NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   When The Pain Is Controlling Your Life? (https://www.neurotalk.org/peripheral-neuropathy/110840-pain-controlling-life.html)

JoshuaY46012 12-22-2009 03:26 PM

Quote:

Originally Posted by Kitt (Post 602609)
I can't remember Josh if you have ever been tested for Charcot Foot? It has nothing whatsoever to do with CMT. Thanks.

I haven't :( I had an EMG and my muscles were withing normal working range, my medial plantar nerve in either foot showed no response.

mrsD 12-22-2009 04:27 PM

Have you looked up medial plantar nerve entrapment?

http://www.merck.com/mmpe/sec04/ch043/ch043k.html

also showing source:
http://en.wikipedia.org/wiki/File:Gray834.svg
http://en.wikipedia.org/wiki/Medial_plantar_nerve

http://www.chiroweb.com/mpacms/dc/article.php?id=41649
This is a very good article: it describes Tinel's sign. Can you get that when following the directions?

I can't recall if you have seen a good podiatrist? The reason I ask is my son had a terrible pain in his foot when he started college and had to walk long distances, which was traced to an overpronation problem on that side. The orthotics that were made for him corrected it. He had x-rays and other tests, to rule out other problems. Prior to the fix he was very picky in selecting shoes ... I can recall spending hours trying on shoes with him when he was younger! Now he is totally normal in this regard.

JoshuaY46012 12-22-2009 07:59 PM

Quote:

Originally Posted by mrsD (Post 602635)
Have you looked up medial plantar nerve entrapment?

http://www.merck.com/mmpe/sec04/ch043/ch043k.html

also showing source:
http://en.wikipedia.org/wiki/File:Gray834.svg
http://en.wikipedia.org/wiki/Medial_plantar_nerve

http://www.chiroweb.com/mpacms/dc/article.php?id=41649
This is a very good article: it describes Tinel's sign. Can you get that when following the directions?

I can't recall if you have seen a good podiatrist? The reason I ask is my son had a terrible pain in his foot when he started college and had to walk long distances, which was traced to an overpronation problem on that side. The orthotics that were made for him corrected it. He had x-rays and other tests, to rule out other problems. Prior to the fix he was very picky in selecting shoes ... I can recall spending hours trying on shoes with him when he was younger! Now he is totally normal in this regard.

I've actually been looking into this! I'm going to talk to my Neuro about this, I have an appt in a couple weeks.

I tried the last link, it wasn't working :( The directions you were talking about, were they a way to test to see if that was a possibility?

Thanks you guys for all of the support, sometimes you just have those days ya know!

:grouphug:

mrsD 12-23-2009 06:55 AM

hmmm... the link works this morning.

Here is explanation of Tinel's sign:
http://en.wikipedia.org/wiki/Tinel_sign

Tap over the nerve --in this case at the ankle, and see if you get "zings" there. I know I have been much better with the simple relacing of my shoes. This took the pressure off the two large nerves on the instep, which are very sensitive to pressure.

If you search the nerves in the feet, and look at them closely you will see their distribution. And you can target the pain that way too. When you decide to go to the podiatrist, get good x-rays because there are many things in the foot that can give pain. Neuromas won't show up, but spurs and other issues will.

My son showed no foot problems until he went to college and was walking so much--- all of a sudden-- several miles a day.
That right ankle THEN really started on him. I was quite relieved that the solution was simple as well. (not inexpensive, as orthotics are costly, but at least surgery wasn't needed, and he ended up pain free).

One of the first things the foot doctor does is look at your shoe wear...it can show deviations to the right or left in weight distribution, and that may be a hint to you. Pronating wears the inside of the heel. It will show on old shoes more clearly.

Try the Chiroweb link again. It is working for me this morning.

JoshuaY46012 12-23-2009 09:32 AM

Quote:

Originally Posted by mrsD (Post 602835)
hmmm... the link works this morning.

Here is explanation of Tinel's sign:
http://en.wikipedia.org/wiki/Tinel_sign

Tap over the nerve --in this case at the ankle, and see if you get "zings" there. I know I have been much better with the simple relacing of my shoes. This took the pressure off the two large nerves on the instep, which are very sensitive to pressure.

If you search the nerves in the feet, and look at them closely you will see their distribution. And you can target the pain that way too. When you decide to go to the podiatrist, get good x-rays because there are many things in the foot that can give pain. Neuromas won't show up, but spurs and other issues will.

My son showed no foot problems until he went to college and was walking so much--- all of a sudden-- several miles a day.
That right ankle THEN really started on him. I was quite relieved that the solution was simple as well. (not inexpensive, as orthotics are costly, but at least surgery wasn't needed, and he ended up pain free).

One of the first things the foot doctor does is look at your shoe wear...it can show deviations to the right or left in weight distribution, and that may be a hint to you. Pronating wears the inside of the heel. It will show on old shoes more clearly.

Try the Chiroweb link again. It is working for me this morning.

Mrs. D :(

Now that I read that I remember my doctor did test me for this, in the arms and legs.... He must've thought the same as you. Neither my feet or hands were positive. I remember him doing this in several places on my arms, wrists, legs and ankles. Darn it!

I'll talk to him about a podiatrist.

