Struggling with Diabetic Neurapathy?

[GhostHawk]

A Whole-Foods, Plant-Based Shopping List

Fruits: Berries, citrus fruits, pears, peaches, pineapple, bananas, etc.
Vegetables: Kale, spinach, tomatoes, broccoli, cauliflower, carrots, asparagus, peppers, etc.
Starchy vegetables: Potatoes, sweet potatoes, butternut squash, etc.
Whole grains: Brown rice, rolled oats, farro, quinoa, brown rice pasta, barley, etc.
Healthy fats: Avocados, olive oil, unsweetened coconut, etc.
Legumes: Peas, chickpeas, lentils, peanuts, black beans, etc.
Seeds, nuts and nut butters: Almonds, cashews, macadamia nuts, pumpkin seeds, sunflower seeds, natural peanut butter, tahini, etc.
Unsweetened plant-based milks: Coconut milk, almond milk, cashew milk, etc.
Spices, herbs and seasonings: Basil, rosemary, turmeric, curry, black pepper, salt, etc.
Condiments: Salsa, mustard, nutritional yeast, soy sauce, vinegar, lemon juice, etc.
Plant-based protein: Tofu, tempeh, plant-based protein sources or powders with no added sugar or artificial ingredients.
Beverages: Coffee, tea, sparkling water, etc.

https://www.healthline.com/nutrition/plant-based-diet-guide#foods-to-eat


My wife has been struggling mightily with pain in her thigh's for the last year. Had her hobbling around like a 80 year old women.
We stumbled upon this page doing some research on Whole Food Plant based diets.
Started her on it for supper. 2 days later the pain is gone. She's standing straight again and walking.
But, stick to the list.

Day 3 she decided to try a bowl of shredded wheat for breakfast. 5 hours later the pain is back.

Today was day 5 and crackers, etc. And some 4 hours later the pain is back. My wife just cleared out her snack stash and dumped them in my lap.

Tomorrow although it is not on the list we will try a little piece of chicken breast cooked in the air fryer.

Read the web page, link is above. Its worth a shot if it helps even one other person.

Thanks for taking the time to read, God Bless you.

[BLAHUT]

There was a recherché article on netflix, on there being able to eliminate all most all diabetic drawbacks with just food, and exercise, sorry I don't remember the name of the program? They went with all natural foods, corn and grain (wheat) were two, I remember as being main culprit's to eliminate. I used their recommendation's and dropped my insulation needs from 150 units a day to 35 units a day and still working on getting rid of the rest ?

[dverna]

Praying for your wife.

[MaryB]

A LOT of the issues stem from modern wheat, specifically a protein called gliadin which is not in the same proportion as it formerly was. The breakdown of it helps digest gluten... change what our bodies are designed to eat and bad things happen!

[Kosh75287]

I don't wanna go all "Jack LaLaine" here, but it has been demonstrated, repeatedly, that exercise (as vigorous as is appropriate or can be tolerated) makes the body secrete Human Growth Hormone (HGH), which is PIVOTAL in the body's ability to effect its own repairs. Clonidine, a drug used for hypertension, sleep latency, and (oddly) A.D.D., seems to elicit the release of HGH, even when used chronically.
Taking clonidine WILL NOT REPLACE EXERCISE, however, so consult with physicians on both points. Clonidine AND exercise, a priori, would likely be the BEST approach.

[Thundarstick]

Look into what an animal based diet is doing for many in the same situation.

[labradigger1]

The “modern normal American “diet is killing us all. Cut the carbs and sugar, eat nothing out of a box or ready to eat and portion control.

[Thundarstick]

The “modern normal American “diet is killing us all. Cut the carbs and sugar, eat nothing out of a box or ready to eat and portion control.

They don't refer to it as the S.A.D. diet for nothing!

Look seriously at cutting out all seed oils!

[DCB]

Check out a Dr. Ken Berry on youtube. This has helped me tremendously. Good luck.

[Thundarstick]

Check out a Dr. Ken Berry on youtube. This has helped me tremendously. Good luck.

That makes two of us! And watch Nina Teicholz presentations on vegetable oil and the history of the food pyramid and the AHA! Good places to start!

