Frustrated with Research

[mike]

Since my injury, I have gone from having no pain to horrible burning in both legs. Because of edema in my ankles I am forced to wear compression stockings which makes the allodynia I have much worse. Before I started developing the allodynia and edema I was walking almost normally. Now I have problems just walking a few feet.

I take gabapentin, and have tried Lyrica and just about all of the other drugs out there, with no significant relief. It is frankly very frustrating to see my quality of life getting worse by the day while seeing no new drugs coming out or even being developed, based on what I have read, that directly target this condition. I am sometimes upset that I don't have a more fashionable desease such as diabetes or high blood pressures that the drug companies will attack as it will give them a bigger buying base.

Don't mean to complain, but this condition is beginning to seem hopeless.

[firesmurf]

yea,it sure does suck mike believe me,i do feel for ya.i am just ondering,have they ever tried any sort of actual diuretic to relieve the edema or is the edema just part of your condition/by that I mean,like with the RSD I have,swelling just comes with the territory,it is just always there and is the only area in me that has even any swelling at all.

suprisingly,the only thing that has even touched this form of swelling was when I actually started the lyrica a couple of weeks ago.i really was shocked as I had had this swelling in my knee for over two and half years,since the RSD was actually DXed shortly after my spinal cord was injured and my SNS too,which is what actually triggered the RSD in my knee down thru my foot.after just two doses of the lyrica,i was just stunned to wake up that morning of day three with about half of my normal swelling just gone.it has not gone past that point but i just couldn't believe that the lytica actually did this,and only after two freakin doses??what other meds do you take besides the neurontin and what is your current neurontin dose per day?and how long have you actually been on it?

I am really suprised that you can even get the TEDS on over your legs with that severe type of burning and the allodynia goin on.i couldn't even handle that when I had two surgeries done recently on my RSD knee.there was just no way in hell that was going to happen,no way.i just screamed when the two nurses tried to "gently" slide those suckers up the leg.owie.bad owie.

do your docs know just what started causing the allodynia and most importantly,the swelling??have you been Dxed with any actual condition or one of the lovely "syndromes" that seem to keep popping up from the secondary spinal cord injury crap?do you have any other symptoms at all going on with this stuff in your legs?any color changes or strange skin stuff(anything wierd going on with the skin or the nails,i mean anything at all that you did not ever have before your SCI?)

Have you had any recent bloodwork done to make sure this swelling isn't stemming from some sort of a metabolic disorder??how are your BPs normally?just tryin to cover all the bases here.i would think that unless the swelling is really a severe problem that given the fact that it is actually increasing your pain levels,you may be able to get by without using the TEDS?I just couldn't even imagine how much my pain levels would really go to if I had to wear those everyday.if they are not truely vital for you,well just lying and sleeping with your legs elevated like I do whenever i am in any sort of a lying or even sitting position would help at least some?along with using a diuretic?just some thoughts.

are you currently seeing a real pain management doc for your pain process?if not,try using one as they have so many different modalities to offer us pain patients that no other type of docs can really offer us.They are also very highly knowledgeable in treating the more bizarre types of pain sydromes.my pain doc was truely a lifeaver and was able to get me some decent quality of life at least as much as is possible for me at this point in time anyways and that is really a huge thing for me.

just some suggestions incase you haven't tried this stuff yet.

by the way,just what caused your SCI or your severe pain process to trigger?

i do hope things get better for you soon.ya just have to keep on keepin on and don't lose hope that at some point in time,there may be some relief for all of us.there really IS at least more research going on within the past couple of years now compared to before.newer meds are coming out that are being more geared to treat the worst types of pain,the neuropathic hell that we all live in.the word is finally getting out that since there are actually like 54 million americans out here all living with some form of chronic pain,that hey ya think maybe some more in depth research and funds should go into finding ways to help us?

I try to think positive most of the time,but man is that ever hard some days,ya know?I do hope things get better soon mike,and see about not using those TEDS anymore,gosh I just don't know how you are able to actually withstand that,wow.take care,Marcia

[mike]

Marcia, thanks for the kind words and suggestions.

My edema started after I began taking Gabapentin and got worse as my dose was increased(now 2100mg daily) and my weight increased( I gained 50lbs after my accident). Even though Pfizer has not shown it on their adverse reaction list, others on this forum have also had edema problems with gabapentin.

I have had blood work and other exams to rule out any other causes for the edema. Since I can walk and get around, my circulation is generally pretty good so that should not be causing the problem.

I have been to pain clinics and doctors and have been disappointed with the results. Once you go through the list of drugs available, primarily anti seizure drugs, there really isn't much else available. I had gotten some relief from elavil but it created problems with my neurogenic bladder.

I tried Lyrica and did not get any great pain relief. I never thought to check to see if taking it in lieu of gabapentin might reduce the edema. I will give it another try if I can find a way to afford it.

