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Old 11-19-2008, 07:04 PM   #1
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why does the pain in my feet get worse after I am off them for awhile

why does the pain in my feet get worse after I am off them for awhile?Ihave been diagnosed with PN which they say is due to undiagnosed diabetes type 2. At times I can barely walk due to the numbness and pain.

 
Old 11-20-2008, 10:49 AM   #2
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Re: why does the pain in my feet get worse after I am off them for awhile

Dear sidekick01, being not diabetic, like me, you have idiopathic neuropathy. Have been like this for a couple of years with numbness and burning in my feet going up my legs. The burning is now in buttocks, especially when sitting and sleeping. Neurologist jokingly said I have restless butt syndrome. I am taking 300mgs of lyrica and also percocet for pain. I take ambien because I would never be able to sleep because the pain is worse at night What medications are you taking. Please let me know hou you are coping with this,
Cream78

 
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Old 11-20-2008, 11:48 AM   #3
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Re: why does the pain in my feet get worse after I am off them for awhile

Quote:
Originally Posted by cream9518 View Post
Dear sidekick01, being not diabetic, like me, you have idiopathic neuropathy. Have been like this for a couple of years with numbness and burning in my feet going up my legs. The burning is now in buttocks, especially when sitting and sleeping. Neurologist jokingly said I have restless butt syndrome. I am taking 300mgs of lyrica and also percocet for pain. I take ambien because I would never be able to sleep because the pain is worse at night What medications are you taking. Please let me know hou you are coping with this,
Cream78
I am sorry, guess I didn't say it right. I am diabetic ( just diagnosed this year) but have had the numbness for years in my feet for about 6 years and never was checked for diabetes. I am on metformin 250mg 3x daily for the diabetes and just this last year since diagnosed also on gabapentin 400 mg 4x daily for the pain in my feet. I find it hard to walk and particularly stand. I have had jabbing pains as well this last year in my feet and sometimes my hands. I feel unbalanced because of the numbness. I am still trying to work as I have 1 year left till early retirement but questionable whether I will make it. My question was regarding the fact that I have noticed when I am not on my feet (sitting or after sleeping ) my feet seem unbearably worse to the point I can hardly bear to stand up or walk. The pain decreases after a few minutes although still very painful. Just wondering if this is the same with others and why? Thanks for your reply

 
Old 11-21-2008, 09:21 PM   #4
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Re: why does the pain in my feet get worse after I am off them for awhile

Hi there. I've had pn for about 28 years. I have had an argument with the department
head of the Neuropathy Division, Kaiser Hospital who said that while exercise is
important in treating pn, there is no need for any "pressure sensitive " kinds of exercise
such as pounding on the treadmill. While I have little medical knowledge,I disagreed with
him because exercise, exercise that includes pounding, is a very effective tool in
reducing pain.
Listen up...this is very important. Don't look at this as the end of your life. I want
you to declare war on your PN. If your heart, etc., is ok, get on the treadmill or start
walking. At first, go slow and long. After awhile, go fast and long. At the beginning, it will be painful....but keep at it with dedication. After awhile, the pain will go away. Then
your PN pain will go away while on the treadmill and for some time afterwards.
Take as much pain killer as will assuage your pain.If you are offered just percoset and
you still have intense pain, get something stronger. There is no need to live with
lightening strikes of pain. If you watch your blood sugars, reading labels on foods
as if they were life and death items so that you learn that a product can state:
Sugar free but then you read sugar alcohols, corn syrup, Maliton, and many other
ingredients which really are sugars, lose weight if you're obese, and walk then run
for your life. You will beat it. Don't surrender. Treat the PN like a scurvy sucker that
is about to maul you. Confront it. And when you beat it.......be proud. This is your
personal battle and there is nobody out there who will be able to fight it but you.

 
Old 11-21-2008, 09:23 PM   #5
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Re: why does the pain in my feet get worse after I am off them for awhile

