Neurogenic Pain vs Common Pain

A simple graphic to compare Neurogenic Pain vs what might be called 'Other Pain' or 'Common Pain' or perhaps 'Everyday Pain' and their response to analgesics (pain medicine).

Regular Pain when treated with analgesics

Neurogenic Pain treated with the same analgesics

So how do you relieve burning Neurogenic pain?  In short you don't.  You grit your teeth and learn to live with it!

To my knowledge there are only four drugs which currently claim to alleviate Neurogenic pain.

1. Gabapentin
2. Nortriptyline
3. Amitryptyline
4. Lyrica (Pregabalin)

Are there any others under investigation, development or under restricted use?

From my personal experience (and I imagine every injury is unique), the above listed drugs may reduce my pain by perhaps 10% at best.  And I've tried them all.

Now if someone burns you with a lit cigarette 100 times an hour then reduces the burn to 90 times an hour, will you accept the kind gesture with gratitude?  Absolutely!  But ask yourself, is the quality of your life substantially improved?

I continue to grasp at straws...

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Odds & Ends

1- Had a third series of Botox injections two weeks ago and hoped that this would aid the tightness in the calf muscles to allow better movement/range from the ankle.

Now, when I had the first two series of Botox injections, the physiotherapists were concentrating on getting me up and walking - with the hope that Botox would improve my stride. They didn't check for range of motion pre and post injection to see if there was greater range and flexibility. Internally I did not notice any change in sensation nor any increase in range from my perspective. As the effects of Botox were to last about 3-4 months, before blocked nerves regenerated and formed new pathways, the only feedback I had regarding the effects of Botox therapy was what I thought was a shortening of my stride as the next injection date approached. My Physio and I thought that this was probably due to new connections circumventing the Botox blockage and therefore the Botox was effective.

Now that I am upright and able to walk for periods of time, my new physio was concentrating on various manipulations to my limbs such as stretching out the quads and hamstrings as well as the piriformis muscle (but more on that one later). As she was directly observing and working on the range of motion of my lower limbs, she was interested in seeing exactly how much more range the Botox therapy provided after a series of injections to the Soleus and Gastroc muscles (basically the two calve muscles joining to the achilles.

As it turned out, she said that there was an increace in flexibility and range a day after I received the injections, however now after only a week has passed, she no longer detects that change even with the increased therapy. Could the Botox really be that ineffective for me? If so, I really have to reconsider whether to take any more shots in the future.

2- As mentioned, I'm back to the Gabapentin from the Lyrica as in the end I felt the Lyrica had no greater effect that the Gabapentin, had fewer side effects (for me blurred vision and probable weight gain) and was less expensive which would please my private supplemental health insurance carriers.

3- Also as mentioned, I'm walking more at the physiotherapy clinic though still somewhat unsteady. Have to improve on the core muscle stability as the muscles, particularly the lower back, tire quickly. Trying to regain that link - feedback from the feet on the floor, telling the brain what's happening and subsequent messages from the brain telling the muscles how to perform to correct, compensate and maintain balance while upright. Since standing for the very first time, post injury, I still have not fallen to the floor once.

4- Tone- not the tone that athletes & body builders speak of when they say an athlete is really "toned", but rather refers to the increased tightness, post spinal cord injury, where the communication between the damaged cord and the brain, tells the brain to clench or tighten. Baclofen is supposedly prescribed to lessen this signal and reduce the tightness experienced.

In my case, I believe, (I believe, because meaningful feedback from therapists and doctors is sadly lacking) - In my case, I believe that because the injury is not quite symmetrical, one part of my spinal cord received more or different damage that another. As a result there is greater 'tone' on my left back muscles than the right resulting in a greater pull or tension on the left. It is also my belief that this results in my left side pulling more on the muscles attached to the hip and this asymmetrical pull results in my sciatic nerve pain. A tremendously painful affliction which is bothersome even when not sitting. On my stomach the nerve throbs with pain with every pulse and heartbeat. A truly maddening situation. On the few good days it is noticeable but tolerable. On bad days it is excruciatingly painful, drawing one's attention to it ever minute or so. Something I've endured for three years and no health care professional has offered any advice other than to "learn to live with it". Yeah, right!

