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Old 12-11-2005, 04:27 PM   #1
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Hi All. IMPT Question for You, any help Appreciated so much!

Hello My Dear Friends!

You do not know me, but I have come to know some of you quite well. I read all of your posts quite frequently, at least every other day! I have never posted something for me, but in reading all of your comments on so many subjects to do with managing pain; I finally feel for the first time, I am not alone in the world. I have no family to lend support to me. I do have a couple of good friends, yet, they just cannot comprehend what I go through each and every day. One step for me is like twenty to them. Coming here and reading I always feel so much better. By reading your posts, you all have answered so many questions that I have had while I was starting in pain management, as well as comforting me on so many of my concerns, especially about taking medications, particularly oxycontin. I had so many concerns on medications due to the hype that media puts out on medications.

My name is Nora, and I am 27-year-old female. I am not married and have no children. I completely support myself. To give you some back ground on my condition, I have had multiple reconstructions on my hip due to congenital hip dislocation from birth. I lived with it completely dislocated for 20 years. Thank God, I had a mother who did not baby me, and never made me think for one second that I was any different than anyone else, or in any way disabled. I learned to live with pain and deal with it with no medications, except for Advil or Aleve on the bad arthritis days, and for flare-ups. I was taught a lot about mind over matter, and used my mind to control my pain. I was able to walk pretty normal with a slight limp only really noticeable on very bad days. I played some sports, I even learned to snow ski. I was a lifeguard, and lived a normal and pretty active life; never once thinking I had any problem or disability. My condition baffled every doctor as I was told I would never walk and be wheelchair bound for the rest of my life, much less do any of these activities, and I do know that it was MY own miracle. I learned to live with pain, grit through it, tough it out. Meditation was wonderful for me. I learned so much from such a young age, and was a very strong child, teenager, and then young adult. Even though I was active, my daily pain average was at least a 3 to 4, and it would go up to an 7 or 8 on a really bad day. Here in south Louisiana, it is not uncommon to have bad days frequently because of the humidity and the extreme temperature changes when the seasons start to change. I had yearly check ups with my orthopedic surgeon which sometimes, I did not even do, because I felt ok. But in 2000 I was finally told it was now time to face this mounting problem and do the surgery that was inevitable. I had been having more pain than usual over the two years prior, and my hip was severely deteriorated because of the arthritis as well as the deterioration that was occuring mainly because I was living such an active life and was just plain wearing it out. (which I did not know I was doing) So after not too much thought, I said ok, and did it, with the idea that it would just be 8 weeks out of my life, and then back to my life as normal, or at least that is what I was told and promised. I ended up being out for over 6 months in a hospital bed at home, unable to move, b/c my pelvis and femur were broken, as well as pins, plates and screws in my hip and pelvis to hold it all together. Now, I have a very bad limp, and basically just drag my leg. My whole body has become thrown off because of that. My back and knees are starting to have very bad problems due to this, I also have severe nerve damage in the leg, and now I live in constant pain.

I could not have been more wrong in deciding to have surgery. I did not get a second opinion. I made such CRITICALLY bad decision without any facts or research on my own, and no second opinions. I had an under educated doctor due to the complexity of my situation. He had never done this surgery before but I did not know this until 4 years later! Being young and naive, I thought all doctors were all knowing and always right!

I had extreme pain for the 3 years following the first surgery, but no one believed me. I was treated almost like an addict or a hypocondriac. Finally I found a good surgeon, after seeing 3 other ortho's, and he agreed to go in and take a look and turned out the 3 long pins were all placed wrong, or had slipped and were stuck into the hip socket, tearing up all remaning cartilige, and scraping and tearing the femeral head all up.

By no surprise, I lost my health insurance after my second operation in 2003 to correct the first surgery. I had no choice but to just go to a general practioner from then until recently, because of the extremely high cost of seeing any other hip doctors. I had never gone to a PM Dr., and could not afford the ones here in town as they are in the hundreds of dollars just for the visit, not to mention any tests, and medicines. So, the GP prescribed me Lortab 10 and soma sometimes, and I had been on and off the Lortab for a couple of years. Finally, several months ago, I got a great new job, with full benefits at an amazing price! Thank God, my job is in the medical field. (Healthcare information systems) The day my benefits went active I was at the orthopedic surgeons office, I had already made the appointment! He referred me to pain management to try keeping this hip as long as we can before doing a complete and total hip replacement. (About 6 months to 2 years is all we will really have left. I have to save money to have it done, as I have my own apartment to pay for, no family to fall back on, cannot take 2 months off of work since I just started less than six months ago, and I have no one to take care of me, etc.) Anyway, My PM is so understanding and absolutely wonderful. He is actually a Physical Medicine doctor, which is even better for someone in my situation, because we can work out a total plan, including aggressive Physical Therapy, once we can get this pain under control. I cannot believe I lived with this for so long undermedicated, but I had to survive. We have been trying various medications and treatments, and for the first time in my life I feel as if I am on the same page as a dr. I do not want to be on meds forever, b/c I am so young, and I want children and I hope for an active "more normal" life one day. Which might be possible with the hip replacement. But yet right now, none of that is possible due to the immense pain that I have due to the severe arthritis, degeneration of the joint, nerve damage as well as the severe atrophy in my muscles which has led to very weak muscles. He has put me on oxycontin, we started at low doses, but it did not touch the pain I guess because of tolerance to Medications, so we worked our way up. Now I am at the right dose and take BT meds as well on the severe days. We are trying to find the right BT meds though, because they don't seem to help with the pain too much. I don't expect to be pain free, I just need it enough relief to function and do my job, and minimal functionality for the necessities my life. Such as just going to the grocery, or washing dishes, or doing laundry. All three of those are such big tasks for me... *sigh* But, I have hope!!! And I did not write all of this to complain!!!! I promise I do have a question!

