Update/Vent (Again!)

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misterkatamari
Regular Member


Date Joined Jan 2011
Total Posts : 374
   Posted 4/24/2012 12:39 PM (GMT -6)   
Hey everyone, I just got back from my visit to the Pain Clinic (again), and as usual I decided to come on here and vent/update what was going on. :P

My pain has been the same since all this started for me on December 31st, 2010. So it's been long enough that I am just overwhelmed and feeling more and more depressed/tired of living like this. I try explaining this to my doctors, and while the pain doctor is super nice and seems very well versed...I just don't think he really understands the gravity of the situation I'm in and how bad I hurt. My life basically stopped moving when this started.

But yeah, I went to see him yesterday and he did mark down that I haven't had much relief and still have the same or slightly worse pain symptoms. However, he said he didn't want to 'muck with' the formula that I am on now...which is Tramadol 50mg. I don't understand why he'd say that he doesn't want to “muck with” a formula that himself has written down as being ineffectual in my opinion. If something isn't helping after a year, isn't that exactly when you SHOULD “muck with” it?

He wants to see me again after I have a nerve conduction study done by my Neurosurgeon. The Neurosurgeon wants to get the conduction study done because he can't tell by my other tests which area of my spine is actually causing my pain...and so he can't endorse or feel comfortable with surgery yet. I don't get the test until the 31st of May. So the pain doctor doesn't want to see me until I get this test...meaning I'm going to have to deal with this pain on the same old meds for another moth—at least. Then I have to schedule the pain doctor again and probably wait to see him again, and who knows what he'll say then?

I live in a rural area and have few options in terms of providers. I also don't want to seem like I am shopping around or something by switching to his partner doctor at the same practice. I don't want them to 'blacklist' me or whatever, or get some preconception about my motives or demeanor. I just feel so hopeless and so tired of this constant pain. :-\

The Pain Dr. did say I could take 2 tramadol more a day, but it isn't like its a stronger dose or anything. So I really just felt frustrated. I might talk to my general PCP about this, since he is the one who actually writes the Tramadol scripts. I just don't know. Ugh. The Pain Dr. said he wished he had some 'magic' to help me, and I was just thinking “Well, you could try some different types of medication before resorting to Magic, couldn't you?”

But yeah, I've just been having it rough all around lately. I'm hanging in there, but am just tired of the lack of movement with my doctors. On one hand, they seem almost hopeless that I am going to feel better due to surgery or anything...yet they also are giving me no short term alternatives. So...yeah. 'Same old stuff'. :P

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 4/24/2012 1:03 PM (GMT -6)   
Sorry to hear you are having such a rough time....I'm glad they are at least doing the nerve conduction study to try and narrow down more from where the pain is coming...Hopefully then they could do injections right into that area...

I can't remember if you are on nerve pain medication as well?

And I'm a bit confused...but you say the Dr. is allowing for two more Tramadol a day.....but you say, "it's not like this changes the dose or anything"....

That would be another 100mg a day of Tramadol which is a pretty decent dosage increase in terms of that medication....

So...hopefully after increasing this in the next days/weeks it will help more until the study is done...

Again...I apologize for not knowing the other meds or things that you do to help your pain.....but along with nerve pain meds....are you taking a muscle relaxer?

How about the use of a TENS unit? Massage....acupuncture....PT...aqua therapy...things like this?

Unfortunately we can only rely on an opiate to be one small way to help our pain...

But I do feel for you as this has been going on so long...Another thing that helped me was seeing a therapist to help with the emotional side of living with chronic pain...

So...I really hope that the 100mg dosage increase will at least add something to helping with your pain....

Sending some hugs...
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

misterkatamari
Regular Member


Date Joined Jan 2011
Total Posts : 374
   Posted 4/24/2012 1:20 PM (GMT -6)   
Thanks, SB.

First, by the Tramadol...I mean that the dosage of it at one time is still the same. I still just take 50mg at one time, I just can take more of it in a 24 hour period...but if that 50mg dose isn't really doing anything, then being able to take it more times a day doesn't really seem like it'd matter.

