Feet and EDS/hypermobility (and a little archery babble on the side)

In the the never-ending saga of me and doctors, yesterday was my appointment with the podiatrist.

Due to my hypermobile joints, my feet have always been a bit flat, rather shallow and with a tendency to roll inwards. The rolling inwards thing always seems a bit odd because most of my ankle injuries have been caused by me rolling outwards on my ankles and spraining or dislocating them. I have learned to accept that I am just odd, though.

As part of the project to check every system in me and make sure that I’m getting the best care possible to keep me mobile, it was decided that a podiatrist should be seen. This was the decisions of the specialist in London: cue lots of grumbling from the local rheumy about whether it is necessary and whether it is cost-effective. Hmmf. Luckily it’s my GP who controls my access to podiatry services 🙂

So yesterday I trundled down so they could give me the once over. For the first time, someone actually read the medical report from London and made an attempt to understand it. That endeared her to me immediately.

Then she turned around and said, “So you’re not just hypermobile as your form says, they’re saying you actually have Ehlers-Danlos, correct?”

I blushed, mumbled and nodded because throughout the time that all of the joint problems have been going on, most of the doctors are unwilling to use the word “hypermobile” let alone describe it as EDS. The podiatrist then explained that if the orignal referral note has said EDS then I would have got to the rheumatology podiatrist rather than the orthopaedic, would I mind if she got her colleague in to observe and take over my case? Her colleague was excited to be given her first EDS patient so I am now seeing a woman who specialises in people with funny shaped feet caused by connective tissue problems rather than bone malformations. Score!

The podiatrist asked whether I had ever been given orthotics before. Um, no, what?

She was horrified that, despite all the doctors when I was a child, I had never been referred to a podiatrist or had any kind of inserts in my shoes. She doesn’t often see adults like me who haven’t had basic foot care! Heh.

I did the usual walking around, having people tap hammers on bits of my feet and legs and reflex checks. The podiatrist then made me lie down on my front with my feet hanging off the bed (my poor back!) so that she could take casts of my feet while holding then in the ‘correct’ position. Not totally comfortable, but not very painful either. Hot plaster of Paris feels really quite odd on the feet!

The casts will be used to make inserts in my shoes to put my feet into the correct position. We can’t fix my feet (it’s too late for that – orthotics as a child might have helped, apparently) but we can get inserts that will get me walking correctly and save some of the wear on my joints, hopefully reducing my future pain problems. The podiatrist is getting them made of medium density something with shock-absorption instead of hard plastic, which should hurt my feet less.

It was weird having someone prefer using the EDS classification rather than “just a bit bendy” or “hypermobile” because almost every doctor that I’ve seen over the years has been reluctant to say that anything is happening, never mind giving it a name. It’s even stranger to realise that this is one situation where using the name rather than a euphemism would have got me the right treatment immediately rather than going to the wrong person: the doctors seem to use their fear of me “seeing someone inappropriate” as the reason why they refuse to put EDS on any of my forms.

So, it was informative and useful, something that I didn’t expect. The new inserts will be ready in six weeks and my new podiatrist will call me for fitting then. Hopefully this is a yay thing.

I wrote the above yesterday and mailed it to myself at home. It took me all afternoon, five words at a time, because I was so busy. Just to make the afternoon really fun, I ended up staying for two and a half hours after my official leaving time to do extra analysis on some things. Christmas at the head office of  a retail company ain’t fun.

Somebody has temporarily donated me a sign that says “Things are getting worse. Please send chocolate.”

It’s totally appropriate.

In more cheerful news, it was the archery Christmas do on Thursday night. We slaughtered paper reindeer and ate food. It was really good fun and I remembered all over again why I love archery. The shooting is fun and I enjoy the challenge, but it’s also the social side of it that I enjoy. I will definitely need to find a club no matter where I may end up living in the future.

Somebody was trying to entice me with the idea of field archery, which I am very interested to try out…

8 Comments (+add yours?)

  1. Trackback: EDS Alert Newsletter No. 22 « EDS Alert Newsletter
  2. Sara
    Jan 10, 2008 @ 08:22:35

    hey.. i found your blog posting via this link to various other EDS related blogs..

    it piqued my interest b/c i’m having a hell of a time with my orthopedic surgeon doctor and my foot…

    i broke my foot last yr (oct 2nd 06). not even bad enough to show up on x rays but bad enough i couldnt walk or bear weight AT ALL. bone scan revealed i had broken it.. but i had this sharp pain in the ball of my foot mostly on top..durin the whole process. My foot had bent itself in half..literally, when i broke it. i know i have loose ligaments as it is (mom and sis got diagnosed for type 3 EDS.. genetist said i have it too but i havnt gotten the full diagnosis yet)
    took me 6 months on crutches before i could walk again.. he just said i was “slow to heal”

    subsequently, iv had horrid nerve pain..mimicing a neuroma … after him telling me its not nerve pain, to gettin a cortisone injection…(which HURT for 3 days, couldnt walk..but then was better for 2 months..no pain!) then him eventually ordering an MRI to look for a neuroma.. which apparently revealed NOTHING.. its now been almost a YEAR of not being able to work normal shifts and being in horrible pain whenveer i put my foot down…..and he just had the gall to tell me its weight related. and its probably just “soft tissue damage’ and it’ll get better with time (…why then has it actually gotten way worse?)

