Those of you who know me know I am all about being 100% honest and real, all the time. No little white lies. No quiet deception. Well, it’s not going to get any more real than this series, Frank Talk On Pain and Pain Meds, and what’s to follow in the next few months.
The issues of pain, pain meds, and the relatively new medication, LDN (Low Dose Naltrexone), have consumed my world for the last 3 weeks, as I wrestled with, and then came to what, to some, will seem like a rather drastic and risky decision: to get off the opioid (sometimes called opiate, or, erroneously, narcotic) pain meds that I have been on for the past ten or eleven years, in order to give LDN, a trial run.
You can’t have it both ways – it’s one or the other.
This was not an easy decision, nor one to be made lightly.
The pain that ME/CFS and FM (fibromyalgia) patients like myself experience is very real, very intense, and a constant part of our daily life.
Even with opioid pain management, there is no such thing as a day without pain. It’s a matter of degress, of where does it fall on the 0 (no pain) to 10 (excruciating) pain scale. I haven’t had a single moment at less than a 3 in as long as I can remember, with 4, 5, 6, and sometimes, even 9.5, being a regular part of my daily life.
Those of us who are lucky enough to be on opioid pain medications know just how lucky we are, as we all have friends who aren’t so lucky. Chronic pain is both emotionally and physically draining.
As I discussed my idea with a few famly members and friends, and reflected on the past, I realized exactly how much misinformation, misunderstanding, and what a terrible stigma there is around the use of opioids in chronic pain patients.
It turned out I had a lot to say about it, but, as I started weaning myself off the opioids I have been on for more than a decade on March 25th, maintaining a clear and rational thinking pattern has been quite challenging at times (perhaps the understatement of the year). Believe me, I’ve tried to whittle this down, but am tired of editing, so here it is:
Frank Talk On Pain and Pain Meds:
- Introduction – Jumping Off Into The Vast Unknown (you are here)
- Part 1: Pain, Pain Meds, Opioids, Addiction and Dependance
- Part 2: Pain Management Myths and Misconceptions
- Part 3: My Personal Journey
- Part 4: Stormy Seas and Taking On Water (Quitting Opioids)
- Part 5: Walking Through The Fire (Quitting Opioids)
My stated goal:
To go from 80mg Oxycontin daily with up to an additional 10mg of oxycodone IR for breakthru pain, to LDN, and to do it as fast as I can physically and mentally handle it – and to share this journey into uncharted waters with you.
Because I don’t know of anyone who has gone from 10+ years of opioid use and then onto LDN, I feel a certain responsibility to share this experience with you, my friends and fellow patients, in case you, too, are contemplating the same choice.
Withdrawal is not fun, I can tell you that now, but then, you didn’t think it would be, did you? What I’ve been experiencing will be the subject of future posts.
As of today, April 14th, I’ve cut my dose down to about 40mg a day. Just about half way there, but possibly going a bit too fast – more on the delights of withdrawal in future posts.
My Reasoning
The stigma that surrounds opioid use is one reason behind my decision, as my PCP, who has been handling my pain management, was out on maternity leave for 3 months, and I was faced with uncooperative members of her practice who left me wondering, day to day, whether I was going to run out of my meds or not. During an appointment with another provider, I was treated like a drug seeking addict.
I am not addicted to my pain medications, as I explained to her. I am physically dependant. There’s a huge difference, one she should have known. I explore these differences in Part 1: Pain, Pain Meds, Opioids, Addiction and Dependance.
I left feeling absolutely humiliated, and with only a few days worth of meds. My awesome PCP soon came to my rescue, despite being still out on leave, but the experience left me pondering the precariousness of my situation.
The other reason behind my decision was recent research and articles I have read touting how effective LDN is, not only for relief of pain, but also possibly for assisting the immune system to re-balance – something I am increasingly in dire need of.
I spent several days in deep contemplation and research, before finally deciding to take the plunge.
Much to my relief, my awesome PCP is behind whatever decision I make. As her large practice’s fibromyalgia specialist, she has already put several patients on LDN, with good results.
Read on, please, and feel free to share and comment!
Wolfdreams.... 
Ash, I look forward to reading this series very much. I am quite sure I will print it, and give a copy to my family doctor who prescribes my medication.
I’ve seen times when he was on vacation and I had to talk to other nurses. They don’t know me or why I take medication. The nurse asked, when I called in four days early, which I always do to give them time to write the prescription, as per their practice and recommendations, in an accusatory tone, “Are you taking more of your medication than you are supposed to take?”
I told her no, of course, and reminded her of the five day notice we are supposed to give. My doctor got the request, so it wasn’t a problem, but I gotta tell you, I’ve thought about things like, what if he died? I mean, I know he takes vacation, but I hope he doesn’t take the permanent one anytime soon.