This new physiotherapist has at least attempted to stretch out the piriformis muscle with a manipulation akin to grabbing my leg by the ankle and while bracing with one hand on my hip, pulling the leg out sideways. When she first attempted this on my weaker (painful) side, the resulting spasms were so great the I thought the recoil was going to kick her in the teeth. However, within days the spasms lessened to where now she can pull through just about a full normal range with only a slight shudder on a very few stretches, I do believe this has helped the pain. Although a bit tender the day after the therapy, I get a couple of good days afterwards. For how long, I'm not sure as I'm back in physio receiving that stretch and subsequent post physio tenderness the day after. Not sure how long the relief might last however as the tone is always there, the hip will most likely be pulled out of alignment once more.

5- Low Level Laser Light Therapy. Not sure if this is revolutionary or just plain Voodoo science but I've had a few sessions with laser therapy in an attempt to help my sciatic nerve pain. Can't quite see how it would help in my situation. I understand the premise is that the laser light somehow alters the cellular biochemistry at the site it is applied thereby increasing healing. (very oversimplified). But I just can't see how shining light on my butt will cure a pain that is much more deep seated (no pun intended). Therapy consists of placing these light emitting panels under my shorts, positioned against the skin at the afflicted site. The laser is turned on for six minutes after which a different panel is inserted (different intensity?, frequency???) for another six minutes. There is no sensation associated with the therapy (ie. no heat, pulse, pain etc.) After about 4-5 sessions now, I notice no difference, however I notice very little change from any of the therapies except possibly the stretching of the piriformis muscle. Nerve still hurts but doesn't spasm as much. Laser therapy was included as part of the physiotherapy session.

6- My physiotherapist suggested I try massage therapy once again to loosen up the legs and perhaps increase circulation. I passed the issue by my physiatrist (Doctor), specializing in spinal cord injuries however he stated that there are no studies suggesting that massage therapy aids this tightness. The 'tone' will always be there - it cannot be shut off but only controlled with doses of Baclofen. It was my impression that he believed that the tone would simply undo, or fight any improvement the massage therapy might offer, negating any gains almost immediately. As my private insurance does cover limited sessions of massage therapy, I though I'd give it a try because;

• my doctors have been wrong in the past, numerous times
• each person responds differently to therapy
  
• the cost is covered and the therapy can't hurt
• it may aid circulation if not the tightness from 'tone'

Having had my first massage therapy session with the new masseuse, my impression is that she knows her profession and that it offers temporary relief if not longer lasting. With only one session I have yet to make judgment on the effectiveness of this added treatment. My hopes are that it too will help my agonizing sciatic nerve pain.

Phyisotherapy twice a week after work for an hour to hour & half and Massage therapy once a week for a half hour. 12 hour days! Pain at times is unbearable and not much to look forward to can really mess with the mind.

Back to Gabapentin From Lyrica

January 2009 - Nerve pain is as severe as ever. Intense burning from just below the knees to the toes. A cross between burning and 'pins and needles' or perhaps if your limbs were submersed in very hot soda water with the thousands of bubbles bursting as 'pin-pricks' each and every second of each day of the year. There is that constant tingling element to it.

With my latest prescription renewal I abandoned my experiment with Lyrica and have gone back to Gabapentin although neither did much, if anything for the nerve pain. The Lyrica distorted my vision and induced sleepiness. Gabapentin is cheaper than Lyrica and although covered by my private insurance so I guess it's preferable to take an ineffective drug that has less side effects and doesn't erode the profits of the insurance company's CEOs.

I continue to take the medication simply because I feel as if I'm doing something, even if not very effective.

Re-evaluating Nerve Pain & Pain Medication

Re-evaluating Nerve Pain & Pain Medication

It has been 3 years almost to the day that the inflammation in my back from the initial infection and subsequent surgery subsided. A two-way street, so to speak, as it allowed both signals through to regain motion in my legs but also the signal of pain to be my constant companion from mid-January, 2007 to present.

Burning, searing pain that is a cross between sensations of ‘burning' and ‘pins & needles’. Or perhaps a constantly fluctuating sensation as if my limbs were immersed in very hot club soda (soda-water) with painful effervescent bubbles rapidly bursting along those limbs.

Initially prescribed 300 mg of Gabapentin three times a day along with 25 mg of Nortriptyline once per day, I felt that there was little if any relief yet lived with that pain for about 2 &½ years.

About a half year ago I persuaded my doctor to prescribe Lyrica (Pregabalin) as an alternative to the Gabapentin. It is my understanding that Lyrica was “stronger” and therefore a lower concentration was needed to achieve relief. I started at 25 mg three times per day for 3 months and at first I thought that I did notice an immediate slight reduction of neurogenic (nerve) pain. However, I now believe that was simply a coincidence - for whatever reason I had a slightly better weekend after changing to Lyrica. Within days the pain seemed to be as before (or at least my perception of it was) and the constantly searing and distracting pain was as before.

