fact sheets how interesting?: I have just had a... - LUPUS UK


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fact sheets how interesting?

bev2002 profile image
5 Replies

I have just had a little look through some of the fact sheets people had kindly told me to look through and I cant believe the things I have in common with them especially the problems with feet.

After having gbs and time went on I ended up with flat feet,i have lost all of my arches and get terrible pain in my toes, the only way I can describe it is my toes are broken and to be honest I'm sure I have subluxation the same as I get in other joints with being hyper mobile. My feet are always like blocks of ice, infact I'm always cold and wrapping up in a fluffy dressing gown and fluffy socks. when my friends come to my house they are always complaining how hot it is because my heating is on constantly lol.

I think I've got a lot of questions to ask at my next appointment

5 Replies
Paul_Howard profile image

Hi bev2002 ,

I'm glad to hear that you've found our Factsheets helpful. It sounds like you could potentially benefit from a referral to an NHS podiatrist if there are services in your area. It is worth asking at your next appointment.

You've mentioned having very cold feet, do you experience discolouration and/or pain in your toes due to problems with circulation? This could be a symptom of Raynaud's phenomenon. You can learn more about this and get tips for managing it at lupusuk.org.uk/coping-with-...

bev2002 profile image
bev2002 in reply to Paul_Howard

Hi paul I don't get discolouration in my hands and feet but I do get the numbness,when I mentioned it to the doctor he said it was something called Achenbach syndrome whatever that is

Paul_Howard profile image
Paul_HowardPartner in reply to bev2002

Hi bev2002 . I've not heard of Achenbach syndrome before. I found a bit of information about it here - nejm.org/doi/full/10.1056/N...

LupusKaren profile image

Hi Bev, thrilled you have found the fact sheets interesting. They are for me, the best publications around, and even now, I find myself re-reading them to refresh my memory. You are indeed going to have an interesting appointment next time you meet your medics, at least now, you have some up-to-date, factual information from a very well known Lupus organisation. Goes without saying I hope you don't have Lupus, but you do need explanations, and that is entirely justifiable and right.

Good luck, and be kind to yourself this evening, you have had a lot to take in today, so perhaps a little treat for yourself, you deserve it.

Krazykat26 profile image

I'm with u on the fluffy dressing gown..I practically live in mine!!

I'm so glad that you're questing n finding out about lupus n autoimmune illness..in this tribe the first visit has to be to the armoury so that u can get yourself equipped!! 🗡️🏹⛏️🔨⚔️xx

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