Coming off Ultram

New Topic Post Reply Printable Version
28 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 1/9/2008 10:36 AM (GMT -7)   
Hi all,
I've been on ultram for about a year and am currently taking about 250mg a day.
I am really feeling the need to get off. I am taking it for leg pain that not one doctor has been able to diagnose. I just know that over 2 years ago, I pulled my back, and after that I got pain in both legs and also in my left hip. The docs say the mri's show nothing outstanding. I've had epidurals, etc. In full, I've had my share of docs and no answers and will continue to pray to God because man obviously can't help and I do believe God can.
I was an exercise nut for about 26 years and it may be my fault, I don't know. I am just know I don't like feeling addicted, and I do feel addicted to ultram. Sometimes I am in much pain and need it other times out of habit I take it because I don't want to spend the evenings in pain. Sometimes it seems to work, sometimes not.
Anyway, I'm only now looking for any suggestions to get off. I am not looking for a description of addiction. Is slowly cutting down the only way and is it what works for you the only answer?
Thanks for any ideas.  
Swallow your pride, you will not die, it's not poison.- Bob Dylan 


mama2654
Regular Member


Date Joined Dec 2007
Total Posts : 43
   Posted 1/9/2008 10:38 AM (GMT -7)   
Hello. I am not too familiar with Ultram. Although I do not think it is a narcotic. I may be wrong. I woud just cut down your dosages though, just to be safe. Good luck.

Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 1/9/2008 10:50 AM (GMT -7)   
mama2654 said...
Hello. I am not too familiar with Ultram. Although I do not think it is a narcotic. I may be wrong. I woud just cut down your dosages though, just to be safe. Good luck.
Thanks for replying. They call it a non narcotic which means nothing. But I believe it's addictive, it's a synthetic opoid. Why they say it's non narcotic, I do not know. It's suppose to be not as strong and does actually ease pain but right now, I am considering cutting down and maybe getting off. Thanks again. 
Swallow your pride, you will not die, it's not poison.- Bob Dylan 


stenoman
Regular Member


Date Joined Jan 2008
Total Posts : 20
   Posted 1/9/2008 11:04 AM (GMT -7)   
I was taking Ultam and Ultrax for two years following a couple back and neck surgeries.Although it brought me very little relief once I stopped taking it I could tell it was somewhat beneficial. I have been a very ignorant spine surgery patient and far too trusting in the rudementary info received from the docs....for example, I simply stopped taking the Ultram because I didn't think it was helping. My doctors never warned me of the need to taper off. That was probably a very dangerous thing to do since my body had grown accustomed to it for over two years...the good news is I had very little withdrawal symptoms......not even on the radar screen compared to going one day without the Oxycodone I'm living with these days. A few years ago all of the info I read said Ultram wasn't a narcotic but I'm finding more and more publications that say the doctors and the legal system are changing their opinions and treated just like morphine, percocet, etc. Just like so many of the posts I've read since stumbling upon this site last week......My suggestiin is to taper off of the Ultam as best you can based on your pain and circumstances. Don't make the same mistake I did and try to figure every thing out on your own....call your doctor or any medical provider and seek qualified advice. Best of luck to you. I hope you can do well without the Ultram and find some relief.

Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 1/9/2008 8:51 PM (GMT -7)   

You had very little withdrawal symptoms? that is excellent news. May I ask how much were you taking? I am still in pain, and struggle within myself. I want to be on nothing, but a short ride and walking around Walmart was an easy reminder that this pain, whatever it is, is not going away, so if I am fortunate enough to be relieved of the pain, it will make it easier to quit but it's hard not to take it when it does give some relief. I go through periods where it isn't too bad but it has not even been really diagnosed. Anyway, I appreciate your response and am happy to hear your withdrawal wasn't too bad. I had read horror stories. I know that you can never just stop a drug, in many instances I found I knew more than the doctors, who I saw.  Best to you, God bless.

 


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 1/9/2008 9:59 PM (GMT -7)   
Hi Denim,

Stenoman gave you some great advice as far as my experience goes. I'm on oxycontin...ultram didn't do anything for my pain. Going off any medication should be done with doctor's advice. Some are very dangerous to go off cold turkey, others are OK. Without asking it's just not safe. Also the amount you are taking makes a difference.

