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Ehlers-Danlos Support UK
1,815 members565 posts

Swan neck deformity/ Boutonniere of toes

Hi everyone, I have now developed this problem with the second toes of both feet, also my feet are pointed if you know what I mean with both big toes pointing inward and look as if I'm permanently wearing ballet or stilettos. I have to wear an large orthosis in my left shoe of almost 2inches after failed thr surgery but all I can find on this problem is that it's only found in people with EDS or RA. Has anyone else here developed this and if so have you had treatment or surgery for it? It means my mobility has been seriously affected yet again. X

2 Replies

Hi angelspike. I am so sorry to hear of your symptoms which is causing you serious mobility problems.I'm afraid I cant offer any advice as I'm not familiar with what you describe..

Its difficult to know where to go and who to see when we get the classified 'unexplained' symptoms..In my experience of being ill, with increasing symptoms and disability for years, no doctors have yet found the causes for a lot of my symptoms.I just hope by seeing an actual hypermobility specialist that this will change.

You could ask to be referred to a rheumatologist and take it from there.If hypermobility is suggested you should then look at going to a hypermobility specialist consultant, for if it is hypermobility, EDS, only they will have the knowledge to understand it.

Best wishes x


I discovered that my big toes pointed in and that this makes my high arches collapse even more, which causes pain in hip joints or one of them. I formerly also had pain that was from pelvis twisted causing leg and back pain. This started to happen after childbirth, from my thirties.

If you look up bunions treatment on net, you will find treatments and toe straighteners. I spent days wearing 2 half rubber erasers between my first 2 toes and second toes and it helped straighten them a lot. Relieving a lot of pain and immobility. A simple tip I picked up from the net. God bless that person who put it there. I also now never buy or wear pointed shoes ever again. I still like to have a pair of very deep structured orthotics that stabilise around the heel area and support the arch for wearing in closed in shoes. Barefoot outside on the ground especially grass and sand etc is good to tone up the ligaments and relieves pain in joints. I hope this info helps some people.


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