On renewal I asked my doctor to double the dosage to 50 mg three times daily (It is my understanding that some people can tolerate as much as 600 mg daily). Living with the 50 mg dosage for another quarter year has lead me to the conclusion that the increased dosage does little if anything to ease my pain but does distort my vision and I find myself very sleepy by mid day.

Vision may become blurred, with multiple images especially with illuminated objects such as stop lights. The tiredness is felt mostly at mid-day in spite of my having sufficient sleep each night. A drugged tiredness where my head swims leading to a disorientated feeling, at times even feeling ready to nod out. Having weaned myself off the drug slowly, I feel that pursuing Lyrica at an even higher dosage would only lead to more pronounced side effects.

As renewal of my prescription approaches, I will either go back to the Gabapentin or perhaps do without nerve pain medication as it seems to have little or no effect at the intensity that I experience that pain. These are basically the only drugs that are available for nerve related pain and I’ve come to the conclusion that they are ineffective on the pain I experience.

It is difficult to accept that this constant and rather extreme pain will be with me for the remainder of my life. I’m reminded of how animals, ceaselessly tormented by biting insects, frequently plunge into deep water to escape their suffering.
How soon before this pain becomes too much for me to bear?…..and where is my river?……

State of Affairs at Three Years Post Injury

So where have I gotten to three years post injury?

On some hazy day in April of 2006 I woke to discover my legs would not move. Major surgery weeks later after antibiotic therapy was initiated but seen not to be effective on it's own. Six Months over three different hospitals. Could not sit up at all - would flop over at the waist like a rag doll. Lifted from bed and chair with sling and hoist. No movement below lower chest, no pain (after initial surgical incisions) Catheterized. Left rehab hospital in about that state with only the slightest movement returning to my legs - which I decided not to share with hospital staff because of a disinterested if not negative attitude. Two doctors dryly stated that I would never walk again.

Returned home at the end of October of 2006 in about that state. Hospital bed in the living room, hoist, etc. Community health care sent me an in-home physiotherapist who assessed me and felt some flicker of movement stating "we can work with this". In January of 2007 I suddenly realized that I sat up with some abdominal control while reaching for something. As the inflammation continued to recede, the mobility slowly increased but the amount of neurgenic leg pain increased with it. The bad came along with the good. Post injury, through this period, I had massive spasms where one leg or the other would begin jerking uncontrollably, one or the other (never both at once, hmmmm?) and the would be violent and last sometimes for hours.
Started physiotherapy 4 times per week at my local community hospital (hospital number four). After a few months one gym session was replaced with pool therapy.
Got fed up with bowel treatments and catheter bags after the first year and got rid of them. Those functions have returned to near normal.

Continuing physiotherapy over the next few years, strengthening whatever muscles had returned under my command. During this time I was fitted for long braces (KAFO) which had a locking hinge at the knee. Put them on and wobbled in the parallel bars further strength and balance. Progressed to braces below the knee (AFO), with a limited hinge at the ankle. Each progression took about a year (a year from exercises on a mat to a sit-to-stand frame, another year to progress to walking with long braces, another year to walking with the short ankle braces, to now walking distances with braces and walker.)

Paralysis is only some 50% of the problem. The other major problem continues to be the intense and constant neurogenic leg pain (pins & needles/burning). The spinal nerves are permanently damaged and are continuously sending the signal that something is wrong and to stop it - only it can't be stopped.
Drugs have little or no effect on this particular type of pain.
Spasms have reduced to a few mild ones, usually late evening and not lasting for very long.

BoTox therapy could not be felt internally in any way but did improve my gait as the stride seemed to be longer and better controlled - that is, foot went right where I wished to place it rather than perhaps drift a bit or pull in to center. BoTox may have lost it's effectiveness about 3 weeks prior to my 4 month post-injection assessment and probable repeat injection.

In spite of the intense core exercises I still feel as if My middle is wrapped in a large Theraband (elastic band). Muscles are very tight and don't want to give at all. Doesn't hinder any motion or breathing but feels uncomfortable.

Muscular control has returned to much of my legs but the dorsiflection (lifting my foot off of the ground with heel in contact with the floor - or cannot tap my foot on the floor as I can push down but not pull up)

Post injury the muscles or back were altered such that I developed an intense sciatic nerve pain which manifested itself as an intense pain in the left seat/butt/hip joint area, making it hard to sit for any length of time. Turning on my side or back doesn't help much as even each pulse of circulating blood causes the spot to throb. The pain often manifests itself in the left heel at the same time. The most recent core exercises seem to have helped with this pain as it feels less intense, and occurs less frequently. Some days good, some not so much but can't correlate the change with 'post-exercise' fatigue, length of time sitting, weather, barometric pressure etc.

