[City Girl]

I'm a T12 incomplete SCI for 11 months now. Recovery is going well. Pain and swelling are long gone and I'm regaining more motor function at a steady rate. I am walking with forearm crutches and sometimes 2 canes now.

I woke up on August 1st however, and something was wrong! The bottoms of my feet, the backs of my legs and the inner circle of my bottom felt like they were being stabbed by a million pins and needles and that there was tremendous pressure, like my feet and legs were swollen, but they weren't. Over the next few days that feeling was hit and miss. Now it is incessant!

I asked both my physiotherapist (20 yrs experience incomplete SCI) and my physiatrist (30 yrs experience) what was going on. Both said it was a good thing and that the peripheral nerves are starting to regenerate. My physiatrist upped my amitriptyline prescription to 50 mgs at bed (formerly 25 mgs)...but I'm still uncomfortable, especially during the day. It's hard to focus on work. Sleeping is not really great either. The other night I actually woke up from a bad dream that my legs were being whipped.

Anyone else experience this? How long does it last? Any suggestions for relief?

[carole338]

I have had burning and pain in my feet, legs, knees, and especially my butt, since my injury Feb. 07. It is almost constant. I take 400 MG Gabapentin 4 times a day. This seems to take the edge off the pain. I find massage, weight shifts and mild exercises help relieve the pain. Change your position often.

I remember when I was living at the re-hab center and my pain had gotten greater, one of the patients told me he would give anything to have my pain. He was a complete quad. I think of him often.

Be well,
Carole

[edlee]

It sounds like what I have had since about a year post. Mine has simply gotten worse since then.

The Gabapentin does, as said above, take the edge off, but it seems that the less I do the worse it feels,,,, so I just keep movin'.

I really hope that this is a sign of healing,,, but it hasn't been for me. Complete is,,,I'm finding out,,,, is complete.

I'm happy things are going well for you and I hope that continues.
ed

[City Girl]

Hmmm, doesn't sound really encouraging. I spoke to my physiatrist and she doesn't want me on gabapentin or lyrica as I am working and those drugs can make you dopey. I'm not really in pain anyway. It's just irritating. I had a massage this morning and I'm feeling a bit of relief. I guess I'll just tough it out.

[carole338]

Gabapentin does get you a bit dopey, but it also keeps away the depression a bit.

Good luck and be well.

[City Girl]

Going nuts with peripheral nerve regeneration!!! Not necessarily in pain. Just going crazy with pins and needle and pressure in my feet as well as the backs of my legs and the inner circle of my bottom.

Saw my 'secondary' GP today...seeing my 'primary' takes a whole day off, yet seeing my 'secondary' takes a half day off...(don't get me started on Cdn medicare!).

Notwithstanding, MY SECONDARY GP has upped my amitriptyline prescription to 150 mg/day as per my discretion. I was originally on 25 mgs/day, taken at bedtime.

After complaining about my peripheral nerve regeneration to my physiatrist, she gave me double: 50 mg/day. After three weeks, I still saw no relief so I sought out a secondary opinion.

Hence the increased prescription from this doctor.

Still just wondering about other opnions. Are there any. I don't think so but just want to check. CANNOT take gabapentin or lyrica...they are too much of a depressant for someone who is active and working. Further, I'm actually not on any other drugs. Totally off narcotics. The only thing else I take are vitamins and the odd advil (ibuprofen). So, maybe more amitriptyline is ok...

What do you think people??? (Last note: I'm a pretty tiny woman. 5'4" and only about 105 lbs. (Normally 110 lbs) I'm trying to gain weight but I burn so much working out and trying to walk. that I'm down about 5 lbs. Atrophy is also a big contributor. Body weight is a big issue with drugs and I'm a bit concerned.

Please share your thoughts. I want relief but not at the cost of other health issues...crazy drug ingestion.

[Trinity]

It maybe worth reconsidering the Lyrica, it really isn't that much of a depressant especially compared to amitriptyline or gabapentin. You start off a low dose and gradually increase it. I changed from amitriptyline to nortriptyline as it made me less sleepy, I think if I took 150mg of amitriptyine I would sleep for a week!

[City Girl]

What is a good dose to start off with and what have you increased the amount to and over what kind of time? For example, start at 25 mg and work up to 150 mg over a three month period...

