Scared

My wife and I had our quarterly pain follow up appointments with our PCP Wednesday afternoon. We always schedule two appointments ahead so that we don't have any problems getting in. When we reminded the receptionist that the appointment in three months wasn't adequate and she needed to schedule one in six months, she let slip the information that our doctor is leaving in four months. He has NO PLAN moving forward and hasn't even talked to any of the other providers in the office about taking on our cases. Every pain management office has refused our cases because they're medication management cases, which means that they can't make obscene money. The other doctors in the office have been extremely vocal about their objections regardless his management of our case. There are a few new providers that haven't chimed in, but two of them are PA-Cs (physician's assistants), which can't prescribe CIIs.

Steve

Generic Celebrex Approved by FDA - National Pain Report

Generic Celebrex (celecoxib) Approved by FDA- National Pain Report
http://bit.ly/UhqsXD

While the prices will drop a little once these are available, the real price drop will occur in about six months, when multiple generics become available for each strength (Teva has exclusivity on 100mg, 200mg, & 400mg celecoxib & Mylan has exclusive marketing rights for 50mg celecoxib).

Of course, for insured patients, generics typically have a set generic copay and the only price drop they'll see is in their copay.

For uninsured patients, multiple generic manufacturers are a necessity because they have no price insulation.

Don't forget to ALWAYS use an Rx discount card for any prescription not covered by your insurance (if you have any).

Also, the Partnership for Prescription Assistance can help you find programs that offer free & discount drugs (my wife gets 30 Duragesic per month for $0.00, courtesy of Johnson & Johnson (owner of Janssen) thanks to PPARx.
http://pparx.org

Why are patients shut out of the debate over prescription pain medicine? - The Washington Post

Why are patients shut out of the debate over prescription pain medicine?- The Washington Post
http://wapo.st/1j9NRo1

This article really says it all, well maybe not everything, but they hit the major points. Please read it in its entirety

Cymbalta Discontinuation Syndrome

Cymbalta Discontinuation Syndrome- Non-opioid Pain Medication
http://bit.ly/1jhmVSk

What a shock, SSNRIs (like Cymbalta/duloxetine) cause withdrawals!

Marijuana Works Better Than Opiates To Control Pain: Here’s How

Marijuana Works Better Than Opiates To Control Pain: Here’s How- Cannabis Now Magazine
http://bit.ly/1iZJQkP

Instead of rewriting my opinion, again, I've included my comments... They may not be pretty or perfectly formatted, but they get my points across.

~~~~~ Comment #1 ~~~~~

Why is it always cannabis OR opioids?

They work wonders together and cannabis doesn't help everyone.

We don't need more bashing of opioids in the name of advancing cannabis. All opioid side effects wear off over time (except constipation, which is readily managed with Miralax OTC),it's a function of tolerance.

Also, (a side note) while THC is helpful, it is important to remember that THC alone is almost worthless for pain relief (otherwise, my Marinol/dronabinol (CIII) would help). High THC is fine, as long as CBD isn't sacrificed. Also, oral consumption causes rapid, extensive first pass metabolism, which modifies the THC (one of the issues with Marinol/dronabinol when taken as directed).

I think that the most important thing to remember is that CP/IP (chronic/intractable pain) patients are NOT one size fits all.
~~~~~

~~~~~ Comment #2 ~~~~~

Sativex (natural cannabis with plenty of THC & CBD as a transmucosal oral spray-similar to a cannabis tincture) will be a great leap forward for pain patients and other medical cannabis users alike. Aside from being legal and covered by insurance, it will be easily measured.
~~~~~

~~~~~ Comment #3 ~~~~~

That 6% statistic is a gross overestimate, which also includes those who purposefully acquired opioids to abuse them (pill mill patients) and pain patients who were cut off from their legitimate prescriptions by pharmacies like Walgreens & states like Florida.

If you look only at the CP/IP patients who take their medications as prescribed, addiction only occurs in 0.05-0.3% of patients.
~~~~~

~~~~~ Facebook Comment ~~~~~

Why is it always cannabis OR opioids?

They work wonders together and cannabis doesn't help everyone.

We don't need more bashing of opioids in the name of advancing cannabis. All opioid side effects wear off over time (except constipation, which is readily managed with Miralax OTC),it's a function of tolerance.

Also, (a side note) while THC is helpful, it is important to remember that THC alone is almost worthless for pain relief (otherwise, my Marinol/dronabinol (CIII) would help). High THC is fine, as long as CBD isn't sacrificed. Also, oral consumption causes rapid, extensive first pass metabolism, which modifies the THC (one of the issues with Marinol/dronabinol when taken as directed).

I think that the most important thing to remember is that CP/IP (chronic/intractable pain) patients are NOT one size fits all.
~~~~~

