Seeing PM Dr. for the First Time

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skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 6/12/2009 9:20 AM (GMT -7)   
I will be seeing a new PM Dr. for the first time on Tuesday. Some of you might know that I am having a pretty bad time of it as of late. I am on medication that has been resulting in me being undermedicated or unmedicated approximately half of the time. I have come to terms w/the fact that I can not endure the current situation forever. I can endure this for a while longer yet but I cannot lie to myself and think that I can do this forever. I am not saying (or threatening) anything when I say this; it has just become a matter of fact for me.

This is where I run into a predicament. I want to be able to tell the Dr. these things but I do not want him/her to think that I am threatening to do something stupid in any way. I have had thoughts about not being able to take this much longer and what I could do if I finally reach the limit of my endurance. These thoughts scare me (as I think they should) and I do not want to be having them but the fact remains that I do have them and they pop up more and more frequently as this seems to get worse and worse. I just simply think I should tell someone about it.

How can I possibly bring this up? How can I make my Dr. understand that I cannot endure this forever and not have them think that I being petulant and saying "do something for me or else". This is not the case at all. I have been in extreme pain for over two years and I have never been this bad before. I am losing hope and cannot see a way out of this.

Has anyone else had this kind of conversation w/a Dr. before? Have any of you reached a point where you felt you had to tell your Dr. that you have been thinking that there has to be a way out of all of this?

I know this is an unpleasant topic to bring up and I know a lot of you will not want to post anything in response to this. I apologize for the hopelessness in this post but this is where I find myself. It seems like I have tried everything anyone can think of and that nothing ever, ever helps. The therapist I saw earlier in the week had nothing he wanted to try, I am not sure if that is because I have done everything he can think of or what. When I see professionals and they have no idea, no explanation and no ideas I do not know what to do. How can I know what to do if they have no idea and this is what they do?

I said above that these things scare me and I think part of the reason that this is so is because I am starting to feel a sense of inevitability about this. I am starting to feel like there is no possible way to get to the point where I can tolerate my situation. If these things stop scaring me to think about, that is where a real problem will begin. What would come next? Nothing good that I can foresee....


Skrape
Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours

Post Edited (skrape) : 6/12/2009 10:23:38 AM (GMT-6)


Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 6/12/2009 10:19 AM (GMT -7)   
What kind of pain? What does the medication treat?

If I were making an ultimatum to a doctor, it would be the previous one, not a brand new one who I've never met before; that new doctor will probably shut down on you.

I would make whatever I did sound the least like an ultimatum possible.

"Doc, I just cannot bear it the way things are. I am crying half the time pain, and trying to figure out how not to cry the other half. I've heard other people who take AAAAAA or BBBBBB. What can you set up for me so I'm not in envy of the person down the street who has my same problem and who only has mild to medium pain? Or what can we try where I won't be in such pain that I am crying from the pain as much as not? I'm willing to try a few things, if you would like to compete for Doctor of the Year. But I have got to get some relief before it drives me coocoo."

Now, that is a sample. Work something out in your own words or you won't say it so it sounds as if it were coming from you. And be sure to use something like the 'coocoo', that takes it into the cartoon and out of the serious or you might have him evaluating you.

My 4 cents. Take 'em only for what they are worth, please.
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer
Meet My Wife And Me


Mystic_Duck
Regular Member


Date Joined Jun 2009
Total Posts : 52
   Posted 6/12/2009 10:58 AM (GMT -7)   
skrape, what ur feeling is perfectly normal in this situation, and ive been there too and i kno that feeling of hopelessness, in fact i still have it. I wouldnt give ur pain doc an ultimatum, especially if this is the first time ur seeing him; i kno this is hard to hear b/c uve probably hav tons and tons of docs let u down... but u got to give the PM doc the benefit of the doubt... alot of pain management docs think differently than other docs, i know its not always the case, but it was for me. i would just start at the very begining of all ur troubles and tell him whats happened what uve tried, what ur on, what worked, what didnt, and so on. tell him what situation ur in, how bad ur pain is, everyday and all day... unlike other docs, these ppl deal with this on a daily basis.... and id also tell him about ur feelings on this, tell him ur feeling so helpless and hopeless, and tell him ur having these thoughts, and also tell him they scare U! thats the key, let him kno u r scared and it will be okay, ni kno from experiance that its better to be honest, and it will end up better! And this is not suppose to sound mean or anything but i just want u to hav an open mind to his ideas, b/c i sure wasnt, when i went to mine... if he suggests and anti depressant or anti anxiety med, just hear him out, cuz i sure didnt and it was a huge mistake.... most likely it wont be a long term thing, just to get u feeling better while working on controling the pain....

I wish u the best, and i hope u get a pain doc like mine! Have faith and know ur not the only one feeling so hopeless!
 
"In God's hands, in God's time."
 
"The scourge of life, and death's extreme disgrace, the smoke of hell, that monster called Pain."


skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 6/12/2009 12:43 PM (GMT -7)   
@TonyMcGuire

I am not really thinking in the terms of ultimatum. I am going to stress to this Dr. that I am not asking them for anything in particular. I just want to convey how bad this has become for me. This isn't something where I want to go in and say "hey do X for me or I will kill myself", nothing like that. I really want them to know that I am really having trouble here.

