When The Pain Is Controlling Your Life?
 

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

I can relate Josh
 

Hey there
I'm pretty new to the forum as well. This is a wonderful place.
I'm over 20 yrs older than you and i am just as confused. Neuropathy is a frickin NIGHTMARE.
I'm so sorry to hear of your battle. It always makes my heart weep when i see someone your age on here, but you are reaching OUT and that is a pretty good sign to me that you're gonna be ok.......just hang on. It's the people who DON'T reach out.....that's when the darkness consumes.

Do you know how/what started your neuropathy?
Just start out by reading the 'stickies' posts at the top of the PN forum. That'll start givin you your hope back. And NO you are NOT a whiner. I used to feel that way too, but it helps aLOT just to talk.....answer someone else's post if they are in pain.. It helps to 'build me back up a little' when i try and make someone else feel good. We don't have to be experts to participate here....
We just have to 'BE'
That's what i like so much about this place.....there ARE experts, yet there are 'goofballs' (like me :o) just tryin to add a little 'cheer' and silly-ness in the midst of all the pain, there are comforters, there are angry 'vents',.....that's what makes us 'full-circle' .

You BELONG here Josh and you vent all you want, because believe it or not, there's a good chance you are actually helping the next guy.....

Keep the Faith
Rae :catalan2:

I think you should try Lidoderm patches. They work well for me...but you have to apply to the "right" spot to intercept the right nerves correctly.

They have no central side effects either. If you search this forum there are posts about them.

Hi Josh,

We know what you're talking about. Neuropathic pain is terrible. I think it's even worse at this time of year when there is so much external pressure to be cheerful and so much internal anguish that you can't.

My doctor's only response to my pain is to overdose me on powerful meds. That just makes me a grumpy, pain-ridden zombie. This has gone on for three years and I've been told it will not improve. Frankly, I have very dark days when I think I just can't take it any longer.

When I feel that way, I come here. It's amazing just how talking to people who really get it, can get you over the hump. They remind me to take it one day at a time; to hold out for the people I love and in the hope that future medical advances will someday change all our lives for good.

Feel free to post, leave profile messages or PM any of us anytime you need an understanding ear.

Hang in there!!!

Josh, I don't think you are whining.

It is always possible you may improve with time. Some PNs are self limiting that way. Your young age is in your favor.

If this turns out to be CMT or some other genetic cause, then improvement would be unlikely.

I think it is time to look at some supplements in earnest for you.
What are you doing so far, if any?

'They remind me to take it one day at a time; to hold out for the people I love and in the hope that future medical advances will someday change all our lives for good.'


What a wonderful philosophy!:hug:

Josh,
CMT is only a smaller percentile of us.
Many are idiopathic with no known cause.
Your age is a benefit, as the lengthy time to regrow nerves is helped by a younger body and recuperative powers.
Supplements, especially Methyl-cobalamin
(not cyano-cobalamin) B12, help a lot.

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.

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:

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!

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.

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.

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!

When no one understands...
 

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,
Glad you clarified that.
I do believe that CMT (as well as other inherited types, gluten/Celiac, a GTT, IGT, and a raft of other tests) was one of the things my neuro looked at when I first was being evaluated and Dx'd as a reason for my PN symptoms.
I thought, at one time that I might have been one of the few, 2nd generation, Middle European, Ashkenazic descendants - with the inherited gene problem. But that was ruled out.
I would hope that any good neuro worth his salt, would explore all possible avenues available. That's why I went to Johns Hopkins.
Since many of the symptoms are only tested on a subjective basis and very few tests are available on a biological basis....to determine types of PN- it is always prudent to check all possibilities.

Still hangry with me Joshua?

Did you see my thread "very interesting" You have to have hope. My Dr told me there is a lot of research going on. We will surely win this war...Think of the thousen of souldiers that are amputated due to war. They have to come up with a solution to their pain...