[Trinity]

With pregabalin (Lyrica) I started off taking 75mg twice a day, i got no benefit from this and I think it was after about a week it was doubled to 150mg twice a day, this helped and from then on it was small titrations up, at the moment i'm on 150mg three times a day, total 450mg/day, and have been for the last 4 months (I think the maximum is 600mg). It did make me a bit sleepy for the first week or so but that quickly resolved. I know it doesn't work for everyone and I am not completely pain free but it has made my life immeasurably more comfortable.

Trin x

[russ1]

Now I don't get a huge amount of nerve pain - not sure whether being complete is a good or bad thing but it at least means that the nerve pain is kept manageable.

I was put on amitriptyline in rehab for nerve pain. On investigation and after discussions with my Bro who's a neuro rehab consultant I discovered that it's routinely prescribed not just for it's nerve pain supression (which is what they tell you) but also because it's an anti depressant. I switched from that to Gabapentin (which as far as I could tell then or now is not used as an anti depressant at all) as a direct swap to escape from the anti depressant and also for the antispasmodic properties of gabapentin.

Anyway I tell you this not to suggest you do the same but to say that for me amiltriptyline was a horrible drug, don't know what my dosage was but coming off it was like someone took the finger off the slow motion button and I was able to function at full speed again it wasn't that it made me tired just seemed to cloud my brain and take the sharpness off. It wasn't just me that noticed it either, a number of my friends said the same. Might have been co-incidence with it being 3 months post but my Bro seemed to think the effect was entirely cosistent with coming off the amytriptyline so I'm very surprised about your docs comments about gabapentin being a far worse option than the amytriptaline as that wasn't my experience but I didn't make the change for neuro pain reasons.

Now just about to get a baclofen pump so hoping to drop the huge cocktail of anti spasmodics that mean that working 3 days a week is a struggle tiredness wise.

[disjointed]

Not sure what Neurontin (gabapentin) will do for the nerve pain since it tends to work more on spasms (blocks a neurotransmitter involved in epileptic seizures). When I was on it for muscle spasms, I actually developed seizures! Seems like many on this site use this med without that problem, though.

For nerve pain, in addition to standard analgesia, you may want to look into Cymbalta (duloxetine) or Effexor (not sure chem name, but watch out for awful side effects) -- these SNRI's (selective Serotonin Norepinephrine Reuptake Inhibitors) help block pain in the peripheral nerves. Has worked wonders for my Reflex Sympathetic Dystrophy. Is often prescribed to diabetics for neuropathy.

Sadly, insurance issues have me weaning myself OFF it because I can't afford it!! More pain, plus unpleasant withdrawal symptoms! But, if you have decent insurance, it's definitely worth talking to your doctor about.

[ceazerus]

Hi City Girl - I used to be a city guy. I'm curious to your post. I have had peripherial neuropathy as a result of a side effect of medication for depression. It has been horrible - but for the last month VERY horrible - I've wondered to myself if it was the nerves regenerating....

How have you beeb feeling since this post?

[ems]

russ1, on Aug 31 2008, 10:40 PM, said:

I was put on amitriptyline in rehab for nerve pain. On investigation and after discussions with my Bro who's a neuro rehab consultant I discovered that it's routinely prescribed not just for it's nerve pain supression (which is what they tell you) but also because it's an anti depressant. I

Tis' also used for Phantom pain ;) I was onl it in Stoke, and for a year after, when I then started questioning my drug list! But a guy at basketball who is an amp, uses it for phantom side of things ;)

Peripheal nerve regenreation: my last op on my arm I was told its 1mm a day growth! They said it would take around 9-18 months for the beginnings of recovery to reach my hand. I've got another nerve conduction study next month to see where and how much there has been already. My ulner nerve was damaged in my left arm just above the elbow, and I had a tranpostion and sheath repair done in May. The the nerve conduction studies showed no output atall in February this year. So I'm hoping for just a little something next month ;)

This post has been edited by ems: 13 October 2008 - 07:53 AM

[City Girl]

ceazerus, on Oct 12 2008, 05:46 PM, said:

Hi City Girl - I used to be a city guy. I'm curious to your post. I have had peripherial neuropathy as a result of a side effect of medication for depression. It has been horrible - but for the last month VERY horrible - I've wondered to myself if it was the nerves regenerating....

How have you beeb feeling since this post?

It's still tourturing me! I'm particularly uncomfortable today. I just feel like the backs of my legs and the inner circle of my bottom are on fire. In terms of sensation, some has returned but it's hit and miss. I am sometimes able to tell if my bowels need to be emptied. I did not have that sensation previously.