As for my meds, I am on 100mcgs Fentanyl Patch x 72 hours and they do not last but (max) 48 hours. So half the time I am undermedicated or completely unmedicated. This has resulted in something akin to torture for me. I am in a great amount of pain even when the patch is working and in unGodly amounts of pain when it isn't. The amount of pain coupled with the WD from the patch wearing off (for me stomach cramps are very bad right from the onset, coupled with hot/cold flashes, sweating, full body pain, etc.) is becoming more than I can bear. I have suffered this for 6 months of the patch now.

As far as telling my current Dr. I have a lot of reasons why I do not trust him. I do not believe that he has very much experience w/chronic pain and he outright (and blatantly) ignores any questions I have regarding my pain. He either ignores it completely or changes the subject and talks about my cholesterol, etc. for a half hour. His nurse (and Wife) last visit announced in front of the entire waiting room that since I told them I could not afford the name-brand patch (which helps out working into the third day and costs my $450 a month) that I would either have to go with the generic patch and "deal w/it" or take nothing and go into WD and end up in the hospital. Needless to say, I find this very unprofessional and unacceptable. I want to find a new Dr. and I hope that the pain mgt. Dr. will agree to treat my pain. My current Dr. knows about all of this (w/the exception that I have not told him I have thought about suicide) but I will not tell my current Dr. any of the thoughts I am having or that I find him and his wife unprofessional, I do not trust him and I don't think I ever will. He has also recommended dangerous things like cutting my patches in half (which my pharmacist says could kill me). The pharmacists exact words were "your wife will probably find you dead next to her in bad tomorrow morning if you do that." He also never seems to remember what is wrong w/me. He tries to prescribe medications every visit that I have already been on and that had dangerous side effects for me. I have to tell him the entire story of my chronic pain at every visit.

Anyway, I hope this helps sum it up a little better.

@All

Thank you for the responses. I think I have been dealing w/this pretty well so far but I am coming undone. It helps to know that I am not the only one...

Also, I apologize for the vagueness of my condition. In Oct. of '07 I hurt my back which trying to catch a 50lb car battery that I dropped while working on my wife's car. They do not know exactly what it did (MRI's and X-Rays show slight arthritis and slight scoliosis but not much else) to me but I have had chronic and worsening pain ever since. A failed (botched?!?) epidural procedure in Nov. '08 also sent me into a tailspin. I have only recently found out that the Dr. may have hit or damaged more nerves when she attempted this procedure. That spinal/epidural injection procedure has left me in greater amounts of pain than ever before. I was managing pretty well when this first happened and for over a year after but that procedure has made my pain all the more unmanageable ever since. Also, I am almost 30 years old and was 27 when I first injured my back. In the past (all the way back to middle school) I have had several injuries and broken ribs, etc. due to the neighborhood I grew up in. It was pretty much a gang war-zone and I was injured multiple times. Most Dr.s have told me that these injuries would not have contributed to my chronic back pain but I am not so sure. Over the years I have broken or fractured approx. 6 ribs. I have broken or fractured 3 ribs within the past 2 years, this was during the constant chronic pain I have had since Oct. '07.

I hope this makes things more clear.


Skrape
Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours

Post Edited (skrape) : 6/12/2009 1:57:32 PM (GMT-6)


Mystic_Duck
Regular Member


Date Joined Jun 2009
Total Posts : 52
   Posted 6/12/2009 1:06 PM (GMT -7)   
Thanks for more info, and i think u r absolutely rite not to trust that doctor, and i would tell ur pain doc about ur experiance with him! is he just a general or wat type of doc is this? I would definately get a new doc, because a good one is an indescribable comfort... i know from experiance! i am so sorry u hav to deal with that doctor, the pain is so freaking bad enuf but to hav someone lik that in ur life is hard... let alone someone u need to depend on! but i also wanted to say i find it very suspicious to say the least theat u hav had so many broken ribs.... and its not ur fault i think ur doctor is a lazy *bad word* who is not getting to the bottom of ur pain... one thing my pain doc always says he can treat the pain but i hav to work with my other doc to treat the cause... itll probably a bit different for u cuz pain docs do know much about spine issues... but i would adk ur pain doc for a recommendation for a general or other type of doc to investigate the rib stuff... he should be in a position to know some with good records! Anyway i wanted to say im sorry for what uve been thru and express my ummm anger.....at the actions of ur doctor and his nurse......and so that u know u should get a new doctor, and u r rite not to trust him! so again good luck with the pain doc and i hope u get some relief!
 
"In God's hands, in God's time."
 
"The scourge of life, and death's extreme disgrace, the smoke of hell, that monster called Pain."


skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 6/12/2009 1:25 PM (GMT -7)   
My current Dr. is a Dr. of internal medicine. And yes, he is always more worried about general things that may kill me 30 years from now rather than the one that is killing me (on the inside at least) right now. I want to explain this to the PM but I do not want to come off like I am bad-mouthing another Dr. I don't think that would be a good thing to give that impression; they would probably think that I am going to bad-mouth them to the next Dr.

