I'm SO Frustrated!!

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drjimmy
Regular Member


Date Joined Dec 2008
Total Posts : 110
   Posted 4/8/2010 10:47 AM (GMT -7)   
I'm on more/stronger pain medication than I've ever been on and yet my pain is so bad and constant...Pain seems to be as bad, if not worse than it's ever been in my life. I realize that my physical situation may have deteriorated to a point that it causes constant excruciating pain and weakness, even with a very high dose of narcotic pain medicine (Oxycontin 80 MG 3 times daily & Percocet 10/325 MG 4 times daily). However I have several family members who question whether I should be on the pain meds I'm on, or whether I should be on such a high level. Their point is, if my pain is so bad and constant while taking strong pain meds, are the meds really working? I know that they help, because my pain doctor tried to lower my dose, with the intention being to ween me off the medicine I'm on. He said that my pain might get worse for a while, but that he felt my body would adjust to the lower dose and my pain would level off. I agreed to try and my pain got so much worse. I was patient and stuck withit for over a month , but the pain never got any better and I couldn't stand it. I asked him to return me to the level I was on and shortly after, my pain returned to its "normal" level. To me, that proved that the pain meds are working to some extent. So why is my pain so excruciating and constant? I'm about to have my doctor order a new round of testing (MRI, EMG, etc) and consult with a new Neurosurgeon, or Orthopedic Surgeon to try to get some answers. Does anyone else find themselves in a similar situation?
Herniated Lumbar Disks L5 S1, L2 L3
Herniated Cervical Disks C6 C7
Spinal Stenosis
Degenerative Arthritis Left Knee
Pes Planus Both Feet
Multiple Neuropathies
Brachial Plexus/Thoracic Outlet Syndrome
Nerve Pain in Arms, Hands, Back, Legs, Feet, Groin, Testicles


Jim1969
Veteran Member


Date Joined Jul 2009
Total Posts : 2042
   Posted 4/8/2010 11:02 AM (GMT -7)   
There are so many possible reason as the "why" that we could probably crash the server if we tried to list them all.

Some of the "biggies" though are:

We get used to pain meds and they become less effective. Even if we switch meds they may not work because they are too closely related to what we were on. I know all too well how this goes. When I started my CP journey I tried Darvocet, Tramadol, Perc, etc until we got to Morphine which was the first thing we found that worked. At first I thought it only worked because of the severity of my pain, but now having been off of it for a year now, as well as all narcotics I realize the reason the other drugs had no effect was because I had been hospitalized for various conditions a lot in the year leading up to my CP and had been on mainly morphine but also Demerol. So it was like trying to get drunk off of 20 proof whiskey when you were used to 100 proof. What made me realize this was last week I was having a major pain flair and my wife had some Darvocet around and I took one. It was the best I had felt in a year and my pain went from a 9 to a 2 in about an hour and stayed there for around 4 hours.

Our bodies get used to processing pain signals. In other words our bodies become too good at it which causes us to feel pain more acutely than we might have before having CP.

Of course there are the new and/or worsening conditions.

And there is no saying that it has to be any one of these. It could be all of it combined.
2 confirmed herniated lumbar discs. Spinal Arthritis. Spinal Stenosis, diabetic peripheral nueropathy.


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 4/8/2010 3:52 PM (GMT -7)   
Jimmy, I know we all make decisions based on our own thoughts but with the amount of herniated disc you state in your signature, have you ever thought about trying some type of surgery? Has your doctor tried any injections, implants and are you on any type of med for nerve pain. I know I tried everything before I finally couldn't take the pain anymore and decided to have the fusion surgeries. I'm still near from being perfect but I am better than before. I was to the point where I couldn't walk in an upright position anymore. There are other less invasive surgeries out there besides fusion but that is always an individual choice.

Hope you can figure something out that helps.
---Jag---
 
DDD, osteoarthritis, facet syndrome, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus surgeries left knee 2000 & 2002, buldging disc L-2/3


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 4/8/2010 6:14 PM (GMT -7)   
Hi Jimmy, I am sorry to hear you are suffering so badly. Jim and Jag both gave you some excellent things to think about and consider. What Jim says about our bodies becoming use to the meds is so true, it may well be it is time to redo some things in the medication arena. If you are having nerve pain all the pain meds in the world will not touch nerve pain. You need a medication that works specifically on nerve pain, such as Lyirca, Cymbalta or Neurotin. I cannot remember but a couple of peeps on here are taking two of these drug combined and getting relief finally.

