Discussion:
Best shoe/brand for severe peripheral neuropathy?
(too old to reply)
Robin
2004-06-08 16:57:44 UTC
Permalink
My brother is two yrs past stem cell transplant but his PN has never
gone away, in recent weeks, its much worse. We've been trying everything
(MSM cream, foot spa, foot massage, icing, Tylenol, etc). The last few
nights, he has been waking up in the middle of the night with it
throbbing and so severe, he's been calling the oncologist on call asking
what he can do. He has been in tears. His oncologist yesterday said
he's going to order a PET scan to get to the bottom of the PN (and also
some fevers he's been having). Until all that happens, I want to get
him some shoes that are extremely cushy and soft on the top, that might
help. Have any of you with similar problems found a shoe that helps?
If yes, what type of shoe (tennis shoe, sandal or other?) and brand?
What features should we look for? Where is this shoe carried? My
brother's in Los Angeles.
Thx.
--
Do not email if posting response. To email, replace x with 4
J
2004-06-08 20:18:56 UTC
Permalink
Post by Robin
My brother is two yrs past stem cell transplant but his PN has never
gone away, in recent weeks, its much worse. We've been trying everything
(MSM cream, foot spa, foot massage, icing, Tylenol, etc). The last few
nights, he has been waking up in the middle of the night with it
throbbing and so severe, he's been calling the oncologist on call asking
what he can do. He has been in tears. His oncologist yesterday said
he's going to order a PET scan to get to the bottom of the PN (and also
some fevers he's been having). Until all that happens, I want to get
him some shoes that are extremely cushy and soft on the top, that might
help. Have any of you with similar problems found a shoe that helps?
If yes, what type of shoe (tennis shoe, sandal or other?) and brand?
What features should we look for? Where is this shoe carried? My
brother's in Los Angeles.
Thx.
Hi Robin, we had a thread going earlier about neuropathy, so I found it in
the archives
Douglas shared these with us
http://www.ninds.nih.gov/health_and_medical/disorders/peripheralneuropathy_doc.htm

http://www.projinf.org/fs/sneuro.html
http://www.neurologychannel.com/neuropathy/index.shtml
http://www.cancersupportivecare.com/neuropathy.html
There's tips there about the feet, nothing specific about specific shoes.
I think the trick is not too tight or nothing touching the areas where the
nerves so that hopefully eventually the nerves quit remembering the pain. I
think I read that somewhere.

Some were trying creams, some were taking Neurontin, some were combining it
with one of the antidepressants on that last page. (your brother's still on
Effexor? - it talks about burning and/or tingling).

Mike said earlier "Anti-depressants, particularly the older tricyclics have
been used for years
for neuropathic pain. Also anti-epileptics can be very effective.
Methadone is more effective than morphine when neuropathic pain is present

and the benzodiazapine clonazepam is also useful."

So hopefully your brother will find relief soon combined with meds and tips
there.
And hopefully all is okay with his lymphoma.
Keep in touch
J
J
2004-06-08 20:24:29 UTC
Permalink
Post by J
Hi Robin, we had a thread going earlier about neuropathy, so I found it in
the archives
Douglas shared these with us
http://www.ninds.nih.gov/health_and_medical/disorders/peripheralneuropathy_doc.htm
http://www.projinf.org/fs/sneuro.html
http://www.neurologychannel.com/neuropathy/index.shtml
http://www.cancersupportivecare.com/neuropathy.html
There's tips there about the feet, nothing specific about specific shoes.
I think the trick is not too tight or nothing touching the areas where the
nerves so that hopefully eventually the nerves quit remembering the pain. I
think I read that somewhere.
Some were trying creams, some were taking Neurontin, some were combining it
with one of the antidepressants on that last page. (your brother's still on
Effexor? - it talks about burning and/or tingling).
Mike said earlier "Anti-depressants, particularly the older tricyclics have been
used for years
for neuropathic pain. Also anti-epileptics can be very effective.
Methadone is more effective than morphine when neuropathic pain is present
and the benzodiazapine clonazepam is also useful."
Adding more so they're all together in the archives
http://www.alcase.org/education/symptoms_neuropathy.html
Neuropathy
This article was written by Pamela J. Haylock, RN, MA, and appeared in the Summer/Fall
1999 issue of the Alliance for Lung Cancer's Spirit and Breath newsletter as
"Neuropathy Related to Lung Cancer and Treatment."

