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We're so quiet! So...QUESTION TIME. [Apr. 27th, 2008|03:57 am]
Clubfoot Discussion Community

clubfeet

[prettyh]
[mood |sleepysleepy]

Hi, guys - sorry this comm is so quiet, but there don't seem to be many of us here on LJ. I wish there were more people aware of our group, because I'm sure we could be helpful to one another.

I'm just posting to check in with those who ARE here to ask a general question or two, for reference. All of our cases are probably very different, so I thought it might be useful to compare some notes!

1) Do you take any medications to control your pain? If so, what?
2) Are there things you find you simply cannot do because of your feet?
3) What solutions work best for you when you're having an especially bad day with your legs?


I'll answer first, since I'm the one being nosy enough to ask. :)


MEDICATIONS:
Yes. I do. I didn't for a long time. I had my surgeries (two on each foot) before the age of six, and was in casts and splints and those shoes with the bar between them for years afterward, but I didn't actually start managing the pain by way of pharmaceuticals until I was in my 20s. (I'm 31 now.) It's hard for me to imagine how I dealt with it for all those years without, actually - any time I would go to the zoo with school or an amusement park with my family, I would know I'd be unable to walk for a day or two afterward, and I just...dealt. Of course, in my 20s I developed FMS, which made things worse, so I knew I'd have to at least manage my pain overnight so I could rest and function the next day.

I've taken Naproxen/Anaprox and various other NSAIDs over the years (like Celebrex) without any success. They did help with the swelling a bit, but not the pain.

I now take Dilaudid 2mg PRN, which is some pretty major pain medication (hydromorphone, which is more potent than morphine, from what I understand). It doesn't mean I can walk after a long day at work or other activity, but it DOES mean I'm not up all night crying from the throbbing in my ankles, at least.



LIMITATIONS:
Yes, although thankfully they're mostly things that don't compromise my quality of life in any big ways. I can't get my feet into skates of any kind, or ski boots. I usually can't wear high heels of any description (I used to be able to wear them for short periods of time if I had to be dressed up; now it's virtually impossible to tolerate the pain of standing in them for more than ten minutes). And I can't have a job that requires me to stand or walk too much; I'll be bed-ridden the next day. Even a shift that's three hours long, if too much is spent on my feet, will cripple me for a day or two afterward. I'm lucky to finally be in a job (in a medical clinic) that allows me to break up my activity with long periods of sitting; I spend probably 2/3rds of my workday at my desk, which usually means I'm only a little achy when I get home & am usually back to fighting strength for the next day.

That's been the hardest thing, I think. Finding a suitable job. I want to finish my schooling someday to be a nurse, and I'll have to be very careful about which area I choose; obviously something like the ER is out of the question. I'll need something that allows me to stay off my feet for enough time that I don't disable myself and end up having to crawl around my house for days at a time (and yes, I've had to do that a lot in the past - last summer I worked part time at a store for about two months that had me standing for my whole shift, from 4-6 hours at a time, and I had a hard time even getting to my car at the end of the day; I ended up having to buy a cane, and I couldn't go out anywhere other than to work and back! It SUCKED!).



SOLUTIONS:
Aside from pain meds, which aren't a feasible solution all the time when I need to drive or be at work (they make me nauseated and drowsy), I ice my ankles a lot. I keep them elevated whenever I'm home. And I actually find that gentle yoga helps me a little. I have to be careful, of course, because it's easy to strain yourself and hurt your ankles MORE if you stretch too far or weight-bear too much, but it seems to help with my balance. That's key, since I have two different sized feet and my legs are different lengths (which is brutal for my hips and back, as you can imagine.)

So what about you guys? Have you had surgery, or did you have something else done? What do you do for a living, and how do you deal? Any magic solutions you've found that are worth sharing?

I look forward to reacquainting myself with all of you. :)
linkReply

Comments:
[User Picture]From: saturn939
2008-04-27 01:18 pm (UTC)
1. Medication -- No, I don't take any medication. It was actually years of pain before I even realized that was an option (no one ever suggested, here, take some Aleve, and it just . . never occurred to me on my own). Now I don't like taking medications in general, so if my foot starts hurting, I break out the old trusty Ace bandage.

2. Limitations -- Yeah, I can't wear high heels, either. My ankle just isn't strong enough to support me walking in them. Shoe shopping in general is a huge pain because I have to buy two pairs and make sure I can find a pair of shoes I like that even available in both sizes that I need. Walking long distances has gotten better as I've gotten older, but I still couldn't have a job that kept me on my feet all day, either. In addition to the all the common, don't push your feet too hard stuff limitations, I have kind of a silly one. You know that style that's back in right now? The 3/4 leggings with the teeny tiny flat shoes that are so small you can see the top part of the toes?

