Don't have the will to deal with it
 

After being in such great shape my whole life....running marathons....exercising daily....always being in great shape....I contract this crappy foot condition....nobody has the answers....I get two nerves sliced out of my feet...and they just get worse....my wife says....there's nothing we can do....you have to deal with it.....I can't...I'm not a warrior....I don't like the 24/7 pain and burning....I'm sick of it!!!!

did the Drs slice nerves out of your feet??
are they sure it is PN only and not RSD too?
we have a RSD forum if you would like to read about that.
http://neurotalk.psychcentral.com/showthread.php?t=247

How horrible. I went through the same thing...from runner and backpacker, to decrepit. Those early years were horrible. Fear of what the future held and being adrift with no direction or hope was as bad as the pain.

There is nothing in your profile about where you live. If you put it in as part of your profile there might be a good doctor or pain program in your area that somebody here can tell you about.

There are other things that can help you cope and help you heal. I've harped on the Rebuilder for years, and don't want to be like a broken record, but it's worth a try. After less than a month of my use of it, the sharp edge was off the metatarsal pain, though I still couldn't really walk. At least I was sleeping most of the night. These electric units cause the release of endorphins which quiet the nerves and promote healing.

Just know that we care about you, and will do all we can through this weird cyberworld to support you and to promote your recovery. Please be patient. You're wounded from the surgery and it takes time to heal. You've hit bottom now, but things will get better.

David:
I have a question about the rebuilder. I understand the principle behind it. You put your feet in a basin of water, you put the electrodes in the water, and a gentle current does something and helps the nerves, right?

Now how is this different than the snakeoil people who were trying to sell a ionizing foot bath thing (the video of this is on my thread about foot patches). Someone put in a link that shows a video of two ladies in white lab coats preaching about this water basin that you put your feet in and they put in two electrodes and the water changes color which tells you that toxins are coming out of your body.

So here you have essentially the same scenario. A water basin, electrodes and feet. The only difference is the rebuilder doesn't change the color of the water and it supposed to help the nerves.


In the video (with the lady in the lab coats), you have the exact same scenario, a water basin, feet in the water and two electrodes.

So how is the rebuilder different?

Thanks much.
Melody

Good question Mel!
 

Not sure of answer... but?:wink:

You are using language inaccurately so your thinking is not accurate.

Putting your feet in a basin of water with electrodes is a procedure, not a principle.

The principle behind the Rebuilder, TENS, and similar apparatus is to apply a gentle direct electric current of specific shape and frequency to 1) stimulate the nerves to fire in a specific pattern which has been experimentally found to be healing, reestablishing of synaptic integrity, and/or pain relieving, and/or to 2) stimulate certain muscles to fire with a specific pattern and amplitude to exercise them, heal them, and improve blood circulation. The Rebuilder and other electric stimulation units are often used with pasted on electrodes rather than the water bath. I think that the water bath works better because the current is spread more evenly over a wider area, and you absorb a small amount of the Epsom salts which is therapeutic in it's own right.

You do not have the same scenario, "essentially". One is a sales pitch for a procedure of unknown effectiveness. The other is the real thing you do at home or that a physical therapist does to help relieve pain and help healing. It works for animals with damaged nerves or nerve endings and I don't think they fall for sales pitches. The water changing color is a feature that the Rebuilder, TENS, etc. don't have. Too bad, that would be soooo coooool!

You do not have "the exact same" scenario. One difference is that one is bogus and the other not. You breathe in and out, "the exact same" as John Edwards. Does that mean you are extremely wealthy, male, have great hair and a million dollar smile? Of course not. Nobody but John Edwards breathes in and out "the exact same" as John Edwards. The words are "the exact same", but the reality is that they are not "the exact same".

You can say that a tabby cat walks and hunts "the exact same" way a leopard does. That isn't true. Just because the words "loose jointed walk" and "stalking and pouncing" are used for both doesn't make a tabby cat a leopard. In other words, don't confuse words with reality or pictures with reality. Words and pictures can be the exact same or similar, but the reality behind them can be as different as Adolf Hitler compared to Mel Brooks playing Adolf Hitler in "To Be or Not To Be."

There is a lot of experimental and clinical research with positive results using electric stimulation to heal and reduce pain in damaged nerves and nerve endings. You can get an idea from reading the sites at http://www.google.com/search?hl=en&s...on&btnG=Search

Here's a few thousand medical and biological journal articles if you need more convincing: http://scholar.google.com/scholar?q=...r=&btnG=Search

I'm sure that other units works as well or better than the Rebuilder. The difference is the good experience of me and others on this and the previous forum with the Rebuilder. I can't recommend others that I haven't tried. Some people in the old forum had good results with the similar Rejuvenator, but that company seems to have gone out of business.

