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Old 11-12-2005, 07:31 AM   #1
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Angry Need help/opinions here!!

okay,i have this situation that occured yesterday at my PM mandatory 3 mo appt?and besides being rather upset that my NP could not understand my need for a raise in my OC(it has been about a year and a half at 60mgs x three per day)i was told a bold face lie,to my face regarding how OC works and the fact that she said it did indeed have a 'ceiling affect" when I know damn well it does not.i recently(mostly because of the recent loss of prioperception with my legs)did a really stupid thing when i stepped back to place the towel back down by my back door after wiping the stupid dogs paws with it,our kitchen has one step back down to the back door,and when I stepped backwards,I missed that step completly and landed full weight on my R foot right on the heel part?this ordinarily would not have been such a big deal but my R knee has RSD,grade II III chondro(my patella is just shredded)a huge bakers cyst that has wrapped itself around the structures in my knee,alot of free fluid that desperetly needs to be aspirated,and some of the most godawful extreme pain that is just so incredibly bad and bizarre in nature that I cannot even actually even begin to describe just what it feels like,lets just say it is very very 'bad".This knee really really needs surgical intervention and i was planning on going back to my ortho right after my NSs appt about a month ago,but when this latest brain aneurysm nightmare happened well, i had to triage my medical issues for the time being.

ANYWAY,i have not asked for any kind of a raise in any of my meds with exception of my gabitril since i was finally stabilized on my current dose well over a year and a half ago.Despite my ever increasing pain(which they ARE aware of)i have turned to using other modalities like my new TENS which really has been a godsend,and just rest and ice and heat my lido patches and other topicals(no inj worked for me at all).so when this little incident happened,well as you can imagine,things have become much worse here in painland ever since.i also have a ton of new crepitus that was only a very small amount before.everything about this knee now went from bad to worse since that day.so when I went for my 3 mo visit yesterday I thought a raise in my OC was in order totally.things are beyond what the relief used to be with the 60mgs three times a day.i really thought that they would totally see where I was coming from with this.WRONG.not only did this NP(who by the way was not my normal NP but this woman DID indeed consult my actual normal NP before this decision to not raise my OC was made)not raise my dosage,but as we were discussing it,i asked her why they could not raise it as it does really work on some of my pain and I felt just raising it would do much better than what she had first suggested about trying something totally new,and get this:she stated to me that at my current dose,i was already at the limit of what would be considered the top dose limit per day as that OC had a ceiling affect and that only so much can actually fit on the pain receptor in the brain.now, i am not stupid,and have researched the heck out of ALL meds that I take and have learned TONS of info from just being here on this board about all pain meds and i know without a doubt that MS and oxy have no ceiling effect as they are pure opites.so I told her that according to the research that I have done on OC it does NOT have any ceiling affect and she told me that i was wrong.So I am sittin there like,wow,i am really really getting bunch of total crap here and quite obviously there is some reason that they feel my pain is no where near as bad as it actually is and I was really P oed do to the fact that this woman just told me a bold faced lie.and then has tha gall to tell me i am wrong.after this I am telling her about all I am dealing with and how very badly my knee has become since that incident and she never even asked to see my knee or really DO anything other just explain that she did not think that when she was going to talk with my usual NP that she would go for a raise,but she would go talk to her and be right back.So i wait,and the nurse comes back in and says well,they are not going to raise you dose of OC but they are going to try changing the way you are currently taking it,by making my mid day dose the biggest as that is normally when My pain gets the worst.I was just totally shocked,really.what in the hell is the big deal here about raising my OC to like 80 or even 70 mgs three times a day?am i wrong here/Is there actually some sort of leagal limit thing going on that I am not aware of?i really am not sure just what to do about all this.unfortunetly my really wondeful primary doc is out of town on some sort of a retreat or something for like three mose weeks so I cannot speak with him about this at all.also my normal actual PM Doc was not in the office so I could not even speak with him.now he is a really great commapassionate guy but unfortunetly,I do not see him unless I have a procedure or something.i really DO want to talk with him personally but I don't really want to cause any problems for myself or step on toes and have these NPs all ****** at me.what the hell do I do here guys?i really need some good advice.does an actual raise to like 80mgs x three a day seem like alot to any of you?i just don't feel like i have that trust with my NPs anymore you know?i mean geez,we are expected to be honest and forthcoming in all ways,but it is okay for the NPs to lie to me??i think that is what really bothers me the most here,really.i don't like it when someone just blatently lies to my face like she did yesterday.please offer any help as I really really need all of your expert advice here,really.i do not want to do the wrong thing here and totally screw myself at my PM clinic you know?but honestly,i do really need more of something for the increased pain in this knee.???????thanks,sorry this was so freakin long,Marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
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Old 11-12-2005, 11:34 AM   #2
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Re: Need help/opinions here!!

I can feel your pain on the bad, mean a$$ doctors, as u could see in my post about hating life. wat does np stand for? i can really empathize with ur situation, however. to me, 80mg 3x a day seems like a lot. but it really isnt i guess, since u have been on 60mg's 3x a day for a year and a half. I cant believe u hadnt has a riase before that. It makes me sad for u cuz i know how u feel. You need a doctor who can empathiz with your pain. Thats what i have done, however i see a pm DR for the first time on monday so we will see what they are all about. I am srry for your bad care and it makes my heart hurt for you. I hope u have some pain free seconds today marcia.
~chadd
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I am thankful for every second of every day that I am pain free.

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Old 11-12-2005, 12:42 PM   #3
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Re: Need help/opinions here!!