FDA Warning on Epidural Steroids is Too Little, (7 years) Too Late

FDA Warning on Pain Injections Comes Too Late for Some - Businessweek
http://buswk.co/1n25Qfc

These injections weren't just ill advised, they were/are malpractice. They should NEVER be tried prior to safer, more effective options, like opioids. Greed and Opiophobia are the cause, the cure is knowledge.

Sativex Granted "Fast Track" Review

Marijuana Spray Gets ‘Fast Track’ Review from FDA - National Pain Report
http://bit.ly/1nAnkBC

As a cancer patient, I'm ecstatic about the possible approval of Sativex for cancer pain. I'm currently using Marinol/dronabinol, which is synthetic THC suspended in sesame oil, encapsulated in gelatin. It's terrible medication. The best thing is herbal cannabis, but Sativex is a close second. It's an all natural herbal tincture spray. It isn't just THC, it also includes plenty of CBD and every other cannabinoid.

Over-the-Counter Pain Relievers Linked to Heart Problems - National Pain Report

Over-the-Counter Pain Relievers Linked to Heart Problems - National Pain Report
http://bit.ly/1ezpZcn

Medication Jeopardy - National Pain Report

A Pained Life: Medication Jeopardy - National Pain Report

http://bit.ly/1lGjvrJ

"I was concerned about being able to get methadone when I returned home to New York City.

“My mentor is there. He’ll give you the prescriptions. Don’t worry,” Friedman said.

Unfortunately, he was wrong.

When I told the doctor, “Dr. Friedman told me you would write the methadone prescriptions for me,” he stood up, said he would not, ended the appointment, and sent me on my way – with no prescription or instructions about stopping the drug."

My comments:
~~~~~ Comment #1 ~~~~~
I was cold turkeyed from methadone (although I had oxycodone, which helped with the mu-opioid activity, but not kappa-opioid or NMDA).

Methadone it's cheap and effective, but it is also misunderstood because of a few overdoses caused by uneducated physicians. Methadone should NEVER be increased more than once every 5-7 days. Other opioids can be increased every few days or even every few hours. If a doctor increases methadone as often as they increase oxycodone, oxymorphone, morphine, or fentanyl, the patient could overdose.

There is a irrational fear surrounding methadone and because it is about $10/month, there's no incentive for drug companies to spend money dispelling those myths. Some brand name drug companies will scare doctors away from methadone to boost sales of OxyContin (oxycodone ER - major culprit), Kadian (12 hr morphine ER), Avinza (24 hour morphine ER), Exalgo (24 hr hydromorphone ER), Opana ER (oxymorphone ER), and, now, Zohydro (12 hr hydrocodone ER).
Sorry, I don't mean to sound like a conspiracy theorist.

Duragesic/fentanyl patches 400mcg/hr have no effect on my neuropathic leg pain, but low dose methadone (even 5mg/day) can have huge effects.

Methadone is uniquely effective because it it's not a pure mu-opioid (like morphine, oxycodone, fentanyl, sufentanil, alfentanil/Alfenta, oxymorphone, hydrocodone, hydromorphone, codeine, and remifentanil). Methadone is a mu-opioid, but it's also a kappa-opioid, an NMDA receptor antagonist. Methadone is ideal for nerve pain, but it is also effective for back pain and cancer pain.

Steve
~~~~~end~~~~~

~~~~~ Comment # 2 ~~~~~
Robert is correct, this is medical malpractice.

Untreated and under treated intractable pain can and do kill, usually through cardiac over-stimulation and various changes in the cardiac, pituitary, and adrenal systems. Dr. Forest Tennant explains it best in 'The Intractable Pain Patients' Handbook for Survival', which is (legally) available for free.

http://bit.ly/PainGuidePDF

Dennis is correct, pain patients need to be given a voice among those who regulate pain treatment. To those who lost kids, I'm sorry, but you kids was an addict who broke the law and took powerful medications without any regard for the directions.  These kids toss random points in a "candy dish" and swallow handfuls, you can't regulate that kind of stupidity. We pain patients are completely different from the drug abusers who make our lives hell.
~~~~~end~~~~~

Steve

Seeing Failure as Success- A Pained Life

A Pained Life: Seeing Failure as Success - National Pain Report

http://bit.ly/1qeGax0

..."I remember reading a note one of my first doctors had written: “She is being victimized by her pain.”