[trapper9260]

I got Neurapathy ,but it is from when I broke my hip and then needed a hip replacement and the Doc told me it is like Diabetic Neurapathy. The VA got me on a med , otherwise they told me to stay active, that I do anyways . I know about the pain ,it is also in my right arm the Neurapathy from when I broke my elbow when I was in the navy. I learn to live with it the best I can do and just keep using it and do the best one can . Just hang in there .

[Cris T]

I have had Diabetes for about 10 yrs. It was diagnosed after I complained about what turned out to be neurapathy. I have been studying about ways to deal with diabetes. At one time with diet and supplements (but mostly prayer), I went from A1c of 9.8 to 5.7 in three months. It doesn't cure neurapathy but if you don't get blood glucose under control the very bad stuff will begin to happen.
The things that I did to get my A1c down so dramatically was 1: NEVER EAT any baked stuff with bleached flour. I first quit carbs. Then I just cut down on bad carbs. Then I came to realize that I could have whole wheat in moderation. But even now if I eat a piece of white bread, pain, discomfort...more pain...more discomfort.
There are other dietary things that help. I make sure I eat a lettuce salad EVERY day sometimes more. I usually put some shredded carrot and cucumber in there also, with ranch dressing.
2: Supplements. One of the best supplements to take is R-ALA (R-alpha lipoic acid). Make sure it is 100% "R" alpha lipoic acid.
Another thing that helps a lot is a GOOD probiotic. I had constipation for 10 years to the point of taking 2 different laxatives every day. When I started probiotic and salad every day, the constipation stopped on the first day and it hasn't come back since (about 2.5 yrs)

[jaysouth]

After a year of intermittent fasting and keeping a max carb intake of 50 grm per day, my AIC went from over 7 to 5.5. I also lost 30 pounds. I am continuing to go low carb and starting a rigorous daily exercise program (rigorous for 76 years old). The quack told me that if I test 5.5 in 6 months, he will take me off metformin.

[TjB101]

The “modern normal American “diet is killing us all. Cut the carbs and sugar, eat nothing out of a box or ready to eat and portion control.

This. I lost 50 by cutting / watching carbs and was able to go off all Dr. prescribed drugs. Much happier.

[GhostHawk]

FYI Cindy continues to follow the diet. And continues to lose weight. We are hoping that in about 6 months she can get off metformin.

The diabetic neuropathy is better, but can still be triggered by overworking. Too many trips in one day down to do laundry will have her hurting by late afternoon.

But overall it is much better.

She started this diet at around 211 lbs and is down to 191 as of this week.

One day this week she woke up starving, wanted bacon and eggs. So I said lets find out. Well by the time she had it cooked it no longer smelled good. She had a half slice of bacon and only ate half the eggs. And 2 hours later the pain started. Bacon and Eggs are OFF the menu.

This week she started adding some protein powder to her fruit smoothies and that seems to be helping with the hunger issues.

[Wag]

I was diagnosed Type II diabetic 15 years ago. Eliminating sugar, cutting back carbs to less than 80 per day AND working out in the weight room brought my BG levels back to normal. A1C below 5.0 in many cases. As long as I stay disciplined about it, I can maintain that quite well.

But it didn't do anything for the DPN pain in my feet. The only thing that helped with that was 300mg of Alpha Lipoic Acid every day. I took it for about six months and was good to go. Alpha Lipoic Acid is the only fat-soluble anti-oxidant out there and it helps the body repair the coating around the nerve fibers in your extremities. It's a bit pricey but I don't have to take it for a lifetime.

Diet is critical. Watch the glycemic index of foods along with carb content and definitely get high quality carbs, not so much of the easy carbs.

My heart is with you both. It's not an easy thing and it's a lifetime of self restraint.

--Wag--

[Ford SD]

???? is it the Bacon or

is it the eggs ? or what you cooked the eggs in

or what you had to drink with the bacon & eggs


it might be only some things that act as a trigger



FYI Cindy continues to follow the diet. And continues to lose weight. We are hoping that in about 6 months she can get off metformin.

The diabetic neuropathy is better, but can still be triggered by overworking. Too many trips in one day down to do laundry will have her hurting by late afternoon.

But overall it is much better.

She started this diet at around 211 lbs and is down to 191 as of this week.

