Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-01-2012, 04:21 PM #1
AliM AliM is offline
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Default Difficulty walking: CRPS foot

I'm just hoping there's somebody else who has gone (or is going) through a similar situation and can help me out.

I woke up in December with this in my left foot, and it took until July before I finally found a doc who was able to nail down my CRPS diagnosis. Because it progressed so many months without a diagnosis or focused treatment, it has gotten bad pretty quickly. My new doc put me on Gabapentin, which has been a miracle drug for me. Now sheets and blankets and socks against my foot don't bother me any more, we can rub my foot without problem except for the sesamoid area which is incredibly tender still. (X-rays show a darker spot there--maybe what started this.)

Trying to avoid that sesamoid area has created somewhat of a club foot. And the swelling is CRAZY. Various docs prescribed all sorts of meds since December to try to control the swelling, but not a single thing worked. It's so bad I can't even get a shoe on. I wear an orthopedic walking boot every time I leave the house, which helps take the pressure off the painful ball of my foot and it...well, gives me a shoe to wear. Regardless of what I do or how much I'm on my feet, by 4:00ish my foot and ankle become the size of Texas.

Between the swelling and the tender ball of my foot, walking is excruciating. I dread having to walk across the house, even. Every single step is excruciating. Luckily I'm a former competitive tennis player, so I learned years ago to play through pain, so that's helping me cope. But at the same time, remembering how active I used to be is SO discouraging when I can't even walk 2 steps without pain. Going for a walk with my family is impossible. Half hour of grocery shopping is my limit before the pain and exhaustion makes me snippy and grumpy. (And I certainly don't want to be snapping at my kids or hubby!)

So...what's my future? Will this get better with time? Would physical therapy help? (I'm skeptical about PT with the swelling and sesamoid "injury.") Is there anything I can try that will ever allow me to get back to a somewhat normal existence? (I sure miss tennis, but would be happy to slowly amble someday without pain...)

Has anyone else dealt with this? I know everybody's CRPS is so very different, but I'm hoping for hope...
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Old 08-01-2012, 07:24 PM #2
birchlake birchlake is offline
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Welcome to the forum...

I too have CRPS in my foot. Cause was multiple surgeries in that foot.

And YES, physical therapy, with the right therapist.....can definitely help. I had to go through two PTs though that really didn't have a clue before I found the one that really understood my condition and could help me. And he did. Keep searching for a therapist who can help you. The first question you should ask them is this: "How much do you know about CRPS and how many people have you treated with this condition".

Interesting that gabapentin is my wonder drug too. This condition is very unique where what meds and therapies that might work for one, might not work for the other.

You have to use that foot. Use but do NOT overuse. That is my mantra.

And yes, you can get better. Never lose hope! I was diagnosed in the fall of 2008 and while I still struggle with this condition, I have a routine of therapy and other complementary things that I do that help me "manage" this condition. I also use a pain management doctor, a chiropractor (my hip is tweaked because of my altered gait due to my foot) and a massage therapist. And I am proud to say that with a hell of a lot of work and a good team of professionals helping me, I am better now than I was 4 years ago.

Good luck to you!
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Old 08-01-2012, 07:26 PM #3
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Everyone is different. I would definetly recommend lsb. (lumbar sympathetic blocks) These helped me a little. While I was also placed on a rollabout (shown on my profile)

While swelling is part of this, esp. in the late of day, you can try soaking your foot in epsom salts. I personally did not get much out of pt but it is recommended if you can find one that specializes in rsd.

Welcome to the forum.

Quote:
Originally Posted by AliM View Post
I'm just hoping there's somebody else who has gone (or is going) through a similar situation and can help me out.

I woke up in December with this in my left foot, and it took until July before I finally found a doc who was able to nail down my CRPS diagnosis. Because it progressed so many months without a diagnosis or focused treatment, it has gotten bad pretty quickly. My new doc put me on Gabapentin, which has been a miracle drug for me. Now sheets and blankets and socks against my foot don't bother me any more, we can rub my foot without problem except for the sesamoid area which is incredibly tender still. (X-rays show a darker spot there--maybe what started this.)

Trying to avoid that sesamoid area has created somewhat of a club foot. And the swelling is CRAZY. Various docs prescribed all sorts of meds since December to try to control the swelling, but not a single thing worked. It's so bad I can't even get a shoe on. I wear an orthopedic walking boot every time I leave the house, which helps take the pressure off the painful ball of my foot and it...well, gives me a shoe to wear. Regardless of what I do or how much I'm on my feet, by 4:00ish my foot and ankle become the size of Texas.

Between the swelling and the tender ball of my foot, walking is excruciating. I dread having to walk across the house, even. Every single step is excruciating. Luckily I'm a former competitive tennis player, so I learned years ago to play through pain, so that's helping me cope. But at the same time, remembering how active I used to be is SO discouraging when I can't even walk 2 steps without pain. Going for a walk with my family is impossible. Half hour of grocery shopping is my limit before the pain and exhaustion makes me snippy and grumpy. (And I certainly don't want to be snapping at my kids or hubby!)

So...what's my future? Will this get better with time? Would physical therapy help? (I'm skeptical about PT with the swelling and sesamoid "injury.") Is there anything I can try that will ever allow me to get back to a somewhat normal existence? (I sure miss tennis, but would be happy to slowly amble someday without pain...)

Has anyone else dealt with this? I know everybody's CRPS is so very different, but I'm hoping for hope...
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Old 08-04-2012, 10:53 AM #4
free2frog free2frog is offline
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Quote:
Originally Posted by alt1268 View Post
Everyone is different. I would definetly recommend lsb. (lumbar sympathetic blocks) These helped me a little. While I was also placed on a rollabout (shown on my profile)

While swelling is part of this, esp. in the late of day, you can try soaking your foot in epsom salts. I personally did not get much out of pt but it is recommended if you can find one that specializes in rsd.

Welcome to the forum.
Gabapintin seem to work here too for the most part ( thinking it needs to be increased again) I can go about 4 hours before the swelling starts in the legs/feet/ankle and by the time I get home from work I can barely walk some days, I also fined Epsom salts help with the feet and ankles and the feeling that my ankles are in a vice being crushed, as for the feet they feel like there a hard plastic shell covering my feet and every time I step on them its like stepping on thumb tacks and to think 5 months ago this started with a burning sensation in my wrist after a shoulder surgery
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