I want to live......

[jlee72211]

I have chronic pain.  I have had 2 ACL reconstructions and 2 arthroscopic repairs of my left knee, I have cysts in my left ankle, I have three herniated discs in my thoracic spine and two adjacent herniated discs in my lumbar spine.  I also have an undiagnosed pain condition in my right lower abdomen that I have been dealing with for around 5 years now.  I've been on all sorts of pain medications including PO Dilaudid, PO Morphine, OxyIR, Vicodin, Percocet, and Butrans.  I take 2-4 Aleve tablets a day and 2-4 800mg doses of ibuprophene everyday.  I also have a Rx for tramadol 1-2 50mg tabs q6-8hrs.  I have a TENS unit for my back (I just need to get the electrodes to work correctly) and an inversion table.  I meditate and try progressive relaxation techniques.  I am getting a new pain doctor who will hopefully help me get physically "better" quicker than my current "spacy and forgetful doc."  I am also 1 shot into my series of lumbar epidural injections.  My current med is OxyIR 1-2 15mg tabs q4-6hrs.  I either need to learn to take my meds exactly as prescribed or get off of the narcotics all together.  I am very scared to stop the narcotics because of the pain I experience.  I also know that when stopping pain medication, pain experienced is amplified.  I also know that because of my long-term use of narcotic pain killers, my pain tolerance is abnormal.  For example, what I would call a 5/10, someone who has not used narcotics like me might rate that same pain as a 1/10.  I have such a low tolerance for pain.  I'm getting ready to start acupuncture but other than that, I am all out of ideas.  I know that a big part of not wanting to get off the meds is the physical withdrawal but I am to the point where I am emotionally and psychologically addicted as well. Rehab is out of the question, I can get off of the meds physically speaking, but what in the world am I supposed to do for the physical pain?  I am only 25 years old so I refuse to get any surgical procedures done to my spine.  Any ideas?  I really need to get this pain and pain killer thing under control.

[Tuckamore]

I am impressed with the bravely and insight it took to share your story. I sincerely wish you the very best.

You are always welcome here but with that said I think you will find answers and guidance from the ppl that have been where you are today... in our Substance Addiction Forum. They know  your pain and have walked a similar path. Some, like you have been forced to find alternative solutions for pain management.  

Please do feel free to remain in our community but don't miss the experience and guidance that the Substance Abuse Forum can provide you.

[jlee72211]

As far as the addiction goes, I want to tell you all a story about Christina.  When Christina was 14 she tried drugs, alcohol, & sex for the first time.  She stopped all that when her parents sent her to a different school.  The drugs and alcohol came back later in high school and got really bad after moving to a different state.  Christina went to recovery and got 2 years clean.  Right after the 2 years, she began having this unexplained abdominal pain and that was when the pills we introduced and made their mark.  These days the pain and the pills have a hold of her.  She takes the pills for the physical pain and the emotional pain.  She takes more than the Rx dosage and runs out way to quick.  Over the years, the strengths of prescriptions have been increasing, but for the past year they have been the same and I'm scared to ask for an adjustment.  For the past 2 years, Christina will take the whole bottle of #90 over 3-15days, do a tapper down-type detox, then wait for the next appointment to do it all over again:  

Here is the current med list:
Celebrex: Anti-inflammatory, 1 pill/day
Advil: Anti-inflamatory & analgesic, 3-4 200mg tabs q4-6 hours
Aleve: Analgesic, 2 tabs/day
Tramadol/Ultram: Pian killer, 1-2 50mg q6-8hrs
Valium: For insomnia, 5-10mg at bedtime
Trazodone: For insomnia, 50-200mg at bedtime
Ativan: Anti-anxiety, 1mg q6-8hrs PRN
Celexa: SSRI Anti-depressant, 1 20?mg tab with breakfast
Vyvanse: ADHD, 1 50mg tab with breakfast
OxyIR: Narcotic pain killer, 1-2 15mg tabs q4-6hrs

Here and there, Christina will get Vicodin, percocet, dilaudid, kadian, etc to ensure, or at least try to not run out. Well, here is how Christina takes them on a regular basis with no incidents (i.e. Normal housework and such):  30-60mg in the morning; 60-90mg during the day; 15-30mg with sleeping meds; and who knows in the evening.  Christina makes sure to space them out at least 4 hours apart, but her goal is 6 hours).  She does space the dosages out at least 4 hours apart and really tries to hold out until 6 hours have passed.  For Christina, 15mg does nothing for the pain, 30  mg takes the edge off enough to get to sleep and it can take anywhere from 30-120mg to take my pain away during the day (deppends on my physical activity and such).  To be honest, Christina will take them for reasons/excuses other than pain:   just looking for the "effect," for help in social situations, when Christina gets emotional, good & bad, etc.  On the surface, Christina takes them for the pain; underneath she craves the euphoria and the motivation to get chores done without pain.  