As for the broken ribs, it is not as much of a mystery as it may sound. I have had 2 or 3 broken from fights when I was a teenager. I grew up on the South Side of Ft. Wayne, IN. To anyone not familiar w/that area, it was deemed worse than the South Side of Chicago (the bad parts!) and was quite bad for gangs, etc. When I was younger, I had been "jumped" by up to 8 people at a time. I have had numerous cuts, bruises, sprains, breaks, etc. I have broken both kneecaps, hyper-extended one of my knees (ouch!), broken some ribs, dislocated both shoulders 3 to 4 times each. I have lost several teeth, suffered concussions, gotten whiplash in my neck and have had several (probably all) knuckles and fingers broken. It was a rough place to grow up. It was kind of like a prison a lot of times, at least that's the best way I can describe it. At any rate, I am no stranger to pain and I was never a complainer. I can deal w/pain when I am injured. I cannot keep dealing w/constant, vile, inescapable pain that never lets up or goes away. If I could even lay down and get a reprieve (as I hear a lot of people can) it would make a world of difference. I cannot sit, stand or lie down w/out unrelenting, agonizing pain. When you break ribs, you have a lot of acute pain, even when breathing and it can last over a month. Even when it goes for that long, I can deal w/it. It is when I see no way for it to ever stop, I start to lose hope.

I should probably add this; throughout all the fights, etc. I was never an instigator. I am 5'5" and weighed about 100lbs soaking wet up until I had the accident w/my back. I have since shot up to 145lbs since I am so sedentary and do not move around a lot. I am getting a gut and you can even see the excess weight in my face. Well, my point was that it would not have paid for me to "start" any fights. I may have been beaten less badly if I had given in and given up my money when mugged, etc. That was where I drew the line. I made them beat me unconscious before I would hand over my stuff. I do not believe that thugs should be able to do whatever they want and I made them work for anything they got from me... The only time I handed over anything was the 4 times I had a gun put in my face. Then I did whatever they told me to. After all, I'm not THAT crazy.

I have broken more ribs recently. I broke two in a fall while getting out of the shower. I had just taken Ambien for the first time (chronic insomnia for over a decade) and I didn't realize how hard it would hit me. I do not even remember falling (it shook the house and woke everyone up) because Ambien is an amnesia-inducing drug. I sprained another rib chasing my dog and falling after she got loose. I broke another rib slipping on ice (a lot of that in Michigan in the winter) and falling into my trunk and hitting my ribs on the lip of the trunk. I also fell on my back the first day I went to this new Dr. in January. The parking lot was snow covered w/ice underneath (something I didn't know) and I hurt my back again pretty bad when I put one leg out of the car and fell on my back across the door jamb of the car.

I have since come to terms w/my limitations and am not very active at all anymore. I use a cane now for stability while getting up and sitting down. I just carry it when I walk. I never thought of myself as accident prone but maybe I should reevaluate that...

As far as my current Dr. goes, I will not trust him, I don't think I can. I don't think he intentionally puts me in this much misery but when I explain and tell him what it's doing to me, he does not care. *shrug



Skrape
Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours

Post Edited (skrape) : 6/12/2009 3:23:53 PM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 6/12/2009 2:23 PM (GMT -7)   

Hi Skrape,

I am so glad to hear that you have found a new PM dr to try. I do hope this one works out because you need a new doc desperately. I remember all the crap you have gone thru with the one you are seeing now.

Please give this new person a chance to see if he can come up with a better plan than where you are now. At this point in the game just about anything would be an improvement for you. Do not count on the new one making it all right on the first visit either, ok? I would make a list of meds you have been on and how they worked, make a list of all test and procedures and what benefit you got from them. No, it is never good to go in and bad mouth a dr to another dr.  I think if you tell him what your dr has done to date, including cutting the patches in half he will get a real good idea of the care you have received. Let him know for sure how you are doing with the patches, thats real important.

Just tell this dr with all the care you have received to date none of it has helped your pain to the point you had hoped it would and that you are getting to the end of your rope. That right there will tell him how you are doing. Tell him you hope he has something to offer that will give you the break you have been looking for. If I remember are you self employed or am I thinking of someome else. If its you tell him how its affecting your work. If you have had tests done be sure to get copies of the films like for an MRI.

Its ok to tell this dr you are disappointed with how your condition is getting worse instead of better. Do not ever come across as being suicidal, that will get you a boot out the door and told to go get mental help instead of pain mgt help.

I will say a prayer that you have found a good dr to help you, I know you need one in your corner for a change. Susie



skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 6/12/2009 2:41 PM (GMT -7)   
Straydog,

Thanks. You are right, it is me who is self-employed. My work had gone down the tubes and my last phone just got shut off yesterday. I am floating the electric to the beginning of July and barely was able to get my wife's car back after repossession late last month. To say that this has affected my work would be an understatement I think. I am barely keeping the electric and the internet up so I can continue to work (I am a software engineer so the cable is a must, not a luxury).

Your insight here is very helpful. I did not think it would be good to tell him/her that I am suicidal, partly because that's not quite the way it is. It is hard to explain well and I am afraid I would be judged before I could get it worded properly. I may be overreacting a bit but it is because I have NEVER had thoughts like those in my life. I am not the type of person to even have that pop into my head. It scares me badly that a "you know, this could all end" type of thought even came up and once it was there, it kind of bounced around some more and scared me even worse that it wouldn't just go away.

I think what I am wanting to convey to the Dr. is exactly what you said, that I am at the end of my rope. I have been getting super-emotional (while I have NEVER in life been emotional before) on a cycle directly related to these patches wearing off. I know WD can play hell on your emotions (Fentanyl especially seems to make me super-emotional) and I am pretty sure that is what is causing at least part of this.

I have come to terms w/the fact that the bast I can hope for is a more comfortable pain level than I have right now. I have been through the motions enough to know that nothing will ever "fix" me. It is all relative at this point. I can be better than I am now or worse, etc. I do know that I am not going to ask for anything in particular from this Dr. and I will go w/whatever they want me to do. I just hope against hope that I can get away from this hellish cycle I am in now. I know I can manage OK when I am not on this particular medication. I just know that I cannot ask for a different medication. I just want them to do SOMETHING for me.