    he ordered an orthotic.. they fit me for it by puttin my foot in these foam molds. but i think its a hard plastic one.. i havnt goten it yet.
    my mom has the same nerve pain in her foot..and a lot of issues.. and her orthotic made things 20xs worse..
    makes me wonder if she had a podiatrist who know what eds was, if maybe the results wouldda been different..

    so now i dont know what to do.. i have regular insurance, and can persue other things. maybe getting a full on diagnosis would sevre me well (moms genetists wouldda given me the diagnosis, garunteed. mom told him about me and he said i have it.. – freq ligament and tendon injuries, hypermobile, no dislocations but i can EASILY tweak my hips and shoulders to the verge of dislocation and i have pretty bad hip pain from “loose ligaments” – but i hvae different insurance now so i cant go to him..,slllowwww healing time, anesthetics dont always work right and wear off quickly, like in 5-10min..dentist doesnt believe me..lol etc…)

    any advice you might be able to give me?
    i dont know where to go from here.. but im desparate about getting my foot working.. i’m about to start nursing school..and i NEED my feet! i work 12 hr shfts as it is as a CNA and have a horrid time.. eating advil like mad and icing it all the time..

    it feels like a neuroma, im thinkin maybe its my EDS mimicing a neuroma.. maybe b/c the joints in my foot are loose (PT told me that), and when i bear weight, it shifts things so it pushes on the nerve?)

    but my orthopedic surgeon… told me he cant do anything. and damn near eluded to it being in my freakin head.

    help? =)

    sorry this is horribly long…!


  3. archerygirl
    Jan 20, 2008 @ 16:09:41

    Hi Sara,

    I’ve been trying to work out what kind of advice I can give or even whether I can give any. I have absolutely no clue about health insurance in the USA (I’m over the Pond in the UK) but I would say that, if you can, you should pursue the EDS diagnosis and see whether you can find a rheumatologist. Over here, it’s the rheumys who know about connective tissue disorders like EDS and not the orthopaedic guys.

    Hell, the last time I saw an orthopaedic surgeon he just referred me on the rheumy I am currently seeing! They’re great for the breaks, not so much for the non-bony parts of us.

    There are a few support groups for people like us and they may also be able to give you some ideas and information. Check out the HMSA and the EDS Support Group. Both of these are based in the UK, but I know that there are a number of people on their message boards from around the world and they’re all very helpful and supportive.

    The “it’s all in your head” comments are the most hurtful ones imaginable. I’ve had them from one particularly clueless family doctor and I felt terrible for days afterwards. Thing is, this isn’t in your head. You’ve got a connective tissue disorder and if you’re on your feet all day particularly after a traumatic break then it’s no wonder that there might be problems! The doctors need to be finding ways to help you retain your current life-style, working with you rather than against you.

    I can testify that, if the ligaments in your feet are loose, then you will have some shifting in there. My feet are pretty and narrow with a nice arch to them when I hold them up in the air. Put them on the floor and they immediately flatten and widen as the ligaments fail to keep everything in that lovely normal shape. A good podiatrist, one who knows about EDS, and a competent rheumy who also knows about EDS are essential for people like us so if there is any way that you can get hold of them, you really need to go for it.


  4. Trackback: EDS Alert Newslettre No. 24 « EDS Alert Newsletter
  5. Archery Tips
    Jun 13, 2008 @ 15:29:34

    I’ve found great advice here. thank you for this, I really appreciate it.


  6. Liza
    Apr 22, 2009 @ 02:56:40

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  8. K
    Aug 28, 2012 @ 23:30:56

    Sara, did you ever find any help? I can relate–I have had horrible foot pain for almost four years in both feet and went through five doctors (podiatrists and an orthopedic MD) and they just said I had flexible feet and I had to live with it. Being an elementary school teacher, I can’t tell you how much of a struggle it was to just get through the day. People made me out to be a diva or a drama queen when I had to do yard duty on a stool and send students to run simple errands for me! Long story short, after adopting a baby and taking on those responsibilities, i ended up giving in and following doctors’ suggestions and getting double plantar release surgery on both feet. Guess what? The pain returned, only it got worse! It now was moving up into my ankles!

    So pretty much I was spending my day crawling from one room to another. Finally, I went to see a rheumatologist who diagnosed me withe Hypermobility Type 3 EDS… The pain doctor put me on Gabapentin (3750 mg–beyond suggested limit!) and Nabuematone (1500mg) as well as some NSAID gel to rub into my ankles if they get sore. I am still not without pain… I have Vicoden to take if needed (tough with a baby). I do water therapy 4 days a week… I am 38 and kind of freaked out about the future, but at least I have a diagnosis finally! I am not sure about adding more meds to what I already have–I am seeing dr. again on Friday.

    I would suggest you join the EDNF (Ehlers Danlos National Foundation) support group. I just joined a few days ago, and it is amazing how suddenly you don’t feel as alone once you get feedback from a question!

    I wish you the best of luck!


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