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Calling on Charles
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bren_bren posted:
Hi Charles and everyone else. I haven't written in ages and was the one who created this forum. Still dealing with pain but trying my damnedest to get things under control. Calling on you Charles because I have faith that you can help. I'm trying another round of prolotherapy w/ a new doc who is excellent in his profession. Will go into greater detail as needed in the future, yet just want to get a feel for your presence here now. I'm on 100mcgs of Fentanyl & roxicodone for bt med's. He wants me off narcotics in 60 days "because they suppress the bodies immune system and will inhibit the body's ability to heal". I need proof/studies of this as I have trouble believing this is so black&white. I am willing to try this (would love to get off fentanyl) but want to be sure I won't want to kill myself in the process. I'm almost being literal. I hope you are well Charles, and others. I'm just scared out of my wits as I don't want my family to suffer- my suffering is inevitable. Thanks for reading, Bren
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liveea responded:
Hi, bren_bren,
I had my first round of Prolotherapy and Prolozone last Monday. I have suffered from sacral/right sij pain/glute pain spasms and right thoracic spine/scapula area...most likely from a fall I had 26 years ago. The doctor said I may get worse before I get better, but never expected the healing crisis I am having....but feeling better today.
I too have been on fentanyl and it was a tough road but worth it. Doing it slowly is key. I was on a higher dose than you and decreased 12.5mcg every two weeks. I suppose I could have gone faster but as a single parent, I had to hang on to my job.
I would like to follow your journey and support eachother. 26 years has done so much to my emotional state as well as my physical state.
A few questions...what supplements have been added to your healing regime? exercise/strenthening/stretching? Have they given you Prolozone?(that was the key to my pain relief at the appointment right after the Prolotherapy injections).
I am going to have the treatments about 4 wks apart, but believe this is the answer to my pain. With this, I need, and am, working on changing my thinking/self talk and lifestyle.
I hope this new doctor and new round of prolo gives you relief.
liveea
 
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cweinbl responded:

Hi Bren Bren! Thanks for coming back here! I was wondering how you are doing.

I have no personal experience with Prolotherapy. I know that most insurance plans will not cover it. Prolotherapy is an old treatment, dating to ancient Rome. The theory is that injecting a caustic substance will force the body to regenerate new tissue.

First - what exactly is your diagnosis? Prolotherapy will not help to cure nerve damage, osteophytes, nerve root compression, stenosis, disc degeneration, compressed vertebra, fibrosis (scar tissue) or surgical damage. Its benefit (if it really has a benefit) seems more appropriate for damaged ligaments and tendons.

Second, opiate derivatives, including Fentanyl, Oxycodone, Hydrocodone, etc., do NOT compromise the body's immune system. Who told you that it did? It does not "suppress healing." I am also unaware that one needs to stop using narcotic medications in order to start Prolotherapy. From a biochemical perspective, one has nothing to do with the other. Prolotherapy deliberately damages a specific area of the body. Narcotics bind with opiate receptors in the brain.

Question: is the person directing you to Prolotherapy an MD? If not, what is this person's occupation? Even those who espouse the efficacy of Prolotherapy admit that it rarely helps low back pain (http://www.bidmc.org/YourHealth/HolisticHealth/AlternativeTherapies.aspx?ChunkID=21357 ). If you wanted to use it for damaged tendons or ligaments, I would be more inclined to agree that it may be worth a try. But if you have degenerative disc disease, there is little to no solid evidence that Prolotherapy works. Moreover, I fail to comprehend why one must eliminate effective pain medication (Fentanyl) first. A caustic substance injected into a vertebra has no relationship with using a medication that binds with opiate receptors in the brain.

It could take weeks or even months to back away from 100 mcg Fentanyl patches. The same amount of time might be likely to eliminate Oxycodone. Just to let you know how you might feel if you do that, allow me to illustrate. The pain from eliminating Fentanyl can be so horrendous that, in my case, I literally did not wish to continue living. It was like waking up after spinal fusion without meds. I then discovered that Kadian did NOTHING at all for me. Yet, to be certain, I had to try it for a week or ten days. For those ten days, I wanted to die. I'm not suggesting that this will happen to you. But there is a chance that you'll experience a similar effect.

Before I would try Prolotherapy, AND DEFINITELY BEFORE I WOULD STOP MY PAIN MEDICATION, I would want to see several robust, double blind algorithmic research studies that ALL point to a statistically significant efficacy for Prolotherapy FOR DDD AND SPINAL DEGENERATION. To the best of my mind, no such research exists, which might be why the vast majority of medical insurance companies will not cover it. Knowing that insurance plans cover it would also help.

