19 replies to this topic

[cubanito_016]

I am T5 complete para and Ive been having so much pain from level t5 down my stomach my feets Everything under T5 hurts but more my stomach.Please does enybody have pain and if you do what do you do to deal with it?.I takea lyrica 300mg 2 times a day and it help so little but I dont know what to do.Please someone give me an advice.I see many paraplegic that are perfect and have no pain and I feel alone in this.So please give me an advice thankyou.

[mjtpopus]

I know how you feel. I'm a t6-7 complete but I have constant back pain and I have a burning/throbbing sensation at all times in my legs. I don't take anything for the pain anymore because the things I took in the past always made me feel loopy and I couldn't do my job as effectively as I needed to. It's not ideal but I've learned to ignore the pain by focusing on other things and being active. Downtime is when it registers and get grumpy and irratible. Of course, some days are worse than others but for the most part I just deal with it. This probably isn't very helpful, and I'm sorry for that, but it's just the solution by which I manage my pain.

Tom

[edlee]

You're not alone. Mine has gotten progressively worse, and taking lyrica or gabapentin doesn't do much more than take the edge off. I refuse to take opoids,,, so far,, and try to do as mjtpopus has mentioned,,, the "tough it out routine",,, it works for a while, but like he said,, it's the down time,, when you try to relax, that it grabs you again.

I recently tried a pain clinic,, they started off giving me an epidural ( that's a shot between the disks) using a coticosteroid.

It's been two weeks, now,,,, nada....

I go back to see them this coming week, so I'll see what else they might have up their sleeve. Sure would be a relief if they could find somethig that worked.

Hang in there cubanito,,, find a way to stay busy,,, it really does help.
ed

[araitn]

Yeah, you're not alone. My pain is always there in one form or another.

Like edlee, I've tried all of the meds and none have worked. I've actually given Lyrica another try for the last few months and I can't tell any difference in the pain, so I'm slowly taking myself off. I'm at 75mg x 3 right now and getting ready to step down to 75 x 2 tomorrow. Can't tell any difference from when I was taking 450mg per day.

Unlike edlee, I gave in and tried the opiates for a few months. They didn't relieve any of the pain and made me an idiot, so I took myself off slowly only to realize that I had a physical dependence and went through some bad withdrawals.

If I keep my mind occupied, I can keep the constant pain in the background; however, it's the intense, shooting, electrical pain that gets the best of me and puts me in the bed until it goes away. This usually requires a good nights sleep before it seems to reset and return to the "normal" everyday pain.

It seems if I stay active then the pain is not as bad. But, there is a fine line to be kept. If I'm too active then I pay for it later with the more intense pain. I've found my best routine to keep the stabbing pain at bay is to be up and active for two or three hours and then lay down for about thirty minutes to an hour and repeat this process throughout the day.

Here's hoping that they'll come out with a SCI pain killing, wonder drug tomorrow!!!

On the bright side, I generally keep a positive attitude and keep sight on the other things that I've been blessed with in my life.

I hope you can find some relief, somehow, Cubanito.

[edlee]

Hurts like hell,,, but I still got up at 3:15 yesterday, to go turkey hunting. Actually called one in, myself,,,, first time for that.

If it were a pain that worsened when I moved,,, maybe I wouldn't move???? But the way it is, with no "rhyme or reason" to it's severity,,, I just try to live with it,,, and appreciate the things I can find to take my mind off it.

I think that might be something you need to try... Even getting a job isn't just for the money,,,,, it's something to do. Maybe volunteering,,, if you are into what you volunteer for.

I guess the biggest thing we all have to do is get on with it,,,,, life , I mean. Go do something,, if you end up enjoying it, life looks just a little brighter,, no matter what else is happening.

AB or SCI,,, stringing together the "bright spots" are what make life worth the effort.
ed

[ramblin_usa]

A antidepresent such as valium or zanax will help your mood and they also can relieve pain.refer to www.webmd.com/pain-management/guide/pain-relievers

Edited by ramblin_usa, 15 May 2009 - 09:38 PM.

