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A brief update

Posted by wendyn on 4/13/02 at 23:51 (079578)

Just for anyone who still follows my feet....

I had my regular check up with my GP this week, and I brought up the subject of my feet. I told him that I didn't want him to think that just because I never see him about them - that they are okay. I basically quit going to doctors about them - with the exception of the odd trip to the pod for orthotics/custom birks.

My biggest concern is still the RSD related symptoms - the heat, the color changes etc. He asked me if I thought it was progressing, I told him no. It seems to have stablilized a few years ago - and I have periods where I am almost symptom free. Unknown things cause it to flare up periodically. And, when it does - it can be really bad.

To make a long story short, he felt that there wasn't a lot to be gained by referring me to another foot and ankle surgeon - or to an orthopedic surgeon about my back (still gives me a lot of trouble). Bottom line being, that with RSD - it's likely that there is no surgical option for me anyway.

He asked me to go back to physio - specifically to someone who has experience with RSD and lower back problems. He reminded me AGAIN to not gain weight (I don't know why doctors think constantly reminding me of this will help). My weight has been around 117 lbs for about 6 years now, and I've only ever been more when I've been pregnant. I'm glad that I am not overweight because I am 110% sure that the doctors would blame my foot problems on my weight. It seems to irk them that they can't in my case.

Anyway, the doctor was nice - I'll go to physio, and I'll just keep hoping for the best. One day at a time right?

Re: A brief update

Carmen on 4/14/02 at 09:36 (079591)

I am confused...I thought RSD was a constant thing? I thought it just progressed unless being treated.
Sounds like he doesn't think it's 'too urgent' which I guess could be a good thing??
One day at a time for sure...yes.

Re: A brief update

Sharon W on 4/14/02 at 09:58 (079597)

Wendyn,

I'm impressed. Sounds like you've managed to pretty much get RSD under control; that's a remarkable achievement! (And I'm REALLY impressed that you've always maintained your weight at about 116!!!)

I'd never really thought about how RSD might interfere with having surgery in ANY part of the body... but I guess that makes sense.

What I've read about RSD (please correct me if I'm wrong in any of this) is that it usually follows surgery (often foot surgery)or some kind of injury, although I've read a few posts that seemed to say it can develop on its own, with no apparent 'reason' for it except chronic pain. Symptoms include the temperature change thing, and the mottled, blotchy skin thing, and the color change problem, and the fact that the pain moves around, and doesn't necessarily stay in the foot (or wherever it started). I know that the pain is incredibly intense and that it doesn't follow the normal neural pathways. But (if I'm not getting too personal here), what does it FEEL like? I mean, what KIND of pain is it? Is it shooting pain, stabbing pain, zapping pain, electrical pain, throbbing pain, tingling pain, burning pain, numbness pain, intermittent pain, constant unrelentless pain, or all or any combination of the above?

Also, how did they diagnose your RSD? I mean, was it by checking signs and symptoms, like the stuff I listed above, or does it show up on (for example) NCV tests?

Sorry if this is too many questions. I've always been a bit to curious for my own good...

-- Sharon

Re: A brief update

Carole C in NOLA on 4/14/02 at 11:16 (079603)

Wendy, I agree. I think that some doctors unintentionally blame lack of results of their treatment (for almost anything) on overweight. That was probably his knee-jerk response, but then he looked at you and realized he couldn't blame your lack of progress on overweight so he made that comment.

Personally, I have experienced a tendency for some doctors to blame things on my overweight that bothered me when I was slender too. The doctors I've seen tend to ignore any statements I might make to that effect, and tend to take these symptoms less seriously than they did when I was more slender.

I hope this new physio will work for you! I hope that I understand you correctly, that he helped you to locate someone with experience in RSD and back problems. If so, I have great hopes that this may help you a lot.

Carole C

Re: A brief update

Suzanne D on 4/14/02 at 12:56 (079615)

Dear Wendy,

I have been wondering how your feet were as I know you remarked a time or two lately that you had had a bad day. I wasn't sure if that was related to your feet, but was concerned for you at any rate.