My physical therapist used a great unit that concentrates the stimulation in an area between the electrodes, in an interference pattern. But, the ones my physical therapist use cost several thousand dollars each, require certification to buy, and training to use properly. In contrast, the Rebuilder costs hundreds and the only training needed is the video that you found so amusing.

Risking having my note to you ignored, yet again, I will offer the same suggestion, for others to read at least, if you still are unhappy to hear advice.

Cymbalta is a very good medication for those of us who are down, discouraged and in pain. It helps both mood and pain. If you are finding yourself demoralized by the pain, that will make the pain worse, which will then make mood worse. The SNRIs seem particularly helpful with this. Effexor and Cymbalta are those. Provigil added to an SSRI also works, but most insurance plans probably wouldn't okay it if one of the others hasn't been tried first.

There, Jack, I've said it again.

David...
 

You can buy an IFc unit fairly inexpensively:

http://www.healiohealth.com/tek9.asp...cific=jnnrmmm8

I have one. (there are 3 other types on that site)

Thanks MrsD.
 

That's a lot cheaper than the Rebuilder. Have you used it for nerve pain? Have you tried it with an Epsom salt divided foot bath?

The wave form is similar to the 4 lead unit my physical therapist used for extreme muscle spasms and pain caused by a herniated cervical disk, and for piriformis syndrome. That was extremely effective and soothing. He used 4 leads for my shoulder, and 2 for the piriformis pain, one on each end.

I would guess that interferential therapy would be equally soothing and healing for nerve pain. One thing that struck me going through some of the research on electrotherapy is that many different forms of electrotherapy promoted healing and reduced pain. I'm not at all convinced that the Rebuilder 7.83 Hz. pulse works better than TENS, EMS, or interferential stimulation. Again, I can recommend the Rebuilder based on experience, but realize that other units may work as well or better. It may be worthwhile to do a separate thread on electrotherapy to see what has been helping people.

For people with access to medical journals, here's a list of recent studies: http://www.electrotherapy.org/recentrefs.htm

If I'm not mistaken...didn't you also have neuroma surgery? I'm thinking, that you chunk out a piece of nerve in both feet...and my right foot became infected..so they opened it up again, and packed it and put my on IV meds for three days. Taking that packing out was the worst pain I have experienced in my life....but it healed and the scar tissue has left my second and third toes spread far apart. Residual nerve damage? Peter paying Paul?

Jakatak,

I didn't have a neuroma. My PN started as itching that rapidly turned into incredible pain between the metatarsal heads, mainly between the 3rd and 4th toes in both feet. A podiatrist evaluated that I didn't have a neuroma, but he didn't know what was wrong. The pain of that exam was memorable as he deeply probed with his fingers between the metatarsal heads.

In the old forum, I urged you to try everything else before surgery. Surgeons exaggerate their success rate. To many surgeons, greatly increased pain is still a success because the thing was removed cleanly and didn't grow back and you didn't die or loose your foot. Maybe your surgeon botched the surgery, but maybe not. Increased pain and phantom pain is fairly common after nerve resection as patients report in the various forums and blogs. Here's some links:
http://www.myfootshop.com/Discussion...2%3Bt%3D000614
http://www.triplecitizen.com/AT/foot.htm
http://www.medhelp.org/forums/neuro/messages/30626.html
This isn't the whole story. Many other people report complete or partial success and are happy with the results of Morton neuroma removal. Either it was botched, or you idiosyncratically reacted poorly, as some do.

The thing with surgery is you can't take it back. The issue is, what to do now. I would treat it as PN whether it is or not because what helps PN also reduces inflammation and promotes healing in general. That would involve a big commitment from you to do whatever is needed for the rest of your life to live a good life and to get healthier. You'd have to be unstoppable and be willing to try different things and never give up. If a doctor is all doom and gloom, you'd have to find another doctor.

There'll probably be no single magic thing that makes it better. You're probably going to be dealing with this for a while. Who you are and how you approach living with very sore feet is the choice you have now. Part of that would be seeking pain relief, but it would also involve doing what promotes healing, learning to be happy, being on an emotional even keel, and having a rich, active, and rewarding life in spite of the agony. There is light at the end of the tunnel, but it's up to you to get to it.

Your story breaks my heart. To be clear, I'm not blaming you or anybody else for your pain and suffering. What I'm saying is that this is your one life to live. You have choices, pain or not. You can choose happiness, pain or not. You are not the pain, not the disease, not a patient. That's the process in pain management: from patient to person. We each have to find our own way to do that.