Again, thank you for the help. I get pretty low on those last days before I can change one of these stupid things (patches) and I start to become a little irrational and start thinking hopelessly. I feel like I am schizo or something some days. It helps more than I can explain to have a rational reply to a slightly irrational and hopeless post that I am tempted to delete immediately after posting. Your words help very much.


Again thank you,

Skrape
Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours

Post Edited (skrape) : 6/12/2009 3:49:49 PM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 6/12/2009 3:05 PM (GMT -7)   
Ah Skrape, its those darn patches making you nuts the last 24 hours, please, please, please tell this new dr this. Alot of those patches can be anything from the meds in them not being something your body can tolerate. But, it is common for them to only last 48 hours instead of 72. Listen, I know where you are at with them. My daughter told me how bad I was the last 24 hours on them, and yes, you do get some goofy thought processes going on that 24 hours because you are in essence withdrawing. All, I can tell you friend, is been there & done that with the patches and yes I do totally understand. Mine were increased to 75 from 50 and I had trouble urinating really bad, swelled up like a balloon, so my dr had the sense to get me off of them right then. I have to wonder if you have tolerance issues with medications of any kind. I do and its hard finding medications that I can take, such as blood pressure medication, antibiotics and this was not limited to pain meds. My system is just plain ole wacky and does not like medicines. 
 
I just think if you will tell him how bad you are feeling and how you have done nothing but hope every time something new was tried that it would be the one to give you some relief only to be disappointed. Be sure he understands that you are going downhill healthwise. Same as with your work how you have been hanging on by a thread trying to continue with it-but tell him your line of work requires concentration and the pain level knocks that totally out of wack.
 
I think you will be fine but I will add this final thought. If your appt is on day 3 of the patch-change the darn thing early so he won't think you are a basket case when he see's you ok? I know how you feel on those darn things and you need to have your head on right and thoughts in order when you see this guy lol. Its has just got to get better for you. I do not know of anyone who has tried as much as you have and had the rottest luck with drs. So, its got to get better right? Susie


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 6/12/2009 3:10 PM (GMT -7)   
Skrape, I read your post again lol, the Fentanyl is doing a bad number on you. Yes, the dr needs to know these are really not for you and most likely this dr will be more than glad to get you off of them. I would tell him how bad you actually feel the last 24 hrs leaving out the wacky thoughts that has entered your mind a time or two. Tell him even your wife has commented that on day 3 you are very irritable, snappy, feel nervous. Tell the dr you got online and researched w/d from drugs and tell him thats exactly how day 3 feels for you. Susie


Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 6/12/2009 5:07 PM (GMT -7)   
Skrape,

You never did say what kind of pain (from physical injury, from botched surgery, from diabetes (this is the source of mine)) nor if there are limiting factors in regards to what types of medication you can take.

Have you tried nerve blocks? I question whether you have even seen 1/10 of your options if you have been working with a Primary Care Physicians and not a Pain Specialist who is more targeted in training to your problem.

As I said, I started out with a PCP, who actually talked me into trying a pain specialist. "Here's the book. Pick one of them." Best day of my pain-filled life. I made an appointment that afternoon. THIS is where you are TODAY.

I had been on something else, perhaps still the Methadone which takes a few days to ramp up to working, while we were looking and trying various combinations of meds.

When we switched to the Fentanyl patches, I began almost immediately feeling the loss of the Methadone (24 hours or less). Within 48 hours the pain came screaming in and in less than 60 hours I had NO effect of relief from the Methadone and NO effect of relief from the Fentanyl patches. NOTHING.

Nearly every inch of my body was a screaming mass of pain, and I could do nothing but curl up and cry. I am 53 years old, and haven't cried like that from pain for 40 years or so.

So I went back to the Methadone, and some Hydrocontyn (I believe this is the right one) I had left over for breakthru.

The hydrocontyn is the one that saved me.

I find it hard to believe your new pain doctor can't at least find you a temporary breakthru med that will at least buy you some time.

I can get 100% relief from these, but they are only good for a couple of hours each. I might find relief of this type from several of the short-term medications. Unfortunately, it become prohibitively expensive very quickly with this type of medication.

And we've tested nearly all of the long-term medications for me. Methadone is the ONLY long-term medication that would work. And I take Morphine for breakthru. This is an excellent combination, as well, since the Methadone works to mask the effects of the Morphine. Along with those, I take Lyrica and Cymbalta for the pain I experience. I took Amitryptalin at one point, and many report success with it; it is NOT for me and I went back to Cymbalta, which is also an anti-depressant.

When you are looking at options, don't turn away from ANYTHING.
Dig into each and every option.

Is dependence, or even addiction, that bad if you could LIVE with that option and that option only? It is likely a lifetime decision anyway, this medication combo or another.

That is basically the decision I made for myself. I suggest that a similar scenario might be in your own best interests.

Dependence, and later addiction, is my best option. If I have to deal with WD at some point then I deal with it AT THAT POINT. For now, I deal with the cost of one of the cheapest long-term medication. I feel no effects except maybe my processing power is a bit diminished (I, too, am a developer who no longer develops).

I wish for you the best. Should you ever like to talk about it, e-mail your phone # to me. Our situations parallel each other somewhat, it sounds like. I'd be delighted to take some time to visit with you.