Some PM drs have their patients take what they call a "drug holiday" for a week of no meds so that the pain receptors can reset themselves. There is a lot of controversy over this, drs believe in it and patients don't, mainly because we are all afraid of more pain.

Take care and I wish you well.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/8/2010 8:32 PM (GMT -7)   
Jimmy

I am kind of thinking along the same line as Jag, being the fact that you have listed so many herniated disks, maybe they are getting worse and you are having nerve root impingement, and if you are that would explain your worsening pain. And I know that with that type of pain, few pain meds ever really help it. So maybe it is time for an MRI and EMG studies to see how bad things really are. Some times the only thing that will relieve the pain is to take away and fix what is causing it! I know the pain I suffered with in my arms from the herniated disk in my neck. As soon as I had the surgery the pain in my arm was gone. Now the surgery did not fix everything, as I have to many bad disks. But it did fix some of my problems!

I wish you well!

White Beard

drjimmy
Regular Member


Date Joined Dec 2008
Total Posts : 110
   Posted 4/8/2010 10:56 PM (GMT -7)   
Wow, thanks for all of the great responses! I have a lot to consider and digeat after reading these responses. I've had all kinds of injections (Facet blocks, Epidural Steroid Injections, Nerve Blocks, etc) and none of the helped. However they were quite a while ago, before my nerve pain in my legs got bad...Maybe I should try some of them again? I have seen numerous neurosurgeons and orthopedic surgeons and they all felt that surgery would not help me. However, the pain is now unbearable and constant, so I'm about to get a new MRI of the lumbar and a new EMG of the lower extremity...Then I'll see some new doctors to see what they think. I'm not a big fan of surgery (Since I've had 27 surgeries...most on my left knee and my upper extremity nerves), but I'll consider anything at this point that might help. I've been reading up on radio frequency ablation, and I may look further into that. Also, I've been on Neurontin & Lyrica, but they didn't help and I had some bad reactions to them. Maybe I'll ask my doctor about Cymbalta. My problem now is that my insurance company stopped coverage for everyone and that forced me to get new health insurance. My pain doc. doesn't accept my new insurance, so I'm trying to find a new one. However, many pain centers don't accept my insurance and if they do, they don't prescribe pain meds...they only do injections and procedures. Does anyone know of a good pain center in the Philadelphia area that prescribes pain meds? Thanks again for all the great info and suggestions. I hope your pain is somewhat under control. Peace
Herniated Lumbar Disks L5 S1, L2 L3
Herniated Cervical Disks C6 C7
Spinal Stenosis
Degenerative Arthritis Left Knee
Pes Planus Both Feet
Multiple Neuropathies
Brachial Plexus/Thoracic Outlet Syndrome
Nerve Pain in Arms, Hands, Back, Legs, Feet, Groin, Testicles


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 4/10/2010 10:43 AM (GMT -7)   
Jimmy, I think you may be headed in the right direction with some new testing, especially if it had been awhile. There seems to be a trend with some specialists that if the testing is over 6 months old they want newer testing done and then you have to see about insurance paying for iot again. I know with my own personal epxerience concerning surgery the drs would not say I "needed" the surgery, they said the usual stay the same, may get better or could be made worse. They left the decision totally up to me and I appreciated that. They said I would know when I was ready for surgery. Is your new insurance available for you to go online and see what drs are on the plan? If so I would start there and call and find out if they are taking new patients and if they still participate in your plan, many times drs pull out and will still be listed. You can also ask what needs to be done to be seen by that dr. By doing this you can cut down on the time it would take your PCP's office to do this. You could go to the PCP w/this info in hand and say here is who is on my plan and get the referral. Most drs including the PM drs all require a referaal from a another dr. Also since this is new insurance will there be an exclusion on pre-existing conditions, find this out please.

I have had RF done on both my neck & back by my former PM dr. It worked good on my neck but did nothing for my back. It is like anything else, it may help you or it may not. As far as surgery does, its a mix bag too. But many folks have surgery and do well and some don't. That is strictly between you and the dr. The key is finding good drs as you know from your own experience. Please keep us posted.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.

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