I have been blessed with an incredible opportunities, educational support, wonderful family support, and anything else financially that I have ever needed.  I know that our family will be alright it is just so much to take on emotionally.  I've been staying at my mom's house and will probably be here for the next month or so (or until I get a job).  For Christina, her pain meds take away both of the pain: physical and emotional.  We can go into all of her emotional issues are for another time.  Pain tolerance levels are incredibly low and they don't have the same effect as they once used to.  The pills are being dispensed by a 3rd party: Mom.  I know these numbers and quantities are incredible and they embarass me seeing them on paper.  Christina happens to have a healthcare background so she is very well informed about the meds.  For Christina it started with the physical addiction, she even did suboxone to get offf of them one time but the pain was unbearable.  Now, Christina is physically and psychologically dependent.  Rehab is out of the question right now.  I want alternative ways to manaage the pain and get it down to a tolerable level for me; I would love the pain to disappear but I know that's not realistic.   I don't want to take narcotic pain meds because I feel like I'm missing out in life. I want to get back to a point where my mind is clear and I don't neeed them.  As much as I love them they have got to go.  I want them to go but I need some alternatives in place that work and that I can afford.  I truely believe that if I can get the pain under control, I can get rid of them medications.

[namnam46]

Hi jlee,

I want to join Tuck in Welcoming you to the PM Forum!!  I'm so glad that you found us here.  Like you, we are all CP (Chronic Pain) Patients and we try desperately to help each other with whatever is causing us pain.  You will fit in here beautifully, and I hope that we can be of help to you.

As usual, Tuck hit it "right on the head" about everything.  I, too, have gone back and read most of your posts, and you have really "been through the mill", so to speak.  You are so young to have had to endure all that you have.  Most people wouldn't have to endure half as much in an entire life-time as you have in just 25 years!!

As stated, there are no "Magic Answers" when it comes to CP.  It's all trial and error until we find what works the best for all of us.  

Would you mind telling us how you are taking your meds?  You stated that you "need to take them as prescribed".  Can you be more specific as to how many meds a day you are taking so that maybe we will have more of a handle on that part of it?  I'm of the same mind-set as Tuck that you may just be getting worse and that's why you area not taking your meds as prescribed.

I have never used a DO or had the OMT performed, but I know Tuck and she has had WONDERFUL results with those.  They are the only thing that has made it possible for her to have the life that she is able to have now. :)

I wish the very best for you and I hope that you are able to get relief that you so desperately need!!

Please keep us updated as we do worry about everyone here on MH.

I'm sending you the Best of Wishes and we'll be looking for your updates............Sherry :)

[Tuckamore]

Hi Jlee,

Welcome to the Pain Management Forum. I have read some of your posts on different forums. You have been through so very much and my heart truly goes out to you. If ever someone was in a Catch 22 you certainly seem to be.

It's not usual that a Chronic Pain patient has an addiction issue. Indeed reliable studies have concluded that it is less then 4%.... so were you having addictive issues before you became a CP sufferer or do you feel this is new for you? The reason I ask is I don't want  you to assume that you are having addiction issues if it is simply because your pain is not controlled properly .... and therefore you are requiring more medications then prescribed to adequately ease your pain. You don't have to respond to that question to me, but you should ask yourself to evaluate what the truth is before you label yourself as an abuser. Believe me there are plenty of lay ppl and a few medical professionals that will do that for you..... so be cautious not to jump to conclusions that may present issues in pain management for you for the rest of your life.

For the moment lets assume that you are having addition issues. If that is truly the case you will need to find ways to manage your addiction which can only come from an educated PMP and or an Addiction Specialist. I am reading more and more about the use of medications like Suboxone or in that family of medications being used in PM, which as you may know has been primarily used in treating Addiction. This may be an option for you. I am NOT recommending this drug or any drugs in that family. I have no idea if this would be right for you or not... and I never recommend medications. However it may be something to discuss with your PMP.

Now lets assume that you are not abusing opiates. You may simply have pain that is not controlled on your current pain medication regimen. The change in PMPs will hopefully prove positive and provide you with better treatments and combinations of medications that will better control you pain. If that happens you may not feel the need to take your medications any other way but how they are prescribed.  

I don't buy into the tolerance building issues as readily as some ppl and physicians do. I and my physician tend to believe that rather then your body becoming tolerant to pain meds after 4 years you condition may just be deteriorating.  I am not foolish enough to think that this is true for everyone. But I do believe it is true for most. I have been on the same breakthrough medication for almost ten years (which was initially the only med I required.) and the same dosage for about eight years.Fifteen months ago a long acting med was added to my regimen due to another newly developed pain causing issue. I had one increase after two weeks as the initial dose was not adequate.... and I have not had an increase since that time. Again I am not foolish enough to believe that somewhere down the line my condition will deteriorate to the point that I may require an increase. So for what it's worth that's my theory.

I also know that the excepted theory is that opiates can make you more sensitive to pain then non-opiate users. Again I don't buy that 100% for everyone. I have not noted that to be true in my case but maybe that is because I have always had a high pain tolerance. I tend to accept a lot of pain more readily then some of my counter-parts.

Have you consulted a DO (Doctor of Osteopathy) that performs OMT (Osteopathic Manipulation Therapy)? My PCP was an Internal Medicine DO and without her OMT I would not have functioned as long or as well as I did. She recently took a directorship position and I have had to find a new DO. It works for me. My new PMP said he didn't know why OMT worked, it just does for many of his patients. So OMT is part of my PM regime. Take it out of the equations and the medications alone would not be effective. It may be effective for you also. No it is not the same as Chiropratic Adjustments.... this is performed by a physician.

I wish I had a magic answer for you, no one does. I do hope you will keep in touch and let us know how you are doing. If you truly beleive you have an addiction problem then you may find more support and knowledge in our Addiction/Substance Abuse Forum. They get it better then I do. Obviously you are welcome in both forums.

I wish you the very best and will look forward to your updates.

Take Care,
~Tuck