Pain and paralysis

I am 34 and wheel chair bound due to back surgery in 2007 that paralyzed me. Prior to surgery, I was having sever pain in the back and legs, walking and falling down. I had a mylogram that showed spinal blockage of 70% at Thoracic 11 - 12 and more lower by the nerve roots. I had a lamonectomy on the spine and the other nerve roots spikes removed. It took 8 hr and one of the roots exploded and had extensive surgery to fix it.

Since then I have always been in pain. I have lost my right leg due to gang green on a wound on the heel. I have reduced tactile feeling in my lower leg but constant burning. I am on 2mg dilaudid every 4 hrs as needed. Vicodin and Percocet don't work. It keeps my pain in my legs and back to a 6-7, but it never goes lower. I have tried different neuropathy medicine. Nothing has help.

So I am posting this out to our community to see what others do for their pain that might help or if others are going through the same thing and how they are copping with it.

Hypnotherapy and accupuncture work for me, not saying its your answer but with that level of pain constantly

I wish you well friend

CD

a reply to: bigvig316

Very eerie!

I'm 37, also wheelchair bound. I have Syringomyelia in a similar spinal position as you. (Cant remember the exact numbers now, but it is about 14 centimeters long.) Probably bigger now, I've not had it checked in a few years. I've been in incredible pain, burning, stinging. Like, skin torn off all down my chest and legs. It's been over 10 years and very little relief I've found.
My body just did not take well to oxy-contin type drugs, morphines etc. It made my pain slightly better, but I couldn't be a parent on it. So I was on Gabapentin for many years (8000mg per day, very high dose and combined with panadeine fortes as well).
Anyway, In my search, I've eventually settled on Lyrica, and Tramadol. I can get by on fewer tablets for the same amount of releif. Although, it's not a proper 'fix'. I'm still in agony day-in day-out. Much of my battle is mental, I try and shut it out as much as possible when the kids get home from school. But it's a never ending battle for me. If you find a miracle drug let me know!

Sorry to hear of your leg loss, it's bad enough having everyone stare at you whenever you go places, let alone a missing leg for them to fixate on. I hate being outdoors anywhere public, I'm pretty self conscious. Honestly hope you manage to find a few hours each week pain free.

This is beyond me, but I cured myself of heart disease using Linus Pauling therapy and Iodine.

IMO, the best living doctors out there are:

Dr Mercola
Dr Richard Schulze
Dr Mark Sircus
Dr Brownstein.

*

Joanna Budwig and Linus Pauling have passed away, but both are excellent.

I'd try Dr Schulze first. He has some amazing stories. I'm sure he's seen cases like yours. His cayenne tea helped my blood pressure return to zero.

Do any of you find that alcohol relieves neuropathic pain? Half a glass of Jim Beam small batch? Just wonderin'.

a reply to: weirdguy

I don't drink, so can't help that. Mind you, drinking would probably help (pain wise) but that's not a real solution to long term pain is it (lifestyle wise)?

a reply to: bigvig316

I had two back surgeries, the second ended in paralysis. For some unknown reason I regained feeling, the nerve which was cut healed itself, not exactly sure why, not even the doctors understand it, they say I should still be unable to walk... but when that nerve decided to heal... it did it wrong...

Now I have CRPS type 2 and while now I can walk, I am in constant pain. While CRPS in most only effect the extremities such as the feet or hands, in me it is more severe, in that it effects everything from the waist down. The pain level makes them coin this disease the suicide disease, because the pain level is so high most people simply cannot handle it - and commit suicide.

And I will admit, my first 6 months of this disease I sat with a gun near to my hand, and lived through 5 minutes at a time, trying to not put the gun to my head and pull the trigger. The pain is literally unimaginable.

That was 12 years ago. I am still in the same amount of pain, but through prayer and meditation, mind over matter, mind over my body... I have simply learned how to deal with the pain. Now I am used to it, and can manage a reasonably normal life... although I am having a bad day today. I have been able to work and hold down a job and everything;...

dealing with pain takes time... sometimes you just deal with it 5 minutes at a time... sometimes only 1...whatever you can manage to get to the next milestone.