I did not understand what he meant at the time. Now I get it. I feel a victim, not only of the pain, but of the lack of treatment options for it."...

..."I looked up the definition of victim online: “A person or thing that suffers harm, death, etc… from some adverse act, circumstance, etc.”

This added disclaimer surprised me:

“Using the word victim or victims in relation to chronic illness or disability is often considered demeaning and disempowering. Alternative phrases such as who experiences, who has been diagnosed with, or simply with and then the name of the disability or illness, can be used instead.”

But we are victims. Of pain that often controls our lives. Of a War on Drugs that we need to help us live. Without those drugs the pain can be so overwhelming that death can be seen as preferable, and for way too many of us, has been.

Changing the way we say it, “I am not a victim of my pain, I experience chronic pain,” does not change the experience of being victimized.

So maybe it is time to turn the equation around.

If we can look at each failure as bringing us closer to being helped, then we are no longer victims. We become warriors. And each new treatment brings us closer to the one where we just may prevail."... (if it is legal & not under attack - don't hold your breath for Sativex or opioids).

Steve

The “Integrative Pain Management” Controversy

Pain-Topics News/Research UPDATES: The “Integrative Pain Management” Controversy
http://bit.ly/1mGX5t2

Ask the Pharmacist: Why Am I Being Denied a Pain Medication? - National Pain Report

Ask the Pharmacist: Why Am I Being Denied a Pain Medication? - National Pain Report

http://bit.ly/1hVfr2n

I know what you're thinking, another link, really? Unfortunately, I haven't felt up to posting any personal posts. Fortunately, I've been running across quote a few great articles.

Steve

Report Claims Drug Testing for Painkillers Motivated by Profit - National Pain Report

Report Claims Drug Testing for Painkillers Motivated by Profit - National Pain Report
http://bit.ly/1rUK2oW

"...between 2000 and 2009 the number of all Medicare laboratory services increased by about 48%, while the number of drug tests conducted in physicians’ offices increased over 3,000,000 percent ....

An estimated 116 million Americans suffer from acute and chronic pain. Many doctors who treat chronic pain patients require them to submit to random drug screens as a condition for receiving prescription pain medications. The stated rationale is to prevent misuse and possible addiction, but Collen claims there is little evidence to support the value of drug tests on people with chronic pain.

“It would be naive to say that money has not played a role in the dramatic increase in drug testing as noted in the paper,” Collen wrote in an email to American News Report. “I believe profits drove drug testing behavior and behavior drove acceptance of the procedure before there was sufficient evidence of efficacy. Now physicians may be drug testing patients because others are doing it.”

Until recently doctors could charge Medicare and private insurers up to $225 for a urine drug test that cost them a little over $20. Medicare changed its reimbursement rules after the government found evidence that some laboratories and doctors were using questionable billing practices.

Ameritox, a national laboratory that provides drug testing, agreed to pay $16.3 million in fines in 2010 to settle claims that it gave kickbacks to doctors for using its labs. A whistleblower lawsuit filed by an Ameritox sales representative alleged the company made cash payments to physicians for drug test referrals and also placed personnel in doctors’ offices to collect urine samples for drug tests that were then billed to Medicare. Ameritox says its business practices have changed since the settlement. Another testing company, Calloway Laboratories, was indicted by a Massachusetts grand jury for an “extensive” kickback scheme for doctors. Calloway has denied the charges.

Concern about a “lack of boundaries” in drug test billing led the American Academy of Pain Medicine (AAPM) to warn its members about increased government oversight. “The use of clinical drug tests in pain management has become an area ripe for the submission of fraudulent and abusive claims for reimbursement and rampant ‘overutilization’ of laboratory services,” warned Jennifer Bolden, a former federal prosecutor who is a special counsel to the AAPM."

My doctor stopped "random" drug testing on both my wife and myself, when they found out that it wasn't covered and, as Medicaid recipients, they couldn't bill either of us.

Steve M

A Pained Life: Pain Contracts - National Pain Report

A Pained Life: Pain Contracts - National Pain Report

http://bit.ly/1gsP5s5

BALANCED Opioid Article

It's unprecedented, but the media has finally realized that the patients' perspective in the debate over prescription opioids belongs in the article, not the comments section.