Quote:
Originally Posted by Sidekick01 View Post
I am sorry, guess I didn't say it right. I am diabetic ( just diagnosed this year) but have had the numbness for years in my feet for about 6 years and never was checked for diabetes. I am on metformin 250mg 3x daily for the diabetes and just this last year since diagnosed also on gabapentin 400 mg 4x daily for the pain in my feet. I find it hard to walk and particularly stand. I have had jabbing pains as well this last year in my feet and sometimes my hands. I feel unbalanced because of the numbness. I am still trying to work as I have 1 year left till early retirement but questionable whether I will make it. My question was regarding the fact that I have noticed when I am not on my feet (sitting or after sleeping ) my feet seem unbearably worse to the point I can hardly bear to stand up or walk. The pain decreases after a few minutes although still very painful. Just wondering if this is the same with others and why? Thanks for your reply
Hi there. I've had pn for about 28 years. I have had an argument with the department
head of the Neuropathy Division, Kaiser Hospital who said that while exercise is
important in treating pn, there is no need for any "pressure sensitive " kinds of exercise
such as pounding on the treadmill. While I have little medical knowledge,I disagreed with
him because exercise, exercise that includes pounding, is a very effective tool in
reducing pain.
Listen up...this is very important. Don't look at this as the end of your life. I want
you to declare war on your PN. If your heart, etc., is ok, get on the treadmill or start
walking. At first, go slow and long. After awhile, go fast and long. At the beginning, it will be painful....but keep at it with dedication. After awhile, the pain will go away. Then
your PN pain will go away while on the treadmill and for some time afterwards.
Take as much pain killer as will assuage your pain.If you are offered just percoset and
you still have intense pain, get something stronger. There is no need to live with
lightening strikes of pain. If you watch your blood sugars, reading labels on foods
as if they were life and death items so that you learn that a product can state:
Sugar free but then you read sugar alcohols, corn syrup, Maliton, and many other
ingredients which really are sugars, lose weight if you're obese, and walk then run
for your life. You will beat it. Don't surrender. Treat the PN like a scurvy sucker that
is about to maul you. Confront it. And when you beat it.......be proud. This is your
personal battle and there is nobody out there who will be able to fight it but you.

 
Old 11-22-2008, 03:29 AM   #6
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Re: why does the pain in my feet get worse after I am off them for awhile

Thank you for the advise. I do have some weight to loose and no tredmill at this time but have bought an exercise bike so will have to make that work. Appreciate your encouragement ty

 
Old 11-22-2008, 02:23 PM   #7
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Re: why does the pain in my feet get worse after I am off them for awhile

Hi, i am not really sure why nerve signaling can go erractic when resting, i know i had the same trouble myself and many others do as well.

I do know a few neuropathy patients that had elavated blood sugars and once they get their blood sugars under very good control for some time, their neuropathic pain has reduced [dramaticly in some cases].

I also think exercise is very important, insulin resistance can be helped by exercise, a good way to unlock " the keys " to the insulin receptors thus lowering blood glucose levels more efficently, a healthy but low carb diet is also very helpfull to control blood sugars, white bread, rice, pasta & sugary carbs etc, can very quickly elavate blood sugars & should be avoided when diabetic.

There was a study once done on diabetic polyneuropathy patients using supplements, the majority of them did show improvement in symptoms, it was using three supplements: Alpha Lipoic Acid (ALA), Gamma Linolenic Acid (GLA) as contained in Evening Primrose Oil (EPO), and Vitamin C.

I personaly had a slight reaction to Alpha Lipioc acid in the form of a rash, but i switched to the newer better form " R- lipioc acid " [ 100 mg ] and had no trouble at all, lipioc acid can lower glucose levels so one has to monitor your personal reaction if taken diabetic meds as well.,[may not affect them at all ] it didn't to me but i think it wise to play carefully.

The Gamma Linolenic Acid can be bought by itself, typicaly 480 mg daily.

Vitamin C 500 mg daily

I have added other supplements myself called Acetyl-l-carnitine, it can help heal nerves, b12 methylcobalin 1mg daily [taken on an empty stomach] and in the mornings i take a good quality multi B, all have a purpose for nerve support.

A little more info about carnitine, it is a natural substance that bodies produce, but in order for the body to produce carnitine, it needs the amino acids lysine or methionine and vitamin C, so a shortage of one or both amino acids and/or vitamin C will lead to inadequate production of carnitine.
In the human body, carnitine transports long chain fatty acids into the cells, so that they can be used for energy. Several steps are required for this process and dysfunction at any or all of the steps leads to genetic disorders including primary carnitine deficiency, in which the body cannot convert fat into energy, because carnitine is necessary to convert fat to energy, acetyl l carnitine is commonly added to “fat burners” and other weight loss supplements.
Some studies have shown that supplements combining acetyl l-carnitine and alpha lipoic acid appear to reverse the damage done to certain cellular structures, known as mitochondria, by the aging process. mitochondria exist in all of the cells of the body.
They are the cellular structures that have been described as “cellular power plants”. These structures churn out energy for the cell by converting other compounds into ATP, which has multiple functions at the cellular level, including energy transfer, mitochondria also store and release calcium, in nerve cells, the release of calcium back into the cell initiates events that cause the release of neurotransmitters, which transmit signals among different nerve cells in the brain and body. In other words, neurotransmitters tell the muscles and organs what to do.
i hope this helps
best of luck to you

Aussie

Last edited by Aussie100; 11-22-2008 at 02:47 PM.