So in summery, I went from a catheterized rag-doll stuck in one position to now where I can turn to sleep in any position on my bed, dress myself and leave home for appointments without assistance. While my neurogenic leg pain remains intense and very distracting, other symptoms have improved immensly and I can walk with a fairly normal gait with the assistance of a walker. Distances are limited but are improving week to week. Transfering to a car or van is no problem as I can stand and swivel into the seat and lift my own legs into the car under their own muscle strength and control (no transfer board). Lyrica medication does not seem help the nerve pain much, if at all but one of the side effects is weight gain and I believe that side effect may be manifesting itself on me, which is problematic as I'm a big guy anyways.

So, I'm walking ever increacing distances but nerve pain remains the most distracting symptom.

This & That-More Bitching!

Pain - still trying to decide if the Lyrica has any appreciable effect on my nerve pain at the dose I'm taking. Thought there may have been a slight reduction at first but most of the time it's still intense enough to divert my attention to the pain every few minutes. Hard to put it out of my mind. No noticeable side effects at this dose, except perhaps occasionally blurred vision. May just be fatigue.

Insurance - my insurance company responded to my submission of the $1G+ bill for the joystick with their usual confusing statement.

• "The estimate for this expense is approved. Please remember that the actual amount payable is subject to plan coverage limits and deductible that are applicable. To be eligible for payment, the expense must be incurred while covered under the plan. We will assess the claim when we receive a receipt showing the expense is paid in full."

Okay, what does that mean. The expense is approved, but how much of it will be reimbursed is unknown. * Again, the expense has to be paid in full before they will consider reimbursing whatever amount they decide to reimburse you with. Hardly leaves me reassured or confident when dealing with such a significant amount. Again, as with my manual chair, what disabled person has such money floating around to pay in full prior to the insurance company's reimbursment? One of the reasons I pay continuous premiums to the company is so that major out of pocket expenses are covered when needed and so it doesn't drain my finances at that time.
If I have fire insurance for my house and it burns down, do I have to rebuild it with my own money and then submit it to the insurance company to see what portion they'll reimburse after my rebuilt house is paid in full??? Of course it is all how the policy is written but it is clearly designed to discourage eligible people in need from collecting on the policy. The CEOs need their bonuses and the greedy disabled are siphoning off funds!

*I've previously received a statement from this insurance company which read something like 'the item is covered 100% for the usual and customary coverage in your area'
-translating this bafflegab, it says something like 'of the charge you submitted, we may cover only about 10% of the expense but we cover 100% of that 10%.....Huh????

So, the joystick is covered but how much is unknown until I submit an invoice saying it is "Paid In Full". So, after inquiries, I have no idea of how much I am on the hook for. Sure doesn't give me the "piece of mind" the insurance companies try to sell you with all their excessive TV ads!

Return to Work - Finally, almost exactly one year to the day I started looking into returning to work, I have a return date set for September 8th. This year long process required;

• mounds of paperwork filled out - filed or to retract other forms filled previously
  
• doctor's assessment and approval ($120.00)
• 2 hour in home interview which covered topics such as how many rooms I had in my home and what did I have for pets (what the *&$%# does this have to do with my returning to a job I still held?)
• Bean counters and number crunchers at the Insurance Firm ruled that since I want to return to work, they no longer considered me disabled and came up with the date of April 3rd for me to get back to work for on that date my disability pay would cease. It did and I've been coasting on savings and family charity ever since.
  
• had an 'on-site' ergonomic assessment including photographs and measurements. Although my problem is that I can't yet walk independantly, the morons recommend that I need an ergonomic computer keyboard. Don't use one at home, my hands/arms are fine, why?
  
• Improper informatiion from my regulating college meant I had to take a refresher course to return to a profession I've been in for 30 years. Crammed a $350 36 week course into just under 5 weeks.
• Dealt with some unhelpful people at my regulating college to regain my 'practicing status'
• Interview with Human Resources, Occupational Health (2) & Department Director regarding various matters including safety measures. (how to get me out if the department burns down)

All that has taken a full year. Now I just have to get reaquainted with the specific procedures that may have changed since I was there three years ago.

Some Pain Relief?

Some Pain Relief??