I know you don't need a description of addiction. For my money I don't think you are addicted...your body is dependent on them. Taking them 'ahead' of pain is actually a good practice. It takes less medication to stay ahead of the pain as opposed to playing catch-up.

If you don't feel like talking to your doctor you might try the pharmacist but at least taper...no cold turkey.

Good luck and stay in touch,
Chutzie
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 1/9/2008 10:11 PM (GMT -7)   
Thanks Chutz, believe me I'd never just go cold turkey. My pain is not gone, but every so often, I play with the thought of just getting off of it but, everytime, it seems to be getting a bit better, I seem to take a step back but try to stay at the same dose. I still have that hope of it going away, the way it came. Thanks for responding. Blessings, Barbara~ 

stenoman
Regular Member


Date Joined Jan 2008
Total Posts : 20
   Posted 1/10/2008 10:28 AM (GMT -7)   
Dear Denim,

To piggy back on the good info Chutz provided I know that when i was taking Ultram for a long time I did a little research and found out that like so many pain meds, they don't know exactly how it works. A lot of the meds are being used for pain as an off-label approach to pain management. The worst experience I had with that was the medicine Neurontin (sp?)....it was too tough for me to handle.....made me feel as if I was living in a dream state...wacked out. I think it wa developed for MS MD patients. Well, ignorant me i just stopped taking it...bad mistake. It was similar to Ultram in that the scientists didn't know exactly how it worked but they found it to "confuse" the nerve messages and receptors so chronic pain suferes found some relief. They typically have you build up slowly to crazy high levels and "kinda: saturate your body with it........after horrid effects of cold turkey I learned a long time later while studying Ultram that you should never stop those type of meds cold turkey....I almost took myself out! In my experience Ultram was a very mild pain medicine and I barely noticed when i stopped taking it... cold turkey again...I didn't feel bad but i probably should have tapered to avoid any possible dangerous side effects or results. It was only after I stopped taking Ultram that I realized it did give me a very slight sensation of overall well being.....not like the oxycodone family (opiats?) but after stopping a two year Ultram program and then taking one or two a week later I noticed that slight "feel good mentally and emotionally". That is when I realized it probably did help me deal with the pain although it didn't do much to mask or eliminate it. Hope you are doing well...
several spinal maladies including stenosis throughout, C-spine fusions with instrumentation 2000, L-spine fusions with instrumentation 09-11-2001, anky, spondy...you name it! Was told "it was all in my head" for 45 years until impengement became so bad it affected functions such as  heart beat, vision, breathing, etc. Wish their misdiagnosis were correct!


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 1/10/2008 2:36 PM (GMT -7)   
Thank you very much for your reply. That's 2 people here not having a problem getting off. I pray for the day I don't need it at all, but I do feel that it does help and really don't want anything stronger. How many mgs. of Ultram were you taking?
I was given Lyrica, and that was the worst for me, I woke up the next day feeling drunk and like I was walking on a slant, very scary. But I know they say stopping Ultram cold turkey can cause seizures, but I would never cold turkey it anyway.
 
Thanks again, Barbara  
Swallow your pride, you will not die, it's not poison.- Bob Dylan 


razzle51
Veteran Member


Date Joined Jan 2005
Total Posts : 763
   Posted 1/10/2008 2:52 PM (GMT -7)   

First of all consult your dr. . Do not do it by yourself . A phone call is free. nono

I take 400mg a day and I dont think I would had that big a deal getting off. But will do it under a DRS advice


Syringomyelia T4-T10
Chiari Malformation
Decompression Surgery 1999
 
"Remember That Life Is Short!!!" Life is short, break the rules, Forgive quickly, Love truly, laugh uncontrolably, And never regret anything that made you smile. <!-- / sig -->
 

 
 
 



Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 1/10/2008 3:11 PM (GMT -7)   
I understand what you are saying, but you must have good docs near you. I haven't had those experiences. I have found many times I know more than the doctor. In fact I told the doctor how I was going to do the last detox I did. I am sure he would tell me what I already know. Wean yourself off of it. Thanks for your response though. I have read enough and been through enough to know what you would expect doctors to know but they don't, unless you are fortunate to find one that actually knows that combining certain meds can be very dangerous. I've had doctors that didn't even know that.

