I feel like I am running out of options for a cure!

I have been on Hydrocodone 10's since around April 2010. In March of 2010 I started having bad back pain. It just constantly got worse and worse. In April I moved out of my parents house in Arkansas and moved to Arlington, TX. I went to see my husbands family doctor for my back pain when I moved. I did not have insurance because my new job here does not provide it. The doctor prescribed me the pain pills and I got my refills monthly. I finally got on my husbands insurance and got an MRI done and found out I have DDD, and two bulging discs. I have seen orthopedic surgeons, chiropractors, one pain management doctor and tried acupuncture. I have had 3 epidural steriod injections that did NOTHING. I have done PT and am still doing PT with my new chiropractor and my pain hasn't really changed much. Today was one of the worst mornings I have had. I could barely take a shower and get my son ready. I know my body is used to the pain medicine because I have went through withdrawals before because my doctor either wouldn't call my medicine in until a few days later or sometimes it takes them DAYS! I am so tired of constantly having to deal with my PCP for my pain medicine. I don't take it like an addict, I take it so I can get out of my bed and go to work and raise my son. I dont think that my doctor fully understands what I am going through. I have to make an appointment sometimes because the nurse (who does not like me) won't even tell the doctor I called for a refill. My boss and co-workers know my condition and they know about my pain medicine intake. They have seen me in a lot of pain and they have seen me go through withdrawals and its very embarrassing! I feel like I am running out of options. The ortho surgeon I went to see said I dont need surgery and to try the injections. The pain management doctor gave me my first injection and went to deep and caused me to have spinal fluid leakage and I just did not feel like I could trust this doctor. I physically drove my son to the babysitter with a MAJOR spinal headache and at every red light i would recline my seat for relief. I went straight to his office and said my leakage did not heal. I knew that if i called he wouldn't do anything so I had to show up to his office for help. He sent me to the hospital to get a blood patch. The next two shots were given by a different doctor.

I am so tired of being in pain and not only that my doctor who prescribes the pills is just such a huge hassle. I don't know what type of doctor to go to next? I have made all decisions on who I have seen for my back. My PCP sent me to the pain management doctor who screwed up my injection, I just had to have him send a referral for all the doctors I decided to see. I don't want to see a different PCP for my problem because what other doc is going to prescribe me 120 pain pills every 3-4 weeks?

What should I do? I am not taking these pills for fun! I want relief and I want off of the pills but I can't seem to find the right help!

[namnam46]

Hi Miranda,

First, I want to welcome you to the Pain Management Forum and let you know that we are glad you found this Forum. I want to let you know that there are NO Doctors on this Forum, only CP  {Chronic Pain}  Patients that help each other with our OWN expertise and experiences that we have developed through our OWN CP Issues.

I'm so SORRY that you are experiencing all of this at such a young age!!

I can DEFINITELY tell you, that IF at all possible, STAY AWAY FROM SURGERY!!!  When you have back surgery such as would be required for removing your discs, it will cause the areas above AND below the surgical area to weaken!!!  I had a ruptured disc when I was 42 years old and they removed it.  The SIDE-EFFECTS that I had was SEVERE DDD, Osteoarthritis of the ENTIRE back and numerous OTHER things.  

Why doesn't your PM Doctor give you pain meds?  Why is it your PCP?  That's QUITE unusual.  Have you ASKED your PM Doctor to give you your Pain Medication? If so, what did he say?

I'll be looking for your update............Sherry

[namnam46]

Miranda - I meant to add, that your body will become accustomed to the medication that you have been on and it will need to be upped OR changed periodically.  The amount of meds that you are taking should ONLY be refilled every 30 days.  Are you taking MORE than you are supposed to?  You said that you were running out BEFORE they were being renewed.  You are VERY lucky that you HAVEN'T had to go in monthly to get your meds renewed as MOST of us HAVE to.  So it's NOT unusual, should you have to begin to go in to get your prescriptions each month.  :)

As I said before, I'll be looking for you update.........Sherry  :)

[BlueGeminiMind]

HA,HA  Imagine that, a PM Dr, prescribing Pain medication!