One day this week she woke up starving, wanted bacon and eggs. So I said lets find out. Well by the time she had it cooked it no longer smelled good. She had a half slice of bacon and only ate half the eggs. And 2 hours later the pain started. Bacon and Eggs are OFF the menu.

This week she started adding some protein powder to her fruit smoothies and that seems to be helping with the hunger issues.

[GregLaROCHE]

I suggest you look into a Ketogenic diet. It has helped a lot of people with diabetes. There are plenty of recipes for interesting dishes. My wife and I have been doing keto for three years and our sugar levels are now in great shape.

[pmer]

FYI Cindy continues to follow the diet. And continues to lose weight. We are hoping that in about 6 months she can get off metformin.

The diabetic neuropathy is better, but can still be triggered by overworking. Too many trips in one day down to do laundry will have her hurting by late afternoon.

But overall it is much better.

She started this diet at around 211 lbs and is down to 191 as of this week.

One day this week she woke up starving, wanted bacon and eggs. So I said lets find out. Well by the time she had it cooked it no longer smelled good. She had a half slice of bacon and only ate half the eggs. And 2 hours later the pain started. Bacon and Eggs are OFF the menu.

This week she started adding some protein powder to her fruit smoothies and that seems to be helping with the hunger issues.

I'll play internet dietician for a moment... I wonder if she was short on grams of fat. A serving of pecans helps me when I get that way.

[GhostHawk]

We are looking at the Keto diet and adjusting a bit. Takes a bit of time to do trial and error. We like to have a day in between for things to return to normal.

Wife went shopping alone today, bought a bag of chocolate chips as she was craving it. Opened it the car. by the time she had driven the 4 blocks to home her knees and legs were screaming. I think it was a good lesson for her.

[chuck40219]

All Diabetic Neuropathy is not the same. I have dealt with this for over 23 years. Why 23 years, that's when I got my first pacemaker. Before that happened I was on some serious heart drugs. I was told my neuropathy was caused by those drugs and diet. Diet can from my research help some cases of neuropathy but not all. I have developed diabetes as I aged so we watch what we eat around here. My wife and I are on the keto diet at this time. My wife is short and round and I am tall and round. I am down to 270 or so right now and my A1C is hovering around 6.0. The keto diet is working for us at the moment.

Good luck finding the magic to help with this.

Chuck40219

[uscra112]

All the tiring "diet and exercise" internet advice notwithstanding, the best therapeutic for the pain of diabetic neuropathy is Gabapentin. Stopped mine immediately, 100%. Almost have forgotten that I ever had it.

[GregLaROCHE]

It takes time to adjust to a keto diet and in the beginning it may not be fun, but stick with it. It’s worth it.

[uscra112]

Be sure you're well stocked up with Miralax, is all I've got to say about keto diets.

[Thundarstick]

Be sure you're well stocked up with Miralax, is all I've got to say about keto diets.

Not nessary! You may have a few issues in the beginning, but your gut microbiome will adjust and it'll cease to be an issue. I'm straight carnivore, if it don't come from an animal, I don't eat it, and I'm as regular as the sunrise.
A big problem is many think they can go back and forth, keto vs SAD diet (standard American diet), that will only cause you more problems than it fixes. It's all our nothing in a lifestyle of eating.

[Rapier]

Eating anything that is used to make drinking alcohol, is backing up, period. As a diabetic you may not eat the converters. Processed meats, should not be on your diet. A hot dog is like eating poison.
Try Dove Intensive Care Cream at night, and walk, walk, walk. Do not sit for long periods of time. Get a ball type electric foot massager and use it every night.
Change your foot wear to deck shoes so your skin on your feet breathes. Get a medium defoliant brush for your feet and legs, use it every 3 days or so with the Dove Intensive Care Cream, after.

Been a diabetic on pills and exercise for 45 years, have had open heart surgery, will not be to long before I need to get a pen injector. But we all go as long as we can between stages.

About 20 years ago, I was offered a prescription for pain killers for neuropathy, which I declined. I decided to fight the up hill battle, it has not always been easy. You do as you wish.

[Wag]

Tell her to be very careful of the meds prescribed by the doctors for DPN. Some of them are neurological inhibitors and they will wreck the brain in short order. One in particular is Cymbalta. That garbage is dangerous, in my never-to-be-humble opinion. Google up "Cymbalta Nightmare" and you'll read about some horror stories.

