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Posted By : haarmony16 - 5/17/2017 9:37 AM
how to start . I have been on diluadid 4mg for about 2 almost 3 years for my chronic pain and then my doctor then put me on hydrocontin 3 mg for a long lasting relief. Needless to say that did nothing for me really , i live with scoliosis , bursitis in my right shoulder and also my both my knees are pretty messed up i cant put much pressure on them . So last year my doctor put me on the fentanyl patch at 25mcg and it did wonders for me , until i had to be increased to 50mcg a couple months later because it was becoming less and less effective. He has me on 50mcg every 48 hours and dilaudid that he's weaning me off of , which im having a hard time with because it helps with breakthrough pain especially since the 50 mcg isnt as effective as it once was . Im not sure how to bring it up to my doctor that my pain isn't under control.

Posted By : (Seashell) - 5/17/2017 10:00 AM
Haarmony:
You mention that your pain is not under control with the tapering of the oral dilaudid as supplement to the 50 mcg fentanyl patch.

What degree of pain are you experiencing? How is your pain affecting your mobility and activities of daily living and work and hobbies/avocations?

The "new" reality is that it is a difficult time to be a person who endures chronic pain. The Pain Strategy developed by the NIH and CDC in March, 2016 has prompted widespread changes in the prescribing of opiates/narcotics.

No one can expect full pain relief with prescription medications. Most people are coming to consider 50% pain reduction with medications/modalities as a "win."

You mention sore/aching knees, which is a common problem as a person ages. Are you able to get to a local community center with a pool? Swimming and/or an arthritis-specific pool program can do wonders to develop strength and ROM in aging knees. Losing 5-10 pounds, if you are overweight, can also make a positive impact on aching knees.

To be honest, you are probably fortunate to be able to have the fentanyl patch prescribed in the current environment of pain management and federal/state oversight and restriction. I do not know that I would be overly "pushy" in asking your physician to sustain or increase the dosage of the dilaudid for breakthrough pain.

It is important to work on developing a wide arsenal of tools to management chronic pain. In my own "tool-box":
• warm micro bead packs (buckwheat packs that are warmed in the microwave)
• topical lidocaine cream (over the counter + prescription compounding)
• swim/exercise in a warm therapy pool 3 x a week
• yoga and stretching, a daily ritual
• distraction (work on crossword puzzles, needlepoint projects, NetFlix movies)
• pets (the love and connection with a pet is genuinely healing)
• TENS unit (units are now available over the counter, without a prescription)
• compressive neo-prene wraps (the compression serves as an alternative sensory input, which dampens the pain input)

Welcome to our little group.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : haarmony16 - 5/17/2017 10:10 AM
My pain is usually 6-7 I usually have to really motivate myself to go to work everyday i work as a server im 22 years old and i have lost 85 lbs in 2 years so i dont think weight is an issue . I have a membership to the gym and I try my best to make it there but recently i have no strength to even do that . I miss being able to do the things that I love. I have hot baths with epsom salts every night to ease off the aches . But sometimes its hard getting through the day . And he wont listen to me about staying on dilaudid he really wants me off and to stay on the patch

Posted By : straydog - 5/17/2017 11:42 AM
Hello & welcome to Healing Well. Seashell has pretty much capped it all in a nutshell about pain mgt. I see that you are 22 yrs old, let me assure you that it is rare a dr would put someone your age on Fentanyl. You are very fortunate that it is being rx'd. With the above guidelines in place & the diagnosis of a patient you are a rare one. I am fully aware that pain is not an age related too.

The drs are under a microscope treating chronic pain patients. They have to look at the big picture of a patient's age because any medication taken long term will stop being as effective as it once was. An example is the 25mcg stopped working as well so the dr increased it. With a young person the drs cannot keep increasing the dosage & will eventually run out of options. Your dr obviously believes you but he is under the gun by higher up people & no drs wants to be flagged over his/her prescribing practices. Now, perhaps you can get an idea of why he will not keep you on the Dialudid for BT pain.