I am glad that your problems seem to have stabilized and really hope for you that the physio will help you with your back problems and possible RSD symptoms. I know that back problems are no fun.

It's odd: I have gone to a chiropractor for my back for 9 years, and then when the PF began and I started wearing Birks all the time, my back got better. Not to go on and on about myself, but then when my knees really started bothering me and it seemed the Birks felt too hard, I began wearing the Birk inserts in SAS shoes. My knees are better, my feet are getting better, but now my back is bothering me a little like it used to.

There is a kids' game at a pizza chain around here in which these alligators come out, and the object is to hit them on the head with a rubber mallet to make them go back in. As soon as you get rid of one, two more pop out. Sometimes I feel like that's the way it is with physical problems relating to feet, back, etc.!

I do wish you well, Wendy, and hope that the new treatment helps and that any problems that occur will be farther and farther apart.

Take care,
Suzanne :-)

Re: A brief update

wendyn on 4/14/02 at 13:49 (079618)

No Carole, actually he suggested that I find someone who has a lot of experience with it.

Thanks a lot right!?

My sister in law is a receptionist at a downtown physio place, I think I will give her a call.

Re: A brief update

Carole C in NOLA on 4/14/02 at 14:58 (079623)

He sounds pretty worthless. He could at least call some physio friends and ask around about who would be good, more easily than you can. Grrr

Carole C

Re: A brief update

Carole C in NOLA on 4/14/02 at 15:12 (079624)

ROFL!! I love your comparison with the kid's game and hitting the alligators on the head with a mallet.

I noticed when wearing my custom orthotics, that my knees hurt a lot less. On the other hand, my knees and hips bothered me for a day a couple of days after I wore the NB 854's for a few hours (before returning them). I went back to my custom orthotics and felt better but got large blisters in my arches because they hug them so close. Not a big deal, though, and that skin has toughened up a bit by now. When I stopped wearing custom orthotics so much, and started wearing Free Times my knees hurt more again and so did my back, for a while. It's definitely like hitting alligators on the head.

Carmen's article about the whole body approach to pronation started me thinking. When the gait is messed up, the knees tend to rotate when you walk (there's a great diagram in that article, illustrating that and it's just what I felt was happening with my legs too... and would account for both knee and hip strain while walking, and maybe could relate to back pain too).

Carole C

Re: Carole

wendyn on 4/14/02 at 17:52 (079646)

Well, for the most part I really like him as a doctor. Although, you're right - he probably could have found someone in particular.

I will check with sister-in-law, and if she doesn't have any thoughts I will call him back and ask him for someone specific.

Re: A brief update

Suzanne D on 4/14/02 at 20:36 (079663)

Yes, that is a good article, Carole! Thanks for reminding me about it. I saw Carmen's post earlier and did not have time to read it then. I've just finished reading and it does make sense.

Carmen wrote in another post that she was 31 and as flexible as a 90 year old. That made me remember a time when I had to take a summer PE class at the age of 25. The teacher was into giving us all kinds of tests, not really explaining a lot about how they affected us, but it was interesting anyway. I remember how inflexible I was, even at 25. I was skinny, but I just could not bend the way the others did! Most were a few years younger than me, but there was a 40 year old man who could outdo me every time.

I imagine that inflexibility has been at the root of back problems and this PF. I knew it was embarassing to be at the bottom of the class in the tests, but I didn't know how it could affect my health throughout life. I just never was athletic, and so I chalked it up to that, and didn't think much about it.

My younger daughter is quite a bit like me - not good in sports, not a fast runner in PE, etc. But she started taking ballet and tap two years ago and loves it and does well. In the fitness tests in her PE class last year, she was near the bottom in the running and jumping, pull-ups, etc., but only one girl in the class beat her in the flexibility test, and that was by 1'! I was proud of that for her and am encouraging her to continue with the dance as I think it is good for her.

I guess I need to stretch more; maybe it isn't too late!