 
The Following User Says Thank You to Aussie100 For This Useful Post:
Capewind (05-09-2011)
Old 11-22-2008, 02:56 PM   #8
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Sidekick01 HB User
Re: why does the pain in my feet get worse after I am off them for awhile

Quote:
Originally Posted by Aussie100 View Post
Hi, i am not really sure why nerve signaling can go erractic when resting, i know i had the same trouble myself and many others do as well.

I do know a few neuropathy patients that had elavated blood sugars and once they get their blood sugars under very good control for some time, their neuropathic pain has reduced [dramaticly in some cases].

I also think exercise is very important, insulin resistance can be helped by exercise, a good way to unlock " the keys " to the insulin receptors thus lowering blood glucose levels more efficently, a healthy but low carb diet is also very helpfull to control blood sugars, white bread, rice, pasta & sugary carbs etc, can very quickly elavate blood sugars & should be avoided when diabetic.

There was a study once done on diabetic polyneuropathy patients using supplements, the majority of them did show improvement in symptoms, it was using three supplements: Alpha Lipoic Acid (ALA), Gamma Linolenic Acid (GLA) as contained in Evening Primrose Oil (EPO), and Vitamin C.

I personaly had a slight reaction to Alpha Lipioc acid in the form of a rash, but i switched to the newer better form " R- lipioc acid " [ 100 mg ] and had no trouble at all, lipioc acid can lower glucose levels so one has to monitor your personal reaction if taken diabetic meds as well.,[may not affect them at all ] it didn't to me but i think it wise to play carefully.

The Gamma Linolenic Acid can be bought by itself, typicaly 480 mg daily.

Vitamin C 500 mg daily

I have added other supplements myself called Acetyl-l-carnitine, it can help heal nerves, b12 methylcobalin 1mg daily [taken on an empty stomach] and in the mornings i take a good quality multi B, all have a purpose for nerve support.

A little more info about carnitine, it is a natural substance that bodies produce, but in order for the body to produce carnitine, it needs the amino acids lysine or methionine and vitamin C, so a shortage of one or both amino acids and/or vitamin C will lead to inadequate production of carnitine.
In the human body, carnitine transports long chain fatty acids into the cells, so that they can be used for energy. Several steps are required for this process and dysfunction at any or all of the steps leads to genetic disorders including primary carnitine deficiency, in which the body cannot convert fat into energy, because carnitine is necessary to convert fat to energy, acetyl l carnitine is commonly added to “fat burners” and other weight loss supplements.
Some studies have shown that supplements combining acetyl l-carnitine and alpha lipoic acid appear to reverse the damage done to certain cellular structures, known as mitochondria, by the aging process. mitochondria exist in all of the cells of the body.
They are the cellular structures that have been described as “cellular power plants”. These structures churn out energy for the cell by converting other compounds into ATP, which has multiple functions at the cellular level, including energy transfer, mitochondria also store and release calcium, in nerve cells, the release of calcium back into the cell initiates events that cause the release of neurotransmitters, which transmit signals among different nerve cells in the brain and body. In other words, neurotransmitters tell the muscles and organs what to do.
i hope this helps
best of luck to you

Aussie
Thanks Aussie, I may have to try this out if it works out to be ok with my other meds. I have a number of other health issues so have to be careful with interaction with my other drugs. I am a cancer survivor (3 x) and on meds for that yet as well as bloodpressure and heart and kidney problems so have to be careful. I will check things over with my doctor and may try your suggestions or part of them if he agrees. Thanks ever so much...

 
Old 11-27-2008, 02:44 AM   #9
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Re: why does the pain in my feet get worse after I am off them for awhile

Quote:
Originally Posted by Sidekick01 View Post
I am sorry, guess I didn't say it right. I am diabetic ( just diagnosed this year) but have had the numbness for years in my feet for about 6 years and never was checked for diabetes. I am on metformin 250mg 3x daily for the diabetes and just this last year since diagnosed also on gabapentin 400 mg 4x daily for the pain in my feet. I find it hard to walk and particularly stand. I have had jabbing pains as well this last year in my feet and sometimes my hands. I feel unbalanced because of the numbness. I am still trying to work as I have 1 year left till early retirement but questionable whether I will make it. My question was regarding the fact that I have noticed when I am not on my feet (sitting or after sleeping ) my feet seem unbearably worse to the point I can hardly bear to stand up or walk. The pain decreases after a few minutes although still very painful. Just wondering if this is the same with others and why? Thanks for your reply
Hi There

Just reading your post and I am curious if you have ever had you B12 level schecked.....Deficiencies can occur when using metformin....It would be worth considering as it causes pins & needles,numbness and balance problems........I used to literally drag my legs to the tiolet in the middle of the night and my arms would go dead....I would also get jabbing pains at any time............