Cymbalta is not the only one.

--Wag--

[GhostHawk]

Gabapentin worked but she was seeing and hearing all kinds of things that were not there.

Lyrica is her main one along with some codine 4's for pain.

[Rapier]

Along with other stuff, Wife just told me they have now connected Junivia and Jardiance with cancer. Maker says by the end of the year they will have all that fixed......ah,should we just hold our breath until....

[huntinlever]

That makes two of us! And watch Nina Teicholz presentations on vegetable oil and the history of the food pyramid and the AHA! Good places to start!

Good book here is The Big Fat Surprise, by Nina Teicholz. I sure learned how the whole 70's paradigm and "food pyramid" was based on crap science, if not downright fraud. From Amazon:


"This book should be read by every nutritional science professional...All scientists should read it as an example of how limited science can become federal policy....well-research and clearly written....Teicholz compiled a historical treatise on how scientific belief (vs. evidence), nongovernment organizations, food manufacturers, government agencies, and moneyed interests promised more than they could deliver and, in the process, quite possibly contributed to the current world-wide obesity epidemic." ― The American Journal of Clinical Nutrition


I used to make French alpine cheeses and worked with two brothers pasturing Ayrshire cows on their smallhold farm. Great friends now, coming to know them, the way they live and the way they raise their cows (managed, intensive-rotational grazing) pretty much blows a hole in everything I knew growing up as a nationally-classed athlete steeped in "swimming science" to include accepted wisdom on nutrition.

[huntinlever]

Gabapentin worked but she was seeing and hearing all kinds of things that were not there.

Lyrica is her main one along with some codine 4's for pain.

I'm really sorry Ghosthawk. I have central nervous system damage (don't live in a martial arts and zen temple and get the crap beat out of you in your 30's. Chronic brainstem abuse does a number years later), but also substantial peripheral neuropathy. I've been on Lyrica since 2008. I rejected Gabapentin early, hated it for its making me stupid. There's a reason Neurontin (Gaba) is called "morontin." Lyrica never gave me that.

I became hooked on Norco without even realizing it - thought "if a doctor advises and prescribes, I trust..." I went cold turkey when Dr. Feelgood moved me to morphine, letting my family know this wasn't going to be pretty. It wasn't, but I broke it. I've become an educated patient ever since.

I want to just throw it out: Years ago I was put on a trial of lidocaine infusion. It was like a miracle and I was down to virtually pain-free in less than 15 minutes. The problem for me was that everything came roaring back within a few hours, so I am not a good candidate - many people get months of serious relief. Instead, my doctor suggested I try Mexiletene, basically something like an oral lidocaine for chronic neuropathic pain patients. It does have risks so should be carefully considered with one's physician. It has worked over the long haul to take just enough of the edge off I'm not losing it. I have Tramadol for bad breakout pain but do everything I can to never use it. I almost never do.

I will say - it hurts like hell for me to even move, it induces a central pain flareup. Whole body burns moderately severe constantly, but it causes a big uptick in severity. But moving is absolutely necessary. Some have touched on it here. I try to workout 5 days a week between cardio and strength and deal with the pain. I basically train for elk or mountain hunting. Whether I ever will, the definite goal keeps me honest and at the training.

Mindfulness can help. Our species seems to be the only one that layers on "suffering" on top of pain. We have the brains. It's not hypnosis or anything at all like that - it's "radical acceptance" of serious pain, and letting go of clutching in every way possible, to what that pain wants to consume in our daily lives and our constant thoughts.

Sleep is paramount. I'm an insomniac and used to get only 2-3 hours a night because of pain. I've been good for about 5 hours for 10 years or so now. Not ideal, but livable. Bad sleep exacerbates neuropathic pain, and neuropathic pain exacerbates insomnia. I take meds, much as I hate them all, but also natural stuff - melatonin, but also "Sleepytime" herbal tea, which comes either without valerian (the regular) or with valerian (the "Extra"). Valerian can definitely leave you groggy, but it's sometimes better than being a zombie after little sleep.

That's a lot, I know. My heart truly goes out to you and your wife. Thank god I have a good family, and that includes a good labrador. I know of so many who have nothing but their pain and it's hell. My best hopes your wife can find some ease.