Suzanne :-)

Re: A brief update

Carole C in NOLA on 4/14/02 at 21:55 (079669)

I'm sure it's not too late, Suzanne! :)

When I was a kid I was not very athletic either, especially in my teenage years. I was always the second to last one chosen if we chose teams. But, I was unusually flexible at that age. When I was 13, I found I could put both heels behind my neck during exercise classes in PE, which used to astonish the other kids. I could hyper-extend my knees, and touch my thumb to my arm, and all those silly tricks that kids try to do.

But now, as I age I feel my tissues are losing elasticity and becoming less flexible. That is natural, I would think. But I need to start moving and stretching too, so that I can stay limber. Actually I've noticed since I got PF that it feels good to do stretching exercises.

When I saw the doctor about my heart palpitations, he had me make an appointment for a more thorough physical on May 1st. If he wants to put me on hormones (like a lot of women my age are on) that might increase my flexibility. I don't really think I need them otherwise, though.

Carole C

Re: Flexibility

wendyn on 4/14/02 at 23:19 (079671)

Carole, a number of us seem to be overly flexible...for me - I think it has a lot to do with why I hurt myself so easily.

AT my checkup my doctor was poking around my knees. He asked if they bother me and I told him sometimes. Apparently my knee caps move all over the place - I've also been told I have hypermobile feet...and I too can do some funny yoga stuff.

Re: Flexibility

Kathy G on 4/17/02 at 09:25 (079965)

For what it's worth, I'm extremely flexible, too. One day the Podiatrist walked in when I had my foot up so that I could examine the bottom of it and he said that 90% of his patients couldn't get into that position! Of course, he didn't go on to say whether that was good or bad! I'm not like you, though, Wendyn.

It's very interesting. My husband who is very athletic and, thank God, seldom has an ache or pain, has very little flexibility. My son, who inherited my husband's athletic ability and not mine (Thank God again!), is extremely flexible. When he was in high school and they do those tests that Suzanne was talking about, he was more flexible than some of the girls which is very rare. But he frequently suffers from muscle and back aches. So does flexibility cause more aches? And does it have any correlation to athleticism? Or, I could continue on my philosophical discussion, if a tree falls in the woods and no one is there, does it make any noise? Would a person with PF necessarily be walking in the woods in the first place? Okay, I'll just shut up!!!

Re: A brief update

john h on 4/19/02 at 09:13 (080269)

116 Lbs and blame your foot problems on weight?????? must be some Voodoo doctor that would do that Wendy. Many people would die to weigh 116 lbs. Yesterday I saw a 4 year old on TV that weighed 202 lbs. Mom said she had a fit if she was not fed every three hours-things like chips,candy,etc. Child could only take six steps and was out of breath.

Re: A brief update

Carmen on 4/14/02 at 09:36 (079591)

I am confused...I thought RSD was a constant thing? I thought it just progressed unless being treated.
Sounds like he doesn't think it's 'too urgent' which I guess could be a good thing??
One day at a time for sure...yes.

Re: A brief update

Sharon W on 4/14/02 at 09:58 (079597)

Wendyn,

I'm impressed. Sounds like you've managed to pretty much get RSD under control; that's a remarkable achievement! (And I'm REALLY impressed that you've always maintained your weight at about 116!!!)

I'd never really thought about how RSD might interfere with having surgery in ANY part of the body... but I guess that makes sense.

What I've read about RSD (please correct me if I'm wrong in any of this) is that it usually follows surgery (often foot surgery)or some kind of injury, although I've read a few posts that seemed to say it can develop on its own, with no apparent 'reason' for it except chronic pain. Symptoms include the temperature change thing, and the mottled, blotchy skin thing, and the color change problem, and the fact that the pain moves around, and doesn't necessarily stay in the foot (or wherever it started). I know that the pain is incredibly intense and that it doesn't follow the normal neural pathways. But (if I'm not getting too personal here), what does it FEEL like? I mean, what KIND of pain is it? Is it shooting pain, stabbing pain, zapping pain, electrical pain, throbbing pain, tingling pain, burning pain, numbness pain, intermittent pain, constant unrelentless pain, or all or any combination of the above?