As usual, I must be clear that I am not a doctor, nor am I a psychiatrist or psychologist. I offer up my own experiences only and point out our parallel situations. Please do give it some thought, however.
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer
Meet My Wife And Me


skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 6/12/2009 7:31 PM (GMT -7)   
I originally injured my back about 2 years ago changing a battery out of my wife's car. It had acid leaking out of one of the terminals and I didn't realize it. It slipped out of my hands and me, being the super-smart person that I am, really didn't want to clean up the mess so I stooped down and caught it about an inch before it hit the ground. I felt a big pop and a strange sensation of something letting go deep down and very low in my back. It didn't hurt much at the time. Later I went in to wash up and my back started doing something I had never seen or heard of before. I didn't have a muscle spasm, per say, but more like a seizure. My back started seizing and letting go several times a second. My wife was so concerned (I was thinking it was more like a curiosity at the time) she adamantly demanded that I go to the hospital.

At the hospital, they did an X-Ray and told me that it showed that I was having a back spasm. I am not sure how they can see that on an X-Ray but I assume my back would not hold still long enough to get a decent picture of the bones??? At any rate, they gave me a couple of injections and sent me on my way with a script for 16 Vicodin and I ended up back in the ER a couple of days after that ran out. This time they gave me a shot of Ultram and told me to get lost.

I went to my family Dr. after that and we started a regimen of Oxycontin and Norco. This continued until November of '08 when (due to a misunderstand of sorts) I ran out of medicine early and my Dr. abruptly told me to find a new Dr. without any warning. I ended up in the ER again after my last Rx ran out (he was kind enough to give me one month of Oxycontin after giving me the boot) and I ended up finding my current Dr. (the one that seems to be torturing me) after that.

I have been to one pain clinic before and one of the procedures they did (epidural/spinal injection) really messed my back up bad. This just happens to be the exact same time I ran out of medication early. They did this procedure and it left me unable to move. I told my Dr. three times (in person by appt. in the month after the procedure) that I was taking more medication just to be able to sit up, that I wasn't able to work or basically function. I am not sure if he just wasn't paying attention to me or if... honestly I do not know what happened. In the end, I ran out early and he asked me to leave his practice. And that was that. I was pretty naive about pain meds before this happened but I realize what happened and why now. This is a mistake I will never make again. I will only take more of a med if I have it in writing from the Dr.

Ok, after a brief explanation of how I ended up here I will tell you what all I have done.

Medication:
Oxycontin
Norco
MS-Contin
Ultram
Fentanyl
Flexeril
Skelaxin
Baclofen (a few other muscle relaxers but I cannot remember them all)
Lidoderm
Lyrica (not for long, long story there)
Elavil
Ambien (for sleep, along w/about 5 other meds before I found this one)
Mobic

Injections:
Injection on both sides of my spine into the muscles (sorry I do not know the name of them) - no effect good or bad.
Spinal/Epidural injections (hurt WAY more than they helped, basically incapacitated me)

Therapy:
Pool Therapy
Land Therapy
TENS
At home exercise
Walks
Stationary Bike
Inversion Table
Chiropractor(s)
Massage
Special patches that use electricity to ionize medication into my back (useless)

There is more that I know I am leaving out but that's a pretty good idea of what I have done so far. They cannot find anything that can be surgically fixed so I have not had any surgeries. The X-Rays and MRI's find mild Scoliosis (I had Scoliosis as a kid but they said I grew out of it) and mild arthritis. I have been to family doctors, internal medicine doctors, Rheumatologists, Pain Clinics, etc. I have not been to a Neurologist yet (I have requested it but it hasn't happened yet) so I do not know how that might play out.

Here is a brief example of the pain I am in on a regular basis:

Lower Back:
I wake up throughout the night due to my extreme lower back hurting. This is just about where my spine reaches my pelvis. This is a deep, sick ache that NEVER goes away. It usually gets worse over the course of the day and gets so bad at night that I cannot bring myself to sit up straight. Usually twisting and canting to my left side helps a small amount so this ends up being my usual posture; sitting canted to the left with my back twisted about 15 degrees from my pelvis.

Mid to Mid-Lower Back:
I also have a pain in the mid to mid-lower range in my back. This is more of an acute sharp pain than my lower back is, which is chronic. I usually do not have this pain first thing in the morning. It will develop soon after I begin the day and am sitting up trying to work. It progresses and becomes very, very bad toward the evening. By the end of the day, the pain in my middle back has usually surpassed the pain in my lower back as far as severity goes. As I said, the mid-back pain is more acute and can be very bad whereas the lower back pain is chronic and more dull. The problem with the lower back pain is that it NEVER goes away. When I can lay down for a while, the middle back pain will at least subside a bit or in the case of sleeping at night, can be gone by morning. The best way to describe this mid-back pain is that it feels like someone has inserted a spatula in between my vertebrae and is twisting it. Not so much a stabbing pain as a very sharp pressure and twisting sensation.

Tremors:
I have shook in a tremor-like way since I was approx. 18 (12 years ago). Extreme cold, exertion and bad pain seem to make this a lot worse. When I am in a lot of pain, I shake like a leaf and have been accused of being out of medication and going through WD until I produce my pills/patches and prove that I have not run out. I believe these tremors to be unrelated to the chronic back pain since the tremors started a decade before the chronic back pain did. I am not a Dr. so who knows. More than a few doctors have told me that it is unrelated so I have to defer to them. I am currently on the Baclofen for the tremors but when my pain is bad, I still shake in an almost violent way. I shake on a normal day but during high-pain days, it is very bad and I require a cane to be able to get up and sit down without falling.