[GhostHawk]

Good days and bad ones. The good news is she continues to lose weight on her diet. Her doctor had her cut her Metformin dose in half after seeing her and seeing her glucose numbers. This is all good long term news. Just going to take some time to get there.

Cindy is accepting that if it is not on her diet list she can not eat it without suffering the consequences.

She is on a variety of suppliments. And one day she wondered, just how much do they help? So she did not take them that day. By noon she was in bed, only leaving to go to the bathroom. By the next morning she could hardly move.

Alpha lipoic acid is one of them I know that helps.

She just got a 2 year supply of daily vit gummy's to help fill in what she is no longer eating. Esp B complex I think.

Today's big treat was a peeled sweet potato cut into 8 wedges, lightly oiled, cooked in the air fryer with just a sprinkle of brown sugar.

She has been off the diet pop for almost a year now and I am convinced that is a big part of the weight loss.

She mostly drinks iced Tea, Oolong, mint, ginseng and has been drinking about a gallon a day.
Sweeted moderately with Purecane, which is fermented cane sugar which results in a molecule much like stevia, but IMO healthier with better taste. But she is tapering off all artificial sweeteners. Moderate amounts of real sugar is IMO healthier long term.

Her biggest problem seems to lie in a muscle that starts in the back and runs down into the thigh's. She has been doing some stretching exercises that help some.
Also various massager, vibrators, punch massager give some relief.

I think the hardest part is not seeing a way out of the hole she is in.

A lot of this is the end result of septicemia after back surgery. She was 2 weeks in hospital, and another 6 weeks in rehab getting daily IV antibiotics.

That 2 months robbed her of about 20 years of life.

What is, is. Do the best you can with what you have and treasure every day, every joy.

She got to sing " Happy Birthday to you, you belong in a zoo, with the Lions and Tigers and Monkeys like You! To her 10 year old grandson. He totally LOST it, he's laughing so hard. Good day.

Thanks all, hope some of this helps someone else.

God Bless you all!

Love

Bill and Cindy in Fargo ND

[huntinlever]

My lord, Bill, that's an ocean's worth of struggle. I'm so sorry to hear of the septicemia. That's terrible. My heart goes out to you both and wishing you strength.

The back muscle - piriformis? If so, that's nasty. I'm bizarrely flexible (can bend over and almost touch my elbows to the floor; open but arthritic/degenerated hips but paradoxically stretching is not great for me - piriformis flareup being one. I hope the gentle massage, easy stretching and movement as she can helps her get better. May sound hokey, but I've actually gotten good results over the years with both trigger point and acupuncture.

Good luck.

[MaryB]

I'm really sorry Ghosthawk. I have central nervous system damage (don't live in a martial arts and zen temple and get the crap beat out of you in your 30's. Chronic brainstem abuse does a number years later), but also substantial peripheral neuropathy. I've been on Lyrica since 2008. I rejected Gabapentin early, hated it for its making me stupid. There's a reason Neurontin (Gaba) is called "morontin." Lyrica never gave me that.

I became hooked on Norco without even realizing it - thought "if a doctor advises and prescribes, I trust..." I went cold turkey when Dr. Feelgood moved me to morphine, letting my family know this wasn't going to be pretty. It wasn't, but I broke it. I've become an educated patient ever since.

I want to just throw it out: Years ago I was put on a trial of lidocaine infusion. It was like a miracle and I was down to virtually pain-free in less than 15 minutes. The problem for me was that everything came roaring back within a few hours, so I am not a good candidate - many people get months of serious relief. Instead, my doctor suggested I try Mexiletene, basically something like an oral lidocaine for chronic neuropathic pain patients. It does have risks so should be carefully considered with one's physician. It has worked over the long haul to take just enough of the edge off I'm not losing it. I have Tramadol for bad breakout pain but do everything I can to never use it. I almost never do.

I will say - it hurts like hell for me to even move, it induces a central pain flareup. Whole body burns moderately severe constantly, but it causes a big uptick in severity. But moving is absolutely necessary. Some have touched on it here. I try to workout 5 days a week between cardio and strength and deal with the pain. I basically train for elk or mountain hunting. Whether I ever will, the definite goal keeps me honest and at the training.

