Chronic Pain Support Group

Yes, he has many complications due to his cirrhosis but medically, he's doing fairly well. The chronic pain is what is literally killing him. In March, he went to the hospital due to back pain. This is a strong man who passed several kidney stones with no pain medication. His back was hurting so bad and he was running a fever. During the MRI and CT scans, they found out he has cirrhosis. For years, he was in treatment for chronic anemia and his liver was checked often, with normal results. He also had a blood infection and that took priority. Long story short, he was hospitalized for 25 days; 10 in ICU. Three times in four days, I was told he would not make it. His back pain was forgotten. Saving his life took precedence. At discharge, he was sent home with pain medication but no real diagnosis for it. Two trips to the ER, more pain meds and assurance nothing was broken, but still no diagnosis nor referral to a pain specialist. It took an excruiating visit to his Hematologist to get an appointment to a spine specialist. He has arthritis in his back, slipped disk which was made worse by a fall, pinched nerves around this disk and some other things that I cannot spell, much less understand what is wrong. Any way, Fentanyl 25 mcg did nothing to control his pain. He is on 50 mcg patch now and he's comfortable as long as he's lying down. Sitting up, just to eat, and he's miserable. His liver doctor is having a fit over the strong narcotics. He's loosing all his muscle mass due to inactivity and the cirrhosis. I am helpless as I know he needs to eat and get out of bed and move, but when the pain is so severe, I want him not to suffer.

Sorry for the rambling. Just found this support group. We've not dealt with this sort of pain before. I just want his suffering to stop.

The fentanyl patch comes in stronger sizes. It is wisest to start low and work up; I'd a whole lot rather a patient came back in three weeks and told me he wasn't much impressed by the latest thing I added for pain control than get a call from a spouse the next morning saying "Funny thing about that new medicine you prescribed: (s)he took it last night and this morning woke up dead." Just report that it helped, but he's still in a lot of pain.

I was on them for a while until one almost killed me. I was very lucky to be opioid tolerant and know the signs of an overdose. I followed all the directions on my 75mcg patches and I still had one release all the drug at once. I started getting lathargic, unable to walk, talk etc. I immediatly removed the patch and stayed awake. I had to tell myself to breathe as my brain no longer had control of that. It was very very scary to say the least. I told my doc I wanted no part of them after that. Mine were Duragesic 75mcg. Please be very careful with the patches and follow the directions exactly. If he starts to get as I felt remove it immediately and call 911. Keep in mind that even after you remove it it will still be releasing what is on the skin. The best bet would be to have the antidote for opioids handy, but I dont think its something they will give you to have just in case, but it is a life saver for many. I forget what they call it but its what they give to heroin users that OD too. I went on MsContin 60mg 4 times a day after that. The patches did work much better for the pain but I don't want to die either. Listen to the doc above, im not a doc this is just my personal experiance, and it was too much for me. The pain relief was much better but like i said, for now i'd rather stay alive. God bless and tell your husband to stay strong and hang in there. I've been in pain for 4 years now, and it is not easy by any means. I sure hope for his sake he doesn't have to go through finding a new doctor because they often turn down new patients with chronic pain and will label you as a drug seeker. I have degenerative disk disease, S1 to L4 triple fusion, a lot of nerve damage and a boney spike growing through my spinal cord at L4 where the surgeon drilled the wrong spot into my spinal cord, then filled it with a NON FDA bone grafting material. Been in pain since the surgery in 2008. Best of luck to you and your husband and keep a close eye on him, let him know what the doc and I said and stay strong, and together you will be fine. I'll keep u guys in my prayers.

Dave

And if your in state that permits medical marijuana, i'd check into it. It will help some with the pain, as well as help nausea from pain meds, and will also increase his appetite, which will help him get muscle mass back. Once he gets on the right dosage with the opioids he will be feeling better and should be able to get around and move some. I can move with the meds, without no. I am a medical marijuana patient as well, and it has helped me a lot. For some they stop taking the prescription pain meds because the medical marijuana helps them so much they can get away from the pain meds. For me it doesnt work that great for the pain but helps with the side effects from the pain meds a ton. It will not harm his liver either, as opposed to the narcotics. Give it a try if u legally can. God bless!

Dave

Post edited by: magikarp, at: 06/12/2012 11:40 PM

Post edited by: magikarp, at: 06/12/2012 11:41 PM

Thanks for all the great information, Dave. He's on 50 mcg and they want to cut back to 25 mcg and 12 mcg. He is still afraid he will feel the pain if they cut back. Due to his cirrhosis, I think there is too many side effects and will need to cut down regardless. I wish we had medical marijuana. Anything to get him to not hurt, nor feel sick at his stomach. Eating would be a bonus. Way too conservative a state and if he is to make it to the liver transplant list, no drugs, even if medically necessary. I stayed awake all night the first time he was on a patch. Kept waking him up to make certain I could wake him. Wasn't quite so out of it this time with the increase.