Seemingly the research on CP is primarily focused on drugs to help with diabetic neuropathies. I believe that Lyrica falls into that category.

Again, thanks for your thoughts as it is nice having a forum like this to discuss these kind of problems with.
Mike

[alan]

Quality of life? What's that?

Sorry you're having so much trouble, Mike. If you taper off the Gabapentin, maybe the edema will go away (I had that problem with Trileptal, and my legs went back to their normal size after I got off it.)

[firesmurf]

Geez mike,Alan is right,why in the heck are you still taking something that is actually causing you edema?how many of the other options have you actually tried(anti siezure stuff?)there just HAS to be something out there that works better than the neurontin without that particular side effect.having that edema is just not good for your circulation and can cause other problems down the road if it is left just to run amuck,ya know?

I know not all pain clinics are some of the best availiable.there are some whos only real mission is to try and get you off narcotics and to "live with your pain" yea,right.have you tried more than one clinic?

you didn't mention if you are actually taking any other meds?there just has to be a better option for you than to continue on with the neurontin,espescially since it(from what you stated) does not appear to even be working for you??

I am wondering if you are kind of to the point where your just sick and tired of the run around and the trying and failing part of treating all of what you are having to endure so you are kind of just 'living with it all"?are you kind of at that point in your mind?believe me,I know how that feels too,and i think the majority of us have felt this way at some point while going thru this ongoing nightmare called our lives.its just that I am getting the impression that you are tired of this and just merely 'settling'?or just decided to "live with it"?

do you feel that maybe you are also suffering from some form of depression here as well?it is actually rather normal for us considering that our lives changed dramatically from the day our spinal cords were injured and thats a huge part of my depression. i just think that you need to try and see if there are other much better options for you other than just staying with the neurontin when it is causing you this type of side effect and forcing you to wear those TEDS which you stated yourself,.are actually increasing your pain levels.this just seems a bit strange to me that you would stay on this thats all.you do deserve better for yourself,really mike.you DO have other options you just need to motivate yourself into seeking them out.this is of course just all strictly my opinion,but I am just getting an impression of this whole picture and think you are truely suffering much more emotionally at times than you are physically.if you are indeed feeling any actual depression here mike,getting that treated alone would help your total outlook on things alot.

I do agree to a point with your statement about the diabetes being the motivator for the reseach on those new meds,but the thing is,we can benefit from it all ya know?i know they are doing pain studies at places like the u of m and the mayo,and they seem to really be getting much more in depth with using certain insects and things from nature that appear to have painkilling properties.they ARE researching this mike,but like everything else,are probably short on funds.

if you go to the american pain foundation site,you can read tons of info there about new research and all of the legislating going on in trying to improve the lives of people in pain.i love getting my newsletter every month only because it keeps me focused and gives me hope that there are people out there who are really trying to help us .

you can also get involved in that if you are feeling up to it,maybe if you did,you wouldn't be feeling quite so totally overwhelmed by all of this and it WILL give you a much more positive outlook on things knowing you are part of the group of people who are at the core who are really involved in trying to make positive changes for people like us.just a thought.feeling helpless just sucks.their url is www.painfoundation.org just pop onto that site mike and start doing some reading about all that this foundation is really doing to help further the research and the tons of things they are doing from a legislative standpoint.they have helped change laws for us mike,and thats a big thing.I just think ifyou go to this site and actually read thu all of the new and the older newsletters well it will at the very least,make you feel a bit more hopeful,you know what I mean?i know it really does help me,so I am figuring that it may do the same for you.just a suggestion for you.

I do hope you at least give some other meds a try and finally get off the neurontin for good.honestly mike,from what you have stated here,that drug is doing you alot more harm than good right now.also talk with your doc regarding the possible depression you may be suffering from.like i said,this would be perfectly normal given the situation you are living with.getting onto lexapro and seeing my therepist whenever I feel like i am going over that edge yet again really really helps me to try and keep it all together some days ya know?

I DO really hope that a new med will help you much better than the one you are taking now.and make sure to at least pop onto that site I mentioned I think you will be glad you did once you start reading thru some of the articles and see for yourself that things are going on out there behind the scenes that we just don't always know about.there ARE people out there mike who really DO care about our pain and our suffering,and ARE making many positive changes and taking steps to try and help us it just isn't always as well publicized as other things.Hang in there mike,Marcia

[mike]

Thanks Marcia and Alan.
I would like to do away with the Gabapentin, however without it the burning in my legs gets worse even when I am not wearing compression hose. When I try sleeping at night and I wake up with pain, the Gabapentin is somewhat able to calm it down. Unfortunately that is the problem with any of these drugs is that they all have downsides. Other anti seizure drugs prescribed by my physiatrist have not been as effective as Gabapentin. Perhaps I should give Lyrica another chance to see if it helps with the edema, although that is about $300 per month for the dosage my doctor originally prescribed. I develop CP just thinking about the price.

