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Discussion Starter · #1 ·
Does anyone else have this!

A couple of my fingers bend starting point between the knucke area and the next joint near the nail. Also, when I raise my hand with fingers stretched all of my little finger automatically points away from the one next to it, this happens on both hands! I have to concentrate to pull the finger in line with the others, especially with my right hand!

Not sure its connected to SLE but did not now where to post.

Lesley
 

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Hi Lesley

Another possibility might be Rheumatoid Arthritis. Its possible to have both Lupus and RA as they are both autoimmune. RA tends to deform finger joints over time so that they bend outwards much in the way you describe.

Definitely bring this to your rheumy's attention and an xray will determine if there is actual damage in the joint which would be consistent with RA.

Let us know how you get on

Luv n stuff
Joan:rose:
 

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I have developed 'swan neck' fingers - it's where the knuckles kind of drop and also my joints in all fingers bend the 'other way'. My thumbs bend too far back too - looks like they're double jionted but it's a problem with my tendons. I had a tendon rupture in one of my fingers and had to have it repaired.

Worth keeping an eye on....

Amanda
 

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Discussion Starter · #5 ·
Katherine hope you are keeping well. Thanks for the link! The bends in the fingers do look like what is happening to mine, although my thumbs seem okay! Strangely my Mum who has MS had the Hitchikers thumbs and surgery to help, she does not have other bent fingers though.

Wow my list of problems is so long, I am so glad that I found this site I do feel very overwhelmed most of the time! My NHS care is still virtually non-existant at present even though I have been diagnosed with SLE! I don't have a Rhuemie at present only an Immunologist who diagnosed me be phone arranged for the drugs and no contact since!

Thanks also Amanda and Joan!

Lesley
 

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hello lesley :)

like amanda,I also have this problem too..most of my fingers have swan neck deformities & I have had problems with the tendons too.

lesley when you do get to see a rheumy I would ask to be referred to an occupational therapist too,they will assess you & make you some resting splints & possibly some individual finger splints to help with preventing deformaties.you will also be given some information on exercises to help the joints too.

one of the most beneficial things I've found with this site is the amazing amount of information!!knowledge is power & it certainly helps to go to appointments feeling confident & prepared!:) I wish I had found this forum years ago!

good luck lesley,keep us updated please
take care...karen x
 

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Discussion Starter · #7 ·
Thanks Karen,

I have a friend of 35+ years who is an occupational therapist, so I shall ask her for some advice to. She does not know I have Lupus so I will have to tell her that to. I have not really told anyone I know because I don't think they will understand - they will probably just say I'm sorry not knowing what its all about.

Lesley.
 

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I can relate to that lesley :)
It's weird because for all the years that I thought I had rheumatoid arthritis it never bothered me telling people but with the lupus i'm more reserved about it.
not sure why :rolleyes: think it's as you said most people haven't heard of it & don't understand...however you do eventually learn who you can talk to & who you can't...It certainly opens your eyes to some people :wink2:

sorry to ramble on lesley :eek: I would definitely be having a chat with your friend!what a useful friend to have :hehe:
bye for now..karen x
 

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another possibility is Jaccoud's arthropathy. Your hands sound like mine with fingers pointing in all directions.

If you can place your fingers in the correct position (even if you have to use another hand) then it is unlikely to be a tendon problem.

The good thing about Jaccouds arthropathy is that it does not affect function, it just makes them look a little off.

raglet
 

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It does sound like Jaccoud's - here are some pictures of that

http://www.radswiki.net/main/index.php?title=Jaccoud's_arthropathy

Katherine there are a few good photos on the LLC site do you know how to be sure what they are of ? One is clearly neonatal lupus skin rash, one seems to be livedo on the arm and a very handsome photo it is. I'm not sure about the palm - vasculitis ? I'm wondering if the back of the hand one linked to, is a typical dermatomysositis hand because of the reddening on the knuckles.

Lesley you have a first rate opportunity to raise awareness. If a medical professional hasn't heard of lupus they absolutely need to !
Depending on the circumstances, I just say I have a sort of RA that can affect all organs not just joints called lupus by the way, in a throw away tone of voice

"Need to know" is a good rule about telling though. Most people couldn't care less and aren't interested anyway.

Cheers
Clare
 

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Er, that's weird Clare. That page I posted only has two photos on it and the second is to do with tendons. There is certainly nothing to do with neonatal rash - anyway, I was only trying to help.

Katharine
 

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Oh sorry for the confusion Katherine ! I went to the London Lupus Centre site itself

www.londonlupuscentre.co.uk/images/graphics/

There's a list of their images/graphics you click through to. That's where you see the ones I referred to, but it doesn't say what they are

The back of hand one is the one to the left of the X ray, so you can see the skin

http://www.londonlupuscentre.co.uk/images/graphics/ph2.jpg

ph13 is livedo I suspect, ph4 is definitely neonatal, ph5 is the palms and ph3 is an upper chest but I don't know what either of them is.

Sorry again

Clare
 

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Discussion Starter · #13 ·
Thank you!

Clare.T;494130 said:
Depending on the circumstances, I just say I have a sort of RA that can affect all organs not just joints called lupus by the way, in a throw away tone of voice

"Need to know" is a good rule about telling though. Most people couldn't care less and aren't interested anyway.

Cheers
Clare
Thanks Claire for this and providing the links to pics!
Raglet thanks for suggesting Jaccouds!

The pics do look similar even though my fingers point in different directions especially my little ones which look like they are trying to escape from the others!!

Interestingly the neonatal pics look like the rash that my 5 year old son had two weeks ago (GP said unkown viral) along with weeks of raised fevers and swollen glands! He has got a GP appt. this morning but low and behold fever is back to normal and glands only raised slightly - now I'm not sure whether to attend or not!!!!!

Lesley
 
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