[MrsSinger]

I am not seeing a pain management doctor. I went to one PM doctor, who administered the first epidural steroid injection and screwed up big time. I just could not trust him after that. The doctor who administered the two other injections told me he would know before I would if I was going to have a spinal headache because he would see my spinal fluid come back into the syringe. He was an anesthesiologist and did the procedure on a bed with me sitting up. The PM doctor sedated me and used some sort of x-ray machine while giving the injection and still went to deep and didn't even tell the nurses what may have happened. I woke up and freaked out because I knew exactly what I had.  

What should I look for in a good pain management doctor?  What can they do for me other than prescribe hydrocodones?

[namnam46]

You will need a referral from your PCP.  Tell him/her that you want a REALLY good PM Doctor that will be able to help you with your pain as the Hydrocodone ISN'T touching your pain anymore.  Let your PCP know that you need a DIFFERENT medication, one that will help you as you just can't STAND this pain anymore.  Let your PCP know that you want a DIFFERENT PM Doctor as the LAST one HURT you and caused you UNCONTROLLABLE PAIN by going too deep and hitting the Spinal Fluid!!  

When do you go to your PCP again? You need to make an appointment ASAP so that you can get into your NEW PM Doctor as early as possible.

PLEASE let m know what you find out...........Sherry  :)

[CWO5USMCWife4Life]

Hi Miranda,

I know all to well of the difficulty in finding a doctor to prescribe medications you need to perform daily activities and I also know that the meds you are on are prescribed (since you said you were on Oxycodone 10's I am assuming they are the generic for Oxycontin) are meant to take every 12 hours only. So if you get a supply of 120 they should last for 2 months roughly as long as you take 10mg twice daily or as your doctor would say "bid". I have been in Chronic Pain for 4 years now and have been through the mill with different medications and some of them proved to be almost fatal so speaking from experience, please only take as directed. Now with that being said, most patients on this medication of OxyContin are usually prescribed what is called a breakthrough medication. Oxycontin is meant for every 12 hours only but many prescribe a med you can take every 4 or 6 hours ar something like Ultram which is a non-narcotic twice daily in between doses. There are so many nerves surrounding the Spinal Cord and a doctor normally would use a flouroscopy to see exactly where to pace the injections. Unfortunately it does not show nerves which could be the root of your pain and may not require long term medications once the root of the problem is solved. So many of us have tried so many different things from traditional medicine to hollistic medicine like myself to get out of the downward spiral of opiate medications. It is really good to hear you are and have worked with an accupuncturist and chiropracticioner to try and seek relief elsewhere. My question is what are they wanting to do about the bulding disks and can you avoid surgery for this or does the benefit outweigh the cost meaning you being stuck in what could be a never ending cycle of medications? Unfortunately our bodies are so smart and can get used to medications especially those working on pain receptors so quickly requiring a constant change up of medications or and increase. Eventually your doctor no matter who you see will have to put a cap on how much you are on as many medications while trying to make us feel better actually cause more pain that is not really there besides your obvious pain issue with your back. I too have gone through withdrawals while taking my medications as directed but my body just wouldnt stop hurting in places that I thought it was real pain but after getting off of a medication to "reboot" my system under a doctors care, I found that only my major issues still remained and the others disappeared. As far as getting refills from your doctor, all narcotic medications are scheduled drugs and are separted by classes and I know for sure that if you are given enough pills for 30 days that doctors most will ask for a pill count at random to make sure you are taking the right amounts before issuing another Rx or simply require a 3 business day call ahead time. My personal experience has led me to seek out a pain management care center that is willing to take care of monitoring and providing my medications and most also require a pain contract with them to be signed. This is to reassure the doctors that you understand if you seek out other doctors besides the one responsible for writting the Rx for pain medications that you can not also seek out other doctors which is called doctor shopping. They normally emphasize that early refills are not permitted unless under extenuating circumstances and agree to bring in meds for a ill count just for safety issues. It is so easy now a days to self medicate and as I said, speaking from personal experience of being run through the ringer with trying new meds to either see if they could replace narcotics or to reboot againsince  the human mind begins to get too used to a certain drug. Self medication can be very dangerous and can be fatal especially if you take other medications, alcohol intake and even seeing anew doctor who does not know fully your medical history. So please let me know if there is anything I could do to help or any info you need as many of us do not start out planning on being on painkillers for the rest of our lives nor are we in it to get our kicks. Unfortunately though with all of the laws and issues with so many pain medications we are or could be labeled but as my doctor told me, labeling everyone who is dealing with chronic pain that is true to the core and in need of medications for this pain that jkeeps us from being able to play with our kids or enjoy simple activities is like telling a person with Type 1 diabetes they are a drug addict because they need insulin. Some of us require more help than others but you need all around help like pain therapy, biofeedback, a good hard look at all of the issues you have been through and what has been done and tested to date before you let anyone touch you for anymore procedures. If they can not take the proper time to evaluate all of these things then its best to move on to someone who cares enough to do so.  You have had alot going on and you really need to rty and see past the doctor that will prescribe 120 pills every 3-4weeks and look into someone willing to treat you mind, body and soul. All around pain management services true definition. I would love to hear what happens and as I said before if you need any more specific details on anything I have said, I would be more than glad to offer my opinion as a fellow Chronic Pain sufferer. Best of luck to you!! Trina