Former president of the 29,000 member Oncology Nursing Society, Ms. Haylock lives in
Medina, Texas where she currently works as an oncology consultant. She is especially
interested in preparing cancer survivors and family members to be more effective
self-advocates.

Since being diagnosed with lung cancer, you may have developed symptoms including
tingling or numbness in your fingers or toes, hearing loss, forgetfulness, dizziness,
or constipation. These symptoms can be caused by a condition called "neuropathy."

Neuropathy means that something is wrong with nerve tissue. Although some people with
lung cancer never develop this condition, it is a fairly common occurrence. It may
resolve over time, or it may be a progressive and persistent problem. About half of
all people with lung cancer have some neuropathy even before treatment starts. Other
medical conditions, such as impaired kidney or liver function, diabetes, alcoholism,
or malnutrition, increase your chances of developing the symptoms, and people over the
age of 60 are also at a greater risk.

In addition to the symptoms listed above, neuropathy may bring partial or total loss
of function or mobility, swelling, and in severe cases, progressive pain. When it
occurs from a nerve in the brain, neuropathy may result in cognitive changes such as
memory loss or dizziness.

The degree and severity depends to some extent on the location of primary and
metastatic sites. But close monitoring and preventive strategies can make a noticeable
difference.

Disease-Related Neuropathy
Every bodily function occurs as a result of the interaction between nerves and other
organs. As a tumor grows and circles around a nerve, or presses on the nerve, it
decreases the blood flow to that nerve. This may cause functional changes in the body
part controlled by this nerve.

An example of a condition which causes disease-related neuropathy more often with lung
cancer, is "brachial plexopathy," in which the brachial nerve is entrapped by tumor.
Other neuropathy problems can occur as a result of harmful substances that are
produced by cancer cells; this is especially a problem in small cell lung cancers.

Treatment-Related Neuropathy
New studies are looking at ways to protect normal tissues, including nerves, from the
damaging side-effects of cancer treatments. Vitamin B6, for instance, is being studied
for its potential to decrease neuropathy associated with chemotherapy. Various
compounds thought to protect tissues from radiation are being tested in clinical
trials. As in disease-related neuropathy, treatment-related neuropathy can affect the
brain, spinal cord, nerves that originate in the brain (called cranial nerves), and
nerves that supply the body's organs and limbs. If and when neuropathy is noted, the
treatment can be adjusted or stopped, and further damage avoided. Early detection is
key to minimizing the chances of permanent damage.

Neuropathy can force treatment to be stopped before a full regimen is completed, and
can cause distressing physical and emotional effects. But close monitoring and
preventive strategies can make a noticeable difference.

Biotherapy and chemotherapy are closely linked to some of the most stubborn neuropathy
problems. Biological response modifiers, such as IL-2 and Interferon, may cause memory
loss, confusion, depression, problems in thinking and decision-making, and even
hallucinations. These problems can be related to neuropathy. Chemotherapy drugs used
to treat lung cancer that may cause neuropathy include cisplatin, which affects
hearing; docetaxel and paclitaxel, which may cause numbness of the hands and feet;
vinorelbine tartrate and vincristine, which may cause constipation, foot drop, wrist
drop, and gait changes; and, etoposide, which sometimes causes numbness of hands and
feet, fatigue, headache, dizziness, and confusion. The degree of damage to nerves
usually relates to the drug dose given at each treatment cycle, how often the drug is
given, how quickly the drug is given, and in some cases, to the total or "cumulative"
dose.

Damage to nerves during surgery, or scar tissue formation after surgery, can cause
neuropathy and permanent changes such as (depending on the surgical site) decreased
range of motion or loss of function in an arm or neck, and in some cases, pain.
Post-operative radiation can also result in scar tissue and fibrosis that entraps
nerves, causing diminished mobility, function, and pain.

For the most part, radiation-related neuropathy happens when radiation causes damage
to the blood vessels that nourish nervous tissue. When used to manage problems caused
by the spread of cancer to the brain or spinal cord, radiation most often causes
symptoms such as headache; nausea; sleepiness; low-grade fever; loss of sensation;
and, weakness and numbness, especially in the legs and feet. In general, the larger
the dose and treatment field, the greater the effect. Permanent radiation-related
neuropathy, including paralysis, can occur with doses of approximately 5,000 cGy
applied directly to the spinal cord. However, this problem is largely avoided by
modern radiation treatment planning.

