FabSwingers.com forum: October is also Lupus Month

By *icketysplits OP Woman
over a year ago

Way over Yonder, that's where I'm bound

I have posted before that I have lupus (SLE). It's lupus awareness month so I'm just posting the information on what to look for.

There are different types of lupus – from the milder Discoid lupus erythematosus, or DLE – to the more serious Systemic lupus erythematosus, SLE. DLE tends to only affect the skin, while SLE can target any tissue in any part of the body.

What should we look out for?

Because of the nature of lupus, the signs will vary both in range and severity in each individual case. Lupus works in patterns too, so symptoms often come in ‘episodes’ (flares) then may subside again for a while. But generally, the symptoms can be categorized as:

• Joint pain

• Unexplained fever

• Swollen joints

• Prolonged or extreme fatigue

• Skin rash, particularly a butterfly-shaped rash across the cheeks and nose

• Swollen ankles

• Swollen lymph glands

• Hair loss

• Depression and anxiety

• Anaemia

• Mouth and nose ulcers

• Pale or painful fingers or toes from cold or stress (Raynaud's phenomenon)

• Memory loss

• Headaches/migraine

• Shortness of breath

If you get combinations of these symptoms on a regular(ish) basis then do go and ask to be tested.

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By *icketysplits OP Woman
over a year ago

Way over Yonder, that's where I'm bound

Bump for the night crew.

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By *heOwlMan
over a year ago

Altrincham

[Removed by poster at 14/10/14 23:06:06]

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By *heOwlMan
over a year ago

Altrincham

"I have posted before that I have lupus (SLE). It's lupus awareness month so I'm just posting the information on what to look for.

What should we look out for?

• Joint pain

• Unexplained fever

• Swollen joints

• Prolonged or extreme fatigue

• Skin rash, particularly a butterfly-shaped rash across the cheeks and nose

• Swollen ankles

• Swollen lymph glands

• Hair loss

• Depression and anxiety

• Anaemia

• Mouth and nose ulcers

• Pale or painful fingers or toes from cold or stress (Raynaud's phenomenon)

• Memory loss

• Headaches/migraine

• Shortness of breath

If you get combinations of these symptoms on a regular(ish) basis then do go and ask to be tested.

Nicely put (I would add a smilly, but it's doesn't feel appropriate for the subject matter)

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By *icketysplits OP Woman
over a year ago

Way over Yonder, that's where I'm bound

"I have posted before that I have lupus (SLE). It's lupus awareness month so I'm just posting the information on what to look for.

What should we look out for?

• Joint pain

• Unexplained fever

• Swollen joints

• Prolonged or extreme fatigue

• Skin rash, particularly a butterfly-shaped rash across the cheeks and nose

• Swollen ankles

• Swollen lymph glands

• Hair loss

• Depression and anxiety

• Anaemia

• Mouth and nose ulcers

• Pale or painful fingers or toes from cold or stress (Raynaud's phenomenon)

• Memory loss

• Headaches/migraine

• Shortness of breath

If you get combinations of these symptoms on a regular(ish) basis then do go and ask to be tested.

Nicely put (I would add a smilly, but it's doesn't feel appropriate for the subject matter)"

Thanks but it is a copy of the awareness info.

I was suggesting one of my people get tested today and it prompted me to show her the information so I decided to share it here too.

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By (user no longer on site)
over a year ago

Thank you for this. My Mum passed away last month due to SLE Lupus, she had been suffering for 22years and doesn't seem there is any more awareness now than 20 years ago x

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By *hoe_nixCouple
over a year ago

leeds

my mum has lupus and is in a bad way at the moment

not many people know about it

so its great to see this thread making people aware

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By (user no longer on site)
over a year ago

Sadly there's little awareness about Lupus because it's one of those 'invisible' illnesses.

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By *ucsparkMan
over a year ago

dudley

Education is never wasted when someone takes it on board, thank you licky ??

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By *icketysplits OP Woman
over a year ago

Way over Yonder, that's where I'm bound

"Sadly there's little awareness about Lupus because it's one of those 'invisible' illnesses."

Or the symptoms look like other things or you look OK (as in my case).