Thank you so much Mrs. D! I'll get there, one day, hopefully sooner than later! By the way, that last link is working today, last night it was saying there was unexpected error!

nide44 12-23-2009 09:42 AM

Quote:

Originally Posted by Kitt (Post 602605)
Yes Bob, CMT is a small percentile of the people on this board. However, it is out there and often misdiagnosed.

Just trying to not scare the willies out of him.
Until he has a proper Dx, let's not have him hiding under his 'blankie'
in fear of the worst- of an untreatable progressive condition.

mrsD 12-23-2009 09:42 AM

Chiroweb goes down frequently. It has a wonderful drug interactions/depletions copy of the text I refer to here often. So I can link there.

It is a busy site, and they are always changing it etc, improving it..
I often find good things on it.

for example:
http://www.chiro.org/nutrition/ABSTR...orticosteroids
but now on closer look...I see this is another site...but it is also
very useful.

JoshuaY46012 12-23-2009 11:12 AM

Thanks Mrs. D, that site is favorited :)


I'm trying to think positively, I talked to the doctor about CMT, he doesn't think that could be the cause considering the muscle isn't wasting and the occasional foot drop could be due to a mononeuropathy in my left leg. I did have a GREAT grandfather with horrible neuropathy, he had it from a young age, that's the only family member that I'm aware of that had similar problems.

I'm worried to a point, but at the same time I'm not going to give my hopes up! Either way, I'm going to be positive and life live to the best of my ability!

tinglytoes 12-23-2009 01:46 PM

When no one understands...
 
Quote:

Originally Posted by JoshuaY46012 (Post 602324)
I'm almost to a place in my life where I'm making everyone and myself miserable. I know it doesn't seem as long as some of you, this has been 1 1/2 years now and I just feel worse than ever. My doctor is working with me I guess, I take Ultram, Ambien and Neurontin, which neither the Ultram or Neurontin really do of any good. I see him only ever 3 months or so, and he'll up the dose of Neurontin. I don't know what else to do, what else to say? I'm only 22, with this horrible pain.

I know that a lot of you have came and past this point which I'm at, what changed? What did you do?

I just need some people to talk to that understand where I'm coming from, my family, friends, no one understands me..

I'm sorry if I seem whiny or like a complainer, I'm a strong person, I promise, sometimes we just need a little help!

Josh

Hi Josh, It can be extra difficult to cope with neuropathy when you have youth going along with it. Looking good is about all most people can perceive. Not being understood is a real struggle and a bummer. Isolation does not have to be the outcome. I make a point of finding some metaphor that the person can understand. And then relate my symptoms to this metaphor. I repeat it as often as possible to them. Sometimes calling your worst days by this metaphor is a potentially humorous way to remind others that, yes, you are still with the process. I personally get extremely aggravated when others forget or truly believe it should all go away like a bad case of the flu. It is good to practice clear responses, sometimes funny, sometimes more pointed, to have at the ready. Then know that it is not your job to teach others how to be empathetic. If "there is no cheese down that tunnel" look elsewhere. Keep trying, if it is a close family or friend, often going around the other persons resistances or blind spots and presenting in a startling way which wakes them up to the reality that you are not the same physically, yet you are in fundamental ways. Some people simply cannot handle your reality. It is sucky when you get to that point with someone and realize it costs you too much to maintain a connection. This makes it lonely until you find others who can relate.

Self empowerment comes slowly. Part of it is validating, caretaking your own pain as if you were a injured pet or child. We teach others how to treat us by how we treat and respect ourselves. Never give in to the insensitivity, or giving up option, whether from within or from outside. It serves no one and nothing but more unconscious suffering.

We live in an empathy challenged world. Read Prema Chodron, "When Things Fall Apart", or especially good is "Healing Through the Dark Emotions- The Wisdom of Grief Fear and Despair", by Miriam Greenspan. Another great help is Rachel Naomi Remens, "My Grandfather's Blessings" or "Kitchen Table Wisdom". I recommend MGB as most appropriate to coping with pain and illness. All of these are really great. Hope something inspires you to learn what many will not have to until they are far older. We need way showers of how to do this. You could be one of them for your generation. We often underestimate the subtle influences we have on the world by embracing our process with compassion. Best Wishes TT:hug:

Kitt 12-23-2009 03:02 PM

Quote:

Originally Posted by nide44 (Post 602883)
Just trying to not scare the willies out of him.
Until he has a proper Dx, let's not have him hiding under his 'blankie'
in fear of the worst- of an untreatable progressive condition.

That is quite true Bob. CMT is a progressive and untreatable inherited disease at this time. However, symptoms of CMT vary greatly even within the same family. Symptoms can become evident when you are young, old, or in-between. Or symptoms may never be that evident. No one, not even a doctor, can predict how a person with CMT will end up. CMTers are all different and there are many types of CMT.

I am not trying to scare him at all. This was never my intention. Just giving some of the facts. Even if he would end up with CMT, that does not mean that he would have horrible pain or what other symptoms he might have. Some people, even with the same type of CMT, do have horrible pain, some not so much, and others have nearly no pain.

Again, I am not trying to scare him. I believe CMT was brought up in one of mrs'd's posts. It would just be in his interest to pursue all avenues and hopefully find out exactly what he does have if that is possible.


All times are GMT -5. The time now is 04:41 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.