[MrsSinger]

Hi Trina,

I just want to start off with this, I am not on oxycodones. I am on hydrocodone (norcos). BIG DIFFERENCE! Thank you for your input on my question. I talked to my chiropractor last night about seeing a pain management doctor. He told me he would like to still go through our plan of chiropractic care, which was seeing him for about 12 weeks. I have been seeing him 3 times a week and I have been seeing him for about a month now. A few weeks ago on a Thursday I called my PCP to tell them I will be running out of my meds on the weekend and I wanted to go ahead and get my refill. I had to call again Friday and the nurse told me they wouldn't refill until Monday. So instantly I knew I was about to go through one hell of a weekend. I had really bad withdrawals saturday and sunday but sunday wasn't as bad. I had a few pills to take over the weekend and I spread them out, and also kept 2 for that Monday morning so I would be able to go to work and not go through withdrawals. When I got to work that monday I was feeling great! I was in the most unusual GOOD mood! Even my boss was like oh my goodness this is strange! I was in less pain and taking less medication than the week before. Now this week has been pretty hard on me and yesterday was one of the worst. After my visit to the Chiro last night I felt so much better. This morning wasn't as bad as yesterday but still was hard on me. My chiro told me after we go through our therapy and if I am still in pain he is going to send me to a PM doctor who he sends all of his patients like me to. I almost told him to just go ahead and send me because I don't have any hope at all. I really feel like I am never going to be able to get up and be pain free. I have a one year old son and I want to be able to go to the park with him and just do everything with him! I am seeing my PCP on March 9th for a physical and getting lab work done to check some things. I will give an update as soon as possible.

Thanks everyone!

[pmuse]

This is not complex.  I do however know how DDD feels, and it's horrid!.  If only the doctors or surgeons really knew.  Some do.  You must! find a good pain management doctor period.  DDD like DJD is acute and chronic especially debilitating some days more so.  I tell you thank God I found a terrific surgeon pain specialist to inject me as epidurals never helped me only steroids did, and if the shots are not right on forgettaboutit respectfully...
You have pain med options.  Everybody reacts differently to them all not to mention we do not know of any other medical problems you have so suggesting anything for you would be wrong and not in your best interest.  I take short and long acting meds, and other meds as well.  I just found a fantastic dr. who is not just a pill pusher who helped me, and if we have DDD or DJD then we know until surgery or other holistic intervention / spirituatlity ? not religion whatever one believes in grasp it, and ask for help now...
Bathing with lotsa Lavender oil /epsom salts , Tens Machines work for some of us..
Short acting meds for a diagnosis of something that is basically chronic yet manageable if one finds the right team, and works diligently with each and every member of that team to HEAL..well short acting meds wear off, are overused, addicting, and not good for the liver.  
Find a good pain management dr who takes your insurance TOP DOCTORS IN YOUR AREA or if you have to drive into a major city do so for your relief and life it's worth it..
REST IS IMPORTANT.  Take care..
Blessings, pmuse

[namnam46]

Hi MIranda,

I'm so sorry it's taken me so long to respond to your post!!  I saw the mistake that Trina had made and was READY to respond BUT you posted and took care of it BEAUTIFULLY!!