Ok, this is what I think I might would do. Get an appt with the PM dr. Tell him just how bad you are hurting, all about your knee, the whole thing. Tell him you think you and this other dr. had a mis comunication about your pain and pain meds. Tell him what your research shows and say something like, maybe she didn't get what you were saying, like maybe you didn't explain yourself as well as you'd have liked to. You say he is a really a compassionate dr.and maybe this will help and not make any of them angry or whatever. Maybe this way they won't look at as though you were telling on them or stepping on their toes.
I hope however you decide to handle it, and it does sound to me like it needs handled, that it works out and since you're in so much pain, I hope it works out soon.
April

 
Old 11-13-2005, 04:52 AM   #4
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Re: Need help/opinions here!!

Thanks guys.honestly i wouldn't have even brought it up if i really didn't feel that at this point in time it was sorely needed,really.my entire body is sooo totally messed up due to direct spinal cord injury and my knee really is so screwed up.So much so that i am calling my ortho surgeons office tomorrow morning to see if he can actually find the time to pop next store to the hsp i will be at in the morning to have my aneurysm coiled.i have to be there by 10;00 am to start hydration as i have polycystic kidneys and they need to hydrate along with taking this nasty stuff that supposedly binds with and actually pulls the contrast dye out of the kidneys so it dosen't cause me further damage.my actual procedure isn't till 1;00 so i will just be a hangin out in the pre surg holding area for quite a while.I know my ortho does surgery at this hosp and his office is actually located right next store to this hosp.i don't know if it will be possible but I HAVE to have this knee evaled asap for any further injury.the problem is i have lost some sensation to it because of a lovely syndrome called brown sequard.my NS knows and understands totally just how bad this knee is and why my flippin pain is just soo bizarre.i am going to call him too and speak with his nurse about this.my NS told me at my last visit that because of my damaged thalamic tract inside of my cord,which IS the pain pathway to the pain receptors in the brain,all of my pain is now deranged.i said you mean it is kinda altered now? and he said no, i mean deranged.sounds much more ominous but it does explain alot.

i am just soo disappointed with my clinic right now.They were just wonderful when i first started.i mean the PM that I saw(my actual PM doc) was soo compassionate when he did my initial eval.God, he pulled the chair up next to me,took ahold of my hand and said that "don't worry,we will take care of you'.Geez I just started ballin ya know?someone finally will help me deal with this nightmare.i just really don't understand this at all.i really wish he would have been there on fri.
thanks for the advice.i am still open to suggestions here.this just sucks.i am terrified of having this procedure done tomorrow and my entire R leg at this point is just screamin.One good thing though,i DO have all of my pain issues adressed with the nurse of the IR who is going to be doing my coiling so at least THAT is covered.

By the way Chaddy, NP stands for nurse practitioner.You will meet at least one of these people at your PM appt.Generally what happens in the majority of PM clinics is you see your actual PM doc for the initial eval and for procedures like injections? but the NP is the person who you will actual see on a continual basis to RX all of your pain meds.at least this is how it is done at my clinic.that is a good and a bad thing i guess.You really don't have to see the actual doc all the time but like my situation right now?they really do not understand all that they actually need to when they are dealing with someone like me who has pain that they really don't understand.Most of my docs really do not 'get it"?when it comes to really knowing just what my really big issues are.the only one who seems to really have a handle on things is my NS as he understands the ramifications of a spinal cord that has suffered direct damage.maybe he can actually speak with my NP about this,i don't know just what I am going to do right now,but this really could have happened at a much better time as I am having enough problems right now just dealing with this stupid brain aneurysm ya know?

thanks again guys for the advice,it really does help alot.hey Shore,can you offer some words of wisdom here please?i really really do respect your plethora of knowledge and any words of advice would really really be sooo appreciated here.I am at a loss as to what steps I need to take here.i am just feeling really betrayed by my PM clinic right now.It appears they are comfortable Rxing for a certain level of pain and anything beyond that well, you are kinda on your own ya know?Oh,and get this.She tells me to re arrange my meds so I am taking the same amount but just in a different way(I get nine 20mgs per day)what is actually written on the sheet is to take my meds at 40-80-40,now what IS wrong with THIS picture??she cannot even count?If I do it this way,I am actually losing one pill per day.Geez,now i HAVE to call them so I can get THIS situated or I will actually lose one pill per day when I get my next fill.God,i am just so bummed right now with these people.ANY sort of advice from anyone would really be most appreciated right now.Thanks for actually taking the time to read this entire "book'.marcia
__________________
3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 11-13-2005, 03:14 PM   #5
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Re: Need help/opinions here!!

Hi Marcia - you know what is so sad about your post? It's the fact that we as patients have to be "careful" about stepping on our health care workers' toes! I can totally relate to what you are saying about knowing a fact from doing research and perhaps even talking to another dr. or pharmacist about the ceiling for a med, or absolutely ANYTHING that has to do with something medical. We, as chronic pain patients, are afraid to rock the boat, to say the wrong thing, to challenge someone in "higher authority". We are terrified to **** off anybody who has the ability to withhold or change our meds!! I've had situations where I've seen 3 different doctors about the same problem and gotten 3 totally different answers, some of which were diamentrically (sp?) opposed to one another! I know medicine is not a science, but you'd think there would be a little more consistency, wouldn't you. Anyway, I'm off topic. I've had doctors and nurse practitioners and physicians assistants tell me absolutely bogus stuff. It's very scary out there. But if you try to suggest that they might be wrong, most will stick to their guns. They become so defensive, even if shown research articles, etc., they can still brush it off. Anyway, I feel bad for you. I firmly believe that most patients know exactly what's best for them when it comes to medications. If they've been long term pain patients they know most of the meds and I wish doctors would listen before just switching people from one med to another before trying a different dose. Sorry this is so long - I just get so irked our treatment who don't even have the correct medical facts. Hope you get the help you deserve!! KathyMac

 
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