Neuropathy pain [Archive] - CareCure Forums

mike bauer

10-21-2005, 09:35 PM

accupuncture can help. , ultram i find works well on nerve pain with less wacked effect , 10 or 20 mg a day of amitriptyline in evening work for some.

I am going to try spinal stimulator. Not much other options... tried nearly every combination of meds, from Neurontin to Pot to Morphine and all in between. This hard Core Neuropathic pain is a real puzzle. I have met with PHD's who have studied only SCI PAIN even at the Miami Project. Simply put.... nothing really addresses the super hard pins and needles from hell. The Morphine seems to take the edge off. Lets hope someday, some high level position has a birds eye view of this unrelenting condition... maybe then they will work with the drug companies to study just the pain element. This , by the way, is whats needed. Lots of bucks thrown at Cure? Which is a hole other box of confusion. CURE??? You mean walking? Bowels, Bladder, PAIN, al working and back to new!!!! You mean that kind of cure??? I think that is a very tall order. VERY TALL! Not at this funding rate! So, in the meantime, why not fix some of the stuff that we all struggle with the most. PAIN/ Bowels, Skin, Bladder... toss some money that way! That's what we need now, while the search for different levels of CURE are studied as well? Just my thoughts. I wish sometimes I didn't meet with the scientists... I would probably still be waiting on the: ... any day now.... BS that is blowing in the wind. Until then, I stay as upbeat as possible, and think ABOUT SOMEONE HELPING WITH MY pain... That's my one WISH! Mike (Florida)

metronycguy

10-21-2005, 10:52 PM

mike , usually the pain management doc that implant the scs have a good feeling that it will help with the type of pain you have. talking to the guy that works for ANS and programs mine, they seem to have better luck with people that have pain in a wider area, than someone like me who's pain is in a very specific area.
ANS has a eight electrode lead that is supposed to give a much wider range of coverage .

at least i get some rhyme/reason for my pain, bladder full foot feels very uncomfortable , like pressure.. if i lie down= shocks in toe pain
sit for 2 long=shocks in big toe .
i am a walker so its easily for me to change position,
however once the pain starts, it doesnt go away with position changes. i have a lot of spinal stenosis and will have to be fused .

stlyin moe

10-22-2005, 12:36 AM

Where is your pain? The reason I ask is because I had severe pain from the point of my injury (T4) to my waist. I struggled for 3 years with pain that felt like a combination of broken glass being pushed through my intestines and being beaten with a baseball bat. Sometimes it was the broken glass feeling, sometimes it was the baseball bat, sometimes it was both.

Accidentally I heard about digestive enzymes and to make a long story short I tried them, a brand that had all the necessary enzymes in one capsule. My pain was gone, completely gone the next day. This, after 3 years and mega doses of Neuronten which only took the pain from a 10 to a 7 on a 10 scale. I contacted the Miami Project and got in touch with their pain specialists. They were completely closed minded to my approach and results. They sent me an email loaded with medical terminology explaining how complex SCI pain is which I guess was supposed to tell me my approach isn't supposed to work.

I've turned two others onto this discovery that also suffered from abdominal SCI pain and they've both had the same results as me.

This isn't the magic bullet for all types of SCI pain, but sure looks like it could be the case for abdominal SCI pain.

These enzyme capsules have also helped my bowel routine. It's helped to speed the time from entrance to exit by a day (from 3 days to 2).

Hope this can provide you with some relief...

metronycguy

10-22-2005, 12:49 AM

what were the digestive enzemes?

cameron887

10-22-2005, 01:13 AM

I'm with you, Stylin' Moe. I use enteric coated Cotazym ECS8 digestive enzymes. They have helped reduce my gut pain. I am lucky they are covered by my insurance, as they are quite expensive. My doctor explained that the enteric coated enzymes are the most beneficial, they bypass the stomach.

Worth a try, can't hurt, might help.

stlyin moe

10-22-2005, 08:57 PM

metro, the brand I use are called Prepzymes. My cost is about $22.00 a bottle of 100. They help to breakdown the food while it's in the small intestine which is where it's most needed. Your stools are much smaller because your body is able to absorb much more of the nutrient content which is important for us with SCI also. I only eat once a day as my activity level is much lower now that I'm in a chair. If I eat more than that I gain weight. The net effect is I don't get the nutrients I used to get in the quantity I should have. Beyond all that the pain issue by itself is my primary reason to use the stuff.