I urge you to read and pass along this well written, well thought out article...

Why are patients shut out of the debate over prescription pain medicine? - The Washington Post

http://wapo.st/P6xOuA

Article: Fibromyalgia Mystery Finally Solved! Researchers Find Main Source of Pain in Blood Vessels

Fibromyalgia Mystery Finally Solved!
Researchers Find Main Source of Pain in Blood Vessels

http://bit.ly/1c4Q0yu

This is a more laymen-friendly version of an article from several months ago that explains that Fibromyalgia isn't Psychiatric, but neuropathic. The pain is the result of abnormal nerve fibers, which improperly manage the blood vessels. This article focuses on the fact that Fibromyalgia is not Psychiatric, but I'll repost the more in depth article later.

The worst part is that, thanks to the War on Drugs, War on Doctors, and the newest war, the War on Patients, Fibromyalgia patients will still be given useless SSRIs (Prozac/fluoxetine, Paxil/paroxetine, Zoloft/sertraline, etcetera), SSNRIs (Cymbalta/duloxetine, Effexor/venlafaxine, Pristiq/desvenlafaxine,  tramadol/Ultram/Ryzolt, Nucynta/tapentadol, Savella/milnacipran, etcetera), and mood stabilizers (antipsychotics & anti-epileptics; gabapentin/Neurontin/Gralise, Lyrica/pregabalin, Lamictal, Abilify/aripiprazole, Seroquel, etcetera). Unfortunately, antiopioid propaganda and the DEA are preventing most physicians from prescribing pain medications for pain. Opioids are the safest (especially in the longterm), most efficacious (with adequate dosing) solution for any chronic pain condition.

Remember, acetaminophen/paracetamol/Tylenol alone kills more people than all opioids combined. NSAIDs aren't as deadly as acetaminophen/paracetamol, but they're still more deadly than opioids. Actually, even diacetylmorphine/diamorphine/Heroin rarely kills on its own, drug abusers die from mixed drug toxicity (combining alcohol and/or sedatives with opioids). Of course, opioid related deaths are almost all drug abusers. The statistics are never deaths caused by opioids, they're "opioid related deaths" or "drug related deaths", meaning any death that occurs with a drug peripherally involved, even if it is completely unrelated to the actual cause of death.

Steve

Opioids Aren't Increasing Your Pain, but those "non-narcotic" Alternatives Might

Serotonin May Perpetuate Chronic Pain - National Pain Report
http://bit.ly/1aRnuOh
http://americannewsreport.com/nationalpainreport/serotonin-may-perpetuate-chronic-pain-8822871.html

Anyone who has read Dr. Forest Tennant's Intractable Pain Patients' Handbook for Survival or Overcoming Opiophobia knows that, contrary to popular belief, opioid pain medications do not cause pain and doctors are lying or ignorant if they tell you that they do. Unfortunately, opioids are all too frequently blamed for chronic pain. Yes, there are a handful of people who experience an increase in pre-existing pain from truly high doses of opioids. These incredibly rare cases have very specific diagnostic criteria and simply still being in pain on opioids doesn't indicate OIH, especially without a worsening of pain with each dose increase. This is seen as a tool to convince CP/IP patients and their caregivers to "free" the CP/IP patients from the treatments that actually relieve pain (mu-opioids & methadone).

"No magic bullet. The worst propaganda being pushed upon all chronic pain patients, including those with and without intractable pain are the illusive "magic bullet" formulas being advanced by either pharmaceutical and medical device industries, unethical practitioners and some health plans and government agencies...The worst deception these days is the fraudulent pitch that pain can be cured by stopping all medications, as if control is the cause!!"
-Forest Tennant MD PhD

...Here comes the irony... (sorry for the long preamble)
As it turns out, the medications that the OIH proponents prescribe and recommend most often (serotonin increasing antidepressants, like serious SSNRIs, MAOIs, TCAs, & atypical antidepressants, like Remeron/mirtazapine) could be what is actually worsening pain in chronic pain patients! Seriously! How's that for irony? Not only are these doctors manipulating their patients out of effective treatments, but they may actually be making their pain worse with these psychotropic medications (plenty of which are neurotoxic).

Remember, procedures and surgeries are high & ultra high (respectively) profit while doctors get paid NOTHING for writing prescriptions and controlled substances (especially CIIs, like opioids) require even more non-reimbursed time thanks to the overstepping DEA, overzealous prosecutors, strict regulations, and public backlash thanks to an extremely small percentage of hefty doctors who ran already illegal pull mills.