At any rate, it's good to hear from you. Make up your own mind. And always keep in mind the power of placebo. We always believe that something new is working, for a week or two. Then, we discover it doesn't. Whatever you decide, I wish you the best of luck.
 
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cweinbl replied to cweinbl's response:
Just an add-on to my message above:

1. Morphene has been shown to inhibit the immune system in some patients. But the jury is still out on synthetic narcotics, such as Fentanyl. It is entirely possible that synthetic pain medications do not inhibit the immune system. I haven't seen any research on this yet.

2. I would get at least two new opinions from pain management physicians or anesthesiologists about the efficacy of Prolotherapy for spinal stenosis, DDD, nerve damage and nerve root compression. It is my understanding that Prolotherapy is for damaged ligaments and tendons, not spine-related disorders or trauma..

3. If you obtain some decent relief from your current pain medications, consider how much pain you might encounter after they have left your system and then during the trial time for Prolotherapy. We're talking here about weeks, if not months away from Fentanyl and your other pain medications. I can only speak for myself, but I would only endure such agony for a treatment that has been proven significantly efficacious for my spinal problems, which might be similar to yours.

This is a difficult and very significant decision. I would respect the advice from an anesthesiologits or pain management physician who has no interest in Prolotherapy. Those doctors are independent of the treatment and can offer an honest opinion for you. I encourage you to obtain at least two opinions from physicians who are not involved in Prolotherapy.

There are some good reasons why most medical insurance plans do not cover Prolotherapy. In my opinion, additional investigation is required before making a wise decision.

Good luck.
 
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bren_bren replied to cweinbl's response:
Thanks for taking the time to write Charles. I have been in bad shape since my last treatment. It brought about the worst pain I've ever had. I can't even describe the depressive thoughts accompanied by the pain that have contributed to a lack of ability to write. And I'm still taking 75 Mcg's of Fentanyl. When the levels taper down, the dark hole appears- you may be familiar w/ that. Because no doc has been able to offer a true diagnosis, I cannot say whether or not this treatment will work. It feels like pudendal neuralgia, burning in the leg, SI joint pain. Everyone has DDD to an extent & mine Doesn't seem significant. I slipped off my bike pedal & slammed onto my bike seat while cycling 6 years ago & there was a slow progression of sciatica-like symptoms. My pelvic floor will not relax, my ischial tuberosity is tender, my pubic symphysis is tender, my piriformous is compromised; myofascial pain along the hip, etc. it feels my ligaments are bunched up, cross-threaded from my sacrum to my pubic symph. That's the best description I can come up w/ so prolo makes sense to me in most regard. I have been given a list of resources from the prolo doc (though outdated) that I have yet to pursue because of my current state. I can't imagine dealing with the amount of pain I have had after treatments w/out Fentanyl & don't like where my mind goes when levels taper. My PM doc is shaking his head but focusing on titration. I'm now left with the "don't you want to get better, (yes) then get off the narcotics". It's ok to have muscle relaxants but the prolo doc wants me off fentanyl. I tried asking the other pm docs on the pm board but maybe they havent seen the question, or simply don't know. I appreciate you taking the time to write-I value your opinion. I don't know who else to ask. My husband trusts what the prolo doc says because he has been doing this for 20 yrs, and I guess he expextcts me to have the same faith-a rift exists there too because we have run out of treatments options & my situation weighs on us heavily. If I go down the path of getting off fentanyl & the prolo doesnt work, it's unlikely that my PM doc will prescribe it ever again because of pressure he is under in new hospital clinic setting. He was only continuing to prescribe it to his older patients when he made the move a few months ago, but told me the DEA was not allowing him to prescribe the strength of med's I take anymore because of their "addictive nature". I call BS on that statement, yet my predicament still remains. Thanks again, sincerely, Bren
 
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cweinbl replied to bren_bren's response:
Your symptoms are somewhat scattered, making a firm diagnosis more difficult. "Burning in the leg" sounds like neuropathy. Have you tried Neurontin or Lyrica? "S1 pain" can be from a number of issues, including spinal stenosis, microfractures, osteophytes, trapped nerve root, nerve root damage, fibrosis or even a tumor. Have you had a recent mylogram? When was your last MRI and/or CAT-scan? What was the result? Unless I've missed something, obtaining a firm, well-documented diagnosis precedes treatment. Maybe I'm just dense or I read too fast. Here is a link for the latest, greatest research on all major forms of spinal interventions: http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf

It sounds like you are taking a huge risk. If Prolo doesn't work, and the research I've seen is fairly shaky on a positive outcome, and then you cannot get back on Fentanyl, where will you be? Iin my mind, that's a place very close to hell.

Frankly, I would not give up on a medication that keeps living hell at bay. While there is evidence that morphine can inhibit the immune system, Fentanyl is chemically different from morphine. I don't wish to say anything negative about the Prolo doc, but he or she is not the one banished to a living hell without Fentanyl is the Prolo doesn't work.

