Swan neck deformity/ Boutonniere of toes - Ehlers-Danlos Sup...

Ehlers-Danlos Support UK

2,991 members940 posts

Swan neck deformity/ Boutonniere of toes

angelspike profile image
2 Replies

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

Written by
angelspike profile image
angelspike
To view profiles and participate in discussions please or .
Read more about...
2 Replies
Tillyray profile image
Tillyray

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

anna8 profile image
anna8

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.

Not what you're looking for?

You may also like...

Diagnosed with Joint Hypermobility Syndrome but I’m not sure.

Hi everyone. I’m looking for your thoughts. I have been suffering from considerable pain for a year...

Pain in the Neck!?!?

Hi! I've never been diagnosed with craniocervical instability (CCI) but I do think that I possibly...

No Quality of Life. No Hope left.

I'm so miserable I don't know where to start! I posted on here for first time in December about how...

Afraid of vEDs

Hi all, I’m looking for some insight or opinion from those who have been through this. I am 23...

Diagnosis?

Hi, I'm new here and I was wondering if anyone could help me out at all? I've been having bad pain...