Mindfulness can help. Our species seems to be the only one that layers on "suffering" on top of pain. We have the brains. It's not hypnosis or anything at all like that - it's "radical acceptance" of serious pain, and letting go of clutching in every way possible, to what that pain wants to consume in our daily lives and our constant thoughts.

Sleep is paramount. I'm an insomniac and used to get only 2-3 hours a night because of pain. I've been good for about 5 hours for 10 years or so now. Not ideal, but livable. Bad sleep exacerbates neuropathic pain, and neuropathic pain exacerbates insomnia. I take meds, much as I hate them all, but also natural stuff - melatonin, but also "Sleepytime" herbal tea, which comes either without valerian (the regular) or with valerian (the "Extra"). Valerian can definitely leave you groggy, but it's sometimes better than being a zombie after little sleep.

That's a lot, I know. My heart truly goes out to you and your wife. Thank god I have a good family, and that includes a good labrador. I know of so many who have nothing but their pain and it's hell. My best hopes your wife can find some ease.

I know the pain induced lack of sleep all to well... like you I average 4-5 hours a nite, and a 2-3 hour nap in the afternoon. My spine is slowly self fusing along with narrowing all over it, lumbar decompression surgery, plate in my neck... and fibromyalgia to make it more fun! Add in torn up knees and a bad hip, bad shoulders, bad wrists... pain free is a long gong dream. I haven't been pain free in years.

I just deal with a lot of it, use percocet and oxycontin to dull it down to a dull roar for the day and right before bed to hopefully sleep a little at night.

Friend in TX who is in about the same shape as me struggles with the pain and lets it get to her... half the battle with pain IS mental!

[MaryB]

My lord, Bill, that's an ocean's worth of struggle. I'm so sorry to hear of the septicemia. That's terrible. My heart goes out to you both and wishing you strength.

The back muscle - piriformis? If so, that's nasty. I'm bizarrely flexible (can bend over and almost touch my elbows to the floor; open but arthritic/degenerated hips but paradoxically stretching is not great for me - piriformis flareup being one. I hope the gentle massage, easy stretching and movement as she can helps her get better. May sound hokey, but I've actually gotten good results over the years with both trigger point and acupuncture.

Good luck.

I have said it before and I will say it again. WALKING is hands down the best back exercise on the planet. It exercises all the muscles groups f the low back. Second is keep core muscles strong and the exercise for it is simple. Lay flat on the floor, bring your feet in until you can't keep your feet flat on the floor then back out just a tiny bit to make sure they stay flat. Lift you butt up off the floor until your back and upper legs form a straight line, hold for a 10 count, relax back to the floor, repeat. I do 60 reps of this a day to help hold my spine in alignment!

I walk as much as I can, winter makes it difficult due to ice and fall hazards(I am over 60, I don't bounce like I used to, bones break instead LOL). I do walk around the house, and do 10 sets of stair climbing my steep stairs(almost like a ladder...) in winter

[gc45]

Maybe Gabapentin will one day kill my brain but sure does help my pain from Neuropathy. I sleep all night too and get by for most of the day until about 4pm before needing pills. When cold out, I wear foot warmers that really help the discomfort of neuropathy, on hot summer days I keep away from direct sunlight much as possible. I use diabetic socks under Sketcher slip on shoes and both really help me lots. Not being diabetic like most, I have what is called idiopathic neuropathy, meaning the doctors do not know why I have it..

[huntinlever]

Maybe Gabapentin will one day kill my brain but sure does help my pain from Neuropathy. I sleep all night too and get by for most of the day until about 4pm before needing pills. When cold out, I wear foot warmers that really help the discomfort of neuropathy, on hot summer days I keep away from direct sunlight much as possible. I use diabetic socks under Sketcher slip on shoes and both really help me lots. Not being diabetic like most, I have what is called idiopathic neuropathy, meaning the doctors do not know why I have it..

In my experience for most people that "mental fog" happens within the first few months of use, which is about the time IIRC it takes for Gabapentin (or Lyrica, or many others) to saturate your system and take hold. Many people never get it, and many people "grow out of it." Works for tons of people, glad it works for you. I, too, have "idiopathic peripheral neuropathy." No diabetes. The problem is threefold, for me: arthritic spine, which wasn't all that bad when this central pain (it's not related) started coming on; this idiopathic peripheral neuropathy; and then this brainstem damage, causing central pain.