Fentanyl gave me 9 extra wonderful years in my university career. Even though I became tolerant to it long ago, it still helps tremendously. I know this because I once went off it to try something different. If Fentanyl is helping you to live a life that is productive, I would not be so easily swayed away from it, unles the new treatment has a massive track record of success for the disability. Frankly, I'm not sure that I see such success with Prolo, especially for symptoms as differentiated as yours.

Bren, this is one of the most difficult decisions that I've seen in several years here at WebMD. If you knew that you could go right back to Fentanyl upon Prolo failure, then I would say try it. But if Prolo fails and you cannot get back to Fentanyl... wow. Are you really ready to take that risk?
 
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bren_bren replied to liveea's response:
Hi Livea, I responded to your post but it didn't show. I have been experiencing pretty intense pain & haven't taken much time to write. I was told stretching is a big no-no. I take a plethora of supplements to help along w/ treatments. Also take testosterone, progesterone, DHEA, hydrocortisone(energy), prolo max, and looking into diet changes. Its all so exhausting. I tried prolo w/ a different doc a year ago & it made my pain worse. This new prolo doc knows what he's doing but since my diagnosis is foggy I think he may be a bit overconfident in treating me. It was the prolo before & my tolerance that landed me w/ such a high dose of fentanyl in the first place. I hope you are ok and have great results. Please keep me updated on your progress. I still don't know how to cope w/ these intense pain bouts, just from being at rest, and managing a child. I feel for you being a single parent- that has to be a challenge in itself. Best of luck, B
 
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bren_bren replied to cweinbl's response:
Thanks Charles. My MRI a few years ago revealed a slight disc bulge at L-5 S1. Steroid injections yielded no relief. What's most disheartening is that I have no diagnosis. Just had an MRI w/ contrast to rule out a labrel tear in my hip. If I could find a good doc to give me a diagnostic pudendal nerve block, I would be thrilled. I'll keep you posted. So far I am struggling. I also didn't appreciate the psyche profile the doc gave me my last treatment. I think he may be of mind that narcotics interfere w/ emotional healing, another contributory factor in the mind-body healing connection which he also deals with. My best, B
 
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liveea replied to bren_bren's response:
bren-bren,
Hi. I am still learning to navigate this area. I couldn't even find my post to you...so I am happy to find you today. I am so sorry about your pain... I wish I could reach out and help you.

Some comments to you and also in concert with Charle's comments.... Firstly, I am not stretching the areas that were injected. Due to the pain and injury in my upper back (thoracic spine) I am streching the opposing muscles by lying on a towel to hopefully correct my kyphosis. I will not stretch the prolo'd areas. I have become quite contracted through my chest.

I am seeing a Pysiatrist...who is an MD plus specialist in physical medicine. Some of the supplements that he has me taking for pain is MSM.. I am taking it religiously...better absorbed with vitamin C (I believe), D3--I need to be tested- chronic pain depletes your levels. I am on 5,000 iu's., fish oil, 3,000mg... I still take my tramadol---over the years, docs have treated me as a drug seeker and give me very little to manage the pain. I need pain relief and this dr. believes me...26 years of constant pain....I don't even know what is normal. Oh, yes, alot of heat to the areas...

I believe in the prolotherapy....but the Prolozone injected on top of the prolo injections gave me relief instantly and gave a sensation on kinesio-tape and support... my first week prolo-healing crisis...profuse sweating and pain...alot of time in bed. I I have some relief and know that with continued treatment (next set of injections are May 21), I will get better.

I also am concerned about the fentenyl...Charles was more graphic than I wanted to be. Please go slowly....getting off fentenyl is pure hell...and yes, I had many "end my life" feelings...even though it never took my pain away. I will be praying for you.

Have you watched any of the educational prolotherapy done by Dr. Hauser on youtube? This Dr. went to school with mine and the style and method of "Hemwell-Hackett" is what I am receiving. Please watch. It still opens my eyes and new short videos with education is added............Much love to you..
 
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bren_bren replied to liveea's response:
I had to get a different brand of fentanyl this last go-round (Mylan) & it sends me into awful withdrawals about every 40 hrs. I don't know what to do about it but hope I can turn it in tomorrow to my pain doc & get a different script to get back to my old brand (Sandoz).

Did your doc offer anything to combat the withdrawals? It's nice to see you are so hopeful & capable of maintaining such a positive attitude-that's refreshing. I have been trying to look up but so far the physical is disrupting any attempts.