I hope this kind of gives you an idea of where I am and where I have been. I have been through a lot but I am at the worst now that I have ever been. I believe that this is due in large part to an ineffective medication with a sub-standard (at least!) delivery mechanism.


Skrape
Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours

Post Edited (skrape) : 6/12/2009 8:41:03 PM (GMT-6)


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 6/12/2009 9:35 PM (GMT -7)   
:-)  
 
     Dear Skrape,
 
     My goodness, that was alot of reading! You have had one heck of a hard time of things these last few years. Ive alot to tell you that is comming to mind! But , ill get important stuff out first.
 
     A friend of mine needs one of her medications to be brand name too. She isnt wealthy or anything. So she contacted maker of the pill, and they were able to help her out with the perscription cost. Hey, every little bit helps. Thou, it sounds as thou youve probably had just about enough of those patches.

confused

     When it comes to your primary care physician I want tell you that how you describe him is frightning. It doesnt "seem" to me that he understands the gravity of his decisions on your life. That alone, would frighten me to no end. Perhaps your pain management doctor has a "recommendation" of who he/she works well with. In my case, all of my doctors work together. I know they are an odd bunch. But they are men and women I trust with my life. They would not hurt me. You should not stop looking until you find someone who understands you as person as well as the physical barriers our "shells" present.  It is okay, and totally normal to not like a doctor and his/her manner of praticing medacine. Sometimes, for what ever reason, two people just dont quite see eye to eye. (kinda worried about that guys other patients thou, my gosh)

 

     As to the scoliosis. I have something they call levoscoliosis. It is my understanding that the degenerative / arthritic changes can cause alot of pain. I too get injections. Though I get them regularly.. sorta. Sometimes works a little longer like 4mos. Another time I made it to my procedure appointment having never gone above 6 pain level. So that really really good.  But, at first, some would work a little while, other areas stayed relativly pain free entire time. So the start up is slow. My start up, to get to where I am now, took about 3mos. from my first appointment with spine specialist. Hang in there and know he is trying very hard.

     Looks like you and I have had similar therapies. You said soemthing thou, and wanted to ask about it. In refrence to your "tremors" you said.

"More than a few doctors have told me that it is unrelated so I have to defer to them. "

       It would be a very good idea to bring this up during your visit. If he doesnt already notice on his own. I bet he can help. If nothing more, than to steer you in the right direction.

     On this last part. I think it is important to tell your doctor about this ~~~>

"Your insight here is very helpful. I did not think it would be good to tell him/her that I am suicidal, partly because that's not quite the way it is. It is hard to explain well and I am afraid I would be judged before I could get it worded properly. I may be overreacting a bit but it is because I have NEVER had thoughts like those in my life."

      It IS super important to tell your new doctor that part. You know how many differant things can miss fire, or over produce / unproduce in the human brain / endocrine system? Alot I tell you. Serious. Think about it this way... Basically when were in pain our bodies are in a high state of alert. And ALL the time.  There are SOOOoOOo many things that can happen in our horomones and glands with chronic pain patients. I knwo that part is awful reality.. BUT! These pain management docs? They know their stuff. Know precisly what to do. What to test for. Wouldnt it be just silly to find out it is all perfectly okay, and they know what to do about it? Without ruining your life (dont you just love the way TV / Movie portray stuff?) Any way. Give it some thought. If it is out of charater or only been happening this last year or two.. it would be well worth your while to bring up these feelings of confusion and desperation.

     Hang in there. You can do it!

*warmest huggs*

     dani


TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 6/13/2009 2:38 PM (GMT -7)   
Dani you misread what Skrape wrote-this has only happened on day 3 of his patch when it is no longer effective and he is experiencing withdrawal symptoms. Susie


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 6/13/2009 8:48 PM (GMT -7)   
Hi Skrape,

Forgive me, but I haven't read the vast majority of the posts on this thread, as my eye is just too bad tonight: lots & lots of pain, and not-so-great vision.

If it were me, I'd be honest with the new doc. No, I wouldn't say flat out that you 1) absolutely needed XXX medication OR else, or 2) imply that you are suicidal, but instead, I would describe for him in detail exactly how this pain is affecting you & your life. Paint for the doc a clear picture of your pain & what your pain has done to you: how it has affected your emotional & physical well-being, your job/your livelihood, your relationship with your wife/kids, your hobbies, etc. Then I'd talk to him about what you can do to get some of your quality of life back. I'd explain that you know that pain meds will not take away all the pain, but would perhaps allow you to be more of your "old self"/more functional. I'd also list for him all of the different modalities (ice, heat, etc(, medications & therapies (including an alternative modalities) that you have tried, & exactly what you are doing at the moment to try & control the pain. I'd leave the ultimate decision in the docs hands & not push him one way or another.

Hopefully your honesty & the effort that you have demonstrated thus far will be enough for your pcp to see how you struggle from day to day.

Best of luck! Let us know how it goes!

Skeye

fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 6/14/2009 1:08 AM (GMT -7)   

Skrape, I have not responded to your plea for help but after taking time to consider what you have said in the various posts I felt compeled to share with you. First, I want to tell you that I accept what you are saying is the absolute truth regarding the way you are feeling. There is a sense of hopelessness that each of us who struggle with CP face at one time or another. I also believe that the degree of hopelessness is not the same for everybody for different reasons. I don't think this is the time or place to even try to identify all the reasons, they just exist.