stenoman
Regular Member


Date Joined Jan 2008
Total Posts : 20
   Posted 1/11/2008 1:28 PM (GMT -7)   
Dear Denikm, Sorry for failing to include my dosage or you.....it's been a few years but I think I was taking aproximately 400 mg per day but I didn't take them in the middle of the night so it was more like a 600 per day dose but skipping the two 4 hour intervals at night.. did that make any sence? Perhaps a better way to say it was that the pills were 100 mg each and I was to take them one every four hours which i did while awake but skipped while retired for the evening. If I took eavery dose i was supposed to it would have equated to a total of 600 per 24 hour period. Hope this helps. Based on everything I've experienced and learned I don't think you would have very strong withdrawal symptoms...have you tried to taper yet? I can't keep these message board threads straight.. sorry. Jim
several spinal maladies including stenosis throughout, C-spine fusions with instrumentation 2000, L-spine fusions with instrumentation 09-11-2001, anky, spondy...you name it! Was told "it was all in my head" for 45 years until impengement became so bad it affected functions such as  heart beat, vision, breathing, etc. Wish their misdiagnosis were correct!


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 1/11/2008 2:38 PM (GMT -7)   
Hi Jim, Thanks for writing. I never knew or heard of 100 mg pills, just 50mg and an extended
release one of 200mg.
I do know the most they say you can take if not elderly is 400. But whatever, it is good to know you had no problem coming off. I'm not going to taper off right now. I get this feeling of doing it but when pain returns, I think how can I or should I? I guess I'll know when I should. I appreciate your answers though. I had read horror stories coming off of it. Best to you, Barbara
Swallow your pride, you will not die, it's not poison.- Bob Dylan 


stenoman
Regular Member


Date Joined Jan 2008
Total Posts : 20
   Posted 1/13/2008 8:02 AM (GMT -7)   
Dear Barbara,
 
I know the amount I was taking was correct but it's been so long I am probably confusing a single pill like I've been taking the past several years with the need to take multiple pills to achieve the 100 mg dose of the Ultram. I'm sorry my memory doesn't serve me on this one. I think I actually have a little mental block about all of the meds since I've really had a hard time with negative stereotypes from doctors, family, friends and pharmacies....I hope I haven't lost any credibility with you because I was genuinely trying to share a positive withdrawal experience with you to ease your concerns. Out of all of the meds for pain I've taken over the years...Ultram was the only one that didn't have the horrible withdrawal symptoms. I think feeling a little "off' with a slight headache may have been the most intense reaction of all. Not bad compred to my monthly withdrawals from Oxycodone....I've got to find a way off of that stuff and still be able to function...work, family etc.
 
I love the Dylan quote....he's one of the best modern poets ever as far as I'm concerned...along with E A Poe.  
 
Best Regards,
 
Jim
several spinal maladies including stenosis throughout, C-spine fusions with instrumentation 2000, L-spine fusions with instrumentation 09-11-2001, anky, spondy...you name it! Was told "it was all in my head" for 45 years until impengement became so bad it affected functions such as  heart beat, vision, breathing, etc. Wish their misdiagnosis were correct!


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 1/13/2008 8:36 AM (GMT -7)   
Jim, you haven't lost any credibility with me at all. The bottom line was you were giving me a positive answer in that it wasn't hard to get off of. The monthly withdrawals of oxycodone must be horrible for you. That was because you can't get an ongoing refill? Is that right? If that's the case, why not? Sounds like torture. I think most of us don't want to be on anything. I give anyone credit who is working while on pain, I don't know how people do it.
I hope you can straighten things out with the oxycodone. I wish they would come up with a pain killer that takes care of the pain where it is, without being addictive. I wish you the best also. You've been very kind.
And I think Dylan is an excellent poet also. His talent with words is sensational.
My best to you, Thanks for trying to encourage me. I know you are having a hard time yourself, and I appreciate it. ~Barbara 
Swallow your pride, you will not die, it's not poison.- Bob Dylan 


stenoman
Regular Member


Date Joined Jan 2008
Total Posts : 20
   Posted 1/13/2008 8:47 AM (GMT -7)   
Thanks Barbara,