[emarie]

I take Lyrica and Baclofen twice daily but no other meds since I haven't found any relief from them. I find that keeping my mind busy helps the most - falling into work or a good book works well for me. But at night, when it's time for bed, I take an Ambien so I can sleep. Otherwise the pain is too bad to even pull the sheets up over my legs. You are definately no alone! You might try a relaxant if you're doctor will give you an Rx for one - in the hospital, my doctor gave me Ativan or Valium. Now I have an Rx for Percoset if I need it but I find it relatively useless.

[T-Crip]

I have talked to and heard from so many SCI patients that suffer with pain in some form or another. I have dealt with the "shocking" pains for 2 1/2 years now. Being a nurse, I don't reccomend going straight to the injections. There are tons of medicatons that they can try for you. You will just have to make sure to find yourself a GOOD pain management doc! I am so very thankful that I did! My pains were absolutley intolerable! By the end of the day I was BEGGING to go to bed just to be rid of the pain! At that time, I would be so wore out and in tears from dealing with the pain all day, I would just pass out! Lyrica and Neurontin (or Gabapentin) are meant for "nerve" pain...the shocking and/or burning pain. MY pain get's worse the more I do. But, obviously, staying in bed is NOT an option. So, for me, trying to do stuff to take my mind off of it was not an option either. I am on just about max dose of Gabapentin, Percocet 10's now, and a patch (Duragesic or Fentanyl). All of that was getting me under better control but I still was wore out at the end of a "normal" day. And, of course, being on all those medications makes me tired too. They just put in a neurostimulator for me because I have such a high level of pain. Also, I tried the newest anti-depressant that also has pain management properties called Cymbalta. It helped but the side effects were intollerable. The moral of this long winded story is that you need to find what works for YOU! None of us can feel your pain to be able to tell you what is best for YOU! Get yourself a GOOD doc, maybe one reccomended by some other SCI's in your area, and do what works for you! Good luck!

[T-Crip]

edlee, on May 13 2009, 01:21 PM, said:

You're not alone. Mine has gotten progressively worse, and taking lyrica or gabapentin doesn't do much more than take the edge off. I refuse to take opoids,,, so far,, and try to do as mjtpopus has mentioned,,, the "tough it out routine",,, it works for a while, but like he said,, it's the down time,, when you try to relax, that it grabs you again.

I recently tried a pain clinic,, they started off giving me an epidural ( that's a shot between the disks) using a coticosteroid.

It's been two weeks, now,,,, nada....

I go back to see them this coming week, so I'll see what else they might have up their sleeve. Sure would be a relief if they could find somethig that worked.

Hang in there cubanito,,, find a way to stay busy,,, it really does help.
ed

Ugh! What pain clinic did you go to that went STRAIGHT to the injection! That's a big no-no as far as the doc goes! Why did they go straight to that and not try you on meds? How much Gabapentin were you on? I don't think injections work because most of us have a syrinx (cyst) caused by the injury and that irritates the nerves or puts pressure on them so to speak so that's why an injection won't work. It's not the right "medicine" for the right "ailment" so to speak.

[edlee]

Hi tcrip,,I appreciate your post.

I am presently taking 800mg of gabapentin, three times a day. I have been prescibed Lyrica, heavy (600mg 3/day) to take in congunction with the gaba, four different anti-depressives (one at a time, of course) the names of which I would have to check my records for,,, none of which did more for me than the gaba alone.

I have, till now, opted against opiates, deciding to try the epidural, and the soon to be, nerve block (monday), before going with surgery or more potent pain killers.

I was wondering, what tests would tell me I had a syrinx,,, other than the xrays, cat scans, and mris that I've had in the last year or so? And if I do have one, what course of treatment would likely give me relief, short of it's removal?

As for why I chose this path,, it was the two doctors who recommended both the procedure and the doctor who is doing it.