You are at rock bottom now. I'm confident you can dig your way up from this misery if that's what you are totally committed to do.

Jakatak
You have had lots of advice from others, all I can offer is that I have been in a dark place thinking that I would never enjoy life, or have a life. I became my pain and could not think of anything else except the pain. I do not know what my diagnosis will be, I am waiting to have a brain and spine MRI so I am facing so fears and uncertainty. I am taking an anti depressant which I am sure is helping me trough this difficult time. LizaJane has made a good suggestion about Cymbalta, which may also help with the pain as well as helping to deal with your feelings of finding the pain so hard to take 24/7. I wish you well and do hope that you will start to feel better about life, David is right that we all only have one life to live and that we have choices. I hope that you will find someway to get better pain relief and will feel more positive about things.
Lupin

Thanks so much
 

The Footshop.com site is one that I have frequented on many occasion. I appreciate the listings you gave me. I do remember you as being so insightful and possess tremendous knowledge. I do have to find a way to cope with this pain. It is so hard to wake up each morning and realize that it isn't going to go away. I can deal with my arthritic knee, and the creaky back. I just have to find the "solution" to my angst.

jackatak
 

"I just have to find the "solution" to my angst."

Wow. You just jumped off the cliff, like one of those baby eagles that we've all been looking at will do in a month or so. I know that you will overcome your angst and find a better life if you don't give in to fear, anger, worry, or cynicism.

Your courage has touched, moved, and inspired me to be stronger and wiser in my own efforts. Thank you.

David...
 

I use it for my leg... my foot issues do not cause so much pain, and I have not tried it there. The PN in my feet is irritating but not terribly painful. I control burning (which is more common in summer) with Biofreeze gel.

I had a chart for placement of the electrodes, and I'll try to find it for you.
No, I don't use it with water, or mag.

It is best with 4 electrodes, and you put them A B B A in a square with the target in the middle.
The PTs at my rehab place said IFc is far superior to TENS etc. It supposedly actually heals.

If you want the website with placement locations, please confirm and I'll look it up for you. (if I still have it, or it is still open).

Now that I've maxed out on Lyrica and Tramadol (also tried Cymbalta) have started weaning off the brain food and will try the Fentanyl Patches next. I got 2 fairly good years on neurotin, then Lyrica and Tramadol, but like everything else the body seems to build up a tolerance. Also the side effects seem to become more pronounced and adding Cymbalta paid no dividend. The Rebuilder was there at the start and well worth the cost (I like toys) and it will help get me off the meds. If you like to experiment you can use the electrodes on the Rebuilder on the nerves in the legs and feet. The foot bath is great while surfing the net. If you have never had neck surgery this is an easy exercise for heavy feeling in the legs. Lay flat on your back in bed, move your head so it is hanging over the side, slowly roll it from side to side, stay relaxed as possible. When you get up and start walking it feels as if 15 pounds has been removed from each leg. Don't overdo this at first as it will make you nauseous.

Jack
 

A lot of people have already posted some helpful advice. To that, I would like to suggest that you get some 11x14 heavy blue ice packs (ColPak by Chattanooga), freeze them, wrap 1 in a hand towel and apply to feet, knees moving to wherever it hurts. I use them at night and move them around where I hurt and swap one out for a colder one. Cold helps nerve pain in a lot of people. I could not make it without these. Get a couple and at least give them a try. You can usually get them locally from Chiropractors, but you can get them cheaper on the Internet.

These do not sweat and make you wet all over like other ice packs. They feel sooo good... They are used in sports medicine.

Also, the kind of shoes and socks can affect your pain. I cannot tolerate anything but all cotton and no tight shoes. I had a huge brown bag full of expensive custom made shoe inserts, which constantly had to be remade, because I could not stand where they touched the bottoms of my feet.

Cathie

YorkieMom. I found your posting about the cold packs absolutely amazing. I cannot use anything cold anywhere on my body.

For instance, years ago, I had spasm in my lower back. I had pinched nerves all over the place, I couldn't move my neck to the right and left, and my left shoulder was driving me crazy. My doctor sent me to rehabilitation and physical therapy.

The first thing they did was put a hot pack and then the electrodes. That was nice. I wouldn't let them rev it up too much because I felt like I would be electrocuted and I wasn't about to do this. Then they gave me this very nice massage. That was just fine.

Then they sent me into a room and had me sit up and they put this ice cold pack on my lower back. I HATED IT. COULDN'T STAND IT AND WHEN I SAID "TAKE THIS DARN THING OFF OF ME, THEY SAID "NO, THIS IS GOOD FOR SPASMS!!!" I just took it off and told them not to use it on me again.
I DON'T LIKE ANYTHING COLD ON MY BODY.

