Horrible Chronic Nerve Pain

[BillyMeyer]

I'm a paraplegic who suffers from terrible nerve pain from about the navel down. My injury occurred about 3 1/2 years ago and this is also when my pain began. I take Baclofen to combat stiffness, Cymbalta, Neurontin and now Fentanyl patches all for pain. My doctor recently switched me from Morphine to the patches. None of this is helping me. I am absolutely miserable and running out of hope. My quality of life is nill. Does anybody have any ideas? Please help. Thank you so much.

[marycarmel]

I just want to point out that you've posted on a very old thread.  Those members are no longer active on this board.  There are people who are checking in here regularly, though, and I'm sure your experience can help others.  If you start a new thread on this, you'll get better responses.

[larry755]

i had 2 severe nerve problems 1 in my mouth from a mild effection thrush from taking some penicillan and one from an unecessay surgery that gave me severe nerve pain in my groin and scrotum believe it or not. the pain in mouth took 4 years to go away although sometimes i get some mild pain but not often if i smoke to much i know i should not smoke but way to much stress looking for work now. however the nerve pain i had in my groin and scrotum did not go away it basicallt left me a cripple for 2 years and then i found something called cryotherapy its were they freeze the effected nerve over and over again to weaken the amount of pain you are getting from the affected nervei had my genitial femoral nerve frozen 6 times and my pain subsided from 100% pain to arouns 10 % pain and it has remained that way for many years.i still get muscle tightness from the nerve problem sometimes but the freezings gave me my life back. for anyone who is having severe nerve pain i suggest you look into freezings if they know the nerve that is causing the pain.good luck

[larry755]

i had 2 severe nerve problems 1 in my mouth from a mild effection thrush from taking some penicillan and one from an unecessay surgery that gave me severe nerve pain in my groin and scrotum believe it or not. the pain in mouth took 4 years to go away although sometimes i get some mild pain but not often if i smoke to much i know i should not smoke but way to much stress looking for work now. however the nerve pain i had in my groin and scrotum did not go away it basicallt left me a cripple for 2 years and then i found something called cryotherapy its were they freeze the effected nerve over and over again to weaken the amount of pain you are getting from the affected nervei had my genitial femoral nerve frozen 6 times and my pain subsided from 100% pain to arouns 10 % pain and it has remained that way for many years.i still get muscle tightness from the nerve problem sometimes but the freezings gave me my life back. for anyone who is having severe nerve pain i suggest you look into freezings if they know the nerve that is causing the pain.good luck

[pmartin1664]

Hey Bill,

I'm so glad you seem in better spirits of kind. You had us really worried there!  I know what that feeling of, " pain exhaustion" gets like. It's a hopeless feeling. Plain and simple. Wish you could push a button, turn back the hands of time. Man, the things we would change, or better yet, never do!  Life, however, has a different force in effect. It's called, "deal with it". I hated to come to that realization, but ya know what, tommorrow does come. What form it takes is SOLEY up to us. We are in control. Drive it what way you may, just know, you can drive right off into the sunset, or drive to all the beautiful places, afforded to us by our brothers and sisters of yesteryear. Seems to me, you are a driver of skill, and so because of that, you need to stop and smell the roses. These spots tell us, "you know what, it's gonna be OK." Because that's what YOU decided. NO ONE ELSE can command that for you. I've learned to except my liabilites, my limitations. It's still hard some days, but man, I often think of what that dude that became a quadrapalegic, thinks...!!!  We just have to count our blessings, Billy. Cause it could be so much worse!  So much!
As to your Oxy question. I have found that, if I had to take only one pain medication, I would pick Fentanyl. No pill popping, and it works to a managable level. The Oxy IR works well for that, break through pain. It does work well, but I assure you, if you had only Oxy to take, for your pain, then it plain and simple, would not work nearly as well as it does for your, spike pain eruptions. The reason it seems to work so well is the fact that we don't take it on an hourly basis, or our bodies would most certainly turn it's effect, onto a lower level as the days past. And as for you and me, this is now, a life long process. We are in no rush to have something this important stamped, ineffective anymore!!!
Know that should the need ever present inself that you need some advice or just to shoot the breeze, we are here. I have found this site to add not only in imformation, but in wellness of mind, as well. Reach out, there is always someone close enough to grab onto!  Take care, Pierre

[Tuckamore]

Hi Billy,

Welcome to our Pain Mangement Forum. I am glad that you found us and took the time to post but sorry to hear that you are having pain issues in addition to being a paraplegic. You have gotten some great suggestions here from our members.

I too think a pain therapist or any good therapist may aid you in your pain releif.

