One flare straight after another?: Is it possible... - LUPUS UK

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One flare straight after another?

MagsaTrini profile image
11 Replies

Is it possible to have one flare start after another, 4 weeks ago I had my first skin flare, it took 3/4 weeks to clear and now starting again, I really think it's the uv lighting at work :(

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MagsaTrini profile image
MagsaTrini
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11 Replies
Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi MagsaTrini ,

Are your employers aware that you have lupus? If not, we have booklets aimed at employers to educate them about the condition and indicate what support is available for you and them. You can view and download digital copies at - lupusuk.org.uk/working-with... If you need physical copies, just send me a private message or email paul@lupusuk.org.uk with your name and address and I'll pop them in the post for you.

There are filters which can be purchased for lighting to stop them emitting UV. Information about where you can buy them can be found at lupusuk.org.uk/eclipse/prod...

MagsaTrini profile image
MagsaTrini in reply to Paul_Howard

thank you, I have not yet had an official diagnosis, I have 9 of the 11 criteria, see Doctor tomorrow. She didn't make an official diagnosis a couple of weeks ago at my first appointment as she wanted to rule out certain conditions before giving treatment, I therefore had various blood and urine tests, which all appear to be ok??

lets see what she says

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to MagsaTrini

Let us know how you get on.

Tiras profile image
Tiras

Absolutely, it can depend on light sensitivity but, not necessarily. Lupus will effect us all in differ ways but, yet in the same ways.

I have rashes almost all summer long. I know, I will not stop (and don't intend to) doing what I like to do. I love being outside in the summer gardening, fishing, etc. I will not let Lupus stop me from living and enjoying life. I do saturate my body from top to bottom with sunscreen SPF 70 to 100 but I'm going outside and I will wear shorts. (I live in the southeastern part of the U.S. In the state of Alabama).

I have had a rash/blister on my right foot for 2 years, I have had to go barefoot for 2 years. I have not and will not let that stop me. My wife an I go shopping, where ever I go, whatever I do, I go and do barefoot. I've learned to adapt and over come.

So to answer your question from my experience the answer is yes.

Life Is Short

LIVE LIFE TO THE FULLEST

Tiras

"The Barefoot Gardener "

MagsaTrini profile image
MagsaTrini in reply to Tiras

thank you for responding. I'm so sorry to hear how this has affected you. i am learning so much from this site. I also live in a hot climate... Gibraltar which is a British Overseas Territory southern tip of Spain but I'm originally from Scotland UK

The rash isn't sore just quite ugly, its the other symptoms which affect me more, fatigue, swollen glands, sore throat, painful and swollen joints, fluctuating BP which causes blurred vision, mouth ulcers etc etc

I have also got for the 5th time shingles on my ankle, very mild but very painful

Tiras profile image
Tiras

This site I refer to it as a Commuinty/family, has been and is very helpful. Regardless of what may be going on with you, some of us can help and tell you our experiences. There will be times you can reply to someone because of what you have gone through.

Yes I have all the other stuff that goes on swelling, joint pain etc. I also have COPD and malignant hypertension to keep the lupus company. (Might as well joke about it and make the best of it) LOL!

As I said in an earlier post I will not let my issues stop me from enjoying life, that gets tough at times but, i do as much as I can. I would try to urge you to also adapt and over come, make the best of every situation.

If you Ever need anybody to correspond with, this whole community/family will be here for you!

I had to edit becaus I forgot to tell you, if you go to my home page, there are some photos of rashes/blisters Along with photos of my garden also.

I hope you get well soon!

Tiras

"The Barefoot Gardener "

MagsaTrini profile image
MagsaTrini in reply to Tiras

Thank you so much for your words of encouragement, truly grateful. I also suffered pleurisy twice last year together with bronchitis a few months later.... My 24hr BP records back in February showed extreme readings all day with highest of 224/133 and 10 mins later 96/43 sitting down?? Even in my sleep?? Endocrinologist ( I also have Hashimoto, diagnosed January 2016 ) is monitoring my adrenals

I was fine till about a year ago, then came fatigue, insomnia, ulcers etc etc

My poor mother was also fine till she hit her 40s and now suffers with various autoimmune disorders, lupus is not one of them

Please enjoy the rest of your day 😀

Tiras profile image
Tiras

Thanks

I am helping my granddaughter (she is only 12 years old, her and her brother live with Laura and I he is 10) to build a chicken pen for her school 4-H project. Yes she is out for the summer but this project goes into the next school year. Any way at the end we get to keep the chickens and, If all goes well we will be getting 12 to 18 eggs a day! Yea!

MAY GOD BLESS YOU AND YOUR FAMILY!

MagsaTrini profile image
MagsaTrini in reply to Tiras

Awwww sounds like a fun project for all involved, can't get anymore free range / organic

Enjoy the project and each other 😘😄🐔🐔

friars126 profile image
friars126

HI MagsaTrini,

Have you had to have time off due to being ill? Just wondering if you will tell your place of work if you do get a diagnosis? It seems crazy doesn't it that indoor lights can affect people so badly. The rash looks nasty and I'm sure you're keen to prevent it happening again. I hope you get some answers at your appointment.

Friars xx

MagsaTrini profile image
MagsaTrini

thank you for your reply, yes I was off for 3 months this year as was diagnosed with Hashimoto in January 2016 after nearly a year of bad health and severe insomnia, was quite poorly TSH was 106....... T3 was 0.4 and T4 2.4 - could barely get out of bed, hard to breath, grasping for air, for past year I have had severe fluctuations in blood pressure, sinus op, pleurisy twice, extreme fatigue, very painful joints especially fingers and knees, hands going numb at night painful and wakes me, mouth ulcers and blisters on roof of mouth, swollen glands, sore throat, wow the list goes on.......... my first rash was about 5 weeks ago and then started again about 2 weeks ago, last week shingles

leaving to see doctor now

thank you all for your comments xx

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