When my feet get cold (like in the winter), I just microwave my microwave bead thing. Then I put my feet on the thing and my feet don't freeze up.

Something about my body does not like cold. I'm absolutely fine when it's 95 degrees. I once went walking all day long when everybody else was dying in the heat and pouring ice water all over them. They took a look at me (using my ipod) and swinging my arms when I power walk and they just shook their heads in amazement as if to say "how on earth can this person walk in this hot weather". I have degenerative joint disease and when it's 95 outside, I DON'T FEEL ANY PAIN. I just take my bottled water and I go walking.

But forget about that when it's 40 or below. I am stiff as a board.

I think I need to move to either Las vegas or New Mexico.
But all my doctors are here so I can't move anywhere.

And congratulate me, I WENT TO THE DENTIST YESTERDAY. I am a severe dental phobic but I found the nicest phobia dentist in NYC. Takes me two hours to get there by Access-a-ride but I wouldn't go to anybody else.
He's a doll. Alan couldn't believe I actually made the appointment to get my teeth cleaned. He knows my phobia. My in-laws met up with me there. They are my support system.
The staff is so nice to me. So now my teeth are nice and clean and I don't have to go back for another 6 months. You have no idea how hard this was for me. But I've decided to get my life back and at almost 60 years old, doing this is one step at a time.

BUT I DID IT. I went to the dentist. Yippee.

Melody

Cold packs work like a miracle for pain and healing. That's why professional athletes use them for slight and serious injury. Once the tissue cools down after the initial shock they actually feel warm. They deaden pain almost 100%. Ice packs also promote healing because the cold reduces swelling and inflammation, and new blood comes to the area when the ice pack is removed.

Don't let the initial shock of the cold stop you. Just endure it for a minute or two. You'll see. It'll make you comfortably numb.

Some procedures and cautions:
- Ice on for 20 minutes, then remove. You can repeat hourly.
- You can alternate with warm for injuries except when swelling is present. If swelling is present, use only cold.
- Be careful about frostbite. If your freezer is below 0 degrees F., double wrap the pack. I like ice cubes and a little water in a doubled zip-lock plastic bag. It is always 32 degrees until all the ice melts and thus cannot cause frostbite. However, as Cathie pointed out, they are drippy. Even without leaks, moisture condenses on them.
- For nerve pain, use cold only. Heat makes PN pain worse.

So, where is heat good? For infection, tissue damage and injury without swelling present. Warm increases blood flow to the area, speeds up the healing process, and helps your white cells and antibodies kill bacteria and clean up the area.

Heat may or may not be good, but cold packs always are.

Amazing
 

The one thing I notice...almost universally...with all the wonderful people on this website is the courage that you all possess. My sister had osteogenic sarcoma as a 13 year old...she lost her right leg....she survived...only to get breast cancer at 48...she survived that too....she just lost her job and is barely hanging on to her home.....I...on the other hand...have a beautiful home...a nice paying job....a wonderful wife...and I am ready to end it all. I just don't have the energy to live a life of disability. Now trust me....I'm not asking for 911 or some...get some help...kind of support...I'm just rambling tonight, because I used to be such an athlete....I was always so in shape...My best friend died of lupus...and I never thought I'd be affected by anything...other than a heart attack at 90. I don't want to live a life of pain and sorrow...be miserable...and not be positive for my wife. She is 10 years my junior and in perfect health....she has supported me when I gave up on cycling at the club, because it aggravated my arthitic knee....she supported me on so many things...she shouldn't have to do that...I remember the line from Saturday Night Live...."It's better to look good than feel good". I am a 57 year old male who looks about 40, but am know feeling about 80. In the old days we all checked out at about 50....I think that is probably a good thing. I am so jealous of men my age that are healthy....running...biking...and in wondeful shape......I really do want to check out. Not a pity message...so...you know who you are....please don't rip me.

When any major crisis hits most of us go through the stages of grief- this happens when we have health set backs too.

[A Normal Life Process

At some point in our lives, each of us faces the loss of someone or something dear to us. The grief that follows such a loss can seem unbearable, but grief is actually a healing process. Grief is the emotional suffering we feel after a loss of some kind. The death of a loved one, loss of a limb, even intense disappointment can cause grief. Dr. Elisabeth Kubler-Ross has named five stages of grief people go through following a serious loss. Sometimes people get stuck in one of the first four stages. Their lives can be painful until they move to the fifth stage - acceptance.
Five Stages Of Grief

1. Denial and Isolation.
At first, we tend to deny the loss has taken place, and may withdraw from our usual social contacts. This stage may last a few moments, or longer.
2. Anger.
The grieving person may then be furious at the person who inflicted the hurt (even if she's dead), or at the world, for letting it happen. He may be angry with himself for letting the event take place, even if, realistically, nothing could have stopped it.
3. Bargaining.
Now the grieving person may make bargains with God, asking, "If I do this, will you take away the loss?"
4. Depression.
The person feels numb, although anger and sadness may remain underneath.
5. Acceptance.
This is when the anger, sadness and mourning have tapered off. The person simply accepts the reality of the loss.