Because I wasn't badly arthritic in my spine at the time, many doctors just plain didn't believe me. A neuro finally ordered tests, and they did find "distal latency," i.e., nerve damage towards my hands and feet, slow rate of firing, so the localized burning, "bee sting" or "needle" shots out of nowhere, etc., were explained. But it still didn't explain the fact my entire body burns at a high level constantly, and I'm so subject to massive flareups. So again, most doctors thought I was psychosomatic or something similar. Took me a long, long time to establish a team, and a doctor, who finally found I'd screwed up my brainstem and so my brain's signals to the rest of this old carcass are basically fried, and firing maniacally. Nothing can be done about it, so management is the goal.

I'm deeply grateful to my team of caregivers. Good people. I'm also an extremely educated patient and a tough SOB with doctors who don't tend to think outside the narrow purview of their practice. I urge anyone in a similar, desperate situation to read up, and be prepared to challenge even MD's - who aren't gods, but many times good people and skilled physicians who like most of us, become ingrained to the certain worldview of how we spend our working days.

Good luck.

[huntinlever]

I know the pain induced lack of sleep all to well... like you I average 4-5 hours a nite, and a 2-3 hour nap in the afternoon. My spine is slowly self fusing along with narrowing all over it, lumbar decompression surgery, plate in my neck... and fibromyalgia to make it more fun! Add in torn up knees and a bad hip, bad shoulders, bad wrists... pain free is a long gong dream. I haven't been pain free in years.

I just deal with a lot of it, use percocet and oxycontin to dull it down to a dull roar for the day and right before bed to hopefully sleep a little at night.

Friend in TX who is in about the same shape as me struggles with the pain and lets it get to her... half the battle with pain IS mental!

You're not alone. Can't speak for you of course but it was a big gift when I realized I'm not the only one, and in fact, I'm not crazy. My compassion goes out to you Mary. Good luck.

[Wag]

Those of you who suffer with daily pain have my deepest sympathies but also my highest admiration for hanging in there through it all. My late wife suffered with daily pain for over 30 years and it was hard enough to watch. I can't really imagine how much she had to deal with it. Part of my lack of understanding came from her attitude of positivity and her upbeat outlook. She loved her life, no matter what. She always had a smile on her face except in rare occasions when it was just excruciating. Most people never realized how much she hurt all the time because of her determination to just live life to the fullest extent possible. I always knew, though. She avoided the pain meds as much as possible because she didn't want to get dependent on them.

She had it rough but her mentality was that she didn't care if she hurt.

I've read a lot of other stories of people who just made that decision to work through the pain. I see some of you here and again, you have my admiration.

Toward the end of her life, when the cancer was just eating her up, she was in such deep pain she finally had to give in and take the pain meds more and more. The meds did their own share of damage to her mind and robbed her of who and what she was. But she had no other option.

Keep on keepin' on. I always hope for the best for sufferers.

--Wag--

[huntinlever]

Those of you who suffer with daily pain have my deepest sympathies but also my highest admiration for hanging in there through it all. My late wife suffered with daily pain for over 30 years and it was hard enough to watch. I can't really imagine how much she had to deal with it. Part of my lack of understanding came from her attitude of positivity and her upbeat outlook. She loved her life, no matter what. She always had a smile on her face except in rare occasions when it was just excruciating. Most people never realized how much she hurt all the time because of her determination to just live life to the fullest extent possible. I always knew, though. She avoided the pain meds as much as possible because she didn't want to get dependent on them.

She had it rough but her mentality was that she didn't care if she hurt.

I've read a lot of other stories of people who just made that decision to work through the pain. I see some of you here and again, you have my admiration.

Toward the end of her life, when the cancer was just eating her up, she was in such deep pain she finally had to give in and take the pain meds more and more. The meds did their own share of damage to her mind and robbed her of who and what she was. But she had no other option.

Keep on keepin' on. I always hope for the best for sufferers.

--Wag--

I'm deeply sorry for the loss of your wife, Wag. And I'm sorry she suffered so. She sounds like a beautiful lady and a warrior.

[Wag]

I'm deeply sorry for the loss of your wife, Wag. And I'm sorry she suffered so. She sounds like a beautiful lady and a warrior.

Paul, thank you for saying so. She truly was beyond heroic.

--Wag--