Depending on the brand of your patch be sure to read the literature in the box. Some patches have warnings about avoiding heat such as having a heating pad near the patch, hot showers & anything that elevates the body temperature. Heat can cause the patch to release too much medication at one time & the patch will lose its effectiveness. I saw an old thread you brought up about getting them to stick. If your brand does not provide covers, Tegaderm works very well. It is available OTC ask your pharmacist about it.

You mentioned your knees being messed up. Have you seen a specialist for your knees or had any MRI's done on them. Now a days arthroscopic surgery can fix just about any kind of knee problem except a knee replacement. Not knowing what is wrong with your knees I wanted to mention this. Working as a server is hard on someone with back & knee problems.

This really is not about your dr not listening to you at all, its about him getting into a lot trouble. Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Post Edited (straydog) : 5/17/2017 11:49:08 AM (GMT-6)


Posted By : haarmony16 - 5/18/2017 2:01 PM
Thank you for replying , ive had 3 MRIS done and 1 was for my left knee and i have tendinitis in that knee which apparently never healed and now my right knee feels worse then the left knee i can barely kneel down or go to the gym and enjoy my daily hobbies . Hes taking me off my BT medication because its "ideal" and its not up for discussion. He wants to keep me on the patch. Which is fine . My doctor is the head doctor in our town hes the chief or something or however they call it , so i dont see him getting in trouble; he just wants to see how changing the patch every 48 hours will do and weve been doing this for months and in the beginning it was perfect but now im having a hard time ..
~~haarmonyxo~~

Posted By : (Seashell) - 5/18/2017 8:38 PM
Harmony:
With all due respect, that your prescribing physician is the "head honcho" of your local hospital system does not give him any special protections from federal/state prescribing oversight and monitoring that might be grounds for sanctions.

You would do well to follow the news and regulatory changes regarding pain management and narcotic prescribing. There are two respected sites on the internet that I subscribe to to keep abreast. I will make note of them and post the web addresses and get back to you with this information.

Until about 2 years ago, pain was considered to be the 4th vital sign - the others being pulse/heart rate, blood pressure, and temperature. Physicians were encouraged to provide prescriptions to meet patient pain needs. In many instances, patient satisfaction surveys queried patients whether their pain had been adequately treated. Physicians focused on pain relief knowing that patient satisfaction surveys would report instances of patient dissatisfaction due to pain, many a physician bonus tied to survey results and patient satisfaction scores.

Times have changed. A seismic shift in policy. The National Pain Steategy released in April 2016, drafted in collaboration with the CDC, NIH, and FDA, established strict prescription guidelines for narcotics and mandates implementation of patient and prescribing physician tracking.

A respectful physician will tread cautiously in prescribing a narcotic on an extended basis for a young person, such as yourself. Why? Any person taking a narcotic on an ongoing/continuous basis will develop a physiological tolerance to the narcotic. The body becomes acclimated to the narcotic and will experience withdrawal of the marcoticnis abruptly discontinued or the dose lowered too abruptly. The body will also become less sensitive to the narcotic over time. That is, a particular dose amount will become less effective, the individual needing a higher dose or dose increase to achieve the same effect.

At the age of 22, any physician who would promote higher dose adjustments or use of more potent narcotics would be doing you a grave disservice.

What would be your options for pain relief at a later point in time were you to have an acute injury or surgery? What options would you have to manage multi-site pain as you aged? The point is, your options would be extremely limited and possibly not existent.

When you hear exceptions for narcotic prescribing in cases of cancer, the truth behind the laxity of prescribing is that many of these individuals will succumb to advanced cancer. Physiological tolerance and concerns for pain control options in the far horizon is a
moot point.

While I know your pain is real and causes you distress, you need to realize that the fentanyl patch is not routinely prescribed for chronic knee tendinitis. Fentanyl is a potent narcotic. Not to be taken lightly. You are on a 50 mcg patch changed every 48 hours. Even here your physician has been generous. Changing of the patch every 3 days/72 hours is usually the norm.