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By *ee VianteWoman
over a year ago

Somewhere in North Norfolk

"Sadly there's little awareness about Lupus because it's one of those 'invisible' illnesses.

Or the symptoms look like other things or you look OK (as in my case).

^ this

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By (user no longer on site)
over a year ago

Great thread and really well put together op! My mum has lived with lupus (sle) for about 25 years now. It can be horrendous but she is amazing and deals with it every day. She has had so many other complications due to her compromised immune system but on the whole people (including many close friends) have no idea what it is! Cheesy as this might sound she is an absolute inspiration, don't know anyone stronger or braver!

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By (user no longer on site)
over a year ago

Crikey never knew what lupus was until reading this.

It's the works isn't it?

Certainly sounds like a awful thing to have.

Sending good feeling vibes your way.

Hope you manage to beat it one day.

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By *icketysplits OP Woman
over a year ago

Way over Yonder, that's where I'm bound

"Crikey never knew what lupus was until reading this.

It's the works isn't it?

Certainly sounds like a awful thing to have.

Sending good feeling vibes your way.

Hope you manage to beat it one day.

Xx"

There isn't a cure, as yet. You just manage the condition.

After 22 years with it I am good at knowing when I am going to have a flare and I make sure I rest then.

If any of you used to watch House, lupus was mentioned in loads of episodes. Whenever they couldn't work out what was killing the patient of the week lupus would rear its head as a possibility.

My family just say that I'm a bit loopy.

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By (user no longer on site)
over a year ago

Thank you for giving us lots of information about it and how you cope with it xx

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By *icketysplits OP Woman
over a year ago

Way over Yonder, that's where I'm bound

BUMP!

It's October so it's Lupus Awareness Month again.

Lupus UK is sending out facts and information on Twitter throughout the month.

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By *icky999Man
over a year ago

warrington

its never lupus.

except when it is.

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By *icketysplits OP Woman
over a year ago

Way over Yonder, that's where I'm bound

"its never lupus.

except when it is. "

It's true that you get diagnosed with just about everything else before getting a lupus diagnosis but it is worth pressing the doc to keep checking when everything else fails.

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By *rsIdiotWoman
over a year ago

Bedworth

"BUMP!

It's October so it's Lupus Awareness Month again.

Lupus UK is sending out facts and information on Twitter throughout the month.

October is also international pregnancy and infant loss awareness month!

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By *icketysplits OP Woman
over a year ago

Way over Yonder, that's where I'm bound

"BUMP!

It's October so it's Lupus Awareness Month again.

Lupus UK is sending out facts and information on Twitter throughout the month.

October is also international pregnancy and infant loss awareness month!"

Lupus and pregnancy loss go together, unfortunately.

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By (user no longer on site)
over a year ago

I suffered loss of my pregnancy in October 2009.

My best friend was a lupus sufferer

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By (user no longer on site)
over a year ago

"BUMP!

It's October so it's Lupus Awareness Month again.

Lupus UK is sending out facts and information on Twitter throughout the month.

Reply privately

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By (user no longer on site)
over a year ago

"its never lupus.

except when it is.

It's true that you get diagnosed with just about everything else before getting a lupus diagnosis but it is worth pressing the doc to keep checking when everything else fails.

I shall let a family know about this. Thanks lickety

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By *icketysplits OP Woman
over a year ago

Way over Yonder, that's where I'm bound

"I suffered loss of my pregnancy in October 2009.

My best friend was a lupus sufferer "

Anniversaries can be hard. You're in my thoughts.

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By *ranny-CrumpetWoman
37 weeks ago

The Town by The Cross

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By (user no longer on site)
37 weeks ago

My mum has several markers of lupus unfortunately... She's been managing with medication for around 10 years and has regular checks, mostly bloods i think

I should check if it is hereditary - i have several of the symptoms that Lickerty listed

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By *elix SightedMan
37 weeks ago

Cloud 8

I’m assuming lupus is what took Lickety from us. Very sad and I would like to have known her better.

My sincere condolences to her friends and family. And to those suffering with lupus, I hope the medical world can soon find a cure. It seems advances in these areas are always coming so there is always hope.

Love to all.

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