Grief And Stress

During grief, it is common to have many conflicting feelings. Sorrow, anger, loneliness, sadness, shame, anxiety, and guilt often accompany serious losses. Having so many strong feelings can be very stressful.

Yet denying the feelings, and failing to work through the five stages of grief, is harder on the body and mind than going through them. When people suggest "looking on the bright side," or other ways of cutting off difficult feelings, the grieving person may feel pressured to hide or deny these emotions. Then it will take longer for healing to take place.
Recovering From Grief

Grieving and its stresses pass more quickly, with good self-care habits. It helps to have a close circle of family or friends. It also helps to eat a balanced diet, drink enough non-alcoholic fluids, get exercise and rest.

Most people are unprepared for grief, since so often, tragedy strikes suddenly, without warning. If good self-care habits are always practiced, it helps the person to deal with the pain and shock of loss until acceptance is reached.]

from -
http://www.memorialhospital.org/libr...ess-THE-3.html

Hi Jak:

Reminds me of when Alan was at his worse (with his PN), years ago. He told me recently, "Melody, I never told you this, but I was ready to end it all". I was so shocked, I never knew he felt like that.

But as you now know, Alan got a break and got better.

Miracles do happen.

I am praying for one for you!!!

Take care, Melody

OK Jack...
 

Time for some serious stuff... Please don't check out on us, your wife or family. I know it's tempting, but think about the pain you would cause those left behind who love and care about you. I understand you are not asking for pity. Pain is a tough row to hoe, for sure...

What if.... You found a doctor tomorrow, who with the right combination of meds, could give you at least a part of your old life back, maybe quite a bit of it back... Or if not tomorrow, the next day or the next? Please don't give in to this temptation...

When I first got sick, I was in such agony, I would call my husband at school every day screaming, crying and threatening to do myself in. Like you, I wasn't asking for pity either-I wanted relief AND my old life back. At 48, I could not imagine living like I was living. However, the medication I am on at least checks part of the pain and symptoms. No, I don't like taking it, but it has at least given me a portion of my life back.

Am I still angry? YES!!!! But, I am trying very hard to focus on what I can do though.

The other thing that has been a blessing is that I have a supportive spouse, just as you do. I don't know you well, or your spouse, but from some of what you have said, she still loves you, even if you cannot do some of the things you used to be able to do. Isn't that worth living for?

Please, pick up the phone tomorrow and call a pain management doctor. Meanwhile, get to a Rheumatologist and see if they can determine if you have some autoimmune issues. You know some of the autoimmune diseases can also cause PN. If you don't, a good, supportive pain management doctor might be able to give you some relief...

And, give the ice a try. I will be happy to send you one of my ice packs, if you would like to try one out...

Cathie

It has been such a comfort knowing we can count on each other. And now i
know what a relieve for my children.They can't cure you and i know my pain
is breaking there hearts.They see there once very active mom barely able to
make it up the stairs.

I to have cried,complained far to much,yes even to people on the street.:(
Why mybe, i was so desperate i thought a cure would pop out of there
mouths.And yes i to have had those thought i can't do this anymore.

Than you get a call like i did,my daugters sweet happy :) voice mom i had
to call you first your going to be a Gradmama:D There's no amount of pain
that would make miss that..What a wonderfull world,except for today OUCH!
All kinds of blessings to all of you...:hug: Sue, May 1st could be baby day :

Let's all hope...
 

I hear you. Ever since I started getting so sick and having this excruciating burning all over my body - very "bad" thoughts have crossed my mind.

I wonder if I'm going to become a burden on my husband very prematurely. He's only 26 - I'm 28. I don't want to become an embarassment to him. I have trouble even feeling like a "woman", which is another heartache.

There were times when I read things about PN progression when I seriously thought I should throw in the towel in advance. Not knowing how fast this will go, or what the pain will be like......it's maddening at times.

But like other people have said - who knows? Tomorrow this COULD just get better, or maybe the docs will figure something out....or maybe a new treatment will come up some years from now. So, I've decided to stay in the fight as long as I can, change some of my own bad habits. I don't know why this is happening to me - sometimes I think I must have upset Karma or something - but it doesn't matter...I have to struggle on.