Cameron, can you be more specific about how the enzymes helped your pain levels decrease? How did your doctor decide to put you on them?...He's a sharp hombre...

metronycguy

10-22-2005, 09:22 PM

i will give them a try, is there any place that has cheap shipping?

stlyin moe

10-22-2005, 09:59 PM

metro,
here's the link to the place I buy my Prepzymes from...http://www.aim4health.com/

Scroll down near the bottom of the page on the right hand side and you'll see the ordering instructions and price list link. I just checked and the price is $28.00 for the bottle of 100 plus $5.00 shipping.

Hope this helps...

metronycguy

10-24-2005, 12:10 AM

i just ordered some thanks, i found another type in health food store today,
but those you only took once a day. anything to help with digestion and bowels.

SunnyCJ

10-25-2005, 02:40 AM

You have me really curious if these enzymes would help my severe chronic pain in my abdomen and back. I am desperate!

I have been suffering with this pain... a severe cold burning sensation with pressure & needles... since three months after my injury 12 years ago. My pain started in my bellybutton area and over the 12 years has spread throughout my whole abdominal area and around to my back. I have tried all the medications given for nerve pain and nothing has touched the pain. I also have hot burning pain in my butt and legs and the nerve pain meds did help that pain some (although they eventually stopped helping that area also), but nothing has made any difference on the abdominal pain. I've got to the point where I cannot cope anymore and am so depressed I would check out of this world if I could in a second.

My question for those of you who take these enzymes, did you have the burning type pain I described and did the enzymes relieve that? Also, how many times a day do you take them?

Thanks for the great info & I pray that they help!
CJ

stlyin moe

10-25-2005, 09:59 AM

CJ, I absolutely understand the point you are at. To answer your question, yes I had the severe burning pain it completely disappeared once I began using the enzymes. I take one capsule (it's the size of a Tylenol) with every meal. It's made a dramatic difference in my quality of life and I sincerely hope you'll give it a try and have the same results. It's important to keep in mind that you want to buy an enzyme product that has ALL the enzymes needed to digest ALL the various foods. This will make sure you're getting the full benefit of the enzymes helping your system.

I highly recommend you give this a try. When you do please get back to us as to how it works out for you...

SunnyCJ

10-25-2005, 11:53 PM

Stlyin moe,
I am definitely going to try these enzymes. I went ahead and ordered the ones you take and recommended, the Pepzymes. I am even more encouraged and hopeful now that you said you suffered from the burning pain as well and it got rid of it. I will definitely let you know how it goes.

Another question I have for you is, do you take fiber or stool softeners with the enzymes? I'm wondering if I need to stay on my same bowel regiment I'm on now of fiber and stool softeners to keep the bowels moving.

Thanks again,
CJ

stlyin moe

10-26-2005, 11:20 AM

CJ, I would recommend staying with your bowel routine. I've found that essentially what happened to me was the enzymes dramatically aid my digestion in the stomach and small intestine. From there the stools are much smaller in diameter and easier for your/my body to move along (less mass and weight) which makes that process for the body easier also. It's my hypothesis that some of us with severe abdominal SCI pain, have it because our digestive system is not working properly (one indication is that our BM's are usually days apart as opposed to daily prior to SCI) in both it's digestive capability and passing of waste through the intestines. The body reacts to this by sending a pain signal to alert us there's something wrong which is a normal reaction, but it gets confused as neuropathic pain and treated as such without success.

Prior to taking the enzymes I was taking 4 (100 mg) Colace capsules. I now take 1 (100 mg) and probably don't need that, but I don't want to risk fouling things up at this point. If it works don't fix it. I do not take any fiber supplements. I try to eat fruit and veggies to get it naturally.

I should also note that it was particularly difficult for my body to break down bread, rice and pasta and whenever I ate these foods I would be in agonizing pain till I passed them. Now I can eat them (since taking the enzymes) without any negative effects other than weight gain if I over do it.

I sincerely hope this works for you. It should begin working right away. At the very latest I'd think you should see greatly reduced or eliminated pain by your next BM after beginning taking the enzymes...

bob clark

10-26-2005, 12:00 PM

I just ordered them. It seems too easy and too good to be true and with my luck it probably will be. But if they work stlyin moe I'll be in your debt BIG TIME!

Thanks for the advice no matter what happens. Hey, I'll try anything at this point.

I find it amazing that they worked so fast for you. You sure got lucky! :)

stlyin moe

10-26-2005, 12:07 PM

Bob, others I've talked to that tried them said it helped them right away also. I sincerely hope it does for you as well.

I know it sounds too simple, but all I can say is it works amazingly well.

