Author Topic: flaring in spring  (Read 663 times)

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Offline summersunny

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flaring in spring
« on: April 20, 2017, 01:54:55 PM »
Has anyone found they flare badly in the spring and summer months? I had been doing really well until I went for a blood test the other day and was told I need life long treatment for my thyroid. Skin was flaring a bit but with a bronchial cough and spring pollen playing havoc I've gone into a full scale flare everywhere. Even my face is covered and I can usually keep it settled there.

Every spring and summer since this nightmare began, I've had horrible full bodied flares. It's getting up to almost 3 years now and I'm not sure I can cope with this for much longer. Please can anyone give me any ideas or suggestions?
6 months old, 5yrs 100% TSC, stopped after 5 yrs, dreadful withdrawal.  TS aged 11, 1% until early 20's. Stopped at 20, severe skin damage. 1997, 3 weeks  TSC. 2011 Dermovate 3 weeks, 2012, 2, 5 day courses prednidolone. 2014, 2 week Betnovate & RSS, 19 months. No long term steroids for 30 years.

Offline Leeboy80

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Re: flaring in spring
« Reply #1 on: April 20, 2017, 04:12:29 PM »
Hey Summer,

So sorry to hear you are doing poorly, but at least you are coming off of some better days! I am in a similar spot, I was doing pretty well in Jan feb but really digressed in march until now.

When it comes to the seasonality question....honestly, I always thought that the warmer months brought on better time, but last summer I had a very tough time. In my experience, I can draw no conclusions that I am better or worse in winter or summer. I have actually come to the conclusion that seasonality/environmental factors have no impact, and that this beast really just has a mind of its own. Please note that this is entirely based off of my experiences alone, and im curious to hear others experiences.

One thing I do know is that the sun is NOT my friend at my current state (but I do feel it has helped me in the past when my skin felt stronger/better). I say this because I sat in the strong sun for the first time since winter the other day, and it totally made me flare up, especially my eyes. I am not saying the sun is bad for everyone, it's definitely good for some, but it really depends on where your skin is currently at. We all know how much this beast fluctuates.

What I do like to do, and once again, I've seen none evidence that this helps, is try to sweat (even tho it may sting and itch) and walk at night in the warmer, more moist spring air.

Have you recently gotten more sun exposure than normal?

Offline Gary -S-

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Re: flaring in spring
« Reply #2 on: April 21, 2017, 06:30:02 PM »
Just from reading your post SS I can feel your frustration and despair. I honestly know how you feel and want to let you know that you aren't alone. Strength in numbers...

Sorry to hear about your blood test results with your Thyroid. It's another slap to the face. Must have been stressful & horrific to hear that result. Not to be a cokhead or anything but perhaps getting a second opinion with another test just to know for 100% certainty that you require long term meds?. TSW does crazy stuff to our bodies with many fluctuations occurring. Just putting that one out there is all.

TSW is one if not the most random & bizarre condition that we can get stuck with. It boggles the mind and keeps you guessing at all times, everyday. I hate how the skin effects our mood. You really have to be in TSW to understand all of the symptoms. More so for the psychological side of it, I mean.

In my own experience I find that the winter months are my body's enemy when it comes to skin defense. My skin loves the spring time with the sun shining. Although, if it gets too warm and humid I tend to get uncomfortable and breakout more. We shall see if my body can cope this summer.

LB80 makes some interesting points about the complexity of TSW. TSW really does have a mind of it's own!. There is no rhyme or reason for when our bodies decide to flare (in my opinion). The other day I stopped brushing my teeth as I thought my new toothpaste was making me flare!, ha ha. Sometimes I eat chocolate then immediately start scratching other times I don't scratch after eating. So weird and difficult for ones mind to take in.

You've come along way. Who knows what is around the corner?, just remember that. Wanted to offer you some support as your post touched me.

I hope you get some answers and comfort soon.

Best of luck, and to yourself LB80. Some good ideas you had in your own post.

We all need to pull together. One day this will surely be over.



 



   
« Last Edit: April 21, 2017, 06:43:18 PM by Gary -S- »
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Offline summersunny

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Re: flaring in spring
« Reply #3 on: May 14, 2017, 10:48:26 AM »
Thank you for responding to me. Unfortunately, the past few weeks haven't improved and the itching just seems to get worse as the weeks go on.

I never dreamt this would carry on for 3 years. After only 1 round of oral steroids and 2 lots of orals for a couple of days and then 18 months later 2 weeks of topicals, I really thought it would be over in afew months.

I only started to itch badly when the nurses put the topicals on and gave me antihistamines. Before then it was more of an allergy type redness and didn't itch incessantly like it is now.

You're so right about the emotional toll. No one can understand unless they are going through it. I've found nurses, dermatologists and doctors have absolutely no comprehension of the suffering and pain we go through. If they had an inclin of how this affected us they would be working their socks of to alleviate our suffering and give us peace of mind without offering more pharmaceutical poison that will kill us.

6 months old, 5yrs 100% TSC, stopped after 5 yrs, dreadful withdrawal.  TS aged 11, 1% until early 20's. Stopped at 20, severe skin damage. 1997, 3 weeks  TSC. 2011 Dermovate 3 weeks, 2012, 2, 5 day courses prednidolone. 2014, 2 week Betnovate & RSS, 19 months. No long term steroids for 30 years.

Offline Georgie.C

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Re: flaring in spring
« Reply #4 on: May 14, 2017, 03:51:38 PM »
Your story sounds exactly the same as mine. I used mild Topical Steroids as a child then nothing for 20 years. But had to have Steroids due to a pregnancy complications. (hyperemesis gravidirum) Three pregnancy so 3 doses of prednisone then about 18 months of steroid creams but then 2 doses of oral Steroids again due the cream stopping working bad skin.

I'm 3 years in too and going through exactly what you describe and I too thought I'd be done long before now due to the short length of time using them. But thinking about it I really did use a lot of Steroids in that small amount of time. So perhaps that is worse than having less for a longer time.

Either way I'm sure we will get through it eventually. I don't have much choice anyway as the steroid creams stopped working for me. So onwards and upwards. Hope we both post some happier posts soon!