I'm SO HAPPY to hear that your Chiropractor is doing such a GREAT job helping you {at least for the time being}.  I'm TRULY hoping that the results will CONTINUE to be as successful as it has been so far!!  I'm betting that you will still get some really good results from you treatments since you've gotten such GREAT results the last few times.  :)  What do you have to lose - IF you are STILL in pain when he's finished with the Therapy THEN he will refer you to a PM Doctor and you will be able to get the meds that you need to HELP you get the Pain Relief that YOU DESERVE!!!

Just hang in there and I'm SURE that one way or the other things WILL work out for you.  I KNOW that you WILL be able to do EVERYTHING that you want to do with your Sweet Baby Son!!  

I'll be here for you and will be looking for your NEXT UPDATE!!  I CAN'T WAIT!!

Wishing you the VERY BEST..............Sherry  :)

[nurseaudrea]

I am so sorry to hear about your pain. I know of a great PM doctor in Arlington. He also has an office in Fort Worth and has been wonderful for me. As far as medication goes he is less aggressive and does not like to see someone go too high on the prescribed amount of their meds. I was worked down from 600mg of Morphine a day to 200 and down from there where I stayed at 150mg a day for awhile. I am now off the Morphine as it is my choice and he will let me go back on if I feel I cant handle it or if my pain goes up. I have known him for 13 years but have been seeing him as a pain management patient for 3 1/2 years. He is one of the best doctors I have ever seen. Every time I take my daughter in with me he talks to her first. She has known him since she was barely two years old and loves to go see him. Their office personnel is top notch and I have never had problems getting my refills. If I ever called the pharmacy and it was not ready when I thought it would be the office personnel would simply take care of it right away or call the doctor if he was not in office to get an approval.  The staff is very kind and caring and are younger than other offices tend to be. PM me if you would like the information. I also know of some great neurosurgeons in the area as well. I have lived here most of my life and have become very acquainted with some of the doctors around the area and have done my research on every doctor I have seen.
I also know the pain of a spinal headache and the misery it causes. I got one after a myelogram two times. I don't know how you drove with that. I tried that one time and had to call my mom to come pick me up. I was registering for college with my little brother with me. I could not get out of a recumbant position to drive back the thirty minutes I had to go. You always think you r better in the morning for the first half hour and then it hits you. I never got a blood patch because my doctor told me it could cause a leak as well and are not found to be that effective. It took me over a week to be better.
I know how hard it is to go to work and then come home and take care of a family when in chronic pain. Taking care of a baby while in pain can be very hard. My daughter is now 5 and it does not get easier unless you ship them off to daycare.....just kidding.

[nurseaudrea]

I also wanted to add that you are not on that much medicine. 120 pills every 4 weeks is 4 pills a day. That would be adequate for someone just starting out on meds but not for someone on them for a little while. You don't need anyone making you feel guilty of the amount of meds. you require. We are all different in how our liver....not our brain....metabolizes the medicaion. The more we take it the smarter it gets at removing it. It builds a pathway to get it out as soon as possible so the metabolism becomes quicker. That is why some meds. that are usually taken bid (twice a day) are taken tid (three times a day). Oxycontin, Kadian, Avinza, Opana, and others can be done that way. A doctor can prescribe it how he sees fit. Just wanted to clarify for those who do not know so they will not make emphatic statements as I have seen to cause someone to feel bad about themselves.

[MrsSinger]

Hi Everyone!

I just wanted to give an update on my pain issues. Since I wrote this post I was seen by a surgeon who told me I don't need surgery and that he wanted me to try a neurostimulation device. He told me that they would do a week trial and insert leads in my lower back to see if it would even do any good and if it did I would have it implanted in my back. He said he would get me PAIN FREE.  The next day I called and told them I do not want something to mask my pain especially when I don't even know whats really causing the extreme pain that is not only in my back but all over the place. Then he told me thats all he can do....so much for getting me "PAIN FREE". Ha. So after that devasting visit I decided to make a visit to my PCP. I went to my PCP last Friday and I asked him to write a prescription for Lyrica or Neurontin. He wrote a script for my Neurontin and WOW is this a miracle or what? My pain is reduced by 80% at least... I also switched from Zoloft to Cymbalta, he said that Cymbalta and the Neurontin work very well together. I'm looking forward to getting my energy back and getting ME back.

Thank you all for your support. And thank the Lord for finally answering my prayers!

Miranda- :-)