I'm also on Naproxen and Robaxin (muscle relaxer). Other than epidural and facet joint injections, the pain doctor hasn't tried any other methods of pain relief or rehabilitation (yet). He didn't suggest it unofficially, either, so I haven't really asked my PCP about it. I thought maybe he'd mention physical therapy, but I think that he believes it is sort of nerve-related so perhaps physical therapy wouldn't help with that? I do have other chronic pain from the scoliosis also, which I do have success in treating with the meds I am on and occasional PT...but the main pain I've had since 2010 is different from that muscular-like pain.

Anyhow, thanks again. :)
--Patrick, aka Misterkatamari

I'm active on several boards. Main issues are: Chronic Pain due to Scoliosis & 2 Herniated Discs, possible DDD and arthritic facet joints. Also active in the Depression/Anxiety boards. Meds include: Prozac 40mg, Xanax .5 mg, Tramadol 50mg

“We must let go of the life we have planned, so as to accept the one that is waiting for us.” - Joseph Campbell

di43
Regular Member


Date Joined Jan 2012
Total Posts : 108
   Posted 4/24/2012 4:40 PM (GMT -6)   
Hi Mister

I`m sorry you are having such a rough time. I remember going to doctors who would listen but were extremely reluctant to look at my medications. I finally had luck when I saw a pain specialist and he was willing to keep trying things until I found something that worked. One day in the meantime I was at work and had the worst breakthrough pain I`ve ever had, I had to leave work and could hardly move and thought I was going to have to go to the hospital. I went to my GPs office and saw a different GP than my regular doctor and immediately he took me seriously. But it was a long battle so hang in there and I am sure eventually you will find someone who will really hear you. I have seen all sorts of doctors and even though some were very nice and did listen they still were not keen on opiates but others didn`t even question it, they knew I was in pain and just believed me. Once you find a doctor who understands it makes a huge difference. That comment from your doctor about not wanting to muck with things even though the medication isn`t effective is very frustrating.

It must be very hard being in an area where you are limited to certain doctors and of course you don`t want to be labelled a doctor shopper. But I think if your pain is so bad you have the right to do something about it. The right doctor will know you are serious. Can you go into your doctor next time the pain is severe or ring and say you can`t wait to be seen until May 31st?

Hang in there. I am thinking of you,
Di xxx

Snowbunny21
Veteran Member


Date Joined Jan 2010
Total Posts : 3557
   Posted 4/24/2012 4:46 PM (GMT -6)   
Can't you take those extra two pills any way you want them as long as you don't exceed the total amount daily?

My Dr. allows me to take one or two at a time...(I'm on OxyIR 5mg)...but the principal is the same as it's for my breakthrough...

Maybe you can call and ask him this as that might help to be able to take 100mg to last the 4-6 hours...
SB and "the pup who snores loudly" 
 
ACDF C5-C7, (no hardware), with autograft bone Nov. 2001
(reabsorption of bone 2 years later...still lost in body..expect to burp it out at anytime..haha")) 
ACDF with hardware, allograft bone Nov. 2005 
Anterior and Posterior CDF, allograft bone with BMP, removal of old hardware, use of titanium plates, rods, screws, & kitchen sink (lol) Oct 2006
 
 

misterkatamari
Regular Member


Date Joined Jan 2011
Total Posts : 374
   Posted 4/24/2012 4:59 PM (GMT -6)   
Snowbunny21 said...
Can't you take those extra two pills any way you want them as long as you don't exceed the total amount daily?

My Dr. allows me to take one or two at a time...(I'm on OxyIR 5mg)...but the principal is the same as it's for my breakthrough...

Maybe you can call and ask him this as that might help to be able to take 100mg to last the 4-6 hours...


Hmm, I could always ask my PCP too since he's the one that writes the script. Depending upon what he says, then maybe I'll start to try that. I just wish the Pain Dr. was a bit more aggressive in treating this instead of just having me stay on the same kind of medications. But yeah, thanks for the tip I'll ask my PCP tomorrow. :)

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 4/24/2012 6:23 PM (GMT -6)   
Well at last your getting the nerve conduct study, it might be of some help...

Let us know how things go with your pcp, tomorrow, will be thinking of you...