I don't know how bad it is for you, I'm sure even I would have my limit. But I think I want to go on as long as I can, with hope for a bit of relief/hope somewhere soon.

Liz

O.K., my turn to chime in
 

Many of the people on here remember my not so recent diagnosis. I am the single mom of 2 daughters and a granddaughter. I have NO ONE to take care of me. I have been raising them alone for 18 years and if I don't work, no one will pay rent, no one will buy food, and no one will pay for the medical insurance.

I have NEVER had to ask for help from anyone, I was raised by alcoholic parents and learned to feed and take care of my brothers when I was 7 years old. I don't depend on other people for anything.

I also used to run 5 miles every morning, workout in the gym at lunch, put myself through college while my daughters were at dancing lessons, and worked as a secretary during the day to pay the rent. I finally made it into management, and am paying for my daughters to go to college, still renting a house, helping raise my granddaughter, I was the Supermom who needed NO ONE. One day I get a phone call that my mom put a gun to her heart and pulled the trigger. Three weeks later, my 16 year old daughter gave birth to a baby girl... I started to get sick, slow down, I thought it was grief, depression... suddenly, I couldn't even drive myself to work!

Then the doctors tell me I am going to be disabled and I have to take drugs just to be able to walk to the bathroom! I had to use a cane to walk at work. I have to ask for help from other people! That is like asking me to cut off my arms and legs! I would starve to death and work two jobs to feed my children before I would take a hand out from anyone.

This is a very humbling disease. It teaches you that you are not alone in this world, and there are many people who love you, if you will just let them. If you think you were a strong person before, you have no idea the challenges you will be able to overcome!

Once I learned to accept it, and work with it instead of against it, I started to heal, now I walk normally, I eat healthy, my granddaughter just turned 4 years old and I can ride bikes with her... life is getting better! I still can't run yet, but I haven't given up!

Helllooo Jack
 

Where are you? I am hoping to hear from you.

Cathie

So Many Warrior Stories
 

It embarrasses me to even think that my "pain" is even in the same league as the real gutsy people that have responded to my rants. My pain is just in my feet.....yes....I wish I didn't have the constant numbness and aching and reminder that it will never be "right" again, but it hasn't moved up my legs, or in my arms. I can't do the things I used to do as a young man, but I'm not confined to a wheelchair....or a cane......My HMO will NOT assist me in being referred to a pain clinic, so I guess I will have to try and find an alternative, since the taking of narcotics will also not be condoned by my GP or my neurologist. Minnesota connotes narcotic abuse. Maybe I can get involved in Tai chi or qigong.....as an alternative to traditional western medicine. I wish I would have thought of that before I had the Podiatrist chop up my feet.

Hang in there
 

Jakatak,

Reading thru this thread - yes, so many of us have had to leave our "old" lives behind and adjust and make the best we can going forward with what we have now.... and it is very very hard..... one day I was wokring hard, playing hard, and loving every day - and literally a year later really homebound, unable to work, having to use a wheelchair or walker, no longer able to eat food (only liquids now for 6 years) - and most devestating - the lost of who I was, and being a "normal" part of society... it sucks... but, I believe theres a reason and a lesson here somewhere for me, and every day try to find something to feel like I'm still making a contribution and going forward.....

Yes, there have been many nights I wonder why I'm still here - that I had a great life until I got sick and that was enough and how valuable a contribution can I possibly make going forward.... I dont have the answer...but do unfortunately have had freinds over the years decide they could not handle going forward for one reason or another and take their own lives..... the pain and suffering of their family and friends at their loss they will never know - but its intense - and never goes away..... survivors are left wondering how they could have helped, if they could have made a difference......

It sounds like you have a wonderful family - they need you and support you, even if our physical bodies are no longer what they were - you are still living in there - and that person is who is important - not the ability to run etc.... yes, debilitiong illness is a huge loss for us - but its also a bridge to something new, and its up to us to try to find it and continue on....

I'll get off my soapbox - but hang in there - we have to - life is so precious and goes by so fast - grab what you can!

Hi Jak:

Let me see if I have this straight. Your doctor won't refer you to a pain clinic, even though you are in pain.

And this is because your stat has some kind of "zero tolerance" for pain meds if the patient needs it. Because they are afraid you'll become addicted?? Is this correct?

If this is the case, I'd get on the phone to my representatives and tell them what's going on. Maybe, politically, someone Higher Up on the totem pole, well, maybe they can get you into some research program, or some protocol where you will be given something to manage your pain.