I think about how my pain medication management will outlive his career. He will retire one day. Then what? It is a scary thought for me. I am scared of not having medication, because I know what life was like for years before I went on pain meds, and frankly, I think pain medication is perfect for the kind of pain I am treating.
As you know the, “Non-narcotic,” drugs that are advertised on TV for the treatment of fibromyaliga, such as Lyrica and Cymbalta, were not designed to treat pain, but are written for ‘off-label use.’ Both drugs screwed up my brain! Lyrica put me in bed. I had fantasies of being in bed, just to be there, every moment. I couldn’t handle that for long at all! I like being awake to life. Cymbalta made me throw up and my essential tremor was more activated, so I was shaking worse than a long-tailed cat in a room full of rocking chairs.
I am amazed by your strength and courage to go where I am not sure I would choose to go, at least, not without a good chance of surviving such a leap as you are taking.
How can we know what it’s like to try low-dose Naltrexone, if not for one as brave as you to try it, and tell us about it?
Thank you for sharing your honesty, for that is a gift to all, and for sharing with us your journey in pain management and healing.
You are a BRAVE COURAGEOUS HONEST BEAUTIFUL SISTER!
Love,
Michelle B.
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Thank you, sweet Michelle, your comments mean so very much to me, and you can bet that during the “step down” days when all I want to do is punch something, I will be coming back to read them and smile like I am now. 🙂
It’s not really the physical withdrawal symptoms that are the worst, it is the emotional upheaval, the anxiety x10, and feelings of out and out aggression… but that will be the topic of my next post.
I was talking to another sister last night about her pain management doctor woes, and they are similar to what you experienced when your’s was away… only even worse. I was thinking of you when I made my decision, when I wrote, in part 3, it is the horror we all live with – what if something happened to that one doctor we rely on? I adore my pcp, but shit happens, and you never know.
Thank you for always being there for me, sweetheart. Do Love you so very much!
Ash
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Thank you for sharing this, Ash.
I have been taking LDN for nearly two years now, and it has helped me a lot. I know it has helped me sleep much better, both falling asleep and staying asleep and getting the kind of sleep I need. To my surprise, it also improved my lab tests. My doctor and I believe that LDN is reducing inflammation and that is why the lab tests all improved.
I have only ever taken opiates for a few days at a time in my life. However, I have had a lot of pain. The reason I have not taken them since I have been suffering from M.E. is that they seem to not work for me–at all. I broke my leg and was in the hospital and I was given morephine; it did nothing whatsoever, did not even take the edge off the pain.
However, when I was in pain and sought treatment from a doctor who advertises that he is a specialist in pain management, he and his several office employees loudly accused me, in front of other patients, of “engaging in drug-seeking behavior.” I was seeking help for the pain I was suffering; I didn’t care whether it came in pill form or something else. I just wanted relief.
I took Klonopin for 16 years, and I became physically dependent on it. People who have been dependent on benzodiazepines such as klonopin and have also been addicted to heroin say that withdrawing from the benzos is harder to do. It was very difficult for me. Through an internet forum, I discovered water titration and used that for two years to withdraw from the 2mg. klonopin per night I had been taking to sleep. It was tedious, but it worked and I did not suffer the horrendous withdrawal symptoms I had experienced when I tried to withdraw by cutting tablets.
There is one other thing I should mention. Naltrexone is antagonistic to opiates, as you already know However, doctors have told me that the amount of naltrexone I am taking (2.25mg per night) is so small compared to the dose used for opiate withdrawal (35-75mg per day) that the naltrexone would likely have no effect on an opiate if I were taking one, especially if the opiate is taken several hours separate from the naltrexone. Since I do not take opiates, I cannot confirm this from my own experience.
Thank you for honestly sharing your experience, Ash.
Patricia
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Hi Patricia,
That is quite encouraging, that the LDN is helping you so much! I hope it will work as well for me, although I suspect it will take some time for it to kick in as my system rebalances.
I have also read that you can take a dose of short acting opiates while on LDN so long as the doses are seperated by several hours. I’m hoping this proves to be correct, because while I expect the LDN will help with the bulk of my pain, I doubt it will do much for what is going on in my back, which is caused by scoliosis induced muscle spasms. It’s when I’m out, such as at the doctor’s or the rare shopping venture, that I’m going to need something. So we shall see. Worst case scenario is that the opioid simply doesn’t work at all, but hopefully it will.
Please tell me you didn’t have to get off klonopin in order to start LDN. I take that as well, and really, really, don’t think I could bear the thought of another thing I had to go thru withdrawal with… it’s the only thing keeping me sane right now. I was only taking a half a mg prior to withdrawal, but now it’s 1mg…
Thank you for commenting and always being so supportive – it’s greatly appreciated!
Ash
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Thank you for your reply, Ash.
