Feel like I've tried it all....what now?

[Brad09]

Hey everyone, I need some advice on where to go from here. A little background that might help, I was first injured back in January 2012 (T6 complete). I was sent home after 2 months of rehab on oxybutinin and 300mg of neurontin. At this point, I had little to no nerve pain. However, it started after about two months. The pain is worst right at my injury level, in a band around my body. The pain I feel above that line (chest/back) is very sharp stabbing pain, while the pain I feel below (legs/butt/feet) is more of a burning pain.

In the last two years the pain has slowly gotten worse as time goes on. It started around a 3/10, and has progressed to about a 7/10 on an average day. Some days are 9's and some are 5's. I am currently taking 3200mg of neurontin, 400mg of tramadol, 4 percocet's (5/325), 20mg of baclofen, oxybutinin, and xarelto. I have tried lyrica (didn't help), methadone (couldn't stop throwing up), cymbalta (helped but acclimated to it), fentanyl patches (increased burning in legs/insomnia), lidoderm patches (didn't help), and topical creams (helped but not very long).

I am an architect, so I drive to work and sit at a desk on the computer for 30 hours a week. This has to affect my pain to an extent as my pain on the weekends is usually better. The pain specialist I am seeing is running out of ideas. I have started seeing another specialist for cognitive behavioral therapy for pain management. I am also going to try acupuncture and the alpha-stim in the near future.

So...after all that I am averaging 7/10 pain on a normal day. And for me, the depression/sadness always comes with/gets worse due to the pain. I'm not looking to be pain free, I just need to find a way to get it down enough to do the things I need to do everyday. I was hoping to get some ideas/support from you guys (nurses too!), especially those in similar situations/pain levels and those who have been dealing with this stuff for a long time. Any help would be appreciated!

[Jim]

Brad, the attached paper is the phase II safety study of oral lithium given to 40 subjects with SCI. It found that lithium greatly reduced severe neuropathic pain. The drug was given for 6 weeks and the pain was still gone at 6 months, and longer. A phase III, double-blind, randomized, placebo controlled trial is now being done. So far, half of the patients are reporting that their pain is gone.

The relevant sections of this paper are, p 144 "Secondary outcomes", p145 2nd paragraph.
Lithium can be toxic and should be administered by someone who is experienced, blood levels must be monitored.

[arndog]

Brad - how do you know it is neuropathic pain and not nociceptive pain from above or below your fusion like nerve root being pinched? Have you been to a spine surgeon who assured you there isn't anything mechanical going on?

[Freespin 71]

Brad.. hats off to you for being able to keep working . I deal with the same type of pain daily. I try and deal with it thru exercise and stretching , have not been to successful with meds and getting pain relief.. I don't know how you do Brad.. If worked in and office I probably wouldn't be well liked due to pain and how it effects me.. Brad I was a framer by trade and had a two story great room wall fall on me.. was a builder for over 15 yrs,.. was the last one holding it as we were attempting to stand it.. held it to long everyone was able to get out of the way except me... that was almost 11 yrs ago... miss my trade

[flying]

Hydromorphone has been giving me a stomach ache, so I'm thinking of trying morphine. Have you tried it yet?

[Brad09]

Thanks for the responses. I am going to meet with my neurosurgeon again and see about having another MRI done to rule anything else out. I haven't tried morphine. I have tried to be more aware of exactly where the pain is and I think now that the majority of the nerve pain that I have described as being above my injury level seems to be right at the level instead. For some reason the pain will feel like it's higher up but if I try to touch my skin where I think it's coming from it's right on my level. I met with the doc again on Thursday and he wants me to try OxyContin 10mg twice a day for two weeks and see if that helps. He said that we are getting to the point that he is running out of drugs that I haven't already tried. Not sure if I'll need to do some sort of procedure next like the spinal stimulator or something. I just don't know. I hope so bad that the oxy helps. I'm so tired of trial and error with all these meds. i will keep in mind all of the suggestions, thanks again.

