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I agree with what has been said. We cannot tell these docs what we want. I have offered suggestions on things I have heard. At one point I was ready for the Morphine pump.(or anything they could do to get rid of the pain!) The docs wanted to hold off, and I am glad they did, I was having slowed bowels, nausea, and bladder problems. I already have these anyway, due to the spinal cord injury, and they ended up puing me on the Fentanyl Patch q 48 hours, as I cannot wear it for the full 72.
Makes it hard to transition to the higher doses. Plus if I am late I go through intense anxiety ridden w/d. I am on Xanaax but it doe nothing for the w/d. I am also on trillifon, and Trazasone 200mg at hs.
But I do agree the w/d is a horrible experience. Plus I do not want to become sooo dependent on these drugs, because it is my hope that I will be able to get off of them as soon as possible after the fusion. I know I am probably dreaming on that point, but I have to keep on believing that miracle will one day happen.
They are already talking about raising my Patch to 100mcg per hour, I do not think I can take being a vegie case. The 75 is already making me way too tired. Seems I want to sleep all the time. I take stress vitamins to counter act this effect.
Seems to work 75% of the time, but like last night I went to bed at 6:30 and did not get up until 7:30 this morning. But I do feel awake. Normally I go through 2 weeks of this when they up the patch. I am just extremely sensitive to all the meds. I like to use the minimum required to get by. Not a good scenario.
In any case I have long since accepted he fact that I am addicted to the patch,but I do not like it. I have tried to find other methods, but so far the patch has done the best. The Docs at the clinic that I go to are also on a rotating schedule. I got messed up on my meds last Dec. When one doc said that because the Fentanyl was making me sickat 75 he wanted to lower it back to 50, never mind that the pain was better. I had hoped he would just prescribe a nausea drug, but not the case with this doc. He is not the type to think that way. All he saw was that he was adding another drug to the agenda, and just last week they had to up it anyway back to the 75, I could not even get out of bed or tie my shoes, it was not a good scene, and I had to deal with another doc 40 minutes away by telephone. Took me 2 daays of pain to straighten out the mess, and then I went for an Eval on Monday, and the doc was great. Even asked me how many suppositories I felt I would need daily to fight the nausea. He actually was working with me, and ??? whether or not they should do the 100 instead of the75. I told him that with my sensitivities it would be better to wait and see what happens with the 75 for awhile. But I do agree, when there are too many hands in the pie, and one gets to being a Prima Donna it can get to ya. I have to see the doc who lowered it in 2 weeks, and I am scared he will poo-poo all the other doc did to make me comfortable. This dude is real conservative. They all have their own ways, the one I saw this week is all hyped on added the spinal cord stimulator after the back surgery to help control the pain, and right now I cannot even begin to think that way.
As of now I am just trying to get by day by day until the get to the next surgery, in the next 4 weeks they are supposed to schedule it. I am very scared as I will have to go to a Spinal Rehab Center following the release from the hhospital as I have noone to care for me here. On top of all this I have a 15 year old daughter, who is very involved in the school sports, and a 12 year old son, to take care of. Right now I feel so incapacitated, I dependent on others to taxi my kids, I fell asleep at a red light a couple of days ago. The honking of the cars behind me woke me up and I made my getaway. I am unable to read because my brain shuts down as soon as I relax, same with TV & puter. They have found me passed oout on the keybard.
I know I have probably talked everyone's ears off, and for that I apologise. It is just nice to find a place where everybody understands. I am at the point where everyone here is sick of hearing me talk, and complian, I am surprised I still even have my fiance, so much for any one person to deal with... I do not know how he does it, especially since as we all know, the pain even messes with the sex life. I feel like I would be totally alone without him.
As far as work goes, well, I will miss it too. There is no place for a trucker with a broke back in the industry except in the office. Someday maybe I will be there. As they say in AA, one day at a time.


Human beings, by changing the inner attitudes of their minds,
can change the outer aspects of their lives.

[This message has been edited by nstar92 (edited 01-18-2002).]

