Well, here I am posting. Can't believe it. Somehow I started getting Pn years ago and I have been in denial ever since. This week I started taking cymbalta and I am fighting the urge to stop taking it starting tomorrow. I will say that i have felt a difference in the pain since the first day of taking it. Why I want to stop? Denial I guess and a slight headache. I'm hoping the depressive part will help. I no longer can ride horses which I did my whole life. My doctor couldn't even tell me why this happened. I guess it would be better to accept if I knew why. All blood work in the past years never showed Diabetes. I am afraid to take drugs. I never was one to run to a doctor and never wanted to take drugs of any kind. So, here I am hoping someone can give advise. thanks

Welcome to our forum. You will like it here. There are plenty of nice and very supportive people here with a lot of helpful information. We may not know all of the answers to questions you have, but everyone here is always willing to help out if they can.

Could you please tell us a little about your health history, like the circumstances surrounding this when it started and also what symptoms you were experiencing? Have you had any testing done?

Your doctor may have told you that sometimes there is no answer asto why PN develops, however there are some things that might give you some relief.

Cathie

Hello Horselover,

I am like you, I've never been sick, never had a broken bone (except a fractured one). Don't drink, do drugs, never abused my body... don't even take aspirin when I get a headache unless it's absolutely unavoidable. Now I take drugs every day. I was the one who said almost everything could be controlled with exercise and diet. Well, the pain in my legs and feet convinced me otherwise. When I started missing too much work and couldn't walk from one end of my house to the other, I finally gave in.

I still don't have any answers from the doctors. Just "medical explanations for what I have"... most of my answers have come from this board! Most of my diet and vitamin and exercise suggestions have come from this board.

In December of this year, I was ready to file for permanent disability, now I am dating three men, going to the gym four days a week, and watching my granddaughter two days a week.

What I have learned from these people on these boards is:
1. It's all about stress and taking care of yourself
2. Don't stop till you find the doctor(s) you feel "hears" you and works with you
3. Meds are / can be your friend, and they are ever changing
4. This disease is not predictible, it comes and goes like the tides in the ocean! You have to learn to "listen" to your body and work with it.
5. Keep talking and listening to the group here. Some have been dealing with this disease for decades and they are still learning! This is a great place to learn!

If you look back on my posts, you will see that I am a tough cookie that never ever leaned on anyone and I have come a long way in the last six months since being diagnosed.

Denial is an apt word, as the critters always need care, if YOU can do it or not.

I've found that while my endurance and overall strength is compromised, all the lessons I'd learned about body position and BALANCE of me working with the horse are keeping me from being in a body cast. I don't think that's what you wanted to hear, but, knowing how your body relates to the horse AND the rest of the world helps you deal with coping with the world and just you. That's why I'm an advocate for physical therapy and doing it all slowly and very correctly. There aren't any quick fixes here as anywhere I'm guessing.

As for drugs...you'd med your horse, wouldn't you to keep him/her/it from undue pain? Why are YOU different? IF you can find the best combo of meds that ease pain and increase function and performance, how is that different? Being able to sleep more than 4 continuous hours a night is a GOOD thing, just so's your meds are tuned to you so you can speak complete sentences you'll be fine. Fortunately my friends let me come 'visit' providing I bring carrots!

Tell us more, and we will help you cope. There are good people here! - j

We have a philosophical difference. I medicate my animals, but as little as possible to help them through rough spots. Instead of, let's say Rimadyl or another non-steroidal anti-inflammatory drug for arthritis pain, I gave my dogs glucosamine-chondroitin and a fish oil capsule twice a day with meals, and exercise them daily. We recently put down two 17 yr old large dogs for reasons other than arthritis. Both were walking a mile or two a day with us until the end. My remaining 15 yr. old 60 lb. mutt is doing fine, though she is getting a distinguished gray snout. I'm not anti-drug per se. When one of my dogs injured his foot and needed surgery, I gave him all the pain killers he needed. Same for myself post surgical or post injury on a short term basis.

People don't die of PN, though they may die of the underlying causes. Drugs that reduce pain, while appropriate for the short term, come with a heavy long term cost. There are no effective and safe drugs for PN pain that don't have unexpected negative side effects. All cause dependency in that they are very hard to quit because of extreme pain when use of them is stopped.