My getting off Klonopin had nothing to do with LDN. What happened was the I became tolerant of the dose of klonopin, and had to keep increasing doses to keep the benefits, and I noticed some unpleasant new symptoms. So I decided to get off the Klonopin and find out if the symptoms were being caused by the Klonopin. It was a long, tedious withdrawal but I’m glad I did it. I really think the Klonopin helped me when I was taking it, but after taking it so long, it was not having such a good effect on my body. The added symptoms disappeared when I was off the Klonopin.
As far as I know benzos do not affect LDN or vice versa. In fact, I read where Grace Slick said she started Klonopin to help her when she was withdrawing from opiates. Then she became dependent on the Klonopin and she said it was more difficult to get off the Klonopin than the opiates.
I wish you the best with this
Patricia
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Correction: It was Stevie Nicks (not Grace Slick).
http://www.benzo.org.uk/nicks.htm
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Wow, Patricia, some scary stuff on that site. I will be being more careful with the klonopin. I’ve been on just a half mg at night for years, taking an extra half on really bad migraine days because it helps with muscle relaxation (that whole deep wrinkle between my eyebrows from the pain, and holding my shoulders so tight they almost touch my ears – causing even more, referred pain).
But a big part of opiate withdrawal is emotional, and will be the subject of my next post, so I’ve been hitting them harder than usual. I will try to back off from that – I’m currently in a plateau after a really rough step down, and today don’t need them, but the “step down” days are another story entirely.
Thank you for sharing that with me!
Gentle hugs!
Ash
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Hi Ash,
I have a different view on pain meds. I was on LDN for about 8 months and it helped my pain but I then I developed severe bone pain in my thighs, hips, wrists, fingers, knees, and the LDN is not indicated to relieve bone pain. I had to discontinue using the LDN and my specialist started me on Hydrocodone 7.5-325 and I finally got some relief and started feeling a bit like a human again. But after several weeks I began noticing that one tablet was not enough to control the pain and I took it upon my self to bump it up to 2 tablets every 4-6 hours and am starting to feel better now. My pain levels have decreased and have stayed stable.
Having pain 24/7 has got to be the worst feeling ever. And here is my take on addiction to pain medication. When one has constant severe pain…what does it really matter if we get addicted to the drug or not. With having M.E. and Fibro, I have a great deal of pain. I am up crying during the night and am miserable during the the day with pain. I don’t really care if I become addicted… the doctors should be happy that they are able to relieve their patients pain and provide some kind of quality of life for their patients. Just my thought. But I know its not how our health care system works.
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Dawn, please read the next post, on Pain, Pain Meds, Addiction and Dependance. You are not describing addiction. You are describing what the American Pain Society, etc, calls “Pseudo Addiction,” which is what happens when a patient’s pain is undertreated.
You are not addicted. You are physically dependant, and an underserved, undertreated, patient. You are the reason that my previous pain specialist, mentioned in Part 2, has been crusading for decades to get doctors to properly treat patients in pain.
It doesn’t matter that you are physically dependant, anymore than it matters that I’ve been physically dependant for a decade.
What matters is QUALITY OF LIFE.
We have a fundamental RIGHT to live with the least amount of pain as possible.
Doctors have a RESPONSIBILITY to see that we receive enough meds that our pain is under control.
You know I’m here for you and behind you 100%. If there is anything I can do, please let me know. Feel free to print out what I wrote in the other posts and take it to your stupid shits of doctors – they make me SO ANGRY on your behalf!
And so we’re clear – if after 6 months, LDN with oxycodone IR during the day for breakthru pain is not enough, I will re-start the opioids, without hesitation. Because it’s about QUALITY OF LIFE.
Much Love and many Blessings, Dawn!
Ash
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Hi Ash
Just thought I’d share my experiences in case there’s anything that might help you on the journey. I had been taking Oxycontin at 240mg a day for two years or so when I decided to stop taking it – possibly in many ways a much easier decision for me as it had never really done more than take the slightest edge off my pain. It took me 18 months to get off it with almost constant withdrawal symptoms. That was over a decade ago and I was bedridden and in constant agony from body-wide pain at the time.
Last year I decided to stop taking the Valium that I’d been on for around 13 years in case it was contributing to my headaches – which have become my worst symptom over the last decade. This was a whole new league of withdrawal for me…I found out what ‘dependence’ is on a totally different level. Hard to distill the story but basically I almost didn’t make it though that attempt and ended up back on it. I’m currently in the process of withdrawing from it again – this time ‘micro-tapering’. I learned just HOW hard it is to find really good information on drug dependence and how little most of the medical profession seems to know.
Please take it as slowly as you need to, I wish you all the best and if you ever want to ask anything please feel free to get in touch (I’m actually on LDN currently too – no miracles for me but I’ve heard some wonderful stories from friends who it has really helped).
Blessings…
Kirsten
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I thought I’d ask here how you are doing in this regard Ash. I hope things are a little smoother now. I look forward to hearing about your journey though, and again, I hope you are feeling better today!
Big Big Hugs, and a whole lot of love,
Michelle.
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