Hey Ladies!
Nice to see you in here too, ktarus!
I normally do get treated by the samedoc now, but it took awhile to get there. What stank for me was the peroid of the worst pain I have had in ages, that put me to bed, my reg doc was not there. Just as well because he was the one who dropped the Fentanyl from 75 back to 50 in December because I was nauseous and he did not want to prescribe anti nausea drugs for me also. I have since found out that my trillifon is generically called Perphenazine, I do check ALL my drugs for interaction, something I have had to do to survive. The Perphenazine is the first cousin to the Phergan they gave me for nausea control, so actually I was double whammying myself~I cut the trillifon back, I am no longer taking the night dose, and I am having an easier time of it during the day. I will give my reg pain doc credit, he is the least likely one to overmedicate, if anything, he would rather allow me to feel some pain. THey are now talking about upping my patch to 100mcg in stead of 75, as I am back in Level 9 pain again, but are first increasing the baclofen.
I have the added problem of MS darkening the horizon, they have found the scar tissue in the brain, but want to wait until they resolve the fusion to deal with that, had the EEGs and all the brain wave studies. They found the scar tissue on the MRI of the brain.
Anyway, I am finding myself doing wierd things lately too. I think I was walking in my sleep last night and almost walked in on my dad in the bathtub- I did not ask him this morning. I also get to the point in a conversation where I just kinda float away on really wierd topics, that is normally when the better half knows I am not able to communicate anymore and that I am ready to go to bed! It seems my mind just drifts off in other directions when it loses interest!
You all are definitely having probs with the Vaso stuff. I have had no problems with passing out, but I do fall asleep sometimes in the wee hours of the AM on the toilet. Mind mind shuts down, and off I go to sleep. I have even been found sleeping on the keyboard! At first it was with the Morphine. The morphine did some wierd things to my poor brain. I am also extremely sensitive to any medication of the psyche or pain variety. I have to break them in slowly, or I end up overmedicated as you say. They wanted to up me from 50 mcg to 100 almost overnight, and I told them no, because my body does not take large increases well. As a matter of fact, to get myself use to the 75 I would change the patch every 4 instead of three days, then gradually moved it to the 72 hours, now I have to change it every 48. It really bothers my skin, and sometimes just falls off all dried up after the 48 hours Being on Medicaid I am only allowed enough for the month, so I have to use bandage tape to hold it on. I also break out really badly after 48 hours.
I do have a question. The 75 is soo big, where do we put it?? My skin is so dry from where I have had to place the patch, I use heavy moisturizers to keep the skin supple after I remove the patch, because I actually have a bright red spot and then I end up scratching because it itches so bad. Does anyone have any suggestions for what to do and where to place it. I was using my arms and breasts for the 50, but the 75 is so big it takes up all the places I use in one application. I think I will ask for 50s and 25s next time. Also, do we have to keep rotating sides??? I do not have any plan when I do the patches, it is hard enough to find a spot that is not used up???
Baclofen seems to help the spasms really well, now that he has me up to the 30 3x a day. I try to avoid the Afternoon dose so I can keep my head on straight and get my daughter after school. I have noticed at the higher dose I do get woozy. I think sometimes that it takes a lot of effort on our part to get a schedule that works when we are on so many meds. The trazadone I take a HS, and the Baclofen, which is why I had to discontinue the trillifon. It is the same basically as Steline and Thorazine, one of those space out drugs. I find it is better to take it with my coffee, the caffeine seems to help fend off the extreme sleepiness and spaciness I get. I have a Med eval with the shrink this month, I am going to let him know I lowered the trillifon because on top of all I have to take at night, I am just too tired to get out of bed in the morning. I do not sleep as well now, but at least I can get up and see my daughter off to school. B4 I was just laying in bed, not even wanting to get up!
Well, enough babbling, thanks ladies for the lsiten!
I think the reason Jim cannot stand to hear about the pain is because he knows it is getting so much worse, and still no word of when the surgery will be scheduled. He has a promotion on the line this week, and I know he really would like to take care of me at home, but will have to send me to the rehab. So i think he is just frustrated. Who wouldn't be?? He has been through 3 and a half years of this, and I can say, it even wears thin with me, I cannot imagine what is like in his shooes to have to stand by and feel helpless while I am in pain. So I am going to lighten up around him for awhile, maybe even find a way to laugh at it... Perhaps his stress level will go down. I even told him just to bring me in for the surgery, and since he is only 30 min away at work, to just go to work and they can reach him on his cell phone in the office. This hospital also gives out pagers for emergencies where the other person has to work. I also have a living will, what to do if there is an emergency and no life support to take the decision out of his hands. I want to be incontrol to the end. I nkow he is resentful because I have a rare blood type, and my ex is the only one who can donate blood. Aside from me already donating 3 pints, the ex has donated 2, so there should be some left over. The ex also wanted to donate marrow for me. I know this is not easy for him to take, the ex being nice to me.
Thanks for the listen, as I said prior, I am in tears because I seem to have found so many who care enough to listen. I have never had this. I am actually thinking of putting to gether a site for Fusions, complete with Bulletin boards and chat rooms and all. Do you think we have a need for this???

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