Also, how did they diagnose your RSD? I mean, was it by checking signs and symptoms, like the stuff I listed above, or does it show up on (for example) NCV tests?

Sorry if this is too many questions. I've always been a bit to curious for my own good...

-- Sharon

Re: A brief update

Carole C in NOLA on 4/14/02 at 11:16 (079603)

Wendy, I agree. I think that some doctors unintentionally blame lack of results of their treatment (for almost anything) on overweight. That was probably his knee-jerk response, but then he looked at you and realized he couldn't blame your lack of progress on overweight so he made that comment.

Personally, I have experienced a tendency for some doctors to blame things on my overweight that bothered me when I was slender too. The doctors I've seen tend to ignore any statements I might make to that effect, and tend to take these symptoms less seriously than they did when I was more slender.

I hope this new physio will work for you! I hope that I understand you correctly, that he helped you to locate someone with experience in RSD and back problems. If so, I have great hopes that this may help you a lot.

Carole C

Re: A brief update

Suzanne D on 4/14/02 at 12:56 (079615)

Dear Wendy,

I have been wondering how your feet were as I know you remarked a time or two lately that you had had a bad day. I wasn't sure if that was related to your feet, but was concerned for you at any rate.

I am glad that your problems seem to have stabilized and really hope for you that the physio will help you with your back problems and possible RSD symptoms. I know that back problems are no fun.

It's odd: I have gone to a chiropractor for my back for 9 years, and then when the PF began and I started wearing Birks all the time, my back got better. Not to go on and on about myself, but then when my knees really started bothering me and it seemed the Birks felt too hard, I began wearing the Birk inserts in SAS shoes. My knees are better, my feet are getting better, but now my back is bothering me a little like it used to.

There is a kids' game at a pizza chain around here in which these alligators come out, and the object is to hit them on the head with a rubber mallet to make them go back in. As soon as you get rid of one, two more pop out. Sometimes I feel like that's the way it is with physical problems relating to feet, back, etc.!

I do wish you well, Wendy, and hope that the new treatment helps and that any problems that occur will be farther and farther apart.

Take care,
Suzanne :-)

Re: A brief update

wendyn on 4/14/02 at 13:49 (079618)

No Carole, actually he suggested that I find someone who has a lot of experience with it.

Thanks a lot right!?

My sister in law is a receptionist at a downtown physio place, I think I will give her a call.

Re: A brief update

Carole C in NOLA on 4/14/02 at 14:58 (079623)

He sounds pretty worthless. He could at least call some physio friends and ask around about who would be good, more easily than you can. Grrr

Carole C

Re: A brief update

Carole C in NOLA on 4/14/02 at 15:12 (079624)

ROFL!! I love your comparison with the kid's game and hitting the alligators on the head with a mallet.

I noticed when wearing my custom orthotics, that my knees hurt a lot less. On the other hand, my knees and hips bothered me for a day a couple of days after I wore the NB 854's for a few hours (before returning them). I went back to my custom orthotics and felt better but got large blisters in my arches because they hug them so close. Not a big deal, though, and that skin has toughened up a bit by now. When I stopped wearing custom orthotics so much, and started wearing Free Times my knees hurt more again and so did my back, for a while. It's definitely like hitting alligators on the head.

Carmen's article about the whole body approach to pronation started me thinking. When the gait is messed up, the knees tend to rotate when you walk (there's a great diagram in that article, illustrating that and it's just what I felt was happening with my legs too... and would account for both knee and hip strain while walking, and maybe could relate to back pain too).

Carole C

Re: Carole

wendyn on 4/14/02 at 17:52 (079646)

Well, for the most part I really like him as a doctor. Although, you're right - he probably could have found someone in particular.

I will check with sister-in-law, and if she doesn't have any thoughts I will call him back and ask him for someone specific.