The main question that you are asking is how do you approach the new doctor with this feeling of hopelessness and share the depth that it has reached and the reason is due to the pain that you have experienced for several years as well as all that the pain has taken away from you. Just as your pain is real, so are all the things that you have lost due to it. How do you share this so he/she understands the seriousness and that you need to find hope. What you are asking is not to have all the pain taken away, but you want to be able to function. What good are you if you can't function? You need to help the doctor to understand what it would mean to you to be able to function. They can't and won't know that unless you are able to share it. That is what Skeye was stating when she talked about painting the picture.

You already have the list of medications that you have tried, the procedures as well as options that you have tried and their results. I would encourage you to comprise a list or at least some ideas that you feel would give you a sense of hope and restore a simblence of normal life. This could help your doctor in understanding what you are asking he/she to do for you. The depression that you are experiencing is a result of that hopeless feeling. The doctor can't turn the clock back to before you were injured and I don't think this is what you are asking for. You would like to be able to sit or stand long enough to work enough hours to help support your family. You would like to be able to find something that will lower the pain level to where every day activities are able to be done. I think this will take the focus off the depression and help the doctor to evaluate what you want and if that is something he/she can help you attain. 

Just know that it will take time as there is not a simple answer and they might have to start over and try combinations of medications as well as diagnostic tools to help them understand what is the source of your pain. You will have to allow there to be time to have the hope return. I hope this helps, as I have read and reread your posts tonight. You are not alone.


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 6/14/2009 3:13 PM (GMT -7)   
Skrape, I am just checking in with you today to see how you are doing. If you are around, please write at least a short post to let us know how you are doing. Just letting you know that we care.

skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 6/14/2009 3:23 PM (GMT -7)   
FatherJohn,

I am here and I am very happy for your reply. Sorry I have not posted back earlier, I am trying to work on some write-ups for the pain clinic appt. on Tuesday. I keep finding myself veering off towards over-explanation. If you cannot tell from my long-winded posts, I always have problems being too detailed. This is an issue w/my work and other correspondence. Sorry!

I woke up this morning on the last 8 hours of this current patch and my back was really bad. I ended up changing my patch about mid-day today and am waiting for it to kick in enough to really make a difference. I did check the calender and this means that when I see the Dr. on Tuesday, they will be able to see what the third day of this patch does to me, even if it is early on the third day...

I appreciate all of your posts here so much. I think I said before that I wanted to delete this post immediately after I posted it. I had done that w/a few others I had put on here recently. I get feeling so bad when these patches wear off completely and with my back hurting so bad, w/the WD on top to boot, man I get so depressed.

I know some of the things in these posts are really hard to read and bring up bad thoughts and memories. I really do apologize for that. I really wanted to let these feelings out somewhere because if I become too jaded about the issues I am having.... like I said, I am afraid of what will happen when I stop being scared about thoughts of doing something stupid. If I stop having fear of it and it starts sounding like a good idea, that is somewhere I really don't want to be.

Well, at any rate, I am hurting pretty bad still but I know tomorrow will be better before it goes back downhill Tuesday. I am trying to remain hopeful about my visit to the new pain clinic Dr. but am trying to not get my hopes up too far. I don't want to come crashing down if I get my hopes up and then this Dr. tells me to get lost. I think I am even having nightmares about it. It could just be the Baclofen (it gives me night-terrors anyway) but I don't think that is completely responsible.

Thanks again for your thoughts, they give me a smile even when my back is so vile. :-)


Skrape
Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours


fatherjohn
Veteran Member


Date Joined Feb 2009
Total Posts : 999
   Posted 6/14/2009 3:41 PM (GMT -7)   
You do not have to appologize for anything. I went through a time recently and found myself writing a post and then deleting it as I read back over it and I sound to depressed and did not like the state I was in. I finally posted and admitted that I am not always on top of life, somtimes I feel I carry more than I should. As per your being to long winded, I don't find that as a problem. When you go in to see the new Dr. I have found that the first visit is the longest as they do want to get to know you so getting your thoughts organized is not bad. I will keep checking in on you and don't be afraid to even post one or two sentenses when things seem to tough. It helps us all to know that someone who nderstands is there. I remember driving down the road and thinking it would be easy to just let go. I even scared my wife one time when I was depressed and I told I was thinking about how I would end my life if I was to do it. I realized that by keeping it in it made it worse. Having a safe place to open up and be transparent at times is so important. I will keep you in my prayers.

skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 6/16/2009 2:48 PM (GMT -7)   
Well I saw the new Dr. today. I did see a head-shrinker first for about 20 minutes. The shrink said I was pretty screwed up and wanted to see me again. My insurance didn't cover this place so I was noncommittal while talking w/him.

I then talked with the pain clinic Dr. and he told me that I should have never had any injections, let alone the epidural injection that screwed me up so bad. He said that there should be something showing on the MRI before doing such a procedure. He did tell me that the Dr. that did that procedure is no longer working at that pain clinic and that they have a running joke that she was the best business they have ever had. I told him I had never been treated the way she treated me by anyone before. So apparently I was not the only one to ever have problems with her.

Well, in the end, this Dr. told me there was absolutely nothing he could do for me. He told me he would recommend to my Dr. that I see a Neurologist. I have requested a referral to a Neuro several times from my Dr. but he has said that since there is nothing on my MRI, he is hesitant to refer me. Hopefully now that I have this Dr. recommending it, I will get to see one.

