Another human rights violation caused by the war on drugs ?

stevemailbox Hello!  My name is K.  We have never meet, but hearing your passion for the pain community has made me reach out.

I have been an opiate med user for 5 years.  I had a 2 year break in there where I was able to get off the meds.  The two years I was off the meds, my life was miserable.  My daily routine was to get up for the day force myself to get my kids up and off to school, and then lied down on my couch all day, every day.  My pain during those two years was so debilitating that I was unable to do the most basic of tasks at my home.  I did a lot of “faking it”.  Just so people weren’t constantly asking me what was wrong.  I saw many many doctors during those years and have been diagnosed with everything from ankolosying spondylitis to most recently fibromyalgia.  I kept changing doctors because I could never
Find one that didn’t want to just throw pain meds at me, I wanted someone to figure out why someone who seems to be healthy by looking at me has sooooo much pain on the inside.  I even had one dr.  tell me I was making it up to get pain meds, when in reality I left my Drs because I was tired of the pain meds and wanted an actual diagnosis and to give me something to help me that wasn’t an opiate.  My latest dr. I absolutely adore.  I gave up in January and went to see her about getting back on pain meds  again because I wasn’t functioning as a mom or wife.  Since January I have had to have 3 med changes because my tolerance to opiates has brought me right back to where I was 2 years ago.  I have gone from 5/325 Percocet to 10/325 Percocet and currently 15 mg oxycodone.  I have been on the 15 mg for a month and already have noticed my tolerance building.  I had enough yesterday when the pharmacist treated me like a junkie.  My husband and I decided that I am quitting cold turkey this 3 day weekend.  I can not continue to live my life that way, where I’m constantly taking more and more opiates just to function during the day.  My entire day revolving around taking the next dose.  I need an answer, I need something that allows me to function with little pain or at least a manageable pain level without all the negative affects that come with opiates.

2 years ago I had lap band surgery for weight loss, I have been told for years that I would feel better if I lost weight, it’s my weight that’s causing the pain. I was told all this and thought I have tried to loose weight with little success because of my pain levels, so why not try this.  I lost 70 lbs and felt worse then when I was at my heaviest.  Weight loss obviously is not the solution.

This is where you come in.  I have hard stories from your patients, I have read a lot about you, but still know so little.  If you have made it this far, I appreciate you reading. My question is, what do I do?  My worry of what comes after these 3 days of withdrawal.  I assume I will be back where I have the debilitating pain.  How do I function as a wife and mother?  What is my option?  I feel so lost and am so dreading next week without meds knowing I will be in pain.  If you can suggest anything I would be grateful. 

9 Responses

  1. Once living in chronic pain, always living with chronic pain. Learning to live with it is and will always be the biggest challenge. The opiate medications are not supposed to stop your pain, they are supposed to help reduce the pain levels enough to improve your quality of life. If you are taking your opiates to completely stop the pain, then your dosage will never be enough. My suggestion is that you find a LOW dosage that reduces your pain levels enough to help you sleep at night. You are in the vicious circle of chronic pain now and more opiates are not the answer, learning how to manage your pain and activities is.
    Speaking from experience, it took nearly 6 years for my doctors to find the right cocktail of medications to control my pain to survivable levels. Until the government puts more cash into research on chronic pain then they put into fighting against the opiate medications pain sufferers are using to control their pain, we will all continue to suffer.

  2. Maybe I’m missing something but I have never been pain free. Opiates are not a magic pill or substance they alleviate some pain issues sometimes just enough to sleep and in other patients very good pain relief. The “patient is never pain free”. I am at a dose for 2 years with no changes. Any more would be useless. Titration get you to a place were pain is noticeably controlled but over time the dose can become ineffective again.
    I am not a doctor nor do I profess to know everything with pain management but I have 15 years of trying to control severe inflammation,arthritis,chronic back pain,chronic TMJ blah blah blah.
    Just my 2 pennies. I do appreciate everyones 2 cents!
    But there is much more to the story….besides titration

  3. Is K’s doctor titrating her to effect?

    If so, that’s not “Tolerance”.

    The fear people have, is that they’ll keep needing more and more meds until it’s impossible to take that many pills…this is how Opiophobia is taught to people.

    In titration, the doctor gradually increases the dose until the patient is pain-free. Then stops increasing and backs off slightly.

    What usually happens in titration, is that as the pain becomes less exhausting, the patient resumes an interest in normal living and begins engaging in activities that were too tiring to do. Ramping up the dose, reduces the pain further.

    When we lay in bed, there’s a hormone called endorphin that we need, and begin to lack. Endorphin is made when muscles move. It acts on the same centers in the brain, where opioids work.