Re: A brief update

Suzanne D on 4/14/02 at 20:36 (079663)

Yes, that is a good article, Carole! Thanks for reminding me about it. I saw Carmen's post earlier and did not have time to read it then. I've just finished reading and it does make sense.

Carmen wrote in another post that she was 31 and as flexible as a 90 year old. That made me remember a time when I had to take a summer PE class at the age of 25. The teacher was into giving us all kinds of tests, not really explaining a lot about how they affected us, but it was interesting anyway. I remember how inflexible I was, even at 25. I was skinny, but I just could not bend the way the others did! Most were a few years younger than me, but there was a 40 year old man who could outdo me every time.

I imagine that inflexibility has been at the root of back problems and this PF. I knew it was embarassing to be at the bottom of the class in the tests, but I didn't know how it could affect my health throughout life. I just never was athletic, and so I chalked it up to that, and didn't think much about it.

My younger daughter is quite a bit like me - not good in sports, not a fast runner in PE, etc. But she started taking ballet and tap two years ago and loves it and does well. In the fitness tests in her PE class last year, she was near the bottom in the running and jumping, pull-ups, etc., but only one girl in the class beat her in the flexibility test, and that was by 1'! I was proud of that for her and am encouraging her to continue with the dance as I think it is good for her.

I guess I need to stretch more; maybe it isn't too late!

Suzanne :-)

Re: A brief update

Carole C in NOLA on 4/14/02 at 21:55 (079669)

I'm sure it's not too late, Suzanne! :)

When I was a kid I was not very athletic either, especially in my teenage years. I was always the second to last one chosen if we chose teams. But, I was unusually flexible at that age. When I was 13, I found I could put both heels behind my neck during exercise classes in PE, which used to astonish the other kids. I could hyper-extend my knees, and touch my thumb to my arm, and all those silly tricks that kids try to do.

But now, as I age I feel my tissues are losing elasticity and becoming less flexible. That is natural, I would think. But I need to start moving and stretching too, so that I can stay limber. Actually I've noticed since I got PF that it feels good to do stretching exercises.

When I saw the doctor about my heart palpitations, he had me make an appointment for a more thorough physical on May 1st. If he wants to put me on hormones (like a lot of women my age are on) that might increase my flexibility. I don't really think I need them otherwise, though.

Carole C

Re: Flexibility

wendyn on 4/14/02 at 23:19 (079671)

Carole, a number of us seem to be overly flexible...for me - I think it has a lot to do with why I hurt myself so easily.

AT my checkup my doctor was poking around my knees. He asked if they bother me and I told him sometimes. Apparently my knee caps move all over the place - I've also been told I have hypermobile feet...and I too can do some funny yoga stuff.

Re: Flexibility

Kathy G on 4/17/02 at 09:25 (079965)

For what it's worth, I'm extremely flexible, too. One day the Podiatrist walked in when I had my foot up so that I could examine the bottom of it and he said that 90% of his patients couldn't get into that position! Of course, he didn't go on to say whether that was good or bad! I'm not like you, though, Wendyn.

It's very interesting. My husband who is very athletic and, thank God, seldom has an ache or pain, has very little flexibility. My son, who inherited my husband's athletic ability and not mine (Thank God again!), is extremely flexible. When he was in high school and they do those tests that Suzanne was talking about, he was more flexible than some of the girls which is very rare. But he frequently suffers from muscle and back aches. So does flexibility cause more aches? And does it have any correlation to athleticism? Or, I could continue on my philosophical discussion, if a tree falls in the woods and no one is there, does it make any noise? Would a person with PF necessarily be walking in the woods in the first place? Okay, I'll just shut up!!!

Re: A brief update

john h on 4/19/02 at 09:13 (080269)

116 Lbs and blame your foot problems on weight?????? must be some Voodoo doctor that would do that Wendy. Many people would die to weigh 116 lbs. Yesterday I saw a 4 year old on TV that weighed 202 lbs. Mom said she had a fit if she was not fed every three hours-things like chips,candy,etc. Child could only take six steps and was out of breath.