It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Chronic Pain Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 06-18-2010, 01:02 PM   #1
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: NJ
Posts: 1,320
hessie28 HB Userhessie28 HB User
What's next when nothing helps the pain?

Hi All.

Haven't been around in a while. Wish it was because I was pain free. But, not the case. The pain has been the worst it has ever been. I am at the point where I wonder what is next. Currently I'm on the 50 mcg Fentanyl Patch, 20mg Oxycodone every 4 hours and Tramadol in between the Percocet. Nothing helps. In the beginning I would get some relief. Now nothing. Maybe it takes the edge off a little. The patch was increased to 75 mcg but there was no difference so the Dr. put it back to 50 mcg.

The Dr. is hesitant to give me stronger pain meds because he said in the end we will run out of pain meds. Now I can function with the pain level but barely.

Where do we go next. I'm 45. As I get older what happens? There has to be a better way. I think I have tried everything.

The pain is across my lower back, down the buttocks. Feels like bone pain but it is nerve pain the Dr. says. My leg feels like someone is twisting it off. pain in both legs and both feet. It is just constant. I know it is Failed Back Surgery Syndrome. I haven't been back to the surgeon. He would probably want to go back in. Not sure I could deal with that.

Thanks for listening to my pity party. Hope everyone is feeling less and less pain everyday.

 
The following user gives a hug of support to hessie28:
mgm55 (03-28-2011)
Old 06-18-2010, 06:47 PM   #2
Senior Veteran
(female)
 
BB07's Avatar
 
Join Date: Feb 2010
Location: Lower Alabama
Posts: 959
BB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB UserBB07 HB User
Re: What's next when nothing helps the pain?

Hi-

I have the exact same problem as you-I know how you feel-when I sit I swear I can feel the bones in my butt-the pain starts from low back and BURNS down to my feet- I have herniated disc in lumbar area and sciatca with nerve damage-YES-the worst pain is the nerve pain and my dr told me to expect only min relief. He has tried many meds and therapies and now what is helping some is laying in hot water and the meds-oxycontin 60mg twice day with 4 percocet 10/325 a day; and 2mg klonapin a day.

I have a hard time with this 24/7 pain trying to sleep is the worst because the pain is so stimulating in a negative way. I have just started the above mentioned meds and they seem to be helping me some and i am grateful.

Hope you will feel better soon.

Bama
__________________
constant companion pain

 
Sponsors Lightbulb
   
Old 06-19-2010, 08:26 PM   #3
Senior Veteran
(male)
 
jonnstar's Avatar
 
Join Date: Mar 2010
Posts: 1,873
jonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB Userjonnstar HB User
Re: What's next when nothing helps the pain?

Have you tried amitriptyline - occasionaly it can work a miracle.

Ketamine might be worthy of consideration if you realy have tried everything and are at the end of the road.

 
Old 06-19-2010, 08:30 PM   #4
Junior Member
(female)
 
Join Date: Apr 2010
Posts: 48
Blog Entries: 2
Matchfoot HB User
Re: What's next when nothing helps the pain?

Hessie28, I have chronic demyelinating neuropathy (nerve pain). Ask your PM about Intrathecal Morphine Pump. The meds go directly to the affected spine.

 
Old 06-27-2010, 09:05 AM   #5
Senior Veteran
(female)
 
Join Date: Dec 2006
Location: western us
Posts: 7,268
ms_west HB User
Re: What's next when nothing helps the pain?

Hessie, we have followed one another for a long time and you know we both have had a tough journey with our backs. I just recently had a pain pump put in and I am regaining my life back. I wish I would have done this along time ago. I am finally out of my recliner and beginning to enjoy life again. If you have any questions or just want to talk. I am here for you. I understand how discouraging it is to be beyond miserable.

((((Hugs)))

Last edited by Administrator; 08-03-2010 at 07:32 PM.

 
Old 06-29-2010, 12:16 AM   #6
Senior Veteran
(female)
 
Join Date: Jun 2008
Location: United States
Posts: 1,402
nochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB Usernochange HB User
Re: What's next when nothing helps the pain?

Quote:
Originally Posted by hessie28 View Post
Hi All.


Where do we go next. I'm 45. As I get older what happens? There has to be a better way. I think I have tried everything.

.
Hey hessie28. how are you? I'm 39. I know how you feel with this horrible chronic pain. I'm here suffering 24/7 from severe chronic neck pain it drives me nuts. Look what I've done. I tell you what helped me. I'm now on 2mg clonazepam and I take two of them before going to sleep. In case I'm able to sleep without them I won't take it. cause just like you I will run out of options!. My doctor is buffled also. It's horrible when my doctor tells me I'm rare case of car accident/whiplash with such severe pain + inability to sleep.
He's never met anyone like me. how is that possible?