OK... so here is my question! Sorry if I rambled, just wanted to give you some background info! I canít really remember when this started but I am pretty sure it was when I started seeing my PM. My urine has become very very strong smelling. It smells awful. (This is so embarrassing, and I am sorry if I am grossing anyone out, I am grossed out myself!!!) It has never been like this before my entire life, and has become so darn embarrassing especially when company comes over. I have to use air fresheners after I pee. It even makes me want to gag! I donít understand this!!! I was very concerned and called my pm, and spoke with his nurse, she said that as we get older, our urine can become stronger smelling, and all it means is that I need to drink more fluids, especially water. Well, that was several weeks ago, I have been doing that and it is getting worse! Not exaggerating, IT IS AWFUL!! I have no burning and absolutely no pain when I use the bathroom. No symptoms of a bladder infection, yeast infection, or UTI, other than the very strong smells and it is cloudy too. The smell seems to be getting worse. I am really starting to get worried. Is this a side effect of the medications? (I take Oxycontin, Adderall, Soma, Oxycodone, and Phenergan, Advil sometimes) Could I have a kidney problem after so many years of medications? Or something else? I am extremely concerned, and I am really starting to worry so much! I have been more tired than usual lately, but that could be because of switching to a different BT med; and I work usually 40-48 hrs a week at my day job, as well as being the manager at my apartment complex. On top of working I am trying to have a life that is somewhat normal.

So, if anyone could answer my question about this, I would greatly appreciate any and all help, ideas, or personal experiences. I will be contacting my doctor again about this ASAP, but I want to be prepared, and know if anyone else goes through this. I do know my body very well, and this is absolutely NOT normal for me.

Thank You all. You are all so wonderful. I wish all of you a pain free day, on such a cold day here in Deep South Louisiana! Brrrrr! (Pulling the heating pad out!)

Thank You Again All My Love,
Nora

 
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Old 12-11-2005, 06:01 PM   #2
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Re: Hi All. IMPT Question for You, any help Appreciated so much!

Hi Nora and welcome to the boards! I post regularly on several boards and the people here are just amazing no matter what the subject--very accepting, understanding, thoughtful, and intelligent. I am really glad that you feel comfortable here and hope you will become a regular ...it can make a huge difference to have friends who truly understand what you are going through to provide advice, support, or just a friendly ear if you need to vent. This is especially true when so many people are completely ignorant and misinformed about chronic pain and its treatments--it is great that you are trying a variety of different therapies, but you should NEVER feel guilty about the meds you take. Anyone who judges or criticizes you for wanting pain relief is not worthy of being in your life, but unfortunately nearly everyone who doesn't have reason to know better buys into the media hysteria about pain meds, especially Oxycontin. For more information, I would suggest reading the articles which Shoreline provided a link to on the thread called "100% compliance." I also posted at length (I tend to ramble, especially when I get fired up about something) about the misconceptions surrounding Oxycontin and opiate treatment in general on the thread entitled "A rough patch--your advice please." Anyway, I don't really have any insight about the question you posed regarding your urine, though I have never heard of that as a side effect of medications...still, who knows? I'd suggest running an internet search and seeing if anything pops up that might explain it and also scheduling an appointment with an gynecologist just to make sure that it's not being caused by an infection or something that requires treatment. Drinking more water should help, and maybe cranberry juice too, which is supposed to flush out your system. Anyway, as long as you're not in pain or anything, I wouldn't worry too much about it, and I doubt anyone else would notice any odor...most of the time we are much more aware and sensitive about such things than anyone else would be, and we tend to worry about embarrassing things like that without realizing it is unlikely that anyone else would even notice. So please don't worry too much, though I hope you check this out and figure out what's going on so that you can resolve this issue, which is obviously troubling you. And welcome again to the chronic pain board--you will find many wise and wonderful friends here, and please don't ever hesitate to post about your experiences, questions, etc. so that we can get to know you better . Take care!