Please don't confuse addiction with dependancy. There are two totally different animals. Everyone that requires a narcotic to control their pain develops a physical dependancy on the drug(s). That does not make them an addict. Less than 4% of chronic pain patients become addicts. It is a fact that your body does not know the difference and when you cease taking an opiate your body will go through withdrawal.  But again that does not make you an addict. So don't be so hard on yourself. Ppl with true chronic pain are generally not addicts.

I hope you will stay active in our community and that we can find solutions together. We'll look forward to hearing from you often.

Take Care,
~Tuck

[Sarajmt]

Hi Billy:  I am really sorry you're in such pain.  One thing that helped me was a pain therapist.  They can teach you to relax and help adjusting to the world of chronic pain.  Have you ever seen one?  If not, you might want to consider it.

I hope you're able to get in to the doctor soon.  I understand hurting too badly to move and I hope it's better soon.
Sara

[DaveG77]

No, I don't mind the addiction.

I am horribly addicted to Lyrica, had the worst WD of my life from that stuff and I don't even think it helps me but I'm stuck on it for life. Now Methadone has greatly helped reduce my pain so I don't mind being addicted as I plan to stay on it for life. Oxycodone has also greatly helped me as a break through pain med.

I have gone through WD so many times from so many different meds. Nearly all of em I get addicted to. Nothing was worse than trying to quit Lyrica including H.

Dave
SCI C5/C6

[BillyMeyer]

Hey everybody,

I really want to thank all of you for your concern and support. Your all just really great. I appreciate all of the advice. Ironically I had an appointment scheduled with my pain doctor today but I was in too much pain to get off the couch and go to see her. Bummer right?

Hey for what its worth when I listed the meds that I'm on I forgot to mention that I also take Norco / Hydrocodo. I drop a couple of them 4x a day and they seem to work the best for the pain spikes so long as everything else that I take are doing their jobs as well. As it is right now, life would be much worse without the Hydrocodo. Just thought I should throw that out there.

So Dave, Methadone huhn? Thats pretty scary. Are you afraid of the addiction issue? I've been told that the day that we received our injuries we kind of automatically signed up to become drug addicts of some sort. Ha! I know that I'd rather deal with some sort of addiction than have to survive with this ungodly pain. So be it I guess.

PMartin you mentioned the 4 tabs of Oxy. Do you think that is the main ingredient in your Bromptons Cocktail that supresses your pain?

To those of you who have said that they've got their pain problems contained, CONGRATULATIONS!!! I'm happy for you. I'm really looking forward to joining your club someday.

Thanks again everyone.

[DaveG77]

Billy,

I am a quadriplegic of 12 years, after about 5 years of being paralyzed I started to develop neuropathic pain (nerve pain) as well as muscle spasms. It wasn't bad at first but has increased immensely since. I have tried many different combos of drugs but have found the best relief with Methadone 15mg x3, Oxycodone 10mg x4, Lyrica 75 x3, and Topamax 50mg x3. I have also had a baclofen pump inplanted for the spasms.

Dave
SCI C5/C6

[Sarajmt]

You've gotten some good advice.  Go back to your doctor.  You're so young to have to live in this much pain.  I'm sure your doctor can figure out what to give you and a good level to keep you out of pain.  

Good luck to you.  Please let us know how you're doing.

[jamlws]

Sorry your meds aren't helping. I would be talking to your dr about this cause when your in pain like most of us, it is so hard just to live your life and it just don't seem fair to have to suffer like this. Maybe you need higher doses, so a good talk with your dr about how the meds aren't helping and what more can be done. . I hope you are able to get your meds straightened out so you can live your life.
Good luck to you,
Jamie

[pmartin1664]

So sorry to hear of the level of discomfort you are enduring!! I am presently on 150mcg of Fentanyl every 2 days. I don't know how much you are taking and how often, but your Doctor should without question be gaging your pain level as he must need to increase your dose and application periods. I have taken about all the pain meds out there, and I can say that without question, Fentanyl has worked the best. However, it is imperative that the dose and sequence of applying them found. There is much caution that need's to be adhered to at the begining of using this drug. It does hold a high level of deaths by overdose. Problem with F is that because it is absorbed in the blood, by way of the skin patch, folks get impatient and slap a couplke more on, way before it's called for. Then they perhaps take a hot shower, heating pad or the like, and by doing this, send a super high level into the blood stream, thus causing Cardiac Arrest. Depression is another reason doctors will sometimes start their patients on a lower dose. This is a super powerful pain killer. If you have been on it for a week or better and it is not effective, or even close, then Bill, you need to have a heart to heart with your doctor. Let him know it's just not containing any of your pain. Like I said earlier, i am on 150 mcg, plus 4 tabs of Oxy IR, Flexeril, Gabapentin and Cymbalta. My pain is contained, I would say most days at about 40-50% on bad days and 70-75% on the good. If I can be of any other help, let me know. By the way, i type right along and rarly proofread, so please excuse any spell or wacky assembled sentences. Best to you and yours