Best of luck

 
Old 11-27-2008, 07:08 AM   #10
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Smile Re: why does the pain in my feet get worse after I am off them for awhile

Quote:
Originally Posted by Rainbows End View Post
Hi There

Just reading your post and I am curious if you have ever had you B12 level schecked.....Deficiencies can occur when using metformin....It would be worth considering as it causes pins & needles,numbness and balance problems........I used to literally drag my legs to the tiolet in the middle of the night and my arms would go dead....I would also get jabbing pains at any time............

Best of luck
Thanks for the note Rainbows End,
I am not sure but think I was checked for B-12 but will check with my doctor when I see him next. The problem with the numbness, pains and balance started years before the diabetis was diagnosed and I was put on any medication for anything associated but could be the b12 was off then too I suppose. Thanks for the info... much appreciated

 
Old 11-27-2008, 03:07 PM   #11
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Re: why does the pain in my feet get worse after I am off them for awhile

Quote:
Originally Posted by Sidekick01 View Post
Thanks for the note Rainbows End,
I am not sure but think I was checked for B-12 but will check with my doctor when I see him next. The problem with the numbness, pains and balance started years before the diabetis was diagnosed and I was put on any medication for anything associated but could be the b12 was off then too I suppose. Thanks for the info... much appreciated
Hi sidekick01

yes dont presume that docs just check B12 as a standard if you are not anemic a lot wont which is just stupid.....

Anyway yes you could have had this for a lonnnnng time......please notethat the ranges for B12 are set to prevent PA but you can get neurological damage at around 550 that is the lowest level set in Japan & they have very low rates of alzheimers there.....

If you have the tests again and I would recommend that you do esp when on the metformin....Make sure you get the following

B12 serum
Homocysteine ( can be elevated in deficiencies)
uMMA urine test ( elevated in B12 def) used when the levels of serum are within normal values)
Folate
Iron studies


good luck
CBC

 
Old 11-29-2008, 10:37 PM   #12
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Re: why does the pain in my feet get worse after I am off them for awhile

While you are waiting for your next diagnosis, demand that you received strong
medications for the pain. There is no good reason to be in pain. I take Dilaudio
a pre morphine drug and it has helped me immeasureably.
The pain is worse at night but I don't know why except to say, part of this
happening is just before you go to sleep, you are not doing anything to take your mind
off the pain. What might help,also, is when the pain is too intense,sleep in an Easy\
Boy with your legs outward. That will help some.

 
Old 11-29-2008, 10:41 PM   #13
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Re: why does the pain in my feet get worse after I am off them for awhile

I'd give a lot of credence to what Aussie says.He is an expert in this field and
a real mensch to spend a lot of his time helping others. Here's to you Aussie
the woondog

 
Old 11-30-2008, 06:30 AM   #14
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Smile Re: why does the pain in my feet get worse after I am off them for awhile

Quote:
Originally Posted by woondog View Post
While you are waiting for your next diagnosis, demand that you received strong
medications for the pain. There is no good reason to be in pain. I take Dilaudio
a pre morphine drug and it has helped me immeasureably.
The pain is worse at night but I don't know why except to say, part of this
happening is just before you go to sleep, you are not doing anything to take your mind
off the pain. What might help,also, is when the pain is too intense,sleep in an Easy\
Boy with your legs outward. That will help some.
Thanks Woondog
My pain is bad at night but for some reason becomes almost unbearable for the first few minutes when I first stand up on them. To the point where I can hardly stand or walk. This is also the same in the daytime when I have been sitting or resting for a short time(1/2 hr. or so). Any ideas why this would be??Any ideas would be greatly appreciated. Thanks again....

 
Old 12-01-2008, 10:19 PM   #15
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Re: why does the pain in my feet get worse after I am off them for awhile

Quote:
Originally Posted by woondog View Post
I'd give a lot of credence to what Aussie says.He is an expert in this field and
a real mensch to spend a lot of his time helping others. Here's to you Aussie
the woondog
Thanks woondog for your kind words

 
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