You're right...it's because I go through a several day process each month to get a refill. Someone always resists or forgets or runs out or......you know the drill. i'm on a pain management contract/program and still i get caught up in the system and usually go without for 3-5 days. That is the toughest part of withdrawals. I usually get so frustrated that i try to do without, especially after toughing out the worst part of withdrawals but then i'll be faced with the reality of just how bad my spine is and have to take the meds in order to be anything other than bed ridden.....I keep hoping the docs can find a fix for my spine problem but so far no luck... just failed surgeries. I can't thank you enough for your kind words and advice. I'm talking candidly about this for the first time in my life and it helps. Thanks,

Jim
several spinal maladies including stenosis throughout, C-spine fusions with instrumentation 2000, L-spine fusions with instrumentation 09-11-2001, anky, spondy...you name it! Was told "it was all in my head" for 45 years until impengement became so bad it affected functions such as  heart beat, vision, breathing, etc. Wish their misdiagnosis were correct!


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 1/13/2008 4:09 PM (GMT -7)   

Hi Jim,

I am so sorry you have to go without the pills each month, that should not be, somehow it should be a way that you would never have to go that long without the pills, a way that it would be set up even if you had to make a call 5 days before so they would be ready as soon as you ran out. No one should have to suffer like that who needs the pills for pain, you aren't playing around. I don't know fully your situation and insurance, I know I'd be darn mad. When my pills wern't ready for me, they at least managed to give me 10 pills to hold over until they had it all together for a full prescription. Maybe you can talk to someone?

My heart really goes out to you. I'm sorry you are suffering so much. I will remember you in prayers if you'd like. Sorry your surgeries didn't work. It is good to talk about it. This board is the best I've ever been on. Right now, it's the only one I come to. I always get a response and the moderators are great as well as the people.

Blessings to you, Jim

Barbara~ 

 


stenoman
Regular Member


Date Joined Jan 2008
Total Posts : 20
   Posted 1/13/2008 8:33 PM (GMT -7)   
Dear Barbara,
 
Thanks for keeping me in your prayers... that means a lot to me. I'll have to flesh out the details at a later date but the basics are as follows:
 