I got into a diabetes protocol at Cornell Medical Center because they were doing a 9 year study on the affect of Cardio vascular disease in diabetic women. I get all my meds and testing stuff at no cost and I get complete physicals, (head to toe), all eye testing (done by a top guy at Cornell). All of this for no cost because I am in the ACCORD PROGRAM.

You should have seen the face on the guy in the Opthamologist's office in the Cornell Building, when I was sent for my first complete eye examination. There was this case with $500 eye glasses. There were people who had some kind of implants in their eyes and they were showing me their implant cards. I never saw such hi-tech stuff in my life. When they asked me what I was there for and I said "I'm in the ACCORD program and I'm in a study protocol and I don't pay, well the look on their face was priceless.

As was the look on the face of the guy at the front desk when I gave him my appointment letter and he goes "what kind of insurance do you have?" and I said "I don't need insurance, I don't pay anything". and he goes "what kind of nonsense is that, what do you mean YOU DON'T PAY??" and I simply said one word ACCORD. Shut him right up.

The point I am making is this. If I had never looked into study protocols and various programs, I would have never found the ACCORD program and I wouldn't be where I am today.

Maybe, in your state, there might be SOMETHING to look into where you can get pain management. I think it's terribly unfair for your doctor to expect you to be in pain and not give you what you need simply because he thinks you might become addicted.

Like I said in a previous post. "Let the doctors spend one day with neuropathy" You'll see how fast they pass a pain management bill or something to that effect!!!

sending you cyber hugs.:grouphug:
Mlody

Jak, if it was me i would give these doc's the big flick, & find doc's that are willing to help you, if they can't then they should send you to someone who is trained in this field, like a pain doctor.
Its a disgrace to leave you in terrible pain & do nothing for you, looks like you will have to get the ball rolling yourself, by the looks of it.
All of this must be affecting your emotional status and certainly would be aggravating your PN more so.
good luck
Brian :)

Jak, your pain is no less than ours!
 

Jak,
Just becuase your pain is "only" in your feet doesn't make it any less than any one elses! The reality of it all is... your life has changed forever! Who you are as a person has been taken away from you. That is what hurts.

That is the first hurdle we have to face when we are diagnosed with this. For me, it was the hardest. Then, it's adjusting to dealing with the changes in lifestyle. This group here has been so incredibly supportive in helping me!

Keep asking questions, no matter how goofy you think they are, keep reading posts, and keep venting when you need to. If you don't believe me, go back and read some of our old posts. I've vented a LOT on here! I'm a single woman and I've vented about not being able to find a man who will accept me like this, about not being able to take care of my kids, about lots of things... it's hard to adjust to being "different" than we were before!

A friend of mine here at work says "I shouldn't complain about the pain in my feet when the man next to me has no feet!" But I say, if your job is to go and get the food for the man with no feet, you darned sure can complain about the pain in your feet! It all depends on your perspective!

Everyone has a right to complain and we are all here to help each other through it.

Good Luck, and we hope to hear a LOT more from you!

jak
 

Go back and read the 5 stages jo 55 posted. Please learn them because
someday you wil be able to tell them to another in pain.If nothing else,
your concern for them,may begin there healing!!And back to what goes
around comes around.

I've been dealing with polyneoropathes probably far longer then i know are
care to know ( there here ) it's back to one day at a time..I live by a big
teaching hospial.I was a nurse in bigger one's.But was toally surprised there
was no support group for PNers..What i know the call it the silent deseae.
Come on 3 hospitals a great rehab!! Go to arthritis support or this or that.
:) Even have one Dr. who was very busy as me to refresh his menory
on PR, I threw everything my record, my notes ohis desk. Almost wore me
out!! I told i can wait while you have these copied,and then you can read
it all tonight.:) thought there is another waste of my time.He did have
them copied. Hmm!!

My Neuro Dr. said go on-line and 2 years later i did..But first i wanted to
start a support group for those who had no computer or could not afford
affore them.

I called a chaplain friend ,asked if he could help and 2 nurse friends We
decided when,where and how many we could handle. Stared putting up
posters.We decided we could start out with 10 but nobody called:( at
the last min.to many did,we had a large waiting list.We went from a church
to the teaching hospital..The supprt group made the rules..The support
allowed Dr. and nurses could monitor (be quiet) they did and i hope
learned..I :( have beeen asked to start one at another hospital but i have
learned to PACE myself i said no!!But there it someone who will.

I learned acceptance,if you need to vent i would ratter do it in front of
the people at Neuro talk or in the supprt group,not to 3 children who love
me.I think if you put your energy in something you can still do,well anyway
it helped.I reached out and asked for help,also hard for me s.But you must,
tell your family these is a very bad i know you can't cure me but please
won't you take the time to lsten..I'm sure they will and tell them the 5
stages..And i think you just might make it to acceptance then you can get
on and do many things that make you pround and yes happy.