I've started vitamins that really sounds silly cause in the beginning I thought "how can vitamins help you?" those are not pain killers!. but yes it does.

and that's what I do. In the morning, I take magnesium+B6(it comes together in a box) but perhaps taking magnesium citrate on its own is better also so I take about 650mg of it a day. Magnesium helps with the nervous system and chronic pain and that I take together Calcium and Vitamin D.
Then I take at the same time Selenium(which suppose to help with joint/arthritis)together with vitamin E cause they are working better together.

So then at nighttime I repeat the SAME ritual with the vitamins. I'm not sure about the dosage of those vitamins so that you will need to discuss with your doctor. But it does help. I'm not losing my mind now.

I"m also taking some gabapentin like 1600mg a day, that's for nerve pain.

Situation is improving. I decided to stop for a while with the oxycontin.
Oh, Percocet 10/325 stopped working anyway, it stopped working so quickly for me, I just don't understand why. How come any narcotic pain meds stops working so quickly for me??people here say it's the metabolism.

p.s I've found taking ZINC as horrible for chronic pain, for me anyway.
Taking multivitamins in the morning is ok but not at night time if you have sleeping problems.

Try that before the pump. and let me know how you doing.

all the best and god bless you.

Last edited by nochange; 06-29-2010 at 12:18 AM.

 
Old 06-30-2010, 12:09 AM   #7
Senior Veteran
(female)
 
Join Date: Jun 2008
Location: Cleveland, Ohio
Posts: 506
janiee08 HB Userjaniee08 HB Userjaniee08 HB Userjaniee08 HB Userjaniee08 HB Userjaniee08 HB Userjaniee08 HB User
Re: What's next when nothing helps the pain?

Hessie, I would ask your doctor if he would be willing to increase the dose on your Fent. Patch,OR Oxycontin OR Percoset. And drop the Tramadol.Hard for me to exactly say since I don't know what dosages you are on of each med. Let's say after a year of this, he could increase just the Fent. Patch. Then the next year, just increase the Oxy., and third year the Percoset. And just keep rotating like this? Just a thought since you were concerned about being only 45. Hope everything works out well for you, Hessie! So nice to hear from you again!! Seeing your post really put a smile on my face!!....janiee

Last edited by Administrator; 08-03-2010 at 07:33 PM. Reason: !

 
Old 06-30-2010, 05:03 AM   #8
sjb sjb is offline
Facilitator
(female)
 
Join Date: Jun 2010
Location: Gardner Ma USA
Posts: 3,386
sjb HB Usersjb HB Usersjb HB Usersjb HB Usersjb HB Usersjb HB Usersjb HB Usersjb HB Usersjb HB Usersjb HB Usersjb HB User
Re: What's next when nothing helps the pain?

Hi I know a doctor that said she felt better with her herniated disc problem when she drank more water. She also did a lot of juicing vegetables and other things. She drinks 10-16 glasses of water a day. She uses 1/2 teaspoon of salt a day because the water will wash out the salt and must be replaced. She also lives in California and I am not sure about her temperatures there. She said the idea is to fill the disc with water to get it off the nerve. I don't know how much it would help someone who has had a disc actually removed but it might help someone else out there.

 
Old 06-30-2010, 07:42 PM   #9
Junior Member
(female)
 
Join Date: Apr 2010
Posts: 48
Blog Entries: 2
Matchfoot HB User
Re: What's next when nothing helps the pain?

Hi, I may be newbie here, but not to chronic pain. I've tried Oxycodone, Percoset, Ms Contin, and Duragesic Patch. I'm praying you find help asap! Believe it or not, I find Alpha Lipoic Acid 900 mg. daily , a big help for my burning, stabbing, neuropathic foot pain. Also I got a prescription Lizocaine (sp?) Patch, it stops the arthritis on top of my left foot. There's alot of new info out there for chronic pain, but when I hurt it seems impossible to concentrate. Thank you for reading this, and again, I pray you find something that works for you!

 
Old 07-01-2010, 10:02 PM   #10
Senior Veteran
(female)
 
Join Date: Jun 2008
Location: Cleveland, Ohio
Posts: 506
janiee08 HB Userjaniee08 HB Userjaniee08 HB Userjaniee08 HB Userjaniee08 HB Userjaniee08 HB Userjaniee08 HB User
Re: What's next when nothing helps the pain?

sjb, I'm glad you brought this point up. Not sure if it works, or perhaps it helps somewhat-which would be worth it anyways. In fact the physical therapist I had right after my last spinal fusion recommended this as well....janiee

 
Old 07-05-2010, 12:51 PM   #11
Senior Veteran
(female)
 
BrittleBones's Avatar
 
Join Date: Jan 2005
Location: Central Maryland
Posts: 898
BrittleBones HB UserBrittleBones HB UserBrittleBones HB UserBrittleBones HB UserBrittleBones HB User
Re: What's next when nothing helps the pain?