~~While I can understand hesitating to risk your medical license, freedom, career, home, and the hundreds of thousands of dollars that must be spent to defend the criminal charges (still lose medical license & career), it is completely unethical to manipulate a patient into believing a lie so that you can commit malpractice by unilaterally rejecting an entire treatment modality without reasonable cause. I've had several PMs tell me that opioids are my best and/or only option, but they don't personally prescribe. That's horrible, but at least they didn't lie to or attempt to manipulate me like the PMs at Hopkins & UPenn did (unfortunately, this behavior is on the rise and more than half of all PMs engage in this kind of inappropriate behavior)~~

Notes:
* The only non-serotonin antidepressant is buproprion/Wellbutrin/Budeprion
* There is one antidepressant that actually enhanced serotonin reuptake (gets rid of the old, useless serotonin), however the FDA has not approved it (likely to avoid pissing off the multibillion dollar pro-serotonin antidepressant industry). For those of you outside the USA, the only commercially SSRE (Selective Serotonin Reuptake Enhancer) is called tianeptine/Stablon/Coaxil/Tatinol
* The National Pain Report article is based on a medical journal article in Neuron named "Central Terminal Sensitization of TRPV1 by Descending Serotonergic Facilitation Modulates Chronic Pain"
http://www.cell.com/neuron/retrieve/pii/S0896627313011410
http://bit.ly/1aRrRbU
* If anyone reading this believes that they may have OIH (or knows anyone who believes that they have OIH), PLEASE email me! I'd greatly appreciate the chance to discuss it with you. If you're interested, I'll also provide you with information to help you determine if you actually have OIH.

Mini-update

I felt bad for not updating much lately, so here we go. My doctor increased my clonidine patch to two clonidine 0.3mg/day patches (0.6mg/day). In short, it made me sleepy for two days, and extremely weak for a week. I'm recovering now, but I'm worried because my legs still hurt. On a positive note, it is helping with other symptoms, like my headaches.

Christmas was hard, but I'm surviving. I'm praying that Santa was a little late with my Christmas wish,  a pain doctor willing to manage my pain. Maybe, my future PM doctor is waiting for New Years and their New Years revolution to help more Medicare & Medicaid pain patients.

I wish everyone a happy, pain-free New Year

-Steve

P.S. Got a Canon EOS Rebel T3 digital SLR for Christmas. I haven't had a chance to play with it because it was just delivered yesterday thanks to FedEx taking THREE WEEKS to deliver it. I'm so excited! Remember, hobbies are great distraction techniques.

PCP

Unfortunately, I didn't feel up to updating you guys after my appointment, but better late than never.

As always, my doctor was kind and logical (even more so that I expected) while, unfortunately, medically impotent.

I informed him that the oxymorphone was effective for the minor flares, but that my around the clock pain is still out of control. I didn't even ask for a increase in Duragesic, I knew that I wasn't going to get it, so I purposefully dismissed the possibility. Instead, I asked for an increase in clonidine and a switch to the patches (1mg pill only lasts me 4 hours each). Since I reported the lack of side effects and my blood pressure was still high enough, my doctor put me on 0.3mg/day clonidine patch, but I highly doubt that it will work at that dose. However, I can't say for sure because haven't tried our yet(pharmacy had to order it and now I'm waiting for ride to pick it up).

I informed him that a recent urine test of mine was positive for THC & 0.48ng/ml hydromorphone. However, my test was false negative for lorazepam, dextroamphetamine/Dexedrine (Like Adderall), and oxymorphone (among others). I had also informed him that my wife tested negative for everything, despite being on oxycodone, oxymorphone, fentanyl, alprazolam, Adderall, and several others. I semi-frantically attempted to explain that I was baffled as to how it was possible that hydromorphone was in my urine and explained my theories and why they're unlikely.

The first thing that he asked me was whether or not they did confirmatory testing (a strong sign of a good doctor), but I informed him that the original test was GC/MS (standard confirmatory testing method), although I'm unsure if it was ever run a second time.

He was at least somewhat concerned about the negative testing given our ample doses of several of those medications.

He was also amazed that the lab didn't know that Marinol (synthetic THC) causes a positive test for THC, even under GC/MS. They apparently don't know the difference between Marinol/dronabinol and "spice", aka K2.

