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!

Hi Horselover:

My name is Melody and I joined these forums awhile back because my husband Alan had Idiopathic Polyneuropathy for 18 years.

While we still have questions, we are learning more and more about his condition all the time. He is now undergoing home infusions of IVIG. I never heard about these things before I came to this forum. You learn lots of stuff here. I am also a diabetic and I, myself have neuropathy, but nothing to the degree that many of the people on these boards have (and that includes my husband).

We all have stories to share and sometimes we make each other laugh.

We do though need a bit more information about you and your background (healthwise), For example, what kind of tests have you taken, any meds besides the cymbalta.

So if you want to share, please reply and somebody will jump right on board.

Take care,
Melody

It took a lot of time and thought to compose the reply to you on the first page. Did you see it? Is there anything that you'd like to discuss?

Horselover, please reply so we know you are OK. We're worried about you.

David,
Copy & save the first long one.
It can help others over, and over.
Eloquent..... simply says it ........purty good!

Bob:

I thing Mr. Fignewton might have gotten scared, disgusted and just plain gave up. I do hope that is not the case.

There's lots of information on these boards, as well as friendly folk.

But unfortunately, when depression hits, as is often the case with many neuropathies, some people just plain give up. They think there's no way to get better.

Well, I'm here to say that if my Alan could get off a 125 of the fentanyl patch and vicodin, then ALL THINGS ARE POSSIBLE. (as they say in the bible), and I'm not even religious. lol

Melody