photosensitivity?

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photosensitivity?

Postby little_mima » Mon Mar 29, 2010 10:41 am

hey guys
I saw my rheumie a couple of weeks ago and she's confirmed I'm photosensitive and the rash across my face is caused by it. I'm a little bit confused, cause everything I've read about fibro doesn't say anything about photosensitivity. I've also been told by my GP and a different rheumie that the rash I get is characteristic of lupus, but since the fibro dx lupus is kinda being forgotten about.
Is being photosensitive associated with fibro as well as lupus? I'm not being told anything, other than to wear sunblock. I've also been discharged by the rheumie, so it's not as though I can ask her when I next see her. My GP isn't telling me much either, so I've been abandoned almost. :roll:
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Re: photosensitivity?

Postby gillshutt » Tue Mar 30, 2010 8:48 am

Not as far as I know :( I would ask them to do another lupus test on you when you are in a flare. It won't show up if you are having a period of remission which is why some people get misdiagnosed. Of course it could be something else as well as FM and nothing to do with lupus at all. :hugs:
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Re: photosensitivity?

Postby little_mima » Tue Mar 30, 2010 2:07 pm

cool, thanks. I've had my ANA tested twice, once at the start of everything happening and then again in December when I wasn't all that bad, and both times were negative. The rest of my bloods are at the high end of normal, but the last time they were checked was during an ok day where I was sore but not that bad. My old GP missed a fantastic chance of testing them in October when the rash came up for the first time and I could hardly move :roll: :banghead:
I'll bug my GP again about it again the next time I'm in. Poor woman!
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Re: photosensitivity?

Postby Mr.A » Wed Apr 07, 2010 11:16 pm

Being sensitive to light (via our eyes) is a common symptom of fibro & M.E. but I've never heard of getting rashes due to skin being sensitive to ordinary light.

That sounds like Lupus territory. How do you know light causes it, does it get worse?
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Re: photosensitivity?

Postby little_mima » Thu Apr 08, 2010 7:59 pm

It'd make the rash across my face worse, usually the day after being in the sun. When it's really sunny I'd get tired really quickly when compared to normal. Well, whatever normal is now! A few times it's made my joints worse, but not often enough for me to really complain about. I keep getting told that it's just all part of fibro every time I ask about it :dunno:
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Re: photosensitivity?

Postby Mr.A » Thu Apr 08, 2010 10:00 pm

If I were you, I'd keep researching this, I don't know much about it but it could very well be seperate from fibromyalgia.
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Re: photosensitivity?

Postby little_mima » Thu Apr 08, 2010 10:44 pm

cool thanks. But see why I'm a bit confused by it?
I'll see my GP next week and ask again. My rheumie said something along the lines of 'I can only think of lupus with a rash like that' so I've never been convinced that it isn't lupus, even with normal bloods. If that makes any sense
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Re: photosensitivity?

Postby stargrrlclaire » Fri Apr 09, 2010 12:01 pm

I'm exactly the same as this, I get the same response that it's because of my fibro. I just thought it was just me! :roll:

I don't know what to say or advise, all I know is that I stay out of the sun as much as possible
Reach for the moon, if you fail, you'll fall among the stars...
Lots of love,
Claire xxx
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Re: photosensitivity?

Postby gillshutt » Fri Apr 09, 2010 2:44 pm

The difference between a lupus rash on the face and others is that a lupus rash does not go into the folds on either side of your nose. If you google Malar rash face you should be able to see the difference. It's called a butterfly rash as it often appears in a butterfly shape.
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Re: photosensitivity?

Postby LinzWorld » Thu Apr 15, 2010 3:20 pm

A Photosensitivity rash is NOT a symptom of FIbro and is an indicator of Lupus. You don't need a positive ANA to get a Lupus diagnosis either.
I run FibroAction, a small national charity raising awareness of Fibromyalgia Syndrome. I am not a qualified healthcare professional. If you would like medical references for any facts quoted, just PM me.
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Re: photosensitivity?

Postby little_mima » Fri Apr 16, 2010 6:10 pm

thanks again guys :)
I spoke to my GP on Tuesday and mum complained about it all today to her as well. Turns out I've been photosensitive for years and have been getting the rash for at least 7, it just wasn't picked up by anyone. My joints have started to swell after I go swimming as well, but that's pretty recent stuff. But my rheumie has decided she doesn't want to see me again, so I'm taking photos of everything, am getting my physio to write a letter to my GP and am determined to do far too much next week before I see my GP again so she can see the swelling. That seems to be the only way I can get to a rheumie again... The really annoying part is that my bloods have been up but not up by enough for anyone to worry about it. :banghead:
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Re: photosensitivity?

Postby LinzWorld » Sat Apr 17, 2010 9:23 am

Diagnostic criteria for Lupus:
http://www.medicinenet.com/systemic_lupus/page3.htm

Taking photos is a great idea - I know a few Lupies that have done that as it can be hard to see your doc before the swelling or rash disappears again.
I run FibroAction, a small national charity raising awareness of Fibromyalgia Syndrome. I am not a qualified healthcare professional. If you would like medical references for any facts quoted, just PM me.
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Re: photosensitivity?

Postby little_mima » Wed Apr 21, 2010 8:51 pm

Linz, I'm on quite a few of those markers.
I saw my GP yesterday after swimming, so she saw what my joints were like for herself. They weren't as big as they usually are, but big enough to convince her to do all of the lupus bloods again and to refer me to a different rheumie. For the first time since this all started, I actually feel like I'm finally getting somewhere. At last!
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Re: photosensitivity?

Postby LinzWorld » Fri Apr 23, 2010 1:27 pm

Glad you're getting somewhere! :)
I run FibroAction, a small national charity raising awareness of Fibromyalgia Syndrome. I am not a qualified healthcare professional. If you would like medical references for any facts quoted, just PM me.
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Re: photosensitivity?

Postby shazq » Tue Apr 27, 2010 7:22 pm

little_mima wrote:Linz, I'm on quite a few of those markers.
I saw my GP yesterday after swimming, so she saw what my joints were like for herself. They weren't as big as they usually are, but big enough to convince her to do all of the lupus bloods again and to refer me to a different rheumie. For the first time since this all started, I actually feel like I'm finally getting somewhere. At last!


Good luck. :hugs:
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