Not all Neuro Dr. could a hoot about PN you got 1. Having a Hmo can put
a limit on who can see,but don't put a limit on what you can do.Get out
and find your place it's there,and your here getting great advice.
Do you know how many eldery are sent home to suffer because a Dr. has
said (your just old) :mad: That should be answered and your (stupid)!!

What i'm tying to say it's your foot it hurts vent.:)..My youngest son has
his 30 yr. old sister-law who has been throgh PN for 2 yrs..They live in your
area,she was very sucessful at everything she has ever done she had to

darn
 

Sorry that one got away from my acking finger!!:D

She had to go on disabiliby,for a short time..But it gave her the time
to get the help she needed no shame she is back working part time.
It helped her get the right medical help..Jak look at all the people reaching
out to you!!There is always walking it gives you time to look around.
I believe walkers,wheelchairs canes doesn't matter attitude does.:)
Many blessings..:grouphug: Sue

Oh Boy
 

I'm somewhat afraid to totally vent...there is an individual who has been a resident poster on the old site...and this one...who did not take kindly to my complaining....This individual said that all I did was complain and never gave input into other peoples situations....this person really did make me gun shy...and "this" individual has not spoken to me since. I do feel a tad hurt. Because "this" person has had major feedback on both websites. So....I think I will just chill.....and try not to aggravate anybody. I hope that my pain doesn't get any worse....and I will wait to see if my doctor will approve narcotics with me signing a contract. I only hope!

If we can't vent here, I'm in BIG trouble!
 

Hey, if we can't vent here, I'm in BIG trouble! I don't want to lay my problems on my kids. I come here to ask questions. I come here to find out how others deal with the issues. Are you kidding? This crap has changed my world and the people here are the only ones that "get" what I'm going through. If I can't vent here, then I'm in the wrong place! If they don't want to hear/read it, then don't read it! It's just like the T.V. change the channel...

Jak,
I hope that you didbn't think I was saying anything other than you've got to find a doc willing to work witth you, and get your priorities straigh.
Don't bother with anything but just pain control was my only message for you.
I wasn't the one telling you to stop your vent.
This is a place for it.
Its also a place to get suggestions, to implement -for your own situation.
We hope the suggestions help, not hinder.

I think you need a plate of my honey chicken, garlic artichokes, sweet patatas and of course a lovely blueberry banana muffin.

With a nice cup of my coffee.

Yessir: perk you right up!!!!

lol
Melody

Can I get your Muffin recipe Mel?
 

I've been thinking about those muffins all week long... and wondering if I can get the recipe! Can you post it?

Happy Muffin Making
 

Here you go. Simple as Pie.

Take two little boxes of Blueberry Muffin mix. Down here it's Jiffy Muffin Mix.
You can use any of them. Banana Walnut, Blueberry, etc.

Anyone will do. Alan and I like the blueberry one.

Preheat oven to 400 degrees

Using two boxes, empty boxes and put into mixing bowl.
One half cup of skim milk.
One half cup of egg beaters (or two eggs, if you prefer).
4 packets of splenda
A dash of Sugar Free Maple Syrup (sweetened with Splenda) not anything else.
Mix all this up in the bowl.

Now to this mixture, you can add a small box of raisins, a chopped up banana (what ever you like).

But the thing that makes it very moist is the "no sugar added" applesauce.

I buy the 6 pack and open one of the little individal packs of Natural Applesauce and I scoop it right in the batter.

Mix it thoroughly.

Now get two muffin pans or do what I do (I use a big 12 muffin pan thing).

I spray it with PAM so nothing will stick.

I then (using a ladle), pour almost to the top of each muffin thing. See the box says to pour in the batter half way so it rises to the top. But I don't do that.

I pour it almost to the top so as it rises it overflows ever so slightly making these adorable rims over the muffins.


Cook only 15 minutes.!!!!!

I make 12 muffins out of this. When they come out of the oven, let them cool a bit.

Using a wide knife kind of thing, gently pry each muffin out of it's thing.

Put on a platter and you're good to go.

YOU MUST TELL ME HOW YOU LIKE THESE.

Oh, when I am using a banana, I make the batter, put the batter in the muffin tray things, and I slice up the banana thinly and I drop three slices of banana into each muffin thing. Then I stick two or three raisins on top.
You can make endless variations on these.

As it cooks, you see bits of banana in the muffins. Really cool looking.

Alan goes nuts. I made a batch today. He just had two of them.


AND HERE THEY ARE!!!!

http://i73.photobucket.com/albums/i2...elsmuffins.jpg