One thing to realize is that PN is for most of us a chronic disease. We can learn to live with it, and even be happy while still having PN. It makes more sense to me to come up with attitudes and strategies for the long haul that will serve us well and promote general health for the rest of our lives while at the same time reducing pain, and either slowing the progression of or reversing our PN.

There are many effective non-drug healing and pain relieving strategies that are not only safe, they are good for your general health and vitality, good for your heart, and even reduce the risk of cancer. They encompass changes in diet, daily exercise, massage, stress reduction, learning to live in the moment and not worry so much about the future and getting emotional about it. I believe this last part is why animals handle extreme pain so much better than we do. Strong emotions such as fear, worry, anger, hate, or frustration make our symptoms worse for days and prevent healing. Good emotions make our symptoms better and foster healing.

Doctors are trained to prescribe drugs and do surgery. That is their hammer, and you look like a nail to them. The first thing most doctors do when confronted with PN is prescribe anticonvulsant or tranquilizing drugs, usually before getting a differential diagnosis. We've had people here almost die because their doctors didn't go beyond prescribing drugs.

Ultimately, you are responsible for your health, not the doctors and not us. I'd recommend learning all you can about PN in general and your PN in particular before getting on the drug train.

A good place to start learning is our "Stickies" section. There are links to other web sites, book recommendations, medically oriented articles and links, the excellent charts at www.lizajane.org to organize your labs and other tests and as a guide to help your doctor diagnose the causes of your PN, and product recommendations. Another bit of free advice is to push for a differential diagnosis of the type of PN you have, what kinds of nerves are involved, what are the causes, and are any of those causes reversible.

Let me throw out a couple of "what ifs".

- What if your PN is caused by entrapment of nerves leaving your spinal chord. That would cause pain in your feet and legs, possibly your arms and hands also, and possibly some or total loss of motor function. Eventually the nerves die from the pressure, but the pressure is remediable with physical therapy, the right exercises and stretches, nerve healing diet and supplements, and possible surgery.

- What if you never find out if nerve entrapment or something else remediable is causing your PN because you're taking Cymbalta and it relieves the symptoms to a tolerable level so you stop learning and stop pushing your doctors to find out what and why. What if you could have gotten back to your beloved horses, but instead you spent the rest of your long life with diminished physical capacity from whatever is causing the PN, and mentally diminished from the powerful drugs you're taking.

- What if your PN is painful small fiber idiopathic that was caused by one event: an infection, a course of Cipro or some other PN causing antibiotic, a reaction the statin drugs you're taking, or other physical or chemical trauma.

Instead of helping your nerves and brain heal from this (healing has happened with many of us here), what if you are spaced out on Cymbalta, Neurontin, or some other drug and feeling sorry for yourself and a bit bitter and angry and that's who you become.

That was the route all three of my neurologists suggested. Only the last one had done a thorough enough workup to know what exactly was wrong and which nerve fibers of what type were involved. The cause of the damage remains unknown. All three gave me a negative prognosis. All three neurologists told me variations of this line, "You look just like the nail I've been trained to recognize. It's hopeless. The pain and disability will slowly get worse and worse until the nerves die and you're crippled. Meanwhile, this drug (Elevil or Neurontin...this was a few years ago) will take the edge off of the pain."

They were all wrong. I feel tingling and warmth in my feet and legs at this moment, but am not numb, walk daily, work physically, and sleep pain free most nights. I have a few areas of numbness, but less that a decade ago.

You have choices and decisions to make. There is life after PN, and you can have a good life with PN. You can follow your fears and worries and passively go along with whatever the doctor says. That's the path of least effort and least resistance, but I think you can do a lot better for yourself.

You can empower yourself to take charge. learn about PN, do all you can to heal yourself, get the help you need, and thrive. Part of taking charge may involve taking drugs, but that would be your decision, not ours and not the doctors. You can once again be a powerful woman instead of a victim or a disease.

P.S. I just had the thought that anybody who can control a thousand pound semi-tame animal has nothing to fear. I bet it took longer than a few months and a passion to succeed to get good with horses, right? I used to ride a lot, and know that's the case. In the same way, with time, effort, and passion you can learn to powerfully deal with PN. Believe me, the effort is well worth it. In a way, PN can be a gift, the start and the motivator for an adventure of new learning, self discovery, personal power, and spiritual growth.

were developed in the 70's & 80's to ease the aches and pains of racehorses [and not the champs either, quite common for claimers]. It took another dozen years of work to make it tolerable for humans. Same for 'bute', which is used for humans now, but not often. Ivermectin, a wormer, is yet another case in point.