Many well wishes and Prayers, hopefully things will turn around for you soon...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

Elbee
Regular Member


Date Joined Apr 2012
Total Posts : 50
   Posted 4/24/2012 7:58 PM (GMT -6)   
For what it's worth, my doctor said it's safe to take up to 100mg at a time of tramadol if I'm having particularly bad pain, up to 400mg total in a day. He warned me that it's important not to go over 400mg/day because more than that can cause seizures. I avoid going over 200mg/day because I get myoclonic jerks with higher doses of tramadol.

Anyway, I'd talk to your doctor about taking 100mg in one dose and how to space your doses if you do take 100mg at once. I know sometimes I have pain that 50mg seems to do nothing for, but 100mg does the trick in really dulling the pain down a lot. The trade-off is that a 100mg dose of tramadol make me feel pretty high (for lack of a better word), so I can't take a 100mg dose if I need to drive or if I'm at work.

I hope you figure out a dose that works for you or a medication that works for you! I'm still daydreaming about some magical pill that will make all my pain go away...

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16294
   Posted 4/25/2012 7:51 AM (GMT -6)   
Patrick. I hear your frustration and understand why too. All I can add is this, I had a dr very much like yours and two years later I was still on the same dose of meds, things kept getting worse. It was not until I got under the care of a another dr that my situation changed. Your dr very much like mine had his head stuck in the sand and thats just the way things are going to be as long as you allow it. You do not have to stay with this dr, you can try to find another dr, its a real pain and you don't know what you will end up with, I know. Talk to your PCP about this dr and get some input from him about finding a new dr.

Take care....Susie
Moderator, Chronic Pain Forum & Psoriasis Forum

misterkatamari
Regular Member


Date Joined Jan 2011
Total Posts : 374
   Posted 4/25/2012 4:11 PM (GMT -6)   
Thanks so much, everyone.

I started to take the 100mg after talking with the pain doctor, actually. He said it was fine to take 100mg at once, as long as I didn't go over the 6 pills per 24 hours. So right now I have taken four pills total, and I honestly haven't noticed too much of a difference. Maybe it's because I was on the 50mg for so long that I'm tolerant of the Tramadol now? I'm not sure, but I'll keep trying the 100mg for now.

The worst part of it to me is that I actually really personally like the pain doctor and I think he's super good at his job. I just think that my age and special case sort of make him approach me differently than he would a 47 year old factory worker who threw out his back at work...which in some ways is good, but in other ways its bad because I feel like it probably makes it harder for the doctor to relate to me and understand what I'm going through. I'm still hearing the "You're too young to have all this wrong with you!" every time I see a specialist, even my psychiatrist said it when I told him about my back problems. I understand that they mean well, but I don't really care how old I am--I just want help, the same as anyone else! lol

Also, to Howard101, I may tell him something along what you quoted the next time I have an appointment, if he still doesn't really make any changes to my treatment.

So yeah, basically I'm feeling the same as usual today, but reading everyone's input has been really helpful in keeping me moving forward. :P Thanks again.
--Patrick, aka Misterkatamari

I'm active on several boards. Main issues are: Chronic Pain due to Scoliosis & 2 Herniated Discs, possible DDD and arthritic facet joints. Also active in the Depression/Anxiety boards. Meds include: Prozac 40mg, Xanax .5 mg, Tramadol 50mg

“We must let go of the life we have planned, so as to accept the one that is waiting for us.” - Joseph Campbell

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 4/25/2012 6:59 PM (GMT -6)   
Oh my gosh, I get that "you look to young," as well...it's aweful that we get stereo typed like
this, so what if we look young...young people have things going on with them too...so your
young that shouldn't even be a factor in this pain game Patrick...it really shouldn't be...
young kids get RA, why should they get treated differently than someone whom is 47 (as you put it).

I get that same looks as I look like I'm 25, and it is hard to deal with that attitude...
and I'm 46 yrs old.... Maybe the next time your in the office with that doctor ask him
how he treats children with RA...and why he has a problem with you...

Many many well wishes to you, but you do need to get better treatments protocol on your pain levels
not on how young you are....

misterkatamari
Regular Member


Date Joined Jan 2011
Total Posts : 374
   Posted 4/25/2012 8:58 PM (GMT -6)   
Chartreux said...
Oh my gosh, I get that "you look to young," as well...it's aweful that we get stereo typed like
this, so what if we look young...young people have things going on with them too...so your
young that shouldn't even be a factor in this pain game Patrick...it really shouldn't be...
young kids get RA, why should they get treated differently than someone whom is 47 (as you put it).