I'm resigned to the fact that this may be an ongoing quest, and am trying to take the steps toward my goal in as logical a way as I can,, using both the opinions of doctors I trust and whatever information I can glean from other sources,,, this forum in particular.

I find your experiences and your opinions of great help. I thank you for them.

ed

[CrazyLucky]

Hello Everyone,

I'm new to this community and am very thankful for all of your information and guidance. This topic is a timely one for me as I had to travel emergently for work and was not able to get home to pick up my lyrica before I had to catch a flight. after 48 hours I'm in a super pissy mood and feel like my body is being taken over from the inside out! Lesson learned always carry an extra supply in my truck! But getting on this site always makes me feel better. Thanks.

For the 1st year and a half of my injury I was controlling the pain with prescribed narcotics and a certain, shall we say "herbal" remedy if I could get my hands on it. Recently I was placed on Lyrica and it has helped tremendously with little to no side effects. However, after being on the medication for a couple of months, it seems like I may need to have the dossage upped (has anyone else experienced this need for an increase with Lyrica?). I am hoping to be able to stay on Lyrica and avoid the narcs if at all posible. I'm not sure how taboo the topic is on this site, but a little herb on the bad days has provided me with a lot of relief. I also find it chills out my brain so my injury can be a bit more forgetable. Sadly, my state is not Northern California, so it comes along too few and far between (can they change those laws already??). I haven't tried cymbalta yet, but my doc mentioned it. Any experiences??

I also echo T-Crip's comments. I am a registered nurse as well, and there have been many, many advacnements in pain management. Ask your primary doctor about hooking up with an anethesiologist who specializes in pain management. They will likely try a combination of medications to assist with pain. This route can have very distinct advantages. I have read of many who are nrevous about narcotics, and rightfully so. However, pain managment docs can use medications including narcotics in combinations, so the dosages may be low enough that the side effects can be minimized. It is my understanding that these practitioners have the goal of removing pain in order to allow the patient to live a functional life. This idea is much different than the common practice of just trying to remove the pain.

Outside of meds, I have also found attempting things outside of what people may expect from me after my injury has been very gratifying. I can't run anymore (I know, whoa is me...I'm still pretty luck I've returned to walking), so I got on a bike and started riding. I feel like my parts of my body are extremenly tight and range of motion is limited, so I started doing yoga. I am trying to find some kind of co-existance with my new physical self, but I also find that kicking back at the pain and the injury is very satisfying...there's a sense of control where I normally feel like I have none. When I stop doing those things, I tend to get very irritable and feel sorry for myself and am generally miserable to be around (just ask my wife!).

Oh, and occasionally I'll also go out in the middle of the woods and scream at the top of my lungs as well...that seems to help, too:) Good luck to you. Any feedback is welcome and appreciated.

[T-Crip]

edlee, on Jun 6 2009, 04:24 PM, said:

Hi tcrip,,I appreciate your post.

I am presently taking 800mg of gabapentin, three times a day. I have been prescibed Lyrica, heavy (600mg 3/day) to take in congunction with the gaba, four different anti-depressives (one at a time, of course) the names of which I would have to check my records for,,, none of which did more for me than the gaba alone.

I have, till now, opted against opiates, deciding to try the epidural, and the soon to be, nerve block (monday), before going with surgery or more potent pain killers.

I was wondering, what tests would tell me I had a syrinx,,, other than the xrays, cat scans, and mris that I've had in the last year or so? And if I do have one, what course of treatment would likely give me relief, short of it's removal?

As for why I chose this path,, it was the two doctors who recommended both the procedure and the doctor who is doing it.

I'm resigned to the fact that this may be an ongoing quest, and am trying to take the steps toward my goal in as logical a way as I can,, using both the opinions of doctors I trust and whatever information I can glean from other sources,,, this forum in particular.

I find your experiences and your opinions of great help. I thank you for them.

ed

First of all, I am so very happy that I could help! And I have found this forum to be of great help to me also!