My doctor schedules me a close to 30 day intervals as possible but it never seems to work out and if i get a different doctor, oh my....i have to go through the whole drug dealer/drug addict routine! I've learned to start hoarding my medicine about a week or two early just so I'll have some when the month is up and it takes more than a day to arrive at a refill. As you know I still experience withdrawal symptoms... just not as bad as total cold turkey and the medicine I do take doesn't help much because I'm behind the pain curve so to speak. Then once I get a refill it takes about a week to get on top of the pain again. All in all the first week with meds and the last week without results in only the middle of the month where the program of medicine actually yeilds the intended benefit. My doc seems to understand but he keeps telling me he is under a lot of scrutany from his associates that any reason I give them to drop me they will! He says that is industry wide????? Everyone around here makes it sound like those that have abused the medicine and or system have all but ruined it for those of us that really need pain medicines. Doctors' practices are doing their best to drop patients that are dealing with chronic pain due to the liability surrounding the meds. I live just outside of DC in West Virginia and I think the local has a lot to do with it....although I'm originally from, Charlottsville Viginia I spent the past 30 plus years in Arizona. Now that I've moved back here I can tell that there are many stereotypes about WV that actually spill over into reality. I imagine that in the blue collar geographical areas of the state there exists a welfare mentality along with rampant drug abuse. I live in an area that is a polar opposite. Harpers Ferry WV (my current home) is where VA, MD and WV all come together at the confluence of the Potomac and Shenendoa rivers....the majority of us working folks are profesionals that commute to DC but enjoy the rural lifestyle this are affords us. Could it be that all of the people trying to con doctors out of "hillbilly heroin" make it impossible for me to receive quality care? For example, I called my doctor and left a voice mail that the new medicine he perscribed was far too harsh for me and I couldn't function at work so could I revert to my less potent meds? He wanted me to try 80 mg of Oxycotin versus the 60 of Oxycodone I had been taking per day. He told me later after I had another "incident" with a different doctor, that he had to intervene and fight for me to stay on as a patient because my phone call was considered "drug seeking behavior"!!!!!!! That's rich.... a patient that has been taking the same dose of pain medicine for years asking not to have their dose increased is considered an abuser! I have built up a tolerance but I've been conditioned like one of Pavlov's dogs not to even consider asking about increasing the Hydrocodone/Oxycodone....I'm convinced they'd drop me in a flash. As I've said many times before... i can live with any amount of pain just so long as the meds allow me to get on my feet and be there for my family...that's what the 60 mg per day does. I'd like to have a sufficient dose to bring relief from the pain but as hard as it's been geting any kind of help since leaving AZ I'm afraid to ask. As for it being an insurance problem.... no problem. Since my surgeries I was let go by my employer and lost my health insurance after 18 moths of COBRA coverage. Since my spine problems are considered preexisting to any attempt on my part to get coverage, everything is out of pocket. I was doing pretty good after the first surgery... not so good after the second but then both were rendered ineffective after being rearended on the way home from work by an uninsured motorist.....I'm out several hundred thousand after all of that.... hellicopter air lift, fractured c-spine, hospitals, tests, docs, meds, etc...although I've had no work done on myself to improve my back, I've paid huge money and have the priviledge of being treated like a low-life.....can you tell the stigma is the worst part of this for me? I've fought very hard all my life to try to live as a normal, healthy person and it hasn't be easy or without a tremendous amount of suffering. To be treated by people that hopefully will never experience pain like mine as if i'm lazy and just out for a "high" makes me furious. I challlenge anyone that is healthy to spend one minute in my shoes without screaming in pain and rushing to the ER.....Although it may sound like it, I'm not looking for sympathy or pity from the medical profession. I just think they should extend me the same respect I afford them. I feel I've earned it by not resigning to my maladies and relying on others to do for me. Especially since the medical profession pretty much tells me there is nothing they can do to correct my situation so all they can do is help me with managing the pain. well if that's my only option why the constant run around? Why not make a note in the file for all to see including doctor's filling in for you, why not monitor my pain levels and results given various doses and meds, why not time the appointments and written perscriptions to eliminate voids, why not treat this as an ongoing issue as you've classified it so that I don't have to reinvent the wheel every month? I always felt i was a victim of a medical profession and an insurance industry that didn't want to do the hard work to find out what was causing me such misery but after 45 years lucked out and finally had a doctor figure it out just to be discouraged again becuase they say nothing can be done and they treat my pain management as it is a hassel for them. Like i said...I wish I could transfer just one second of one of my "episodes" with my spinal chord onto all that should be helping me and i think I'd never ever have a problem again....at least not because they didn't think I couldn't possibly be in that much pain.
 
I'm sorry to abuse your kind support by wearing you down with my self pitty tonight....just nice to vent I suppose. i've spent decades trying to conceal how i feel so writing to you and the others is theraputic. I'll get my head up soon. I also apologize for the poorly crafted post... sure wish this had spell check tongue
 
Thanks for the sounding board,
 
Jim
several spinal maladies including stenosis throughout, C-spine fusions with instrumentation 2000, L-spine fusions with instrumentation 09-11-2001, anky, spondy...you name it! Was told "it was all in my head" for 45 years until impengement became so bad it affected functions such as  heart beat, vision, breathing, etc. Wish their misdiagnosis were correct!


Mochiah
Regular Member


Date Joined Dec 2007
Total Posts : 450
   Posted 1/13/2008 10:23 PM (GMT -7)   
Jim -
Each and every one of us has been where you are, and unfortunately too many still are. So, nobody here considers your vent as anything other than just that. We beat ourselves up worse than anyone else possibly could, yet we are so much stronger than many others for the simple fact that we live with high levels of pain every single day....that would wear on anyone's nerves.

I would strongly encourage you to seek another doctor, you know there are better ones out there (since you had one in AZ)

I know too well the insurance woes you are going through, I couldn't find one place to insure me while I was switching jobs and the only reason I have it now is because it is group coverage through the company I work for. I really feel for you in that regard because I only had to purchase my medicines and doctor visits for 3 months and was horrified at how much it all costs.
Mochiah/a.k.a. Sue
cervical fusion 2006, with great result
L4-5 surgery with cages, plates, and screws in 2005, I have continued pain 
MEDS:  Fentanyl patch, Norco, Celexa, trazodone, and Parafon Forte
 
Im going to smile like nothing is wrong, act like everything is perfect, and pretend its not hurting me.