Leif

10-26-2005, 12:37 PM

Bob, others I've talked to that tried them said it helped them right away also. I sincerely hope it does for you as well.

I know it sounds too simple, but all I can say is it works amazingly well.
If my pain basically is due to bowel problems and other pain due to that I believe enzymes like this can work. If it is pure Neuropatic pain I have I doubt it will work. I guess I have a combination of those pains and thereby if I can reduce the pain from the bowel system that is a reduction in the pain regardless. Thanks for the tip and the link.

stlyin moe

10-26-2005, 12:42 PM

It's worth a try and little to lose if it doesn't work...

Jadis

10-27-2005, 02:09 PM

I replied in another thread and thought I should add this here.

I have chronic ulcerative colitis and have started taking these:
http://store.yahoo.com/iherb/allzyme1.html

1 month's supply for $7.12, and it's all plant enzymes.

I order B12 and others from iherb.com and have good success with them. This enzyme therapy has worked so well that I am off my Asacol ($220/mo no insurance). For the first time in 18 months, I can eat real food. I've been on the BRATS diet since I got sick because trying to add "real" food doubles me over in pain and causes a flare up.

razzle51

10-29-2005, 02:15 PM

well dr started me on Requip . She said more drs are trying this on NP. well let you know what happens . I have chiari and syringomyelia.

10-29-2005, 03:21 PM

I have been weaned off Neurontin due to 70 lb weight gain . then put on Topamax only to have a reaction . Now what , any suggestions for something else for nerve pain. And not Cymbalta . all ideas are welcome . I have chiari and syringomyelia . Thanks

Hi razzle,

Just a question. Why do you say not Cymbalta? My relative's neurologist just put him on this for mood/depression. He does not have neuro pain. Did you try it, and it just didn't help you or did you have adverse reaction(s)? He was really sick at his stomach the first week. She warned him ahead of time that it would happen. It passed though. Just wondering from your experience (if you tried it) with it, if there is anything else we should be watching for while he's trying this. Or if you did not try it, what are the reasons you didn't want to? Thanks for your help! I hope you will do well with the new drug you have been prescribed.

razzle51

10-29-2005, 04:48 PM

I had a terrible reaction to Cymbalta . It was into about the 4-5week . heart racing , shakes , vomiting, felt like if I laid down I wouldnt wake up. Be careful on the drug. Roz

10-29-2005, 10:37 PM

I had a terrible reaction to Cymbalta . It was into about the 4-5week . heart racing , shakes , vomiting, felt like if I laid down I wouldnt wake up. Be careful on the drug. Roz

Thanks Roz! Sorry you had such a bad reaction! I know that was scary in addition to terribly uncomfortable!:( I'll let him know what you experienced so if it happens to him, he'll know what's likely causing it and can call the doc ASAP! Thanks again!

razzle51

10-30-2005, 12:47 PM

Your welcome , now I think the Requuip is not for me. This am woke up hurting really bad and another night of no sleep , that makes 3 nights no sleep . I think I will call the dr, in the am.

razzle51

11-02-2005, 08:42 AM

Well I am back on the Topamax with a little Ameritriptiline on the side. I did find out the Topamax wasnt causing a reaction something else . So I am back on it with a doseage hick.

ceron2

11-09-2005, 10:52 AM

Have you tried Lyrica? new drug and it worked better than neurontin for me, went from 2400mg of neurontin to 300mg of Lyrica. also cut down on my ultracet from 8 to 4-6 per day. :)

Semper Fi

11-09-2005, 01:23 PM

For $27 I sure going to give it a shot.
Thanks

razzle51

11-11-2005, 03:38 PM

Just got some Lyrica today . But was told it is a weight gainer. Dr. started me out at 50mg 3x day. isnt that a little high . So what do you think about it. Roz

Mine was $39.00 no formulary drug from Medco that was just a weeks supply , dr should have made it a month. Grrrrrrrr

LBUSH49

11-11-2005, 06:14 PM

go for it Mike it helped my lower back pain but my injury was back in 1985 and I tried everything another thing that really helps was massage thorapy ,but after the stimulator they can,t do that , and was this a work injury , if so my company paid for it the cost for the stim. is about $30,000 they paid it all ,and have to pay for anything to do with my back.

painlessjoe

11-13-2005, 10:24 PM

Hi Razzle51,

I see that you are taking many type medicine for nerve pains. Doctors have a tendency to prescribe many drugs and they do not think that it will have some side effects on a person but they do anyway as every time you visit them, they get money for it. Do not forget that doctors are not gods as they do make mistakes. You will almost never find a doctor tell you to visit a Chiro, a Massage Therapist, an Osteopath, etc. or any other specialist out there which could help you or anyone else as they are not getting the money for it. You know, there are other forms of professionals out there which could help you. For an example, there are Osteopaths which could help you very much, Chiros could do you some good up to a certain point, Special Massage Therapist like myself do a lot for people who are desperate.