In the beginning, I was like you... on some serious narcotics. And even now, sometimes the pain is such that I have to go to the ER and have them knock down the pain level an extra notch through IV dilaudid. But I went from taking 100 mg. of oxycontin a day, with vicodin for breakthrough pain, sleeping pills at night, and gabapentin 2400 mg a day along with muscle relaxers, to only taking gabapentin, naproxen and the occasional oxycodone. (and when I say occasionally I mean it, only one or two 7.5 mg. pills a week)

You WILL get there.... it just takes time, and you have to learn how to compartmentalize the pain in your mind.

Until then, look into the newest treatments for RSD/CRPS perhaps. Nerve pain is nerve pain after all, and what helps one may help another.

a reply to: Qumulys

I am sorry to hear about that growth. Luckily mine hasn't grown, they just lie on the cord that is swelled so it doesn't work. I hope your pain doesn't get worse. Have they try A nerve block or something on those lines where the pain nerves are.

As far as being stared at. I know all about it. The worst is when it is family.

a reply to: weirdguy

I have tried the crown and coke route, it is a temporary relief, and it doesn't kick in till the 4th glass. Only down fall is that it makes it hard to get in bed when you are drunk. I have to slide on a board and you need a degree of hand eye coordination.

I have spinal stenosis and nerve damage in one leg. I take gabapentin for the nerve damage and it works well. My regular pain med isn't worth mentioning because it works but not that well or for very long. I hesitate to take stronger pain meds at this time because there are more side affects and If I reach a point where I'm going crazy from pain then I will need to get something stronger. Even with pain meds, I am in pain every day. I decided against any kind of back surgery because I have heard way too many negative stories.

To all of you suffering, I know it sucks and you are not alone!

That's another 2 of you that have taken Gabapentin. You probably both know it's to try and block those nerve pains. I was on it at 8000mg per day.... That made me nervous, so I eventually made the switch to Lyrica. Might be well worth trying to give it a test run at some time, I'm managing on 4-6 tablets a now. It's basically the same thing as Gabapentin, but a newer take on it (apparently). So give it a whirl. Main side effects I seem to have is teeth grinding from it.

It's very difficult to describe nerve pain to those who don't go through it. My left leg is like raging pins and needles, non stop. It wears you down so much. But I get strength seeing others coping and try and tell my self to man-up a bit. Hang in there everyone

a reply to: Qumulys

They made lyrica as a thing that was supposed to pinpoint the exact thing in gabapentin that blocks nerve pain. Many many many people like it... when it first came out I tried it, but for me the gabapentin works better... its definitely worth trying - so many people swear by it, but for whatever reason I'm just not one of them.

I remember the pins and needles feeling...that was before the CRPS though...

for me now it is like my legs are on fire all the time, on top of that it feels like the bones inside my legs are being crushed in a vice, and on top of that there is not good circulation or something, so its also cold at the same time as its on fire. I have rolling cramps near constantly in my legs, just up and down and down and up... plus even the slightest touch feels like someone stabbing me with an ice pick... even a feather touch feels that way for me.

I couldn't wear clothes in the beginning, or even cover with a blanket, and I used to wake up having dreams that I was trapped in a fire and burning alive... that was when I could sleep or dream, most of the time my body wakes me up well before REM sleep. That was why the doc gave me sleeping meds, put me in a basic coma ( lol )so my body could rest.

But I'm probably different than most of you... what I have means the pain signals to the brain cannot shut off. They say eventually instead of coming from the original effected area, it starts coming from the brain itself... at that point is when they say there is never anything more they can do for it. I was at that point long ago I think.

Nerve pain sucks, and it does crazy things to your body!


This video, is about the best I can ever explain to anyone what I have:

My nerve damage came after being hit by a minivan as a pedestrian. It is like numbness, fire and pain all at the same time. If it just numb, I tolerate it but if gets to where it is really pins and needles and fire and pain, I take the gabapentin and it works great! At one time they were supposed to take lyrica off the market.

a reply to: bigvig316
Try combining natural (L) and synthetic (D) phenylalanine

I'd start with a very small dose first, dilute this in distilled or structured water never tap or bottled water then see if it removes the pain increase the dose once you don't have any adverse reactions to it (even though its meant to be non toxic).