Denim
Regular Member


Date Joined Apr 2007
Total Posts : 428
   Posted 1/14/2008 12:44 AM (GMT -7)   

Hi Jim,

You can use me for a sounding board anytime. I think that's what we are all here for. It is frustrating when you get treated wrongfully and if you are asking for less than they want to give you, it should be looked at as a good thing. I don't know what to say. I don't know why they are making it so hard for someone who has a chart that indicates a need for pain killers and isn't trying to score drugs. I am in Arizona now. Been here for a few years. In fact my pain started only one month after being here. I had one doctor willing to give me anything. I have not had good experiences with the doctors here and I'm still feeling like I have no one that can has an answer to my problems. I mean it has to be something. I know exactly when it began. It is very frustrating when you hear "I don't see anything outstanding" and I feel like with my primary care, I am telling him what I'd like to do. I've had terrible experiences with doctors here, no one has helped. I pray a lot. That's what it has come down to. I feel like I know more than they do and no one is managing my pain.

Anyway, you aren't wearing me out. I'd like to know your secret to going to work in pain. How do you not think about it? Both my husband and I are in similiar situations. I went from being a non stop exercise nut and outdoor person to practically a hermit. I am afraid to attempt to work. I know myself and my husband can't stay home forever. I also know I don't think I can even manage or want to work full time and I don't want to suffer at work. So how do you do it?  

Thanks, Barbara


Swallow your pride, you will not die, it's not poison.- Bob Dylan 


stenoman
Regular Member


Date Joined Jan 2008
Total Posts : 20
   Posted 1/14/2008 6:51 AM (GMT -7)   
Wow! I have stumbled onto something wonderful here at the message board....I never expected such a reaction. I worried all night long that I made a fool of myself with my posts. Thanks so much for your insightful words. It is obvious we are all "in the know" regarding CP. I suppose I am so surprised because I've never been able to converse with people that share my experience with constant off the charts pain. I gave up trying to describe it long ago. Unless one has felt it they'd never understand. But you know what???? The comfort taken from our support comes at a price....I am very sad that anyone else feels or has felt as i do. I wish I were the only one as my mind has convinced me most of the time. how could anyone endure such pain...i thought I was alone. I'm sorry you are in so much pain. I wish I could take it away fo you. Mochiah, please don't let your experience with the doctors sour your opinion of AZ. I know this is off topic and i'm being silly but I am very protective of my adopted state. Although I'm a typical proud Virginian I am passionate about the wonders of AZ. I was there before the past 35 year boom up until a couple years ago. I saw a lot of newcomers fall victim to the feelings that their hard luck was to be blamed on their latest westerly geographic location. I'm sure this is not the case with you but so many people move west to start over or improve their situation only to find their problems follow them so they blame it on locale. "this place is expensive...there's no work here...etc". once they get to AZ or CA they are faced to look within or start swimming in the pacific :). Based on your positive words I know you aren't a member of that group so I'm counting on you to defend my adopted home. Hpefully the fact that I'm trying to make a joke is coming through...email is tough to convey tone. More to the point...I would be happy to share the names of dotors in the Phoenix and Tucson metro areas that helped me. My neurosurgeon in Scottsdale actually helped me for the first year I was working in DC. He made arrangements for me to meet experts back here and so on. Did they go through the front (throat) to do your c- fusion? That was bizzar for me. We seem to have very similar operations in common. I know one thing...the lack of dampness and nice warm climate sure helped my back in AZ more than the damp dreary days back east! And Denim-what can I say? You always hit the naill on the head with me. I can't thank you enough for the supporting words and thoughts. As for your question I'm not sure. I have some theories if that might help. One thing that I suspect is the fact that I've ben dealing with this as long as i can remember. my first recollection was at the age of four. I kept telling me parents i'd been struck by lightening. It's amazing the coping skills one can develop over 45 years of pain. Perhaps i had this at birth and started coping right away. I really don't know any thing other than the pain. I actually worry what I might feel like without it. Will I feel odd, less alive? Will I be able to handle it? Will it be that creepy skin crawl feeling I get with withdrawals.., you know, a mental pain versus actual physical pain? I have learned to control the whole mind over matter thing fairly well. It helps with the pain and also has some useful benefits in other aspects of my life. You talk about discipline and patience! As a kid I used to describe it as the ability to compartmentalize the pain and the amount of my mind dedicated to keeping it at a manageble level. When i was bombarded with emotions... good or bad i would be ovrwhelmed with a flood of pain because there wasn't enough of me to handle the emotion and keep the "forcefield". I always had enough "capacity" for other mental demands or distractions except emotions. That conditioned me to avoid emotion packed situations. There are some other things I do that help me get out of bed and go to work that i'll write about soon. But for the most part i can handle a great deal of pain but when my spine won't support the weight of my body or I am literally paralized with pain i am not able to work. I have these episodes where the spinal chord is being clipped or smashed by the vertebrea and that is the a pain that dictates function that i must deal with., If I can't breathe or speak or move my arms and legs I can't work..the constant pain that doesn't reduce me to a blob with no control over my body gets very little conscience effort on my part. That mind over matter has become second nature over the years. So in fairness to you I should make that distinction....I have found ways to deal with the cronic pain and hold a job although I know I could do so much more if pain free....it's funny how people think we are performing well when we know inside it isn't a fraction of what we could do. It's our best while overcoming the handicap of pain. just imagine what we could accomplish without dedicating so much of ourselves to coping with the pain. I tell my wife it's God's way of preventing me from taking over the universe :) I have to end abruptly but i will write more specifics as to how I manage a job....