 
Old 12-11-2005, 06:08 PM   #3
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heavenlyscorp HB User
Re: Hi All. IMPT Question for You, any help Appreciated so much!

Thanks Stacy.

I did not think about going to the Gyno. I will make an appt in the morning! Thanks Girl! Reply appreciated!

Last edited by Administrator; 12-12-2005 at 11:33 PM. Reason: off topic...do not critique posts

 
Old 12-11-2005, 07:30 PM   #4
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Re: Hi All. IMPT Question for You, any help Appreciated so much!

Hi Heavenly! I don't have an answer to your question but I wanted to welcome you and tell you how sorry I am that you were so horribly under medicated for so long! I have been there myself, with a misdiagnosed disc rupture, don't you look back on those days and wonder how you ever made it through!? I sure do. I am so happy for you that it sounds like your new doctor is on board pain wise and can give you something else precious to us CP folks, HOPE! Hang in there and let us know how you are doing. your friend, Fabby

 
Old 12-11-2005, 07:56 PM   #5
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Chaddyfriend HB User
Re: Hi All. IMPT Question for You, any help Appreciated so much!

ok this might help your smelly urine q. Pain killers especially can dehydrate your body, thats why comstipation is also a side affect. They do say to drink more than the daily recommendation to help with that also. I can always tell if i ahvnt had enough water in the day bcuz i too, notice the smelly urine....ya,kind of wierd to talk about it, but were a family here. So...i would just suggest trying to grink AT LEAsT 8-10 glasses of water a day, and that should help with that. I notice a difference if i do or dont. And on the 100% compliance thing, i am glad you agree with me that it is not worth risking the precious care that we have, bcuz it could be gone with a snap of the fingers.

Well, welcome to the family and i am sure i have a friend in you. It sounds like you have a great heart and will fit in perfect around here! and never be embarassed to ask questions like this, bcuz i can almost promise you that we all ahve either gone thru it, or want to know ourselves. I will add you in my daily prayers. Have a great evening.
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Last edited by Administrator; 12-12-2005 at 11:35 PM.

 
Old 12-11-2005, 08:17 PM   #6
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heavenlyscorp HB User
Re: Hi All. IMPT Question for You, any help Appreciated so much!

...deleted...

Last edited by Administrator; 12-12-2005 at 11:45 PM. Reason: do not critique other members!

 
Old 12-11-2005, 08:35 PM   #7
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curiousforever HB User
Re: Hi All. IMPT Question for You, any help Appreciated so much!

I have issues with calling my doc (and he is a great guy) but from flashbacks from Fort Bragg days of crappy docs. I had taken some of mine for a migraine-which may or may not be related to my neuro symptoms...and since the pain has gone up-so has my usage.

Still makes me feel like a failure having to take more and call the doc-cause 30 used to last a week. Even though I can't control the nerves in my body...

Last edited by Administrator; 12-12-2005 at 11:46 PM.

 
Old 12-11-2005, 08:55 PM   #8
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Re: Hi All. IMPT Question for You, any help Appreciated so much!

Welcome heavenly! I don't have a "for sure" answer to your urine question If it goes any further or you start having additional symptoms, call your doctor right away.

As everyone else said, I am happy that you have decided to start posting. These boards ar just wonderful! And don't worry that you were rambling in your original post. I'm glad you did, now we all know your history! I am fairly new so I don't know that much about the details of most poster's conditions. It is so much easier to offer help. friendship, advice, etc... to someone when you know their condition!

Last edited by Administrator; 12-12-2005 at 11:49 PM.

 
Old 12-12-2005, 06:13 AM   #9
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Re: Hi All. IMPT Question for You, any help Appreciated so much!

welcome to the bords! i was just wondering.did that smell just start when you started the oxy c or was it kinda there before?How much water do you normally drink during the day?does your urine 'look' any different/Is it a very dark color or lighter?sorry for the questions here.i have polycystic kidney disease so I do have some knowledge of kidney issues.Have you actually had any labs done or any sort of testing done on your urine?if not,i would strongly suggest a trip to your primary for an eval on this,really.while it could just be the actual combo of the meds you are taking and adding the OC might have been just the "thing" that made this smell develop.but any sudden change in the way your urine or BMs normally are should be definitely looked into much further just in case.there are many many people who are living out in this big world of ours who are actually suffering from kidney and liver problems but just don't know it yet as the damage has not reached the detection levl or produced any sort of "real' symptoms.this was the case with me and my son and my sister.one day out of the blue,my son vomited up blood at school.we had no clue that he was even sick,really.he was Dxed with the PKD and also a liver condition that he had had since before he was born that had been slowly replacing the healthy liver tissue with these fiberous globs of chirrotic tissue.didn't have a flippin clue til the damage had become so extensive that it started to show itself.at THATY time he was already down to oly having about 20% of his liver function left.this was all caused in HIS case by a mutated PKD gene.i and my hubby had to have ultrasounds to see which side this came from(it IS hereditary so he got this from one of us we just didn't know which side)as it turned out,it came from me.geez,here I was in my early 40s with horrid looking kidney cysts all over both kidneys and hadn't had a clue.my sister had to be tested and sure enough,she has it too.the thing is,all of my labs are still within the normal ranges but only because(despite the way they look)the level of actual damage has not reached that 'certain" point yet,but one day it will.