I am rather devastated that he had absolutely nothing he could do for me. These people only do injections (I think) and he blames the pain killers for most of my continuing pain. I hate it when people do that. If the pain killers caused me pain, wouldn't it be in more places than the one that has always caused me serious pain? Would I not hurt everywhere if the pain killers caused my nerves to be super-sensitive? Why would only my back hurt if my nerves became over-sensitive?

At any rate, another dead end. I don't have the money to follow up w/some shrink who wants to talk about how I feel. Maybe I could talk w/him about the fact that they cannot do anything for me and how this makes me feel inside.... Maybe I could pay him so that I can talk about how I have no money and everything is being shut off? Heavy sarcasm there, sorry.


Skrape
Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours

Post Edited (skrape) : 6/16/2009 3:52:58 PM (GMT-6)


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 6/16/2009 3:15 PM (GMT -7)   

Skrape,

I guess you didn't see my post that if this new guy only does injections to cancel the appt because they do not give scripts for meds. They only do procedures. OMG, I feel so bad for you. Can you go back to your PCP and let him know this, get him to take over until you can see a neurologist?

You simply cannot just give up. I know right nw everything seems to be stacked against you. but please call and get an appt with your PCP. Someone can help you, its just the matter of finding the right dr and that is so hard to do I know.

Hugs, Susie


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, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & decreased circulation in both legs. Too many surgeries to list and too many medications to list. Currently on 16 different daily medications. Intrathecal pain pump implanted June 05.


skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 6/16/2009 3:34 PM (GMT -7)   
My primary doc knows what this is doing to me. He is the one that simply doesn't answer any questions I have about my chronic pain and then jumps up and runs out of the room when I ask a pointed question that he cannot side-step. He will not help me.

He is the one prescribing the Fentanyl patches for me that leave me basically unmedicated and in WD for the entire last 24 hours and the additional 8 to 10 hours after a new patch is applied. He knows all about these problems and will not even answer my questions when I ask him if there is something else we can do.


Skrape
Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 6/16/2009 4:26 PM (GMT -7)   
shocked  
 Well I saw the new Dr. today. I did see a head-shrinker first for about 20 minutes. The shrink said I was pretty screwed up and wanted to see me again. My insurance didn't cover this place so I was noncommittal while talking w/him.
 
Did he atleast confim that the pain was greatly effecting your life? Or was he dismissive? Sheesh, load of help that guy was.
 
Well, atleast they confirmed what you always knew. Did they tell you any course of action the other patients took? Or if they thought you should write someone to tell of your experiences with her?
 
I had hoped your new doctor might be of atleast SOME help. But, this Neuro lead youve been trying to follow up on might be just the answer.... Do you think you can see your reg doc one more time.. long enough to get the referral and run !?
 
keep pressing for Neuro? Maybe now you can finally get your foot in the door. Hope so.
*huggs*
dani
 


TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood

Post Edited (Dani Henson) : 6/16/2009 5:31:59 PM (GMT-6)


skrape
Regular Member


Date Joined Feb 2009
Total Posts : 141
   Posted 6/16/2009 4:42 PM (GMT -7)   
Dani,

Thanks for the reply and the info. I will be seeing my Dr. again and will be asking for a referral to a Neuro. He was hesitant before but w/this guy saying I need to see one, it should do the trick. I would love to find another Dr. but I have to keep this guy on good terms since he is the only one keeping me from being completely unmedicated and totally screwed. I am going to call my Dr. again tomorrow to see if the pain clinic guy has gotten in touch w/him yet.

My wife is pressing me to go to a guy in Kalamazoo that does back surgeries. He specializes in a newer surgery that is for back conditions that do not show up on an MRI. I am trying to hold off on the surgery front until I have exhausted everything else first.

I don't think I had enough time w/the head shrinker to really get an idea of what he thought. He was basically saying that hey, we are just scratching the surface here and you are having some emotional problems dealing w/all this. I didn't want to argue w/him that all my emotional problems are directly related to being in so much pain and not being able to put in the work time I need to. If I can get the pain more under control, the other problems will fade away. I have never been a depressive person and it has taken a lot to get me to this point. Most people don't want to hear that hey, the only real problem I have is the constant, never-ending pain I am in...

I have asked the gas and electric companies to let me defer some payments so that I can try and get some stuff together. I am not religious and do not belong to a church. I would feel very hypocritical trying to ask a church for help. I have never been religious and I think it would seem like I was just looking for a handout. IDK, maybe I am wrong there but I guess it is just the way I assume it would be.

I will let you guys know how the Neuro works out and I am just going to have to try and live through the medication issues and the crazy pain, WD, et all. I just really, really wish someone would at least help me to not be in hell the whole time I am trying to sort all of this out.


Skrape
Fentanyl Patch - 100mcgs x 72 hours
Baclofen - 10mg x 8 hours


Mrs. Dani
Veteran Member


Date Joined Jun 2009
Total Posts : 2787
   Posted 6/16/2009 5:18 PM (GMT -7)   
Oh, gosh
I went back and edited out the resources I used. I was embarrased. Im sorry. Hope we dont confuse anyone trying to read up.
 
I keep thinking of the comedian? His name is Dane Cook.. everytime you mention your primary care physician.
 
just wanted to say im sorry i edited my post hope dont confuse anyone.
 
*huggs*
dani
TWO roads diverged in a yellow wood,  
And sorry I could not travel both  
And be one traveler, long I stood

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