If you wish to get some help, please, visit my Web Site at: " http://ca.geocities.com/painlessjoe/ (http://ca.geocities.com/paainlessjoe/) " and it is for FREE. If you wish to contact me, Email me at: " husky_698@hotmail.com ".

Good Luck

Joe
Special Massage Therapist

razzle51

11-15-2005, 06:54 PM

Chiropactors are a big no no with my disorder. And massage therapy has to very gentle . I have chiari and syringomyelia . I am doing fine . THANKS

dave1234

11-25-2005, 01:29 PM

i also have nerve pain down my arm 24/7 nothing take the pain away completly tramadole gabapenting df118 amatriptlene some three times aday smoking weed is my only releif.
Dave

metronycguy

11-25-2005, 01:32 PM

dave what is df118?

dave1234

11-25-2005, 01:36 PM

Hi metron,full name dihychcodeine

metronycguy

11-26-2005, 04:19 PM

it doesnt goggle?

LaoziSailor

11-26-2005, 04:33 PM

it doesnt goggle?...maybe try google.ca

http://www.google.ca/search?hs=qhQ&hl=en&client=firefox-a&rls=org.mozilla%3Aen-US%3Aofficial&q=df118&btnG=Search&meta=

DF118 Forte
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Dihydrocodeine ( DF118 )
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DF118 Forte. How does it work? Dihydrocodeine tartrate belongs to a group of
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DF118 Forte (Contd). Side effects Medicines and their possible side effects can
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A weak painkiller. ... Single dose dihydrocodeine for acute postoperative
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[ More results from opioids.com ]

REFERENCE laboratory Web Site
DF118P, The DF118-P is a powered unit that can deliver all the low frequency
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LaoziSailor

11-26-2005, 04:39 PM

Dave,
i also have nerve pain down my arm 24/7 nothing take the pain away completly tramadole gabapenting df118 amatriptlene some three times aday smoking weed is my only releif.
Dave
You may want to take a look at the Cannibis drug now available in UK thread.

xmarine

12-01-2005, 03:26 PM

What a great tip guys, I am going to try those enzymes right away, i always have gut/abdominal pain and my bowels are super slow. So I am gong to try use those and see what happens thanks for the tip!

stlyin moe

12-01-2005, 11:04 PM

xmarine, keep us posted on how they work out for ya. I hope they work, good luck my friend...

dejerine

12-02-2005, 04:08 AM

Hi guys/ladies/creatures(me)

dihydrocodeine is currently being studied to come out with a timed release formula which is likely to be promoted as some big new deal like Oyxcontin. Still just an opiate whether they are timed released or not. Looks like Singapore just put to death someone for having 14 grams of heroin. Somehow this just doesnt' measure up to rape, murder, etc for me, especially when the TV ads have to have this big complicated list of how you can tell if your teenager is on drugs, (doesn't like school etc) which shows you alchohol is a much more dangerous drug than heroine in some ways since you have no trouble spotting it if your kid is smashed.. Dihydrocodeine is said to be a prodrug, and not effective until metabolized by the cytochrome p450 system. Hence, any OTHER drug you take which goes through the cytochromie p450 system will require higher doses of the dihydrocodeine. The PDR will tell you if the other meds go through the cytochrome p450 system. You can buy a copy of the pDR at thrift stores since all the nurses and doctors throw theirs away every year. I paid one dollar for mine. I can't lift it but it was a good deal. the editor at painonline emailed me Smilek who studies synesthesia is writing to painonline. Since central pain burning dysesthesia has pain synesthesia, you might want to look at the article on Flower Power at painonline.com

alan

12-22-2005, 09:10 PM

Jadis

12-22-2005, 09:43 PM

I forgot about this thread. Alan, keep us posted on how those work for you. I ran out of those and started taking the Vegetarian Pancreatin that they carry. I felt so good and could eat whatever I wanted. You would not believe the crap I was eating -- pizza, taco salad, tacos, spicey foods, raw veggies, etc. Normally if I thought of eating a taco, it would take me 2-3 days to recover. Not only did I have taco salad one night, but I had tacos for lunch the next day then pizza for dinner. I didn't get sick.