[arndog]

brad - glad you are going to the neurosurgeon to be sure it is not mechanical (nociceptive) pain. Not that 'just neuropathic pain' is a good thing - it isn't . Better it be mechanical and it can get fixed. Hey - here is another point I would like to make. You say you are running out of meds. Well I don't exactly get that since you can always go up on the dose. For example , any opiate, you can go up on the dose. Neurontin - you can go to 4000 grams a day or more . Yes, I know you will be dopey and clouded but, there is only so much one can handle….. good luck

[dejerine]

Hi Brad

Tough to read of yet another person with post SCI pain. Sorry to read of it again. My perspective is very similar to Arndog. It can be challenging to know which of the pains is Central Pain and which is due to what Arndog has called mechanical pain. What is called mechanical pain usually is nociceptive (ordinary pain ie NOT neuropathic), but there could be more data. So called mechanical pain usually means pain from the movement or maintenance of musculoskeletal structures. It matters because musculoskeletal pain can often be treated and SCI patients have usually injured their spine as well as their cord. If somehow the spine and its muscles and ligaments are not injured, the surgical access to the cord or spine may have altered things independently. If surgical appliances have been used, and are the source of the pain, most would not term that neuropathic pain. It would rather be of the mechanical pain which Arndog mentioned. (hopefully I am not putting words in Arndog's mouth, as he is fully capable of naming pains).

Whenever we write about this we struggle because the vocabulary is so vague. Doctors do not have the necessary time (usually hours) to ask the necessary questions and patients in pain are usually unwilling or unable to force themselves to find words to really convey to the doctor what is going on, in full detail.(see below) The elaborate workup necessary simply is not provided for in today's type of medicine. When insurers are willing to allot days rather than minutes, to the history and physical exam we will have much better data. Ditto for the fMRI studies which would help us learn more. At four thousand a study, radiologists are not going to be enthusiastic about studies which take hours to do right, with evoking stimuli part of the fMRI. Pain is not considered by most to be a valid reason to spend a lot of time. They must get on to those evaluations which do not involve so much imagination. (Einstein, "Imagination is more important than knowledge")

In my opinion the recent trend to do away with the term "Central Pain" is ill advised. Having talked to some on the nomenclature committee, I feel this term dropping resulted in part from simple frustration by professionals and not really having the ability to sort things out ie to sort out Central Pain from peripheral neuropathic pain from ordinary nociceptive pain from nerve entrapment, or mechanical alteration of the motion segments of the spine from injury or needed surgery. Hopefully, they will learn enough about causation to restore the terminology with rational bases.

Right now many clinics simply prefer to use "Neuropathic Pain" so they don't have to struggle with further specificity, which appears to be knowing which of the pains is due to central disorder and which is due to a more peripheral nerve pain. Not that all neuropathic pain does not involve some central function.

The Mitchell test to differentiate central from peripheral involved trying to evoke the pain with light touch. In PNI the pain from light touch is immediate. With Central Pain the burning dysesthesia has a latent period, usually from a few seconds to maybe twenty to thirty seconds. Carl Saab has shown that this latent appearance of evocation correlates, or appears to correlate, with timing of activity in the vermis, in the cerebellum, which cranks up about 20 seconds after an evoking pain stimulus.

The Mitchell test is typically done by placing a sheet of newspaper or a layer of Saran wrap on the area of decreased sensation which is dysesthetic, ie burns something like acid under the skin. Whether this evocation (worsening of the dysesthetic burning) is due to the skin warming up is not known, since the most potent evoker is usually a blast of cold air. Cold air is such a potent evoker it is not suitable as the evoking stimulus for th Mitchell test. You may wish to try the Mitchell test on yourself. Remember however that it is from an era long ago and many clinicians today do not use it or may not credit it. Mitchell was a Union surgeon during the civil war, who saw so many with central pain and PNI pain from gunshots to the neck and elsewhere that he set up an entire wing at Johns Hopkins to study nerve injury pain. He first encountered it when his "bravest captain" was shot in the neck and from the burning developed the mental "disposition of the most nervous girl". CP really gets to you. It does not stop and furthermore, it blankets the body. It also feels alien, and the strangeness is creepy, intimidating, and does not belong in sensations formerly known to us.