Preventing and Managing Neuropathy
One of the first things to do is to ask a physical therapist or nurse to help you
create a range-of-motion exercise plan for your arms and legs. Regular exercise will
prevent muscle wasting and other problems relating to lack of activity.

In addition, follow these guidelines:

Before you begin any treatment plan, talk with your doctor or nurse about the
likelihood of neuropathy and its early signs, and clarify expectations for reporting
these signs.
Ask the nurse to help you learn how to regularly assess your nervous system. Be alert
to: numbing and tingling of hands and feet; slurred speech; changes in sensations of
pain, touch, temperature, position, and vibration; or , difficulty with fine motor
tasks, such as buttoning clothing.
Consult with your oncologist or oncology nurse before taking any medications. Use all
medications, including over-the-counter, only as prescribed. Some sedatives,
tranquilizers, pain relievers, and anti-nausea medications can increase neuropathy.
Work with the nurse on how to avoid constipation, a common symptom, especially with
treatment of vinorelbine or vincristine, that occurs when nerves that supply the bowel
and rectum are affected.
Open lines of communication between you, your family, and members of your health care
team will help you recognize early signs before neuropathy progresses. Preventing or
minimizing neuropathy during treatment will not only help you complete the treatment,
but can help preserve your quality of life post-treatment.
If you have been diagnosed with lung cancer, implement these safety measures
immediately, and continue them until your oncologist says you are past the chances of
developing neuropathy:

Keep the water heater setting at or below 110? F, in response to heat and cold
insensitivity, and bathe in warm, not hot, water.
Routinely inspect affected body areas for burns, cuts, or scratches.
Use rubber gloves or gardening gloves when doing household chores.
Avoid use of heating pads.
Wear shoes or slippers at all times to protect your feet.
Avoid extreme hot or cold temperatures.
Robin
2004-06-09 06:12:17 UTC
Permalink
Post by J
Post by Robin
My brother is two yrs past stem cell transplant but his PN has never
gone away, in recent weeks, its much worse. We've been trying everything
(MSM cream, foot spa, foot massage, icing, Tylenol, etc). The last few
nights, he has been waking up in the middle of the night with it
throbbing and so severe, he's been calling the oncologist on call asking
what he can do. He has been in tears. His oncologist yesterday said
he's going to order a PET scan to get to the bottom of the PN (and also
some fevers he's been having). Until all that happens, I want to get
him some shoes that are extremely cushy and soft on the top, that might
help. Have any of you with similar problems found a shoe that helps?
If yes, what type of shoe (tennis shoe, sandal or other?) and brand?
What features should we look for? Where is this shoe carried? My
brother's in Los Angeles.
Thx.
Hi Robin, we had a thread going earlier about neuropathy, so I found it in
the archives
Douglas shared these with us
http://www.ninds.nih.gov/health_and_medical/disorders/peripheralneuropathy_doc
.htm
http://www.projinf.org/fs/sneuro.html
http://www.neurologychannel.com/neuropathy/index.shtml
http://www.cancersupportivecare.com/neuropathy.html
There's tips there about the feet, nothing specific about specific shoes.
I think the trick is not too tight or nothing touching the areas where the
nerves so that hopefully eventually the nerves quit remembering the pain. I
think I read that somewhere.
Some were trying creams, some were taking Neurontin, some were combining it
with one of the antidepressants on that last page. (your brother's still on
Effexor? - it talks about burning and/or tingling).
Mike said earlier "Anti-depressants, particularly the older tricyclics have
been used for years
for neuropathic pain. Also anti-epileptics can be very effective.
Methadone is more effective than morphine when neuropathic pain is present
and the benzodiazapine clonazepam is also useful."
So hopefully your brother will find relief soon combined with meds and tips
there.
And hopefully all is okay with his lymphoma.
Keep in touch
J
Thank you so much J. Yes, he's still on Effexor and many other
medications related to his brain disorder, we well as blood pressure,
colace, etc. He's sensitive to meds, so changes are very scarey. He
tried Neurontin, but unsuccessful. Today I ordered him an insole for
his shoes that have magnets, and a pair of Nike tennis shoes which were
described as what I had in mind for him. With all the research I've done
on PN, it doesn't look like there's a solution for most people.
--
Do not email if posting response. To email, replace x with 4
J
2004-06-09 10:35:23 UTC
Permalink
Post by Robin
Thank you so much J. Yes, he's still on Effexor and many other
medications related to his brain disorder, we well as blood pressure,
colace, etc. He's sensitive to meds, so changes are very scarey. He
tried Neurontin, but unsuccessful. Today I ordered him an insole for
his shoes that have magnets, and a pair of Nike tennis shoes which were
described as what I had in mind for him. With all the research I've done
on PN, it doesn't look like there's a solution for most people.
Difficult situation, Robin,
as the other poster said perhaps a podiatrist might help?
I've heard of "soft-siders" - a friend of mine was looking for specific shoes for
quite some time and it takes some shopping around and trying on (in person), which
makes it even more difficult if his feet hurt.