I believe you missed my point. Endorsing one particular treatment over another AS ONE BEING treated is fine. However, for each person circumstances can vary greatly due to the type of neuropathy[ies] one has, be it toxic, acquired, hereditary, or whatever. Particularly it is especially important to know which form of neuropathy is of particular issue should that condition be progressive.

I say this only in that I HAD a neurologist who did not recognize the symptoms of an auto-immune neuropathy, and that, if I had not sought treatment and diagnosis for it elsewhere, it could have had drastic consequences. It is very much each individual's judgement call about what treatment to use, and how to use, and use wisely.

By the way, while my 'appendages' are affected, my central body and head are not, and when I have ridden, the 'gyroscope of balance' works just fine. It's the lack of arm and leg strength that are a shortcoming-but there are horses out there that do not need such strength to ride or train or enjoy. -j

Interestingly the 'muscle memory' worked great!

dahlek,

I don't think we're in fundamental disagreement. I'm looking at and stressing one part of adjusting to getting PN, and urging the lady to learn, accept, and take action. That sounds like what you did.

As you point out, the supplements that help animals often help us, and visa versa. Some drugs can even promote healing, like Adequan for horses' and dogs' osteoarthritis (hopefully approved for people soon), but that's a side issue. I was trying to make the point that there are healing alternatives to drugs and used my dogs as an example.

Drugs can be an appropriate part of dealing with PN depending on the individual, the specific problems, and on the drug. My point is the danger of just accepting what a doctor says and prescribes at face value, and than not doing anything else for ourselves but hunt for the most pain relieving medication. Leaving it at that sells ourselves, our potential, and the rest of our lives short.

The stakes are a lot higher for us than for our doctors. Our experience are cases in point. My PN is self limiting and a lot of healing can take place if I do the right things, but that's not what any of the neuros told me. Had I started with Neurontin and gotten relief, I doubt if I would have pursued how to heal from PN and discovered the wide range of things that are demonstrated to help, both clinically and in the lab (the Braintalk forums were an important part of that discovery). I'm no longer decrepit and in extreme pain like the first couple of years after this started, have my balance back, and am very active. Horselover can have a similar outcome.

Horselover, I'm not really sure what you are asking of us when you say, "advise". Are you asking should you or shouldn't you take Cymbalta?
Is there something else you would like from us. You've given us the barest information about yourself, that you love horses and have diabetes, and want us to tell you what to do? Tall order, and a set-up for us here.

How can we advise you when we don't really know a thing about you? How can we know how much pain you have, or when, or what it does to your life? How can we know about what workup you've had for causes other than neuropathy? Your diet? Your stresses?

What I'm trying to tell you is that asking us for broad strokes of advice will get you our individual philosophies, or our individual philosophies on one particular day (I can tell you that my "philosophy" can vary depending upon how I'm feeling that day, week, moment.)

So, in the broadest sense:

You tell us you are depressed and it is very important to treat depression. Depression causes not only psychic pain but physical pain. Depression itself is a terrible stressor, to the body and brain, and pain improves when depression is treated.

The Cymbalta manufacturers have gone out of their way to get approved for depression with pain, or chronic pain. I have to say I know they did this AFTER another drug company was doing the same thing for another drug, and it was working, so they figured out how to get good sales with this pitch)

It IS an extremely good medicine for the two problems. People sometimes say the very next day after beginning it that their pain is better.

Whoever prescribed it to you DID have a sense of you, that you are down and hurting. So it's a good place to begin, whatever else you are doing.

If your neuropathy is from diabetes, you are very lucky. With good diabetic control, and with use of supplements (as in the stickies) and exercise, there is no reason at all for the neuropathy to not improve. That's not just the pain, that's the neuropathy itself.

Diabetic neuropathy happens because the high blood sugar damages both blood vessels and nerves. Blood vessels bring oxygen and food to nerves, and nerves, well, that's what we're talking about. Bringing your blood glucose down will take away the cause of the problem.

The supplemetns in the stickies help heal the nerves, so they are very important. Lipoic Acid, omega fatty acids (fish oil), acetyl l carnitine, the B vitamins--you'll find that people have put together a menu of them and make very good suggestions.

So, you are luckier than those here who need IVIG indefinitely, luckier than those of us with idiopathic pn, who don't know the cause and have the concern that one day it will make itself known in a not-so-happy way.