Max dose for gaba is 3600mg a day so you still have a little ways to go with that. But, I have never heard of a doc prescribing both Lyrica AND gaba. That's kind of a no-no because they are both the same type of medication. As far as I know, and I could be worng, but I think that the only antidepressant that is supposed to help with pain is the Cymbalta. I'm not sure if that's correct but I'm pretty sure. I too didn't have much more relief with the Cymbalta and the side effects for me were more than it was worth. Why have you avoided narcotics or opiates? I agree with CrazyLucky about the pain management doc and the meds but I'm not sure why you have avoided them.

A syrinx WOULD show up on an MRI. It also has a really long name that I don't remember. Go on line and look it up. I know it can be hard to see with the harware which I'm sure you have as well. I highly reccomend that you take your MRI's and get a second opinion. I'm not sure if a nerve block is going to help because of the nature of our injury. Maybe see if there is anyone on here that has had one with success? I would just hate for you to waste your time and money if it's not nescessary. When the first pain management doc I was going to suggested that, I began looking for a new doctor. From what I have read about the syrinx, they don't do surgery on it because it's too risky (it's a cyst that is IN the spinal cord) unless you have less sensation or movement that you DID have. What surgery are they reccomending?

I understand where you're at. I just knew there had to be a reason other than what the docs were saying which was "Oh well! That's just the way it goes with SCI's!". Don't give up. I have heard of so many patients that have gone to a doctor for so long only to find out that they were not being treated correctly. My sister used to live in PA and now lives in Jersey but she told me that the doctor that treated Christopher Reeves was in Pa I think. It's the Kennedy Krieger Institute, Dr. John W. McDonald. It may even be good just to give them a call if they aren't close to you and see if they can reccomend someone in your area. I just really feel strongly that it would be helpful for you to at the very least, to get a second opinion. Good luck and keep me posted!

[Trinity]

T-Crip, on Jun 7 2009, 06:20 PM, said:

As far as I know, and I could be worng, but I think that the only antidepressant that is supposed to help with pain is the Cymbalta. I'm not sure if that's correct but I'm pretty sure.
A syrinx WOULD show up on an MRI. It also has a really long name that I don't remember.

Amitryptiline and nortryptiline are both antidepressants now used mainly for nerve pain and pretty effectively too, especially in conjunction with pregabalin or gabapentin. As long as the foggy head doesn't bother you too much (usually taken at night)

The other name for a syrinx is syringomyelia, I was always lead to believe that it was a pretty rare complication after sci.

[edlee]

Sorry,,, I seem to have omitted a bit from that last post about what I have been prescribed,,, the 6oomg in conjunction with the gaba was ibuprofen,,, the lyrica I used was separately and alone. I often edit my posts before submitting them and apparantly edited a bit too much.

The surgery I'm talking about is the one you already had, to implant the neurostimulater and it's probes/wires. There is also the one that uses laser or rf to destroy selected nerves, in order to relieve pains permanently,,, of course that means the nerves are destroyed permanently, too,, so you see my reluctance. This procedure has not yet been recommended to me, but upon research, I have found it to be a possible last resort, of sorts.

I, too, was surprised at your assertation of the large percentage of syrinxs and could find nothing on the net, nor from my subsequent conversation with my doctor, to make me believe it. I did ask him about it and was told that I did not fall into that group, whatever size it might be.

As for the reputation of my guy,, suffice it to say that the name Gil Brenes is likely known by yours, as he is highly sought as a lecturer on the subject of SCI. He, my GP, and two neuro surgeons have seen my records and all agree that no further "corrective' surgery is warranted,,, structurally.

We, meaning both my GP and Dr Brenes, discussed my options and together decided on the epidural and the nerve block as being the best first steps,, as long as I could tolerate the ongoing pain without opiates. I have learned to cope with a lot in my life,, the pain being only one of them.

Having seen all too many additive responses, both legal and otherwise,, in myself as well as within others,, I will not allow myself to start down that road till I have no other choices. Others may do as they like with no judgement from me,,, I require that of others as well.