Thanks for the encouragement. I was asked to get off the fentanyl in 60 days. That was about 2 weeks ago-a slow taper makes more sense. I worry about my mental state because of depression history, and my father took his life after dealing w/ chronic pain for many years. I have no problem coming off the med's as long I get relief from the prolo. I'm just a bummer tonight, sorry. But will keep in touch. Btw, I'm receiving the same prolo methods. Take great care,B
 
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cweinbl replied to bren_bren's response:
Most Fentanyl patches last at most 48 hours. Forget the 72 hours that they proclaim. My physician understands this. Some do not. I also use Oxycodone for BT pain (and if I experience withdrawal from Fentanyl).

Bren Bren, I'm not going to tell you what to do. But I'll say this from 40 years of chronic pain. I know that I obtain some decent relief from Fentanyl and Oxycodone, plus Lyrica, Celebrex and Trazadone. Am I still in pain? Yes, of course I'm still in pain. But I can manage the pain. In fact, when absolutely necessary, I can titrate my medication slightly to achieve even greater temporary pain relief. Using THC can help even more.

In other words, I cannot imagine any potential treatment (like Prolotherapy) that would convince me to stop my Fentanyl/Oxycodone/Lyrica/Trazadone. I tried going off Fentanyl years ago. I did NOT have any problem with withdrawal. But the pain without Fentanyl was so massive and horrid that I did not wish to live. Again, I stress that this was not withdrawal. I've experienced it in the past and this was not withdrawal. Intead, I learned what life was like without Fentanyl and it was not worth living. Again, I stress that this is just me. Certianly other people will have their own unique tolerance for pain medication.

I sincerely hope that you have a better experience. I comprehend why pain management physicians want you off all medications as the necessary capital to determine the efficacy of the new treatment (Prolotherapy). I'm just sayng that from my experience, I would not wish to live for a few days like that, let alone a few weeks or months. I would need to know that Prolotherapy is definitely more efficacious than my combination of drugs, before it would be worth the agony of going off those drugs that today help me manage my chronic pain.

Here's hoping that your experience is better!
 
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bren_bren replied to cweinbl's response:
Hi Charles. I guess I equate pre-withdrawals w/ itchy/restless legs, increase in pain, but not quite vomiting stage. My legs will tighten so badly that it's much like RLS. I cant sit/lay still. I was on neurontin for years but stepped down for this process.

When you tapered,what were the increments? I went from 100 Mcg's to 75 & had a slight increase in pain. Prolo sent me over the edge. My pain doc was supportive today & said that if prolo doesn't work he won't keep from offering fentanyl in the future. But he will not prescribe an increase in BT med's during prolo treatments-when it's most required. He wants a written statement from the prolo doc (in regard to the circumstances) that would require this right after treatments. He also asked, "Are you SURE you want to do this" about 5 times. I think he foresees the hell. I'm not sure because I feel worse, but if there is a glimmer of hope that this process will relieve me of my condition, I can't just not try--I say this now, under the influence. It's so annoying that I haven't been properly diagnosed. Thank you so much for keeping in contact. I value your input.

On another note, I was hoping this would work so we could have another child. We are blessed with one, yet I forsaw a bigger family. If I'm on the med's, I can't do it obviously-I have had 7 miscarriages.
 
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cweinbl replied to bren_bren's response:
OK, here's my take, for what it's worth. I think that the Prolo success rate is low. I think that you'll be miderable without Fentanyl (and I'm not just talking about withdrawal). That being said, as long as your doctor will put you back on Fentanyl (assuming Prolo doesn't do the job), you can give it a try. Just don't be surprised when you have to spend a month or two in severe pain.

And here's my take on using opiates for a lifetime. As long as you use them as directed, there seems to be little reason for concern. I expect to use Fentanyl for the rest of my life, or until something even better arrives. So, I don't worry at all about withdrawal. In fact, I feel fortunate to have an internist who will let me try anything and who will prescribe Fentanyl. I sometimes wonder why people are so concerned about using opiates for decades or longer. As far as I can tell, there is no abundant research that reveals problems in this regard.

Finally, most of the best results that I've heard about come from a millieu of treatments. Start with long and short-acting opiates. Add mind-body therapy (I can reduce my pain by about 20% with biofeedback alone). Add PT, if it helps. Add off-label drugs, if appropriate (anti-depressant, anti-convulsant, anti-inflammatory). Add anything else that you have tried successfully, including THC. BTW, if you live in a state without medical marijuana laws, you can ask your doctor to prescribe Marinol (Elan Pharmaceuticals). The active ingredient is THC. Consider TENS, kniesiotherapy, acupuncture, hypnosis, injections, rhyzotomy, etc.

If all of these fail, and medications no longer help, you can consider the spinal cord stimulator and the intrathecal infusion pump.

If decide to go through with Prolotherapy, good luck. And please keep us posted on how you are doing.


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