Hi Hessie! I too have suffered from chronic pain for many, many years. I have both nerve pain and bone pain. I've probably tried almost every narcotic (and non-narcotic) pain medication that exists and the one that has really given the the best results is Methadone. It's unfortunate that many people still equate taking Methadone with heroin addiction. But, the fact is Methadone is being used on a wide-spread basis for controlling severe and chronic pain. Methadone has the advantage of not giving the patient a "high" or a sense of euphoria. Your mind is clear once your body has adjusted to the dose. Methadone has a very long half-life which helps keep your serum levels consistent.

You might want to speak to your doc about a trial of Methadone. Just keep in mind that folks new to this med need to give the drug enough time to reach peak serum levels. Most docs start patients out on the very low side of a dosage and adjust upwards over a few weeks. I sure hope you find something that can help you. All the best - Brittle Bones

 
Old 07-21-2010, 01:12 PM   #12
Facilitator
(female)
 
Moldova's Avatar
 
Join Date: Dec 2006
Location: N.J.
Posts: 3,642
Moldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB User
Re: What's next when nothing helps the pain?

Dear Hessie,
I believe many of us in same boat here; your PM Dr is right. I was also told that going up and up in PK is not the answer, one day we hit the ceiling and then what?
I took matter in my own hands when i realized that I am going up and up. Even though all my conditions deteriorate, Arachnoidities included, I understood that no matter how high my doses are, due to body tolerance it stops working as good as in the beginning. So what is the reason to increase the dose?

I made my own plan; I learned that more I do, worse I get. More I stand or sit or walk - more pain I endure. It's very hard mentally for a very active mom, grandma, wife to spend more time in bed then cooking, weeding, or visiting your grand kids. But I have no choice, I am the one who suffers badly after being active. I guess acceptance is a very important thing here. Very hard to change your life, very hard to become inactive, but situation dictates what I am capable of and what not. Just accept it and go with a flow, sweetie.
When you rest more, you will feel better. You may say that when you in bed pain is also strong, especially if you have nerve damages like I do. This is true, but more time you spend resting - less inflamed your spinal nerves will become and this will help you with pain eventually.
I still get very bad days even when I rest, still a lot of issues, but not doing too much helping me while taking medication. This is not a secret, that we, women, do too much. We want to feel needed, we want to spoil our loved ones with delicious dinners or take our kids to the beach... I get this!!

But when the question is about your well being, about you going on more and more opioids, something has to be done.
When I told my PM about my plan, he was very happy for me, he said this is a great idea to try and see how will I do. And if still will be unbearable, he can add something to the "cocktail" of my meds, but it will not be as soon and not high doses as usual.
So far my plan is working for me and I did not get any increased in my meds since November of 2009. Of course it all depends on your pain tolerance (I happen to have very high), higher is this - better for you. I take my BT only when I cant take it anymore. Some people may take their BT when their pain level is 4-5 out of 10; I wouldn't take any BT at this level, only when it gets 7-8, then I do it.
By living this way, I feel good that I am in control of my meds, not meds taking control of me. I am very afraid of getting that "ceiling". I know a lady who reached hers and only one thing they could do for her is send her to detox from all the meds for couple of month and then start all over again.
I cant picture even one day without medication due to such severe pain, how would I do for couple of month? So I have to do something about it, nobody else can help me with it.

I will be glad to answer any of your questions, sweetie. My heart goes out to you, I know what this means to live in so much pain. I also know how hard to live with not much activity, with not being able to go places, to sit through the movie, to take a ride to visit your relatives even if it only 2 hours away... But we have to do what we can just to be here for our loved ones, for them to see a smile on our faces...

Best of luck you!!
Moldova

 
Old 09-28-2010, 03:15 PM   #13
Senior Veteran
(female)
 
Join Date: Oct 2006
Location: NJ
Posts: 1,320
hessie28 HB Userhessie28 HB User
Re: What's next when nothing helps the pain?

Hi Everyone,

Sorry I haven't responded. I apparently have an old email here and the response went to that and I never went back to check. Just found it today when I was checking the old email.

Thanks everyone for your input. We all seem to have the same issues.

In August I went on Embeda. It is Morphine based. So now I am on 50mcg of Fentanyl Patch, 20mg Percocet every 4-6 hrs and the Embeda 60 mg twice a day. The thought of the Dr. is to increase the Embeda to a point where my pain level gets down to a 6. If it works better then that I could eventually go off the patch.

The Embeda has been helping a little. I still get some bad days. But one Dr. appt. the Dr. said that I wasn't complaining about the horrible pain down my leg. So at the moment I realized it was a little better.

The Dr. did not want to do the pain pump implant. He said that is my last resort. I was pretty close to it. So, now it is tolerable. I get a few bad days. Pain everyday but not untolerable everyday. Hopefully will stay that way. When it got cold last week for a few days the pain was back with a vengence. Now it has calmed a little.