[City Girl]

I think I spoke too soon. Bizarrely, in the past week, my peripheral nerve regeneration feeling has become selectively eratic. Last Saturday and Sunday, it was only in my feet and the feeling was minor. On Monday it was only in the tips of my toes. On Tuesday there was nothing. Wednesday iit was in my arches. Thursday was only minor discomfort in my feet. Today, on Friday, again, it is only in my arches.

Maybe it is coming to an end. It started on August 1st and it is October 24th today.

We shall see.

[dexter]

City Girl, on Oct 24 2008, 12:35 PM, said:

I think I spoke too soon. Bizarrely, in the past week, my peripheral nerve regeneration feeling has become selectively eratic. Last Saturday and Sunday, it was only in my feet and the feeling was minor. On Monday it was only in the tips of my toes. On Tuesday there was nothing. Wednesday iit was in my arches. Thursday was only minor discomfort in my feet. Today, on Friday, again, it is only in my arches.

Maybe it is coming to an end. It started on August 1st and it is October 24th today.

We shall see.

Oh my gosh. Seeing this last post you just put up gave me some hope. This thing has been killing me for months now. Every single day that I wake up I'm scared and worried if it is going to be there today or if it is going to be gone. It drives me crazy. It feels like a very cold burning feeling to me. I don't know what to do.

Would you mind telling me what the difference is in medication that you have switched around and/or added?

Thanks for starting a good thread.

[City Girl]

I am very pleased to announce that my peripheral nerve regeneration has pretty much stopped now. I haven't had any pins & needles feelings in my feet or on the backs of my legs or in the inner circle of my bottom. I recently did an ice-cube test to see how much feeling has returned and it seems my feet, the backs of my calves and halfway up the backs of my thighs all have feeling. Feeling on the upper part of the back of my thighs and the inner circle of my bottom is restricted to pressure only, not texture (i.e., scatching) or temperature. I can feel my bladder when it's full but it's hit and miss with my bowels. Notwithstanding, I have good muscle function in my anal sphinxter but my bladder function (regarding emptying) is weak. I don't really care, however. I'm just happy to be out of the pins and needles and pressure discomfort. So, calculating the time I had to endure this discomfort was from August 1st through to mid-November. That's 3 1/2 months. So I guess it does pass once the pathways have been retraced.

[Slowlegs]

City Girl, on Aug 25 2008, 09:23 PM, said:

Going nuts with peripheral nerve regeneration!!! Not necessarily in pain. Just going crazy with pins and needle and pressure in my feet as well as the backs of my legs and the inner circle of my bottom.

Saw my 'secondary' GP today...seeing my 'primary' takes a whole day off, yet seeing my 'secondary' takes a half day off...(don't get me started on Cdn medicare!).

Notwithstanding, MY SECONDARY GP has upped my amitriptyline prescription to 150 mg/day as per my discretion. I was originally on 25 mgs/day, taken at bedtime.

After complaining about my peripheral nerve regeneration to my physiatrist, she gave me double: 50 mg/day. After three weeks, I still saw no relief so I sought out a secondary opinion.


What do you think people??? (Last note: I'm a pretty tiny woman. 5'4" and only about 105 lbs. (Normally 110 lbs) I'm trying to gain weight but I burn so much working out and trying to walk. that I'm down about 5 lbs. Atrophy is also a big contributor. Body weight is a big issue with drugs and I'm a bit concerned.

Please share your thoughts. I want relief but not at the cost of other health issues...crazy drug ingestion.

Hi Citygirl.
My nerves were severed, not through the spinal column but through the pelvis. I was in a chair for a few years and during my year in hospital also went down to 120lbs (I am a 6'2" male and some of that weight was meccano) and was on a nerve drug called imipramine. Some of those drugs can take at least three weeks to show an effect. The nerve pains sound similar to mine. I also got hyper sensitive to touch. A fly on my foot would drive me insane. I don't want to give you false hope as symptoms vary amongst everyone. I am walking again though and have been for about 20 years. Not everything came back and most of my limp comes from muscle loss which they had to cut off because of gangrene and the rest comes from nerve damage and is a result of things not growing back completely. I used to have a saying, hope for the best but expect the worst. Keep doing what you are doing and working hard, hopefully you will achieve your goal. Good luck.
Slowlegs.