I got so bummed summer clothes shopping yesterday because I'd really love to wear that style, but the shoes are so fitted that I can't find ones that work for both my feet, and my left calf is so tiny that the 3/4 leggings just look weird and even kind of exaggerate the size difference. Oh, well. :(

3. Solutions -- Again, trusty Ace bandage. Or breaking out the crutches for a couple of days to let the bad foot rest. I couldn't stand to ice my ankle (it's really sensitive to cold), but warm packs are sometimes nice.



I had two or three surgeries when I was little, casting, etc. I work as a secretary, and I get to sit down pretty much all day. No magic solutions, sorry. :(

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From: (Anonymous)
2008-06-03 08:23 pm (UTC)
the Dr I have been seeing will only give me IBprophrin nothing else. I have has at least 5 surgeries that I was little than the last when I was 18 .. the last operation fused my ankle. currently I am trying to find a new DR that knows more about club feet. if I walk for more than an hr my feel will really hurt. the Dr I am currently seeing wanted to put a lift in my shoe so I would no lean to the left ( but my ankle is fused so my foot does not turn) I am afraid he does know know what he is doing. when I was younger I was part of the Shriner's hospital which I loved)
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From: (Anonymous)
2010-01-08 06:57 am (UTC)

Hi

My mom stumbled across the site. I don't have a live journal, so I will just comment anonymously. Anyway I have ABS, Amniotic band syndrome, which affected all fingers on my right hand except my thumb, and all on my left hand. Also a lot of my toes. The bands wrapped around my ankles, almost causing me to lose my right foot from the ankle down, had I not been born two months premature. I have bilateral club feet. My poor mom! The things she went through. I had foot surgeries a little after I was born and up until around 1 or so and also casts. Not sure how long I had them on. Anyway that's just a brief background, oh and I'm 27 now. I've actually not met anyone, that I know of, that has had the same situations as me. I used to think I was the only person this happened to, until I found a website where other people who had ABS and Clubfeet could go.

Now on to the questions;

1) I don't take anything other than tylenol, aleve, ibuprofin or the like. Never thought about taking something stronger.
2) I cannot tiptoe really at all, I definitely can't wear heels, even a 1inch heel is too much, I can't roller blade, ice skate, or skateboard. Have not tried snowboarding or skiing, but I assume they put lots of pressure on your ankles as well. My ankles just aren't strong enough and it hurts so bad I can't do those things. I also cannot stand on my feet for very long as they start to hurt a lot. An awful lot! When I went to Europe and had to walk around all day for like 10 hours, my feet hurt so bad I just wanted to stop where I was and not continue on. I cried almost every night.
3) On an average day, I don't stand often because my job requires me to sit. Thankfully. But on days when I do a lot of walking I elevate my feet, take some ibuprofin and sleep it off. I may be sore the next day, but I am not aware of any other way of making my feet feel better. I tried to be some walking shoes, that cost way too much and that did not help. I refuse to wear some horrible looking orthotic, no offense to anyone who does, but I'd rather be in immense pain and cry. Now if I could find something cute to put on my feet that would make them feel great, that would make me happy.

So those are my answers.
(Reply) (Thread)
From: (Anonymous)
2010-01-08 07:01 am (UTC)

Re: Hi

oh and I forgot, my right foot is about three sizes smaller than my left. But I just wear the same shoe size, It generally is ok. I can't wear some shoes, but oh well. My left foot is a size maybe a little smaller than a 7 and my right is a size 4.
(Reply) (Parent) (Thread)
From: (Anonymous)
2010-06-16 09:28 pm (UTC)

Re: Hi

You might want to check out www.adultclubfeet.blogspot.com - it's very current, and informative, to boot!

Notumbo
(Reply) (Parent) (Thread)
From: ngplant
2013-11-08 10:59 pm (UTC)
Hi. I'm 40-something and I am entering a new phase where club foot is starting to interrupt my life due to increased foot pain and back pain and neck pain, and ....

What have I done in the past?
Bicycle--pedals adapt to stiff ankles--I will bicycle 2 blocks rather than walk sometimes. it works for me.
Ignore problem, abuse myself physically on occasion, and spend a few days in pain. Honestly, beer and ibuprofen got me through much of this.
And I learned what I could not do: walk more than 0.5 to 1 mile all at once. Fine if i walk and sit and walk and sit and break it up a bit.
I don't mess with my walking limit as much as I used to.

So, now I'm trying some new things:
Massage to calm my muscles so that my back does not hurt when my feet hurt--else, I get in a negative feedback loop that leads to muscle stress everywhere
I'm trying chiropractic now. I think the doctor is experimenting--I'm fine with that. But, she has been loosening my feet and now they are more apt to get inflamed and sore--back to the advil and beer even though I'm trying not to do this too much so I can pay attention to changes.
Maybe I need to cut back on the abusive things: surfing with fins, windsurfing--ok, I will consider this

what's next:
More surgery? tempting.
Prosthetics? also tempting on painful days
Stronger drugs? I'd rather not, but?
More beer? I like IPAs. They are strong and make me happy
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