I've read (hence the small dose) that this is the most effective pain killer which also works on the actual injury at the same time.

you can try and increase your endorphins this also negates pain.
I would start taking sulphur (coarse crystal flakes) not msm as it doesn't work anywhere near as much as its meant to in the body due to the additives they put into it,
Boron (borax in the laundry aisle (not scented) and Iodine we are all deficient in these essential elements.

let us know if the phenylalanine works
and heres a link about endorphins
altered-states.net...

If taking phenylalanine, do it on an empty stomach.

I would try gelatin or collagen hydrolysate. It is basically collagen derived from animal's hyde. Take it on an empty stomach also. Gelatin will have to be mixed in hot water; collagen doesn't have to be.

I've heard evening primrose oil helps a lot with diabetic neuropathy pain. Lyrica (gabapentin) is prescribed for it also. One of my uncles never took lyrica and managed his neuropathy with evening primrose oil.

Here is my recipe for pain, copied and pasted from another post:

The cheapest and most effective that works for me is:

1. Buy 2 ibuprofen (Advil) or naproxen (aleve) gel caps. Make sure you get the GEL CAPS - It makes it a whole lot easier. If it' is late at night, a tablet will work also. But crushing a coated tablet and trying to seperate the coat can be a bit frustrating.

Anyways, bust open the GEL CAPS with something.

2. Get some castor oil or any other oil from your kitchen. It just needs to be edible.

Mix the LIQUID DRUG FROM THE GEL CAP and ANY EDIBLE OIL from the kitchen.

If you are not using the optional step 4, any regular lotion that you use will work also.

3. Rub for a few minutes.

(Optional) 4. Make a 50-50 solution of DMSO (99.999% pure - look up on amazon or e-bay. They sell ODORLESS DMSO). You will have to pre-make this 50% DMSO solution. Don't make this on the go.

MIXING WATER AND DMSO IS AN EXOTHERMIC REACTION (GIVES OFF MASSIVE HEAT).

Make this before hand. I bought some dark glass amber bottles from Amazon. They come with a glass dropper. I put a few drops on and rub it in. DMSO will really make sure the above concoction goes deep into the tissue.

WARNING

DMSO will transport things across the skin into your blood stream. Make sure you clean really good before you apply DMSO. From what I researched a long time ago, the upper limit for DMSO to send it in to the blood stream is 1000 daltons. I can't find that source again. But the point is be careful.

For example, if it is on my knee and I'm wearing pants, I would roll them up to make sure none of the dye is in contact.

I personally have bought castile soap. Look it up on Amazon or your Whole Foods. There is one brand with thousands of reviews. Use that. I wouldn't want residue from other body washes, lotions or anything going into my body. Finally, you can also put a saran wrap on top of it. I haven't done this myself yet but I will the next time I use it.

Hope this helps,

Fullset

TL; DR: NSAID gel caps + any lotion/edible oil + 50% DMSO (edible oil if using DMSO).

a reply to: bigvig316

This suggestion is herbal - corydalis. I got pretty excited when I found it in one of my books as my brother has very severe pain - he is on heavy duty medications too. Sometimes the Doctor cuts it back (it is addicting). He's also afraid Medi Cal won't pay for it at some point

Corydalis is an herb often used in traditional Chinese medicine for pain relief. Experts say it can be used for headaches, menstrual pain and back pain – even back pain caused by nerve problems or muscle spasms...A compound, dehydrocorybulbine (DHCB), is thought to be responsible for the herb’s pain-relieving effects. Corydalis appears to work similarly to prescription pain medications that block pain signals in the brain. However, experts say corydalis can be used to treat chronic pain without carrying the same risk of addiction that many prescription pain medications do.

Dr Oz writes about Corydalis

Please read the article and would be good to do a bit more online research. It can interact with what you are taking now!! Also can cause a problem if you have an irregular heart rhythm. They have granules which sounds like a good way to go as you can dissolve an sip. I am going to get the raw/bulk herb and make a tincture as I already do that sort of thing.

Now for the disclosure! This has not been approved by the FDA. You should consult your doctor before trying anything new. This is for informational purposes only and not intended at medical advice.

If you try it - please post results!! Best of luck to everyone.