lizzie

Sun And Scleroderma

24 posts in this topic

Lizzie your rheumatologist sounds a bit like mine, he also just gave me a leaflet & circled the bit about Limited Sclerosis & told me not to look on the web because they where all scare stories!!! So when I looked at the reccomended site from the leaflet it shocked me to say the least. Still not sure about my rheumatologist because he doesn't seem to listen to what I tell him & just passes things over.

 

Ibuprofen is not so good for people with asthma, so I take pprescription meds from the general practitioner when the pain is too much.

 

Does everyone get a lot of pain? Is it just in the hands?

I get pain in my knees, lower back & thighs along with pain in hands.

 

Jensue

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I guess I am going to get yelled at here, but I love the sun and since I have stopped burning due to this, I have also stopped with the sunscreen. I know, I know. But then I was also one of the ones who used baby oil as a teenager! I love the sun and a deep tan that lasts all winter. And yes I am seeing signs of it, like the little back spots that are showing up on my legs where they weren't before, and they do make me worry at times, but only for about 10 minutes every other month. I figure if that is the worst that can happen through this whole mess, give me the warmth of the sun some more. I hate the cold and the wind and the gray of winter. Bring on summer! :P

Lizzie, have fun darling and give your dad a big hug from us all, dear! B)


I hope that your day goes well and you don't have any worries.

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As I understand it (and keep in mind I have no medical training at all), there are two things to consider regarding sun and scleroderma.

The first is that Vitamin D deficiency is very common in people with autoimmune diseases, including scleroderma. And sunshine will cause our bodies to manufacture Vitamin D -- which is a very good thing!

The flip side of it is that unprotected sun exposure is harmful for the immune system and it can cause even more damage to skin that is already damaged by scleroderma.

Read more about it on our main site, at:
Vitamin D Deficiency, Sunshine, and Scleroderma.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Kristen- you're a bad bad girl! Thanks for the good wishes- I will have fun in my FACTOR 50 and BIG BIG SUN HAT ( thats me trying to educate you Kristen!). seriously you really should take more care - I have friends who have had melanoma and at best its not fun and at worst its fatal. Thats the lecture over! Am now just going to sort out some summer clothes to pack, a bit of a worrying moment as I know the winter weight has started already.

PS my Dad would like it better if you were there to hug him in person!

Lizzie

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I am also a sun lover and unfortunately I am a redhead!! What about skin involvment? doesn't some kind of UV rays help with this? Are the rays the same as the suns rays and tanning beds?

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Hi Rachelle, when I was in hospital a couple of weeks ago I also saw the dermatologist and she suggsets soem UV treatment as not only would it be good for my psorasis but also siad could help with SSC skin thickening. I meant to read up about it but haven't , so don't know what is the difference is between the Uv treatment and natural sunlight - I assume ther must be otherwise it would not seem a good idea for those with SSc.

Lizzie

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I went to Bahamas in March- wasn't diagnosed until October. I used 30 sunscreen and got an all over tan. HA HA! I couldn't figure it out how my bottom and breast got tan until I got the diagnosis. It lasted for more than a year... Was it the sun or the Scleroderma? I Think both!

When people commented on my tan I just said thanks. No one knows what Scleroderma is...Got tired of trying to explain. It's like... Have you got two hours to discuss this?

However, people thought I was crazy when I told them I didn't get in the sun or tanning beds.

Have Fun!

I USE SUN SCREEN!!!!! B)


Diagnosed with Diffuse Systemic Scleroderma May 2005

Raynaud's, GI, esophagus, skin and lung involvement.

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I've been wondering about the sun as well. Going to Florida for two weeks in May/June, and although I've only been diagnosed with morphea, makes me wonder if I have to worry about the sun or not. We'll be spending a week in Disney, which means a week out in the hot and powerful sun! I am very fair skinned and I burn to a crisp easily! I have always been faithful with the sunscreen though. I do start UVB therapy on Tuesday, so that will give me a bit of a gradual tan. Will talk to my dermatologist about it when I see him in April.

 

Danielle

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