I get that same looks as I look like I'm 25, and it is hard to deal with that attitude...
and I'm 46 yrs old.... Maybe the next time your in the office with that doctor ask him
how he treats children with RA...and why he has a problem with you...

Many many well wishes to you, but you do need to get better treatments protocol on your pain levels
not on how young you are....


Thanks Chartreux!

I'm 23, so I get that a lot. The nurse at the pain clinic even said something like, "It's nice to see a young face. You're the youngest I've seen here." I got what she meant, but she seemed embarrassed at first and apologized, and said that she didn't mean that it was good that I was hurting. lol!

The weird thing is, this pain Dr. specialized specifically in the treatment of pain in children with severe scoliosis and other spinal defects. So I don't know, maybe since I'm sort of between an adult and child to him he is conflicted on how to approach me. He says things like, "Well we don't want you to feel too doped up, because then you wouldn't be able to go about your normal life." My life is far from normal ever since this 'injury' occurred in 2010. All I want is to have some relief. I sit around all day as it is, so I really doubt that trying different medication that may have side effects is going to make me worse off than I am now. So yeah, I just think he doesn't get the magnitude of how bad it is.

I mean, I even told him my whole story basically. I'm 23 years old, had a part time job as a waiter for two years, and was attending college full time. Then this injury happened in 2010, and I am basically disabled and in really bad shape both mentally and physically. I have to have people drive me to appointments because sitting up is really painful, and it makes it impossible to concentrate even if I could bare the pain. So I mean, he knows all this. I always have sometime come with me and I have to tell them that they're my ride, just in case there is some emergency. I mean, how many guys in their 20s have to have someone drive them to doctor appointments for over a year? You'd think that would clue you in that something is seriously wrong, as pretty much no one else in my shoes would want to relinquish so much of their independence for this stuff. :[

AngMichelle
Veteran Member


Date Joined Apr 2006
Total Posts : 932
   Posted 4/25/2012 9:13 PM (GMT -6)   
I am 27 and I have heard so many times, "at your age I don'to want to do this or that". But if at my age, these things are happening, why can't they be treated the same way?
Also, when I went to the pain doc, I have one in my area that will take my insurance, he said, "Our first rule is no narcotics, unless you have cancer,.....". Then they want to do crazy things like plasma injections when I just need about 4 months of pain managment for an injury.
Finally, My PCP just really sat down and listened to me and is helping me. I was wondering since your PCP perscribes your tramadol would he be willing to try something like hydrocodone, at least for breakthrough to get you though till you get some more answers? Its hard being young and your life being totally effected by pain. People just don'to get it.
Be well,
Ang
27 years old
Dx's: Depression/anxiety, Non-Epileptic Seizures, Migraines, repeat joint dislocations, suppressed immune system
14 Major surgeries
Meds: Cymbalta, Vyvanse, Valium, Trazadone, Ambien, Loratab

misterkatamari
Regular Member


Date Joined Jan 2011
Total Posts : 374
   Posted 4/25/2012 9:18 PM (GMT -6)   
AngMichelle said...
I am 27 and I have heard so many times, "at your age I don'to want to do this or that". But if at my age, these things are happening, why can't they be treated the same way?
Also, when I went to the pain doc, I have one in my area that will take my insurance, he said, "Our first rule is no narcotics, unless you have cancer,.....". Then they want to do crazy things like plasma injections when I just need about 4 months of pain managment for an injury.
Finally, My PCP just really sat down and listened to me and is helping me. I was wondering since your PCP perscribes your tramadol would he be willing to try something like hydrocodone, at least for breakthrough to get you though till you get some more answers? Its hard being young and your life being totally effected by pain. People just don'to get it.
Be well,
Ang


Thanks so much, I hope you get the help that you may need too. :)

My PCP is a no-narcotics clinic. Since tramadol isn't considered a narcotic to them, they can prescribe it for whatever reason, even though it has similar effects on most people. I'm not in a substance agreement with the pain doctor, so I could ask my PCP about what you mentioned but I think he'll probably just tell me to bounce it back to the pain doctor. eyes