Again, let me thank you for your answers. Whether I agree with them or not, they lead me to a better understanding of myself,, and that's all one can ask.
ed

[T-Crip]

edlee, on Jun 7 2009, 05:02 PM, said:

Sorry,,, I seem to have omitted a bit from that last post about what I have been prescribed,,, the 6oomg in conjunction with the gaba was ibuprofen,,, the lyrica I used was separately and alone. I often edit my posts before submitting them and apparantly edited a bit too much.

The surgery I'm talking about is the one you already had, to implant the neurostimulater and it's probes/wires. There is also the one that uses laser or rf to destroy selected nerves, in order to relieve pains permanently,,, of course that means the nerves are destroyed permanently, too,, so you see my reluctance. This procedure has not yet been recommended to me, but upon research, I have found it to be a possible last resort, of sorts.

I, too, was surprised at your assertation of the large percentage of syrinxs and could find nothing on the net, nor from my subsequent conversation with my doctor, to make me believe it. I did ask him about it and was told that I did not fall into that group, whatever size it might be.

As for the reputation of my guy,, suffice it to say that the name Gil Brenes is likely known by yours, as he is highly sought as a lecturer on the subject of SCI. He, my GP, and two neuro surgeons have seen my records and all agree that no further "corrective' surgery is warranted,,, structurally.

We, meaning both my GP and Dr Brenes, discussed my options and together decided on the epidural and the nerve block as being the best first steps,, as long as I could tolerate the ongoing pain without opiates. I have learned to cope with a lot in my life,, the pain being only one of them.

Having seen all too many additive responses, both legal and otherwise,, in myself as well as within others,, I will not allow myself to start down that road till I have no other choices. Others may do as they like with no judgement from me,,, I require that of others as well.

Again, let me thank you for your answers. Whether I agree with them or not, they lead me to a better understanding of myself,, and that's all one can ask.
ed

That's awesome! I am glad to hear that you DO have such good docs! They are definitely valuable!

I agree with you about the narcotics/opiates as far as the side effects and withdrawals. And I do agree that everyone has to make the best choice for them in any situation right? One thing that has happened to me that bugs the mess outta me, is people who don't know any better hear about the meds I'm on and automaticly assume I am addicted to pain killers. Just ignorance. I know what you are talking about. I worried about being addicted but I know, for me, there wasn't any other choice. My pain was so absolutley horrible that I couldn't live any other way. I am all too happy TO live another way! I don't LIKE taking all these medications! Thankfully, now that I have the meurostimulator in, I can begin the process of weening off of the meds. People who are addicted take them for the high mostly. I don't get a high thanks to my pain management doc. Ugh. I can't wait to try and live pain free AND med free!

I know how hard it is to live with the pain or even HAVE a life with the pain! So, I put it all out there for ya...my opinions that is! And of course they are just that! As far as the syrinx goes, on another post, someone said they read in a mobility magazine, that 20-30% of all SCI's have a tethered cord or syrinx. Not sure how accurate that is. I just have seen quite a few people on here talk about having those sooooo...

I think I have heard about that other surgery. I kinda felt the same way. It didn't sound too appealing to me to have the nerves severed. I am very happy I chose to do the neurostimulator. It's working really well for me. There are tons of adjustments they can do to it as I go along. The surgery itself was a bit rough but my brother helped me out until I was healed enough to move freely.

Not sure exactly what help I am or was but it was a good conversation at least! :o) I really sincerely wish you the very best of luck and I do hope they find something that works for you! Take good care!

[edlee]

Thank you, TCRIP,,, I'm glad yours is working well.

I am curious, if you don't mind telling me, about how they determine the site to place the leads for the ns. do they use probes from the outside, first, to find the right spot?

Like you, I would love to be pain free ( or even mostly pain free) with out drugs. I guess I'll start googling that now.
ed

[T-Crip]

edlee, on Jun 9 2009, 09:37 AM, said:

Thank you, TCRIP,,, I'm glad yours is working well.