Having replaced Gabapentin for Lyrica two days ago, I believe there may be some reduction of neurogenic pain. Where previously my legs below the knees felt like they were being repeatedly stabbed by thousands of sharpened pencil points, now I get the same sensation but as if I'm being stabbed with the eraser end of the pencil. The intensity remains but the sharpness of the pain is reduced. Still annoying but at this point I'm happy for any degree of relief.
So far too, I have not noticed any of the extensive list of side effects that Lyrica may induce.
If this remains the case, I shall ask my doctor to increase the dosage next time I require a prescription renewal to see if the pain sensation can be further reduced.

Which end would you rather be stabbed with 24/7/365??

Neurogenic Pain Treament Change

Treating the Untreatable

Neurogenic Pain

It was both a blessing and a curse when in January of 2007, I was reaching for some item in front of me and I realized that my torso actually angled forward. Previous to this, my injury had rendered me a virtual 'rag doll' from the chest down. Now, as the inflammation subsided, signals were beginning to flow again and muscles started to receive more and more signals. Muscles and limbs began to move, even if ever so slowly and weakly. The upside of this increase flow of signals was muscle movement, however the downside was pain. Nerves that send impulses to muscles to make them move, but also send sensory information such as tactile (touch), proprioception (position of limb in space) and, of course, pain.

With physiotherapy much of my muscle strength and action returned. Again, after being paralyzed from the chest to toes, I now have limited action only at the ankles and below. Pivoting my foot downward at the ankle (plantar-flexion) is quite strong, however the opposite, pulling my foot upwards (dorsi-flexion) is very weak. Lateral stability at the ankles is also reduced (feet may wobble or tilt at the ankle with reduced control)

But this post is about pain. It was the signals of pain that started in January 2006 and quickly increaced to a level that hovered between very annoying and excruciating. A constant sensation of a mix between quickly fluctuating "pins & needles"that quickly and repeatably stab and "burning" sensation as if your legs were immersed in very hot water. For me it occured just below the knees and extended to the toes. There would be some fluctuation up or down and in intensity, but for the most part I burned 24/7 from the knees down. So intense that it takes your concentration away ever few minutes as your mind drifts from the task you're doing to acknowledging the pain. Hard to enjoy a book, watch TV or concentrate at your job.

While at the rehab hospital, I was prescribed 300 mg of Gababentin (Neurotonin) three times a day. As my nerve signals were still not getting through at that point I felt no pain. On my discharge in the end of October 2006, I had the hospital discontinue this medication. In January of 2007 when the neurogenic pain revealed itself, I asked my family physician to re-prescribe the Gabapentin once again. I started taking it immediately but really felt no relief. This continued right through to this week. Didn't much help, but I continued taking it as I felt I was doing something to eliminate the pain. No relief and no noticable side effects. I could just as well have been taking a placebo.

I had heard about Lyrica (Pregabalin) on several occasions - from my physiotherapist, from the physiatrist administering BoTox, and some other health care providers. About a year ago (2007), I had asked my family physician about it but he was unfamiliar with the drug. On a quick consultation with his CPS (1), he dismissed it as having too many unpleasant side effects. So that was that...

The pain remained intense and distracting and in desperation I approched him again, intending to insist of trying it. This time, without hesitation or consultation, he wrote out a script for the medication. Strange!!?? I told him that, because of the side effects (discussed at bottom), I would like to start with a smaller dosage and work up if it offered any relief and I could tollerate the drug. I began taking 50 mg of Lyrica three times a day yesterday (July 17th, 2009). Only after one day, I wonder if the sensations are somewhat muted or reduced. Still too early to tell. So far no evident side effects other than perhaps some drowsiness shortly after taking it.
Although nothing will eliminate the pain, I do hope this drug would take the intense edge off and make life bearable again. It's hard to live a joyful, pleasant and productive life with your legs immersed in boiling water year round.

I continue to take the Nortriptyline (25mg at bedtime) for nerve pain but I feel it has little if any affect at all. Perhaps I may ask that be discontinued at some later date to reduce this biochemical soup in my system.

The side effects of Lyrica can include, dry mouth, blurred vision, drowsiness, allergic reactions and edema (swelling of hands and feet) , weight gain and possible increaced suicidal thoughts. This is not a complete list of side effects but some of the more common ones encountered.

(1) CPS - Compendium of Pharmacutical Specialties - a book compliling information on all the drugs available for use by doctors including information on use, dosage, side effects, contradictions, biochemical structure, pharmacokinetics (how it works), manufacturer etc, etc.