I have been to pain clinics including the one at the Mayo Clinic. I think I was the only one that participated who had Central Pain. Therapy focused on biofeedback, relaxation, and other such methods. Most people taking drugs were on Narcotics which as you know are not very useful for CP.

I appreciated your reference to the Painfoundation website. It appears interesting and worth subscribing to.

As far as depression is concerned, I believe that everyone on this forum suffers from this condition as it is impossible to have SCI without being depressed. Each time I have gone on antidepressants I either had bladder problems or walked around sleepy all the time from a combination of these drugs and the ones that I am taking. As I tell my wife all the time, most types of depression are chemically induced by the brain and are helped by antidepressants. With situational depression, such as hoping to not wake up each morning because you realize the pain will be worse then the day before, antidepressants are not as helpful.

In any case I thank you for your suggestions and I will give them a try.

Mike

[David Berg]

It is frankly very frustrating to see my quality of life getting worse by the day while seeing no new drugs coming out or even being developed, based on what I have read, that directly target this condition. I am sometimes upset that I don't have a more fashionable desease such as diabetes or high blood pressures that the drug companies will attack as it will give them a bigger buying base.

Don't mean to complain, but this condition is beginning to seem hopeless.
I understand your frustration, at least as well as someone can who isnt afflicted with this pain. I hear from plenty of people on a regular basis who a desperate for a solution. There is other research being done. Unfortunately, you do have a point that the more "fashionable" conditions seem to get the lions share of the money. For one example of a treatment that has some real promise, do a search here and on the web on resiniferatoxin (RTX). It's been around for quite awhile, but research at the NIH has found a way to use it to treat neuro pain that's simply amazing...a single treatment was effective and permanent by selectively targeting c-fibers. It just took away the pain and left touch and temperature sensations intact. This treatment has been used successful in animal tests. The frustrating part is the budget for this program is causing delays, to the extent they're having trouble getting even basic lab supplies. I even once posted a way I tracked down on how to make private donations to this particular research.

That's just one line of research. For other examples keep an eye on the Neuropathic Pain research forum here. Wise does an excellent job of updating it with abstracts from the medical literature.

[mike]

I read about this promising treatment before. I contacted Michael J. Iadarola office and was told that they were no where near human trials. I would also recommend as you did earlier to contribute to this research as it does hold great promise for help with this condition. Attached is the thread that you referred to: http://sci.rutgers.edu/forum/showthread.php?p=329168#post329168.

The problem for me is that I am 68yrs old, so the likelihood for a cure or significant help for me in my lifetime appears to be nil.

[firesmurf]

Ya know,if i ever actually win the powerball lottery,i know EXACTLY where the money is going to go.this just really sucks.it appears that anything and everything always comes down to the almighty buck.sad but true.Marcia

[David Berg]

I'm at work so I only have a second to dig into this, but I decided to do a quick search at the NIH site to see if there's any more recent word on progress. I came across one page dated this year on the subject, but the direct link was dead, so I had to view the cached version. I'm not sure what it means that the original version is gone, but I'm hoping it's a temporary flub with the webpage and not bad news. Anyway, if what this says holds true, then human trials might finally be ready to move forward soon. at least for terminal cancer patients at first.

http://search2.google.cit.nih.gov/search?q=cache:JbH8jSeO_z8J:www.nih.gov/catalyst/2006/06.05.01/page4.html+resiniferatoxin&access=p&output=xml_no_dtd&site=NIH_Master&ie=UTF-8&client=NIH_frontend&oe=UTF-8&proxystylesheet=NIH_frontend

Sorry about the long URL. If anyone has trouble accessing it, I'll try something else later.

[mike]

It is encouraging to read about this work. Hopefully Iadarola will get the funding needed to expand the human trials to include those with SCI. As I said earlier, funding goes to fashionable deseases such as cancer which apparently is where the initial human trials will be done. If these trials are successful, perhaps in another ten years the trials will include folks with SCI as well.

Unfortunately with Christopher Reeves gone, we no longer have a well known personality to speak on our behalf. Perhaps if we write in we can get someone on Sixty Minutes or Dateline to do a story on this. I'll bet that one of their reporters could go to the VA hospital and find literally dozens of GIs back from Iraq with SCI and are in significant pain.

[paintrials]

Hi Mike, I promise that we are working very hard to treat this very type of pain. We'll have a new study ready to go starting in the spring on 2007. I know it seems like that is far away, but we are doing our best to get new trials up and running.

Kate Jenkins
Translational Pain Research
617-525-PAIN
www.paintrials.org
paintrials@partners.org

[mike]

Thanks Kate, I know your group is working hard on coming up with a treatment for this condition. Unfortunately it takes a lot of time and money to test new drugs and get approval. Hopefully it will occur in my lifetime.