There are MANY burning sensations of the post SCI patient which are not Central Pain. Those which are peripheral nerve injury pain (or ordinary mechanical at or near at level pain Arndog mentioned) may be due to an injury at the peripheral level.

If the pain is CENTRAL, then one has to be realistic that pain relief may not be available (although sedation may provide something like pain relief, to a degree, by quieting the central nervous system). Opiates are inhibitory at the cord level, but they are excitatory in the Central nervous system.

PNI pain tends to be treatable, while Central Pain tends to be resistant to any therapy. Those therapies which do work to some degree are largely sedative in nature. There is a controversy over whether those finding some relief from opiates are actually having pain reduction or whether their central nervous system is simply being quieted, and no one really can say what difference it makes.

If you want to be high function a sedative may frustrate you, since your level of performance may suffer. If your main goal is not to kill yourself (and there are those whose pain is at that level) then function itself may present a problem.

Before antibiotics there was a determined search to find something for infection. Many things (such as intravenous mercurichrome) were tried, even at the best hospitals like Johns Hopkins. When antibiotics were discovered all the the old ineffective remedies were discarded. They simply had not worked.

For those of us who have had CP for a very long time, we try not to get our hopes up, although we would like relief as much as the next person. I would save money and try to have a plan B for the future. Many who have tried to work find they eventually collapse or must choose much lighter work. Retention of a little motor function does not mean your pain will corresponding be less than those with total loss of motor function. Wall and others published a study in "Brain" which indicated the very worst cases of CP were in those who retained some motor function, the so called incomplete injury (based on motor function, not on pain). After reading Alan's article at painonline.com I am sure that some with complete lesions are just as severe as the "incomplete".

Hope your pain is indeed peripheral nerve pain, because then therapy is much more likely to be found. Arndog makes a lot of sense. I would read and reread and try to get what he is saying.

There are certainly perspectives on this which do not mesh with my perspective. I know some very top clinicians who do not think they are able, nor do they think their patients are able, to tell for certain if some of their pains are central or peripheral. An example is the burning in the bladder with filling. It can be very tough to know why CP patients have this. Is it central? Is it peripheral? Right now we don't have enough info to make a call. Most with CP who never had this prior to their spine injury guess it must be central, but the pain has some aspects of both Central and Peripheral Nerve Injury.

If you take extreme care to carefully describe your pains, maybe some of us here can suggest ways to try to talk about them. Not that we are attempting to do more than educate you, but not to actually help. We are NOT your doctor or other professional and what you read here is not to be relied on.

Especially important is the nature of your pain [could you have felt this type of pain prior to your injury or is it bizarre (dysesthetic)], location, periodicity, evoking stimulus, distally located on the body, spontaneous vs. evoked, alteration in superficial sensibilities, and whether the pain is in the area of diminished sensation All these aspects are important in figuring out what type of pain you have. It is not enough just to say "this pain I have at my chest level". You must go MUCH deeper than that.

YOur skill as an architect can come in handy. Your plans do not stop at a sketch. They must be very specific and use CAD to really lay things out, including blowup where fine detail is needed. There is no software for central pain, so you must try to do a verbal CAD, very complete, and then you at least have a shot at using clinical features to complement or to replace "studies".

Number your pains

With each one ask
What is the magnitude or agony of each pain.
Is it dysesthetic (bizarre, complex, "unreal")
What brings it on and does anything relieve it
Where is it located on my body
How long does it last (intermittent?) Spontaneous or evoked?
Does it zone out or is it in one place? Is it on the skin surface, just beneath, or in the muscles
Can I tell the actual boundaries of this pain or is it poorly localized
Can I sleep, wear clothes over the affected area.
Have any meds helped?
Are the superficial sensibilities (touch, heat etc) diminished in the area of pain.

As good as your description of your pain was, and it was better than most, your doctor will need more. YOu did a nice job of contrasting the sharp pain with burning pain but I still do not understand. Is the burning pain like pure heat or is it like acid under the skin Are the pains mixed. Is sharp pain stabbing, shooting, needle like or what? If you look at each feature of the pain as possibly suggesting a different pain, it may help.