    ANY person knocked flat on their back by injury or illness, goes into Endorphin Withdrawal after about 3 days of laying in a sickbed. They get grumpy. irritable. Bored silly.

    K, if your doctor is titrating you on those meds, your proper dose, where the pain is almost gone and you function like an almost-healthy person, is higher than the dose you are taking now. What your doctor is doing, is measuring what that dose is, by increasing your dose until the pain stops hurting.

    Because you move around more and are less exhausted, your body is making endorphin and adding that to the medicine you are on, which helps you hurt less. When you finally reach a stable dose, you will still feel a little pain, but it won’t hurt enough to interfere with sleeping, eating, or exercise. Your doctor is ramping your dose up slowly, so that the endorphin your body adds in, is also taking effect.

    When she thinks your dose is right, she will confirm it by cutting your dose a bit, and seeing whether pain comes back.

    Find out if your Dr is titrating you.

    I just explained how it’s done.

    It’s not a sign that anything is wrong with the way your body processes these medications. You’re not going to keep going up in dose forever. And if your doctor knows how to titrate, you have one of the best doctors around.

    Ask the right questions.

    • What an awesome clear response to understand how it is supposed to work as every person needs a dose to fit them works best for them. If it is a higher dose there are reasons such as exposure to opioids etc. I have been 22 years in pain 10 years on high doses but stable at this high dose and functional no side effects but of course being forced to lower and going back to high pain again

  4. I AM SO SORRY YOU CANNOT GET AN EXPLANATION. I have loads of inflammation and no one knows why but 2 hips ,2 knees and 2 elbows later I still am on 400 mg of morphine a day plus 60 mg of oxycodone per day. Doctors still just generalize?? Have you tried more natural type of pain remedies like KRATOM Tea? It has a similar chemical makeup to morphine and does releive pain for SOME, you might look more into holistic medicine. Check your heavy metals in your body etc etc. I think the holistic community may be helpful. I wish I could add more.

  5. jmo….your looking at it all wrong,,,,,I have been on the same meds,,SAME AMOUNT FOR 10 YEARS,,, no increase,,no decrease,,,,U HAVE TO WQRK ,”WITH” YOUR MEDICINNES,,,NOT expect YOUR MEDICINES TO DO ALL THE WORK,,, if u know there are certain thing that make your physical pain worse,,,,stop them,,or,,,cut your time in doing them in 1/2,,,knowing,,u cannot increase ur medicine,,but conscider yourself LUCKY u get what u get,,,,,I have learned over the years,,w/back pain,,,the more u r on your feet,,the more your back is gonna hurt,,,soooo,,,,get off youre feet,,,don’t sit,,,lay down,,,,sitting on your butt hurts just as much as standing,,,,,my point being is U ,,U,,,, gotta work WITH,,, your medicine,,,in order to make it work,,,,,,and not needing an increase,,,,,Don;t expect your life to ever be the same before the physical pain,,,it never will be again,,,u cut your functioning in half,,choose your battles wisely,,,and work ,”with,” your meds,,,,thats how I have had to do it,,and again,,same meds,,same amount 10 years now,,,NO INCREASE,,, ever,,,jmo,,,maryw

    • Mary is EXACTLY right. Work with your medications not against them.

      #1. There is no cure for your diagnoses.
      You can only control them.
      #2 You can NEVER totally be pain free.

      Example ( i lived with an 8 as my zero for 11 months last yr ) I had a pharm refusal.
      I TOLD my PCP to get me stable and give me back what worked. I’m now a 5 as my everyday zero pain level. FYI. She did put me back on the med that works for me only after i had tried a couple other meds of that class within those 11 months of hell ( they were not opioids ) .
      Its been a vacation as i see it. Especially for my brain. My pain still goes higher, rarely lower .

      #4 Dont be afraid of opioids if you are able to function.
      #5 Remember DEPENDENCE is not ADDICTION

      Personally I’m prescribed 4- 10/325 Vicodin a day. But, I take between 2-4 So, my body won’t build tolerance. I dont ask her to increase my dosage. I have Been doing it like this for 30 years. Please live with the fact that there is no magic formula. Everyone is different. Im glad you reached out to Steve w/ your story.

      #6 Dont be afraid to ask. Thats how u learn about treatments/drugs.
      #8 YOU have to learn about your conditions and know more than your doctor. I’m done.
      I Wish you luck K. I am putting u on my prayer list. Feel free to email me by the name on this comment. Add ( gmail .com ) at the end.
      I hope you find these comment usful.

      As for inflammation…. CINNAMON AND TURMERIC works. Pain will lessen if inflammation is controled.
      LOVE AND PEACE. Barbara

  6. rehab for the federal government stop the abuse of power

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