Thanks so much to both of you.

Sincerely,

jim
several spinal maladies including stenosis throughout, C-spine fusions with instrumentation 2000, L-spine fusions with instrumentation 09-11-2001, anky, spondy...you name it! Was told "it was all in my head" for 45 years until impengement became so bad it affected functions such as  heart beat, vision, breathing, etc. Wish their misdiagnosis were correct!


razzle51
Veteran Member


Date Joined Jan 2005
Total Posts : 763
   Posted 1/14/2008 12:37 PM (GMT -7)   
I take 100 mg 4 times aday

Syringomyelia T4-T10
Chiari Malformation
Decompression Surgery 1999
 
"Remember That Life Is Short!!!" Life is short, break the rules, Forgive quickly, Love truly, laugh uncontrolably, And never regret anything that made you smile. <!-- / sig -->
 

 
 
 



Mochiah
Regular Member


Date Joined Dec 2007
Total Posts : 450
   Posted 1/14/2008 4:48 PM (GMT -7)   
stenoman said...
Wow! I have stumbled onto something wonderful here at the message board....I never expected such a reaction. I worried all night long that I made a fool of myself with my posts. Thanks so much for your insightful words. It is obvious we are all "in the know" regarding CP. I suppose I am so surprised because I've never been able to converse with people that share my experience with constant off the charts pain. I gave up trying to describe it long ago. Unless one has felt it they'd never understand.
yeah Yup, that is why we are all STILL here.  Once you find other people who understand exactly what you are going through, it is hard to turn away.  Knowing there are others like ourselves out there is both comforting and dismaying.  Unfortunately, even though there are many CP people, there are also addicts who have made our lives very difficult.  It is unfortunate that a lot of doctors have let the addicts turn against CP patients.
 
I did have my fusion through the front of my neck.  I still find it difficult to swallow if my head is turned but that is simple to deal with, the pain was not so simple.
 
Unfortunately, I think you may have confused myself (Mochia/Sue) with Denim when you responded about AZ, Denim/Barb is the one having problems with the AZ doctors.  Although, I did live in the Mesa/Tempe/Scottsdale area for a while, but it was before my chronic pain.
 