So there's a plethora of different types of footwear out there. He may want several
different types so he can switch one or another or even wear open heel soft
slippers. I do wish you and he success in your search.
J
Bob Allison
2004-06-09 21:19:53 UTC
Permalink
Post by J
So there's a plethora of different types of footwear out there. He may want several
different types so he can switch one or another or even wear open heel soft
slippers. I do wish you and he success in your search.
J
Myself, I like Minnetonka Moccasins. I started wearing them several
years ago. Comcfortable, and easy to slip into. Available at almost
any Tourist trap in the American Southwest, or online. Just Google
Minnetonka Moccasins. Not for running, but great for almost anything
else.

Bob
In Carmel,CA
J
2004-06-10 09:21:43 UTC
Permalink
Post by J
Post by J
So there's a plethora of different types of footwear out there. He may want
several
Post by J
different types so he can switch one or another or even wear open heel soft
slippers. I do wish you and he success in your search.
J
Myself, I like Minnetonka Moccasins. I started wearing them several
years ago. Comcfortable, and easy to slip into. Available at almost
any Tourist trap in the American Southwest, or online. Just Google
Minnetonka Moccasins. Not for running, but great for almost anything
else.
Bob
In Carmel,CA
Great idea Bob ! (ie why didn't I think of that?..rhetorical)

Now if only I can find mukluks locally... I prefer shop in person. I had to toss
my 20 y-o mukluks last winter. I must have stepped in some tar or oil or gas and
the soles disintegrated. (or the soles were made of something that derives from
that). I was so upset ! I bought them in Northern BC and they're wonderful for
walking in very cold or damp or deep snow.
People here are weird (to me). When I first moved here, I noticed they step out
the door into a foot of snow in shoes !
And no hat. Then I'd see them at the bus stop complaining about being cold. I
think it's called "wishful thinking" - ie "by the time the day is done, the snow
will be gone". Those days seem to be over here (for now). Except for a few
days, when winter comes, it stays until Spring, but perhaps you don't know about
that if you're in the Southern US?

Whoops ! I'm babbling.
I sure wish the OP could find some combo of meds that would help.
J
Guesswho
2004-06-08 21:17:54 UTC
Permalink
A podiatrist would be able to point you in the right direction since the
often deal with neuropathy ( ususally diabetic).
Post by Robin
My brother is two yrs past stem cell transplant but his PN has never
gone away, in recent weeks, its much worse. We've been trying everything
(MSM cream, foot spa, foot massage, icing, Tylenol, etc). The last few
nights, he has been waking up in the middle of the night with it
throbbing and so severe, he's been calling the oncologist on call asking
what he can do. He has been in tears. His oncologist yesterday said
he's going to order a PET scan to get to the bottom of the PN (and also
some fevers he's been having). Until all that happens, I want to get
him some shoes that are extremely cushy and soft on the top, that might
help. Have any of you with similar problems found a shoe that helps?
If yes, what type of shoe (tennis shoe, sandal or other?) and brand?
What features should we look for? Where is this shoe carried? My
brother's in Los Angeles.
Thx.
--
Do not email if posting response. To email, replace x with 4
p***@gmail.com
2014-05-23 02:03:11 UTC
Permalink
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BruceS
2014-05-23 19:11:02 UTC
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