[smokymtn memories]

Hi Brad, you've just gotten advice from some of the best here. I know what you're going through......I've tried so many different kinds of drugs, I've lost count and track. I finally ended up at a pain clinic almost three years ago now. The best for me has been gabapentin 3200mg a day, mst morphine 20mg three times a day, and peracet up to three times a day for the break through pain, and then baclofen for the muscle spasms. I bounced from family physician to neurologist, to physiatrist, and gave up. My neuro surgeon sent me to a friend of his that runs a pain clinic, and finally some help. Mine is cp and neuropathic.....chronic, severe, and progressive. Besides the MRI's taken, I've had EMG's done too.

One of the hardest things you'll ever do, and continue to do is to not give up. There are going to be good days, and bad days, and sometimes it will seem and maybe will be, more bad than good. What makes things better, what makes them worse? Does the weather affect you? The number game doesn't mean that much to me. My 5 may be your 7, or vise versa. My pain doctor told me once he didn't believe it when he's told someone is at a ten or better. His opinion is the pain would be so bad you would be passed out! Not sure I agree with that, not when you can spend days rocking back and forth silently crying. Mine has some issues of his own, has dealt with some burning pain at one point, and he continues to study and do research. But a part of me thinks he doesn't have a clue..........lol Your doctors may come and go until you find the right one to help you. I stick with mine because he tries to make sure I can make it through the day the best I can without being doped up. All the meds do is numb us. They don't cure anything. That med doesn't exist. I wish it did. I'd give anything for a drug that didn't numb you and did some good. One of the best ways to help, is to make sure our doctors know what kind of pain we have, and where it's located. I hope you can get things under control, it isn't easy.

[jody]

except for methadone, iv tried just the same as what you list there.
Recently iv had a journey with B12 deficiency and loss of intrinsic factor, which is what makes processing B12 possible. Iv been using fairly high doses of B12. I started at 10,000-15,000mcg a day and now can maintain on a dose of 5000 once a day.

I notice my nerve pain is less horrible, and I have less spasms and clonus. I still get burning from sitting on my butt too long, However the stabbing, and burning sandpaper stick up the butt feeling and stabbing in my feet and hands is getting to be less a common feeling. I can sleep much better too, and I finally have an appetite which was very bad after my accident. I have no idea why B12 would affect nerve pain, but it seems to. Im using cyanocobomine but methocobolmine seems better absorbed. I wish I knew why it affects my nerve pain.

I have also the same kind that goes around the body at the level of injury, which for me is L5. you cant really overdose on it since once the receptors are full it passes through your body. Digestion is better, and after eight months Im noticing there is no longer the AD symptoms Iv always had with bladder/bowel program. I haven't been to the neurologist yet since starting B12 therapy, to ask why it would affect nerve pain, but it can't hurt to try adding good quality B12 to your diet. Im using Natures Bounty sublingual which you can find a rite aid. I have had injections, but I get a stomach biopsy on Friday to see what the future plan is for the shots. I don't know what that is about, or if the nerve pain is because of injury or because of deficiency. my nerve pain was there upon injury and got worse over the first year after injury.

[jody]

one thing to note, is that B12 a byproduct of a certain bacteria in the gut. what if sci'd people are killing their intrinsic factor with antibiotics to treat UTI, and other infections, and that affects the severity of some kinds of nerve pain?

Antacids prevent absorption of b12, as does some other meds such as simvastatin's, many kinds of antibiotics, and some diabetic and blood thinning medications. I was taking five different kinds of meds that might affect the absorption of b12. I have cervical degeneration and a cervical defect that was attributed to the autonomic issues, but Im no longer getting AD with the higher dose of the more potent B12. there are other symptoms to deficiency such as anemia, profuse sweating/freezing (intolerance to cold) and for me I have tachycardia and fainting, which is almost gone now except when I have withdrawal from my pain patch. My blood pressure is more stable. Iv wondered if there are a lot of people who have a B12 problem, that also have sci.