That you have been prescribed 4 mg dilaudid for breakthrough pain is even more astonishing.

For thought: Your prescribing physician has been quite generous in the prescribing of a fentanyl patch and oral dilaudid. Yesterday is
not today. The regulatory environment of pain management has changed. Even physicaians at the top of the organizational chart ate affected by the changes.

Look to developing other tools at your disposal to help manage your pain. Ex. The practice of mindfulness and progressive relaxation: strengthening of the muscles that support the knee: use of heat and/ior mcold.

I have lived in the presence of constant pain for the majority of my life. It has been a process of adapting and adjusting. Ongoing.

You will find your way on the 50 mcg Fentanyl patch. Believe in yourself. And believe in your body's inate capabilities.

Namaeste,
Karen
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

Posted By : straydog - 5/19/2017 6:20 AM
Haarmony, you mentioned scoliosis as one of your issues. To what extent is the scoliosis & how much of a curvature has the MRI's shown?

As far as the tendonitis what treatments have you had to date, same with the bursitis in your shoulder. Both of these conditions are treatable, its a matter of finding which treatment helps the person. A lot of your activities could be aggravating the tendonitis. If you have not read up on tendonitis & bursitis you may want to read up on this.

If you have not been on the 50mcg very long, if this were me I would be very concerned because it is such a strong opiod & yes I have been on Fentanyl before.

Take care.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Posted By : haarmony16 - 5/22/2017 12:36 PM
When i was first put on the 50 patch the brand i was put on gave to much medication at once and left me withdrawing for the rest of the period. So I think that has alot to do with it and ive read that is possible once they switched the brand of patches it got better but now it's just not as well managed as it once was , i dont have an explanation i dont understand why this is happening but it is , but i don't regret being put on the patch because i dont feel like a slave to the pills anymore . And Seashell i have tried everything possible to do things on my own and to strengthen my body but im having one hell of a hard time . Thats why im here thats why i signed up on this site to seek help to how i can tak to my doctor . Not to be continued to be shutdown and to be told to do things that i have already tried .
~~haarmonyxo~~

Posted By : straydog - 5/22/2017 1:37 PM
Haarmony, no one is putting you down, that is not what this forum is about. I will admit, it is quite a shock to see a 22 yr old being rx'd Fentanyl for your diagnosis that you talk about. It is very, very rare in todays environment to see someone your age on such a strong opioid. All drs have to abide by the guidelines for rxing narcotics.

I know you said you have scoliosis & I had asked previously what extent the scoliosis is & the degree of the curvature which you must have missed in my post.

None of us can tell you how to ask the dr to increase the patch. All you can do is tell him you don't feel your pain is being handled well enough & it is up to him to decide on whether to increase the dosage. That is all any patient can do is tell the dr what is going on.

Take care.

Posted By : haarmony16 - 5/22/2017 1:54 PM
My scoliosis is at a medium not extreme but enough to make it difficult for me to do my day to day things ive been through alot in my short 22 years of life. Ive had back problems since i was 13 . I was shocked as well when he put me on this medication but hydro contin just wasnt doing it for me .
~~haarmonyxo~~

Posted By : (Seashell) - 5/22/2017 3:45 PM
Harmony:
I certainly have not been berating you.

I have been honest in describing the current environment of pain management, impacted by both federal and state mandates.

Suggesting that you develop "tools" to mitigitate your pain is something that is wise for any person with ongoing pain. Alleviating pain requires attention to one's self-care and psychological coping skills.

I am 56 years of age and have been in Palliative Care for 4 years, so I am no stranger to the demoralizing effects of loss of health. I was a rehabilitation physical therapist with two master's degrees. I was able to actualize health and comfort for people stricken by illness and injury. I am unable to do for myself what I was able to do for others. The frustration is painfully real.

I will not bother you any further.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

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