Believe me,I am not telling you this to scare you but just to let you know that anyone could have all kinds of kidney and liver problems and not even know it.even my labs say my kidneys are okay,this is one reason that if you suspect any sort of a liver or kidney problem,do NOT rely on just labs alone,like i said,nothing will actually show out of the norm til the damage gets bad enough.this is why if you actually really want to know how things really are on the kidneys or liver,get labs,urine tests and cultures and also get an ultrasound or CT.an US will pick up most liver and kidney problems.I know they show all of my huge cysts extremely well.

hopefully and most likely,this smell is actually just from the combo of all your meds,but you do need to try and make sure.Also,drink as much water per day as you possibly can just to keep the kidneys and the rest of your body well flushed.i am drinking water from the time i get up til the time I go to bed,needless to say,I am up at least two times a night.if this becomes an issue with you just start cutting back all the water after like six or sevon pm.but at any rate,get this fully evaled.once again,welcome to the boards.if you have any more questions,just holler,K? Marcia
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Old 12-13-2005, 05:18 AM   #10
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Re: Hi All. IMPT Question for You, any help Appreciated so much!

This happened to me just 6 months ago!! I was absolutely at a loss to figure out what was causing the very strong odor. Well, it turned out to be a very minor urinary tract infection. I didn't have any symptoms at all...just the odor. The doc was so suprised because she was expecting a MAJOR infection to be at the root of the problem. So, if you haven't done so already, I would march down to my gyn/primary care doc and ask them to run a urinary test to see if that's the culprit. I was on anti-biotics for only 2 days when the odor disappeared. And....I also welcome you to the board and so glad you posted. KathyMac

 
Old 03-07-2008, 11:39 PM   #11
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Re: Hi All. IMPT Question for You, any help Appreciated so much!

Hello I'm also new to this and don't really understand how it works. Please forgive my poor spelling. I have been googling brown urinee, and urine odar for the last couple of days and finally found you guys. Maybe we can figure out this together. My osteoarthritis was mis diagnose as spinal stonesis 13 years ago. After 10 years I couldn't handle the pain any longer and went to a pain Dr two years ago. He treats with narcotics only. HyDro codeine did the trick but we had to keep upping the dosages. In Feb of last year I maxed out with 10 10/325 per day so we went to oxy cotton. I was having a bad problem with constipation and couldn't seem to get through to either of my doctors. Along with the constipation I had major pelvic pain and brown urinee. When this would happen I'd sweat out strange smelling pints of water, sleep like I was in a coma while having chills and fever. My PC Dr said bladder infection and treated me with cripco. He said sweating was from "change of life." I think not as I completed that 14 years ago and had no problems. I still think sweats, chills, little comas and brown urinee all connected so I went to a urologist. He ran every test he could think of including the scope and said Nothing was wrong. My Gyn ran every test he could think of and said he just didn't know. In July I got a stool blockage high in the colon and ended up in ER. They did a cat scan, found my colon problem PLUS the osteoartitis. I went to a specialist in Dallas and he confirmed I had Bone on Bone and needed total hip replacement. However he would not operate until I got off the narcotics, which would take about 6 months. I was taking 330MG oxycoton a day. According to pain Dr that Hip Dr sent me to I'm as low as is possible (40mg) and I'm schulded for surgery April 8. However the brown urinee with the peachy smell continues. Walking now is a problem. I can hear the bones grinding against each other as can everyone in the room. I have discovered if I do not walk (if I stay in the chair) I don't have the urinee problem. But if I do a lot of work (like launDry) that requires standing the problem shows up within the hour. So I thought maybe it is "bone dust" and my circulatory system is picking it up and my kidneys were filtering it out.
Or I guess it could be the oxy cotton. But the Dr all say "no no." I started on the oxy cotton about the same time I started having trouble. What do you think?
cercy

 
Old 03-08-2008, 06:47 AM   #12
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Re: Hi All. IMPT Question for You, any help Appreciated so much!

Welcome to the boards Cercy, I don't know the answer to your question but maybe you should start your own thread. Just go to the top and click on New Thread and you can post your own thread this way someone will see it better. I hope this help because I know there will be someone here who can answer your question.
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