Doing good, feeling normal. Totally spaced taking the enzymes. OMG... I can tell. I have been doubled over in pain for the last week. I couldn't figure out why then I remembered the enzymes. You can bet I'm back on them!!

http://store.yahoo.com/iherb/vegepancrea.html

mike bauer

12-25-2005, 07:50 PM

Miami Project has gotten way off course as far as I can tell. They are a giant HOG of the resources and are producing very little. They turn down most for money reasons, reqire cash) to be seen. They turn omany , many desarate new SCI's and the figureheads live like KINGS. literally Kings... off of the fund raising efforts. I dont think they are what they started out to be. They have certainly made their share of big promises and and predictions and have delivered ???. I know they help people in the Miami area.. of course.... but I personally dont see them interact with the SCI community, sharing info and helping... much AT ALL. I personally hope they are uncovered for what is really going on down there. I also hope Im wrong with my information sources and suspicions.

j c

12-25-2005, 08:56 PM

i agree with you mike,the miami project does not seem to be doing much.i really wonder what they do with all that money from the various fundraisers

alan

12-29-2005, 09:08 PM

No effect from the enzymes so far. :(

stlyin moe

12-30-2005, 11:45 PM

Alan, how many are you taking at each meal? I started out only taking 1 with each meal then went to 2 then to 3. It was almost as if the enzymes had to build up in my GI to "normal" levels again. Then once I was back to normal I had a couple accidents and figured out I should stop taking them for a few days. I was able to not take them for 2 weeks before the pain started to creep back in. Monkey with the dosage per meal and see if that doesn't help.

I also agree Mike, miami seems to have become a behemoth that eats money. Their last "breakthrough" was that combination treatment that was supposed to have shown great potential. They had their big press release and sent out a really nice brochure to everyone in their mailing list asking for MORE MONEY. They said they needed 2 million to take this new discovery to human trials. I emailed them asking questions about human trials potential of their last "breakthrough". They emailed me back saying they had no idea of when their new procedure would see a trial, but they didn't stop raking the cash that was pouring in for just that reason. In fact, a lone philanthropist poneyed up the majority of the $2 million. So here they are jumping up and down asking for cash to be earmarked for a human trial but all along knowing that trial will likely never happen and if it does it'll be so far down the line the current $2 million will be forgotten and they'll be asking for $6 million more!

The Bounacontes (sp?) don't realize it but they're nothing more than lap dogs trotted out for pity factor to be used to tug on the heart strings of the soon to be parted with their cash. They hold golf outing tournaments and lavish parties patting each other on the back for "doing something" about the cause when little is actually being done. There's photo ops that we all catch in their very nice brochure they send out showing all the suckers that parted with their cash. There's awards given out for all kinds of crap yet we in the SCI community continue to suffer while they applaud themselves.

I would guess those beautiful brochures they send out periodically have to cost in the hundreds of thousands of dollars to make and mail. Here's an idea, how bout a one or two page form letter informing us of what you're actually doing for research. Spare us the dog & pony shows and the expensive printing. Do you think we're really stupid enough to NOT see how you're pissing our money and future's away?...

Jadis

12-31-2005, 12:11 AM

No effect from the enzymes so far. :(

It took three weeks of 1 @ each meal before I started feeling better. Once I stopped takign them, it only took a few days for the pain/GI troubles to come back though.

txdiva04

12-31-2005, 01:07 AM

i understand ur pain i havent yet tried morphine but the pain is killing me. im so sad inside. its depressing me. some days i can't even get out of bed. im motivated to do rehab but im in too much pain. ive tried neurotin, bacalofen, amatriptaline, zanaflex, ultrum, topamax, kepra, cymbalta and more i cant remember! any suggestions.................

txdiva04

12-31-2005, 01:08 AM

SunnyCJ

01-01-2006, 02:44 AM

I took the whole bottle of the digestive enzymes suggested on here, taking them three times a day before each meal. I was hoping it would decrease the severe ice cold, needles burning pain I have in my abdomen and back, which has increased progressively since my injury 12 years ago. The enzymes did not make any difference at all. I was pretty bummed about it. I hope it works for other people. I have suspicions that baclofen might be contributing to my abdominal pain and after going through having a baclofen pump put in and the pain has got worse, I'm hoping to find something to replace the baclofen and see if it makes any difference on my pain and just have pain medication in the pump (my chronic pain doctor just recently added a local anesthetic pain medication to my pump and is slowly increasing the dosage, but so far no relief).

CJ