So, thanks for all your responses. I will change my email here so I don't mis anymore posts.

Thanks,
Kathy

 
Old 09-28-2010, 03:29 PM   #14
Facilitator
(female)
 
Moldova's Avatar
 
Join Date: Dec 2006
Location: N.J.
Posts: 3,642
Moldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB User
Re: What's next when nothing helps the pain?

Dear Kathy,
since we talked last, I am also on a new medication. It really new, they don't even have generic form for it, it called Nucynta. I like it so much better then Percocet. My body got used to Percocet, and I had 0 relieve on it despite the fact that I am on LA Oxy as well.
I like Nucynta, doesnt make me sleepy or tired, plus I really feel better relieve with it then with treatments before.
I absolutely understand your worry about going up on meds and to reach "ceiling" after which you don't know what happens. This is my worry as well.
My Dr told me that I need quality of life and to ask him when I feel I need higher doses. I do it only when I really don't get any pain relieve. I am very careful with going higher in doses.

I think we cant win... I know a lady who resently had pain pump put in and she is very happy. She will always be on pain pump medication and on oral as well. I learned that some people can be only on pain pump, but some have to take oral as well. I just wonder what is the reason to go through procedure of inserting pain pump, if you still have to take oral medication?

I guess each case is different. AS long as people get relieve, who cares what way they get it, right?

Wishing all the best
Moldova

 
Old 10-02-2010, 05:09 PM   #15
Senior Veteran
(female)
 
Join Date: Jul 2010
Location: Missouri
Posts: 755
maltluver HB Usermaltluver HB Usermaltluver HB Usermaltluver HB Usermaltluver HB Usermaltluver HB Usermaltluver HB Usermaltluver HB Usermaltluver HB Usermaltluver HB Usermaltluver HB User
Re: What's next when nothing helps the pain?

Quote:
Originally Posted by Moldova View Post
Dear Kathy,
since we talked last, I am also on a new medication. It really new, they don't even have generic form for it, it called Nucynta. I like it so much better then Percocet. My body got used to Percocet, and I had 0 relieve on it despite the fact that I am on LA Oxy as well.
I like Nucynta, doesnt make me sleepy or tired, plus I really feel better relieve with it then with treatments before.
I absolutely understand your worry about going up on meds and to reach "ceiling" after which you don't know what happens. This is my worry as well.
My Dr told me that I need quality of life and to ask him when I feel I need higher doses. I do it only when I really don't get any pain relieve. I am very careful with going higher in doses.

I think we cant win... I know a lady who resently had pain pump put in and she is very happy. She will always be on pain pump medication and on oral as well. I learned that some people can be only on pain pump, but some have to take oral as well. I just wonder what is the reason to go through procedure of inserting pain pump, if you still have to take oral medication?

I guess each case is different. AS long as people get relieve, who cares what way they get it, right?

Wishing all the best
Moldova
Hi, everyone. I used to post here quite a bit, but fell away when I lost my husband and recently decided to come back. I need the companshiop I found here.

I have the morphine pump but have dilaudid in mine. I also take Narco 10 for bt pain. Just like someone on a high dose of oxy might need a bt, so do most patients with the pump. The good news is that the dilaudid is going directly into the spinal canal giving much better relief than an oral med. I thought I had died and gone to heaven when I got mine!

I am in a lot of pain again, and it seems my spine has deteriorated much faster than expected. I've got spinal canal stenosis and awful burning in my right leg in spite of taking Lyrica. Would hate to think what it would be like without the lyrica and pump! Got several bone spurs impinging nerves as well and my right leg is getting weaker almost by the day. No choice but another surgery.

But basically, I just wanted to explain why the pump is so much better than high doses of oral meds and why you might need bt meds. Hope I did that.

Carol

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Concurrent Autoimmune Disorders... what are yours? ArtsyAthlete Fibromyalgia 7 05-30-2011 12:45 PM
dont know what to do next??? bergerbaby Dental Health 0 04-06-2009 11:11 AM
pain meds, what would you do? monkey5 Pain Management 25 02-26-2009 06:22 PM
What's next? RoseinSanDiego Reflex Sympathetic Dystrophy (RSD) (CRPS) 5 11-21-2008 08:54 PM
Caregiver asks: What do I do right after Mom's surgery?? sivad Carpal Tunnel Syndrome 2 07-11-2007 09:26 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



gmak (37), katlin09 (20), cspineguy (19), tortoisegirl (18), BB07 (17), Moldova (13), Shoreline (13), LadyBassPlayer (12), jonnstar (11), nochange (9)

Site Wide Totals

teteri66 (1166), MSJayhawk (1000), Apollo123 (899), Titchou (835), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 03:28 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!