day, I had a long sleeve shirt and a ton of sun screen. We rafted then decided to go to a community pool at the place we were staying at. I had an amazing time. The next day I thought I had tremendous sun burn, my face had turned red but so did my entire body that had been covered. The day after that, clear signs of a major flare - oozing, flaking, my hands were destroyed by the itching and the rubbing. The mess only got worse as within a week my head all the way down to my toes were affected. It took about 6 months before the symptoms started to alleviate but my body did not recover from it before I had another major flare at this past December.

It's funny when I look back at the pictures of myself during that day with my skin looking so good only to know that pure agony was waiting just around the corner. Oh well, can't do anything but laugh about it at this point.
Off TS since Feb 2, 2014.

Offline pschomer

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Re: 18 months in
« Reply #3 on: April 13, 2017, 01:40:31 PM »
Thanks Xuudxk - it's nice to know that maybe someone has had something similar happen. 

I did notice after our cruise that my hands never did fully recovery - they always were red and didn't have the same feel to them.  Guess I should have babied them a little more.  Looks like I may have to just stay out of the sun this summer - which is a huge bummer, but it's better than not being able to move at all because of flares.

Offline kwong

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Re: 18 months in
« Reply #4 on: April 20, 2017, 06:20:42 PM »
There were a 3 hot sunny days here in Manchester and I went out to my garden to soak up as much sun as I could. About 3 days later I could feel my skin getting more dry and felt a flare coming- now my face is oozing slightly and incredibly dry!

Offline mtem

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Re: 18 months in
« Reply #5 on: April 22, 2017, 07:31:39 AM »
I am at 20 months, and living in the tropics (Cameroon). Every day at 2pm I have to walk 1/2 km under the equatorial sun to pick up my kids from school. My hands and arms have been flaring continually for most of my TSW journey, and I think the constant heat and daily sun exposure is part of the reason. I always start flaring more and itching within 5 minutes of heading out the door. Gloves help. And an umbrella. People are always staring at me--well they do anyway just because I'm white...it's so difficult to endure all the staring. A friend took a cute photo of my 3 darlings following me and called me Mary Poppins in Africa. So grateful for the humor which was somehow healing for my soul.
In TSW since August 7, 2015. (Hand eczema due to nickel and soap allergy.) Used mild steroids periodically from 2006-2010, then was prescribed stronger ones from April 2012-July 2015 which only produced more rash. Prednisone in 2014. Cortisone injections as a teen.

Offline BraveC

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Re: 18 months in
« Reply #6 on: April 22, 2017, 02:55:57 PM »
With my son, I cannot tell if the sun hurts or makes his skin better. I think his skin gets better when he is swimming on the daily like when we went to Hawaii, but I think the sun itself seems to irritate it. This may have to do with the heat. It makes sense though that swimming on the daily would help since the chlorine itself kills a lot of the bacteria on the skin. You mix that with the sun and I think you have a recipe for better skin. The only downside is the chlorine seems to dry the skin out.
Parent of 4 Year old. Applied Triamcinolone .1% 2 to 3 times a week for 3 years. Also used Protopic and had prednisone a couple of times. Quit October 2015

Offline xuudxk

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Re: 18 months in
« Reply #7 on: April 22, 2017, 09:51:10 PM »
The amount of sun I gave myself that day was just overkill. Perhaps some exposure to sunlight might be good for the skin but I must say, I live a hermits life these days and most definitely avoid the sun a lot.
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