Things could be worse. This is a chronic disease, like your diabetes, and can be managed.

But if you are depressed, it's hard to hear all this, hard to read the stickies.

So, do what you must to get yourself in shape to read, take notes, and get moving. Let us know more about yourself.

This is a good group here. There are smart people, wise people, like-minded people and people with different ideas. But it is universally a supportive place to have landed, so make use of us, make use of hte work that's gone into the stickies, and ask what you must.

Good luck on your journey to better health.

that we all come here from various walks of life, with different lives, different degrees and kinds of neuropathies, and of course different opinions about it all.

There are over 200 types of neuropathies listed in the 'stickies' at the top of the main forum here. Anything in blue, well click on and you'll get a bounce to a new site for info. That's mostly the 'research', diagnosis, and treatment stuffs [like meds etc]. It's important stuff to know tho, as it will give you a background or framework about what all is happening to you and causing your pain. Some of it is medical 'talk/speak' and we have all learned the lingo, we can help with that and all about the different meds and our pro/con experiences.

It mite help you to just read some of the back posts as well - to get a handle on how we agree, disagree and share info about specific problems. This IS a community and all communities have lots of folks with different viewpoints. Depending on situations those views can be more or less appropriate for what you want to know.

Horselover please keep in mind each of us here HAS/DOES/IS very familiar with the PAIN you are talking about. LizaJane is very and ever so right about that. David is right that trying to change your attitude about it IS important to keep things from getting worse. Also, getting all the important aspects of your own issues is important so we can relate to your problems and point you in the directions you could to get this demon knocked-out ASAP!

Just don't do this, please - j

Horselover,
David is eloquent in his synopsis and has been ever so fortunate to be able to deal with PN thru exercise, diet, and other non-drug ways (he didn't mention Yoga, but if you read some of his back posts, you''ll see it mentioned).

j (Dahlek) has been fighting a very intense battle and has some insight that others here, are not even close to recognizing.(some do- all too well)

Liza Jane, has also fought a long and hard battle with her PN.....and has compiled (along with help from other PN sufferers) one of the most specific set of spreadsheets, designed for PN sufferers. No other disease was the impetus. Her diligence and past experiences led her to create the most useful tool for us that I can think of. The ability to be able to take information from various doctors & labs, and track testing and meds over time- is invaluable. Her spreadsheet on PN tests- has everything in one place, at your fingertips.

Another of out regular memberss, Glenntaj - has volumes of medical information relating to PN- in his head, and contributes here regularly.
His knowledge about PN, is encyclopedic.

This is a place where you can find the answers to many of your questions, or at least a link to somewhere that could be a start.

PN is a disease that the cause id found, not with a magic bullet x-ray or CT scan - but thru a process of elimination. A sometimes frustratingly long and multi-test process, if You're willing to dig deep enough and submit yourself to the necessary medications and tests to find out. Many of us will never find the cause, some others- may- and still others, have.

But there are some truisms that we definitely can say that we have in common, treatments that are the same- no matter what the cause, and suppliments, exercises, and foods that can help- and make us healthier, in spite of whether we've found the cause or not.
But there is one thing that will definitely make our PN symptoms worse....STRESS ! (and depression and stress go together).
It is important that we find a way (and each of us is different) to reduce and alleviate stress in our daily living.

I was so stressed out, and agravated, and annoyed, and angry, and hyper when I first found out I had PN. I had never heard of it- it seems that altho many diabetics develop it (I've read over 50% - many with extremely mild cases) - it seems to take a back seat to the diabetes, unless it is debilitating enough to be separated out, and treated independantly.
I was fortunate enough to have found support sites like this one. and BT1, and TNA, within the first 6 months of my Dx. They literally kept me from going out of my mind with anxiety and stress.

Since then (over 7 years ago) I've learned a lot of things, but I think the most important one is to accept the fact that I have a chronic condition that does not have a 'cure'. No pill will make it go away.
Denial of that fact is definitely a big creator of stress.

Acceptance doesn't mean give in- as David has eloquently detailed. We all are searching for a way to let us live as normal a life as possible.

We all are so different and varied that no one way works for all.
But we also have accepted the fact that PN will not rule our lives.
We will have control, not the PN.

Maybe that is the best advice I can give you.
But it certainly is not the last word. We all are still learning everyday. that's why we congregate here- to share and help. We are more than willing to help you and have you share with us.

Best of luck, in finding your way ..... to have.... a pain free day.