I am curious, if you don't mind telling me, about how they determine the site to place the leads for the ns. do they use probes from the outside, first, to find the right spot?

Like you, I would love to be pain free ( or even mostly pain free) with out drugs. I guess I'll start googling that now.
ed

What they do here is put in the neurostimulator and run wires from your back to an outside battery pack for a trial for a week to see if it works. Then, if it does, they tunnel the wires on the inside and put in internal battery packs. They wake you up during surgery and ask you where you feel the simulation to see if the leads are in the right place in your spine. I was worried about them waking me up but it wasn't too bad. Unfortunately, I gave them a lot of problems during surgery and they had to wake me up several times. I'm the exception not the rule! It normally goes very smoothly! I am a problem child!! Oh well! They ended up having to put TWO leads in! They said they were scratching their heads with me because it should have went smoothly! I hope that helps you. Please feel free to ask me anything! I am now weening myself off of pain meds so I'm nervous about going through withdrawals and being in pain. But they all said they are here for me and to call anytime. Take care!

[edlee]

Sure hope it works for you, T.

Are you seeing,,, or feeling,,, anything different,,, did it decrease your pain? Do you notice the "tingle" from the leads?

I'm pretty nosy, I know,,, but I'm really interested in the whole thing. I'm guessing that the best info I can get is from someone who is going thru it,,,, so I guess you're it. Hope you don't mind.
ed

[Edtezky]

Hey guys, IF you having lots a pain you need to try different things. I been a T-10 para for 7 years and i deal with my pain many different ways.

1. First off make sure the wheelchair you are in fits you!. I made the switch from my old wheelchair that was NOT fitted for me. Once I bought and got into my new Wheelchair i felt a lot better.

2. If your spazims are really bad and baclofin is not helping. Try the baclofin pump. Go to your neurologist and ask them if they can perform a blacofin spinal tap trial on you. The first two years i was paralyzed I could barely get out of bed in the morning. That's how bad my spazims were. I had the balcofin pump now for 5 years and its the best thing I did since being in a wheelchair.

3. Work out and pressure relief. If you can Pressure relief. DO IT! Just doing 1 pressure relief every hour makes my back feel good. Also you need to work out. Staying healthy and keeping you muscles strong is the best way to stay out of pain. The stronger your muscles, the stronger you are, the less pain you have. Makes sense?

4. If need to take Advil/Motrin. Ib Provin (not sure how to spell it), is good for muscle aches and pains. I just take two a night so I can sleep though the night. We are all going to toss and turn. But the Advil helps me a lot.

So guys and girls. Stay healthy and eat right. Keep active!

[T-Crip]

edlee, on Jun 10 2009, 06:51 PM, said:

Sure hope it works for you, T.

Are you seeing,,, or feeling,,, anything different,,, did it decrease your pain? Do you notice the "tingle" from the leads?

I'm pretty nosy, I know,,, but I'm really interested in the whole thing. I'm guessing that the best info I can get is from someone who is going thru it,,,, so I guess you're it. Hope you don't mind.
ed

Ha ha! I don't think you are nosy at all! I agree! Asking someone that is going through something or been through it is a really good source of information so ask away! Anything!

Yes indeed I AM seeing and feeling a LOT different! My pain has gone down a LOT!! I am off of one med and decreasing the other. It takes time because obvioulsy I have to go off of the meds slowly (which my dork doctor didn't do with the first one and threw me into this HORRIBLE withdrawal reaction!! My brother saved the day!) and when I decrease, I have to make adjustments to my neurostimulator and have to meet with the guy who does that and set up an appointment and that takes time too. So it's a long process but well worth it!

You notice the tingle only for a few minutes at first or when you make adjustments and/or increase it but it's short lived and then you are only left with no pain! It's awesome! The surgery was pretty painful but that's all healed and it was well worth it! Any other questions, don't hesitate to ask!