I was extremely worried about my doctor's reaction to the above information because he isn't very comfortable with my need for high doses. I was also worried because he is also a Suboxone doctor and seeing multiple addicts every day tends to skew your point of view, but our PCP acted sanely, rationally, and even respectfully.

I had also informed him that I switched from ranitidine/Zantac to Tagamet/cimetidine a while back and needed a prescription for that so that my insurance would cover it and I could stop purchasing it OTC. Unfortunately, it is a strong CYP450 3A4 inhibitor which would boost the efficacy of several medications that I'm on by slowing the metabolism. Despite informing him that I've been safely taking cimetidine/Tagamet for months and months, he wasn't comfortable prescribing it, so I'm going to try famotidine/Pepcid, again.

Despite the lack of opioids and trying a failed drug, again, the appointment went better than I had expected and I was reasonably satisfied.

As a checked out at the front desk, I asked to talk to the head of Managed Care (referrals department), if she wasn't busy. Thankfully, she want and I was able to handle a lot of things and gain some piece of mind. Unfortunately, she informed me that I'm out of options for pain management and she's unable to try again without risking the office's relationship with this offices (they get blacklisted).

You may be asking why I am writing all of this, after all this is an everyday appointment. While these little appointments may seem insignificant, they are the threads that make up the fabric of pain management and living with pain care.

While on a mini-rant of frustration, she (head of managed care, who I've known since childhood) attempted to defend our PCP for his inadequate treatment regiment by reminding me that he puts his medical license at risk and he's already pushing it with what he's prescribing now. Of course, I already know this and understand it all too well, but it is well worth remembering that it takes a very strong person to stand up even to the extend that or physician has and their livelihoods are at risk by helping us. The medical establishment as a whole needs to fight this so that doctors are not required choose between breaking their oath by letting their patients suffer and risking their medical license (and even freedom) because they prescribed longterm, and high dose, opioids to pain patients.

Although we need to fight for reform, we must also be appreciative of, and thank, the physicians who do risk their livelihoods to prescribe the medications that give us a life worth living, even off they aren't prescribing enough. I'm not saying kiss their @$$ for prescribing tramadol/Ultram/Ryzolt (antidepressant), Nucynta/tapentadol (antidepressant), codeine, hydrocodone (weak opioid), Percocet (oxycodone paired worth poisonous acetaminophen), or low doses of morphine, oxycodone, oxymorphone, hydromorphone, or even fentanyl, but when they prescribe inadequate, but substantial doses of opioids, they deserve our gratitude.

My doctor irritated me when he refused to prescribe low dose methadone or continue to prescribe Actiq/OTFC/Fentora/Onsolis/Subsys/Lazanda/Abstral (immediate release fentanyl), but I owe him thanks for prescribing high dose Duragesic and moderately high dose oxycodone, and now oxymorphone. One of the more overzealous PMs that he sent me to told him to take me off potential drugs of abuse like lorazepam (seizures, anxiety, muscle spasms, pain, nausea, insomnia), dronabinol (nausea, vomiting, & wasting), Duragesic, OTFC (generic Actiq), oxycodone, and WELLBUTRIN XL (antidepressant). Thankfully, he completely discarded his advise.

Good luck to everyone out there and try not to overdo it this holiday season. Remember, Christmas is special without you overdoing it. Your friends and family need you healthy, the cookies, cleaning, cooking, and other baking van wait or be completely skipped.

Steve

Wish me luck- PCP & IP

It's 9:40am and my wife has yet to sleep, and my sleep was highly fragmented thanks to her efforts to clean and organize a lot of our stuff. We're both going to be dragging when we go to my "next day" appointment later this afternoon. My pain has been out of control and, despite all of knowledge and self education, I have no idea how I'm going to convince my PCP that I'm in need of additional help.

While I both sympathize and empathize with the uncomfortable position that my PCP is in, I NEED him to help me until (unless) he van get me an intrathecal pump management physician, PM, and/or palliative care specialist.

I'm mainly asking for an increase and change in form of my clonidine (1mg pill 2/day --> clonidine patch 3mg/day), but he and I both know that my current dose of fentanyl patches has been inadequate for YEARS and he always gets uncomfortable whenever I mention poor pain control. He knows that I need to be back on low dose methadone and Actiq. My pain is getting worse and the dose of medication that's always been inadequate is extremely inadequate (even without the effects of tolerance).

Honestly, I'm extremely depressed and unsure of why I'm still fighting to live.

Sorry for the depressing post, I just needed to vent.

-Steve