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 4/25/2012 10:29 PM (GMT -6)   
Your vent is well justified from the sounds of it. I feel bad for you, and others here, that have PM doctors of that mindset. If they lived a day in your body, I am certain they would have a different view about what they would need to really control the chronic pain. I am in the fortunate category (in a weird way), in that my oncologist is also a certified pain specialist, and with my diagnosed cancer pain, he has been excellent in keeping my chronic pain at bay, and he doesn't hesitate to increase the meds to preserve my diminished quality of life the best he can. The doctor or his nurse still call or e-mail me about every 2 weeks, to make sure that I am doing ok between visits. When I start to get low on meds, all it takes is an e-mail from me, and his nurse quickly mails me a new script, or sometimes, to make sure I don't run out, she will call my drugstore directly.

Hope you find a better solution for your situation, or perhaps a more compassionate doctor to help you through your bad times. My best to you.

david in sc
Age: 59, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, original catheters 63 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8, 12/11 14.0
Other: Spent total of 1 ½ years on 21 catheters, had Ileal Conduit Surgery 9/10
Member of Prostate Cancer & Chronic Pain HW Communities

AngMichelle
Veteran Member


Date Joined Apr 2006
Total Posts : 932
   Posted 4/26/2012 1:16 AM (GMT -6)   
the world of CP is NO FUN! But we are STRONG!
27 years old
Dx's: Depression/anxiety, Non-Epileptic Seizures, Migraines, repeat joint dislocations, suppressed immune system
14 Major surgeries
Meds: Cymbalta, Vyvanse, Valium, Trazadone, Ambien, Loratab

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 4/26/2012 8:45 AM (GMT -6)   
Maybe it is time for you to consider another pm doctor, not a pediatric pm doctor...

However, do leave a letter for this doctor stating that you feel it's time you got better
care and that maybe a regular pm doctor can help you better with your treatments...

Just something for you to consider at least...but get the nerve testing done first...
many well wishes to you...
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

newname
Regular Member


Date Joined Jun 2011
Total Posts : 95
   Posted 4/26/2012 12:20 PM (GMT -6)   
As someone who uses Tramadol for back pain, I can definitly concur that it doesn't always get the job done in terms of relief, especially if I only take one at a time. When it comes to your doctor not wanting to "muck" with your current pain medication and give you something different, I have to wonder if he's being totally honest. Maybe I'm being cynical here, but I fear you may be a victim of the current hysteria over painkillers. I've been on tramadol for nearly two years now, and until recently my doctor would refill it with no problem. But the last few times I've asked him to, his response has been something along the lines of, "Are you sure you need it"? I feel like saying, "Would you like to switch backs with me for a few days and see if you think I need it or not?" Maybe if he knew what it was like to not being able to stand up straight at times because his back pain was so intense, he wouldn't question whether I need the medication.

lynneann
New Member


Date Joined Apr 2012
Total Posts : 17
   Posted 4/26/2012 12:38 PM (GMT -6)   
I'm sorry.  Tramodol was like ice water to me. It sounds like you need a new doctor.  I found one after 2 years...surgery was 2/10. Muscle pain. Second surgery gave me nerve pain. Now I have had an rfa (thank you dear God!) and take meds. I hope you find better care someplace. This subject is getting to be front and center.
I just posted I think it's called...Finally we get to be heard'   (?) about a tv show on tonight about us not getting the right treatment. I hope you can read it.  AND find a new doc. I was getting so desperate...I was making 2-3 appts at a time. Tired of being turned away.  I'd been though scores of doctors...no treatment at all. Finally found a doc who was referred by a nurse. I learned on forums that what I needed for nerve pain was an rfa. From there my treatment slowly got better.  I'm still disabled with pain. But am functioning so much more. Stairs are impossible...I crawl and grunt and cry out to climb/crawl up. Walking is hard. I can do some but not much. Have a scooter now.  I can breathe normally and can even dance a little bit!  So know relief IS out there. You may have to travel to find it but it is out there. Please never consider it to be over....IT IS NOT.  YOU CAN MAKE IT.  One monkey (doc) don't stop the show. I was going to get a drug pump because I couldn't get medication. Pumpsters on yahoo told me that wasn't a good reason for a pump. Glad I found them and listened and waited. I'm still in pain. But I can live a little now and thank God for the relief I do have. And you will find it too.
Take care.     
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