At any rate, stick around and post more, you won't be sorry you did...we are all fighting the same battle.
Mochiah/a.k.a. Sue
cervical fusion 2006, with great result
L4-5 surgery with cages, plates, and screws in 2005, I have continued pain 
MEDS:  Fentanyl patch, Norco, Celexa, trazodone, and Parafon Forte
 
Im going to smile like nothing is wrong, act like everything is perfect, and pretend its not hurting me.


stenoman
Regular Member


Date Joined Jan 2008
Total Posts : 20
   Posted 1/15/2008 9:54 AM (GMT -7)   
Thanks Mochiah,

I'm sorry to hear you are still having trouble swallowing after two years... As intense as my c-spine surgeries were, I experienced miraculous results. I wish all of my experiences with the medical profession were as beneficial. I suppose the severity of my c-spine problems made the improvements even more dramatic. Having severe mashing of the chord, nerve roots and brain stem way up there made for some pretty wild problems. After a lifetime of mis-diagnosis I ended up in ICU beig treated as a heart attack/stroke victim....funny. After they did all of the stress tests et al they were really perplexed. I just remember the misery of laying in a very painfull position for my back and they wouldn't ley me get on my side since they were convinced it had something to do with my heart...also those nasty nitro tablets gave me wicked headaches. Thank goodness and the Lord for the doc making rounds a few nights later....I won't bore you with repeting the story in case you read my entire post thread but lets just say he is my hero. He spotted my problem within a minute or two after a million trips to the ER and countless attempts to get help since I was a toddler came up empty. I'll never forget him. Fast forward to an emergency surgery that went well and the resulting Halo and subsequent Miami J's.......like a fool I went back to work after being released from the hospital two weeks later! I guess i felt so much better than before when my chord was being clipped at the brain stem that my new level of misery felt like heaven. Anyway, I made a lot of people uncomfortable with the headgear and the lack of a voice. it got worse when i was first able to get some sounds out...i have a deep voice to begin with and it was ghastly. My baby sis came to visit and support me during recovery and I creditted her with my regualar voice coming back. You see i was very worried that I lost if for good since it took 4 times longer to come back that the doctors expected. i could tell they were preparing themslves for a case...they got in a very defensive posture for a few months. Then one day while trying to talk to my sister a couple sounds came through pretty normal...it was exciting. Within a week I was able to converse without scaring people :) My only lingering effect of the throat being violated is when I rub my throat as in applying shaving cream it can be painful if i move the internals around and it makes scary popping sounds and i now have a kind of shelf in my throat that leads to all kinds of choking hazards.....its much better now but I get choaked all the time...even water gets hung up?

what does your doctor say about the difficulty you experience? And I am most curious what he says about the pain. I'm sure you can tell from my posts that i'm going through a rare period where I'm being the eternal optimist and I promised myself not to resign to the pain but rather try every thing I can to get some help and long overdue relief. Me being a tough guy and trying to "tough it out" has taken a pretty big toll on me....one I didn't know i was paying. I keep thinking that if i compare notes with you and the others I might hit upon something that might help. Hopefully you pain isn't getting worse...is it? I'm not familiar with any of your meds....do you bring you any relief?

Sorry for the confusion as I was trying to reply to multiple people with my message.

I'm pulling for you and hope you feel better all the time.

Sincerely,

Jim

ps...is Mochiah a Tunisian derivative?
several spinal maladies including stenosis throughout, C-spine fusions with instrumentation 2000, L-spine fusions with instrumentation 09-11-2001, anky, spondy...you name it! Was told "it was all in my head" for 45 years until impengement became so bad it affected functions such as  heart beat, vision, breathing, etc. Wish their misdiagnosis were correct!


pincushion1
New Member


Date Joined Dec 2007
Total Posts : 11
   Posted 1/15/2008 10:51 AM (GMT -7)   
Hey Buddy,
Ultranm is a powerfull anyi-inflamitory. There are several other nsaid drug choices I find that 3200mg. of motrin and 2700mg of gabapentin do the job of at least making me feel at least human enough to be able to function minimally. I have RSD and you have pain in your leg. I Think it is time to say good bye to your dr. and get one who will prescribe what you need.
Don,t feel any loyaty to old doc whosits,
time for an upgrade
good luck
greg
New Topic Post Reply Printable Version
28 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Sunday, December 11, 2016 7:05 AM (GMT -7)
There are a total of 2,736,310 posts in 301,367 threads.
View Active Threads


Who's Online
This forum has 151462 registered members. Please welcome our newest member, barbarwhit.
230 Guest(s), 4 Registered Member(s) are currently online.  Details
Asha00, mrs. george, reminder, LMusings


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer