FROM ONE SUFFERER TO ANOTHER -- BACK TO THAT OTHER!

Someone e-mailed me, having just found out that I have fibro through the Interwebs. She told me she has been in pain for years and her doctor, who has been giving her Lyrica for years, has thought she's had fibro for years. My response is below (notice the emphasis on drugs drugs drugs, even though I don't know whether Lyrica works like an atomic clock for her)... Also notice that I am, in fact, sleazy:

Begin:

There is one thing you must do immediately: Find a doctor who PRESCRIBES OPIOIDS! I can't stress that enough. I get pain relief only from them, but the asshole doctors I've found in Lummox [I change the names of people and places, nothing else -Ed.] won't write scripts for them (especially since I was taking one bomber of an amount of Percocet... Which still didn't work close to well enough! -- even my DC doctor was super-reluctant to get me on COAT -- Continuous Opioid Analgesic Therapy... but he WAS going to, right before I was yanked home by my parents (I was having a very very nasty flare).

[Wow! I can't use punctuation properly! -Ed.]

So I never have been able to experience anything close to 100 percent relief. Which makes me pissed off enough to write a blog. How nerdy and 1990s is that? I write a blog...Well, my first book wasn't picked up through the traditional channels (it sucks), so maybe I can sell my diary...

OK -- also, get yourself some Ritalin or Provigil. I'd be on the latter if my doctors had any desire to allow me to be somewhat awake and coherent during the day. Might as well get some kick-ass speed while you're at it....

And -- stop.

Wow. Rants like those just pop right out.

Anyway, of course I remember you! In fact (not to be off-putting or sleazy), the last time I recall seeing you was at Mutual Friend's graduation party. I was drinking a fifth of Bombay Sapphire and kinda hitting on you. Later it was tent time and I was between you and Erin Lastname (how is she doing? any idea?), trying to decide if I should make a move on you or not -- despite Erin being there.

The booze must have gotten to me... Then again, not enough for me to actually try something, get rejected, and possibly kicked out of the last available tent.

So that's that... Sorry it had to be weird.

OK, so yep, I have fibro, but I'm having pretty good days now. The flare is over, and things are pretty calm now.

EXCEPT I'm coming off some pills (including my beloved sweet divine Percocet so save me jeebus), and it's making me more aware of the world. Which sucks, because I'm stuck at my parents' house. Goddam it.

Sorry to be lengthy

--DBM

[Pain: I will discontinue this portion -- I'm coming off Percocet, etc. and onto the all-natural hell that will be me without it. Not the withdrawal, mind you, but the pain of being alive. With fibro. So figure it's 1,500/10 until this feature resumes, or is brought back by popular demand.

Anxiety: 8/10. I'm freaked right the fuck out all the fucking time.

Being lazy enough to post an e-mail: Hey that's pretty lazy!

Sleazy?: Umm-um!]

WITHDRAWAL!

I'm detoxing for the holidays. Stepping down off Percocet 10/325s by increments of one pill every five days. Right now I'm taking four per day instead of the normal five... Well, normal was six, which barely masked my pain enough for me to walk three blocks a day... Well, a day that would ensure that I would be on bed rest for the following two days.

So five wasn't enough, but was all I could get from the GP I had. He dropped me because he didn't want to deal with a fibromyalgic. And he didn't want to deal with a fibromyalgic who is seeing a pain clinic that is horribly averse to writing scripts themselves. If they had their way, a GP would write all their prescriptions.

Have I made the point that the pain (no "management") clinic I'm seeing is totally fucked up?

And I know it isn't fair -- I haven't described my dealings with my GP in enough detail yet. I assure you such will follow... Perhaps when I don't want to tear my teeth out...

Anyway, the posts may have more time between them. Or maybe not. Writing -- getting things out... can be therapeutic. In fact, I'm surprised the good people at QPC didn't prescribe it.

OH -- and sorry this is going to be an aside, basically -- I also am in the process of getting off Mirapex and Effexor and dear sweet Klonopin because all QPC will prescribe me is Lyrica. Lyrica Lyrica Lyrica by the mouthful. So how does 900mg of Lyrica stand up to Percocet 10/325s times five? It's a knockout in the first 10 seconds of round one... The winner? You're aware.

No segue -- I'm thinking about taking five Percocets a day until they run out. Why stretch out the misery? I know I'm experiencing less of it because of the (all too brief) step-down I'm doing, but am becoming convinced it would be better to go cold turkey (or turkee, if you prefer) from five. I've always preferred ripping off the Band-aid instead of trying to be gentle and taking five minutes and experiencing each individual hair being ripped out as separate events.

Will keep you, dear reader, up to date on any such decision. Until next time, I write you from Purgatory.

(My own, since the Holy Catholic Church decided there isn't one any longer...)

[Pain: from 10/10 to 8/10.

Anxiety: 8/10.

Self-righteousness: set to 10/10 and stuck there.]

PSEUDO-ADDICTION!

Fast Fact and Concept #69: Pseudoaddiction
BY David E. Weissman, MD
[Reprinted here to suit myself. I thank Dr. Weissman and wish he lived near me. -Ed.]

The term Pseudoaddiction was first used in 1989 to describe an iatrogenic syndrome resulting from poorly treated pain. The index case was a 17y/o man with leukemia, pneumonia, and chest wall pain. The patient displayed behaviors (moaning, grimacing, increasing requests for analgesics) wrongly interpreted by the physicians and nurses as indicators of addiction, rather than of inadequately treated pain. Put simply, Pseudoaddiction is something that we do to patients, through our fears and mis-understanding of pain, pain treatment, and addiction.

Diagnostic Features

Behaviors that suggest to the health care provider the possibility of psychological dependence (addiction):

• Moaning or other physical behaviors in which the patient is trying to demonstrate to the provider that they are in pain
• Clock-watching or repeated requests for medication prior to the prescribed interval
• Pain complaints that seem “excessive” to the given pain stimulus
• Inadequately prescribed and titrated opioid analgesics; typically the use of an opioid of inadequate potency and/or at an excessive dosing interval (e.g. oral morphine q6 hours prn)

Anytime there is a suggestion, because of escalating pain behaviors, that a patient on opioids may be “addicted”, Pseudoaddiction should be considered. Perform a complete pain assessment and review the recent analgesic history:

• Is this a pain syndrome that typically responds to opioids?
• Are the current opioid dose, route and schedule appropriate? If so, has a reasonable attempt at dose escalation been made?
• Is there any past medical history to suggest a substance abuse disorder? Complete a comprehensive addiction assessment if such a disorder is suspected.
• Pseudoaddiction improves with the provision of adequate analgesia, including opioids. In contrast, behaviors associated with a substance abuse disorder will not change.

Management

If you believe the current problem is Pseudoaddiction, there are two key management steps:

1. Establish trust—a primary issue in most cases is the loss of trust between the patient and the health care providers. The physician and nursing staff should meet to discuss how they will restore a trusting therapeutic relationship; outside assistance from a pain or palliative care service may be helpful. Plan to meet with the patient and openly discuss the events leading up to the current problem; engage the patient in the decision process about the current and future use of analgesics.
2. Prescribe opioids at pharmacologically appropriate doses and schedules; aggressively escalate dose until analgesia is achieved or toxicities develop (see FF # 18, 20, 36). Frequently re-evaluate progress in pain management and ask for consultation assistance.

---

References

1. Weissman DE and Haddox JD. Opioid pseudoaddiction. Pain 1989 36:363-366.
2. Sees KL and Clark HW. Opioid use in the treatment of chronic pain: assessment of addiction. J Pain Symptom Manage 1993; 8:257-264.

---

Fast Facts were edited by David Weissman MD, Palliative Care Center, Medical College of Wisconsin until January 2007. For comments/questions write to the current editor, Drew Rosielle MD: drosiell@mcw.edu. The complete set of Fast Facts is available at EPERC: www.eperc.mcw.edu

Copyright/Referencing Information: Users are free to download and distribute Fast Facts for educational purposes only. Citation for referencing: Weissman DE. Fast Facts and Concepts #69: Is it pain or addiction? 2nd Edition. July 2006. End-of-Life / Palliative Education Resource Center: www.eperc.mcw.edu.

Disclaimer: Fast Facts provide educational information. This information is not medical advice. Health care providers should exercise their own independent clinical judgment. Some Fast Fact information cites the use of a product in dosage, for an indication, or in a manner other than that recommended in the product labeling. Accordingly, the official prescribing information should be consulted before any such product is used.

DEAR MORPHINE ADDICT!

[This is a fake letter to me -- one I would receive if I moved from here to DC, had MS (I gave myself a more well-established disorder/disease to put too-fine-a-point on the idiocy I have to deal with), and was treated the way I am being treated by the folks at at Quack Pain Clinic (I didn't want to call it a pain management clinic for obvious reasons) here in Lummox, Jesusland. -Ed.]

Dear new patient,

We understand you just moved to Washington, DC. Congratulations, and thank you for making an appointment with Quack Pain Clinic!

We also understand that you were previously diagnosed with MS.

However, we at QPC simply do not trust your doctors from Lummox (or any doctors from small towns). It is standard medical practice for physicians not to recognize nor accept the hard work of others in their profession and, more so, specialty.

The doctors who diagnosed you with, and began your treatment for, MS may have been wrong. So, of course, the only rational course of action is to begin from square one.

Below is what you will need to do.

1: STOP TAKING EVERY MEDICATION YOU'RE CURRENTLY USING!

If you go through withdrawal because of this, see if you can get into an ER. Most importantly, though, your withdrawal will confirm you're nothing but a drug addict and, with 100 percent certainty, seeking only drugs from this practice, and not relief from your symptoms (which may or may not be MS-related).

The drugs you are on now were prescribed by other doctors FROM A SMALL TOWN! FROM OUT OF STATE!, and so you need to stop taking all of them. Especially the Morphine and Klonopin which, we understand, are the only things that alleviate your breakthrough pain and anxiety.

ESPECIALLY: Since you were diagnosed with MS, the progression of which is slowed or halted by Avonex, you will need to stop taking this immediately. The main symptom of MS -- the relapse of demyelinization in the brain and spinal cord -- which is treated by the Avonex you currently take WILL NOT, FOR WHAT MAY TAKE FIVE YEARS, BE TREATED BY THIS PRACTICE. We need to be sure you are not an Avonex-seeker. This will take years, and your condition will become markedly worse during this time.

Please understand our misgivings regarding your former doctors, and our suspicion that you are nothing but a junkie.

We simply cannot take chances with our insurance.

2. See a psychologist and a psychiatrist. Whatever you have -- even if it is MS -- almost surely has its root cause in emotional trauma. Please do not search the Web for scholarly articles or studies that back this up, because you won't find them. Rest assures that we know what is best for you.

3. See a physical therapist. Because it is almost impossible for you to move, and because doing so causes you agony and exhausts you in a matter of minutes, it is incredibly important that you do some kind of work out at least 30 minutes per day.

4. We will follow up in one year if the above people can't help you because, perhaps, emotional trauma is not the only cause of what ails you, and the pain of physical therapy has yielded no gains.

5. At that point, we will have to weed out Spinal Cord compression, Stroke, Acute Disseminated EncephaloMyelitis (ADEM), Lyme disease, Sub-Acute Sclerosing Panencephalitis, Neurosyphilis, Progressive Multifocal Leukoencephalopathy, Systemic Lupus Erythematosus, Cerebral Arteritis, Complicated Migraine, Diabetes, Hypothyroidism, Myasthenia Gravis, Acute Transverse Myelitis, Herpes Simplex Encephalitis, Polyarteritis nodosa, Sjogren syndrome, Behcet's syndrome, Sarcoidosis, Paraneoplastic syndromes, neuromyelitis optica (Devic's syndrome), HIV-associated myelopathy, Adrenomyeloneuropathy, other Myelopathy, Spinocerebellar syndromes, Hereditary Spastic Paraparesis, Guillian Barre Syndrome, Polymyositis, Benign Paroxysmal Positional Vertigo, Parkinson's Disease, Cerebral Haemorrhage, Amyotrophic Lateral Sclerosis (ALS), Mononeuritis, Huntington's Disease, Post-Infectious Encephalitis, Arteriovenous Malformations, Arachnoid Cysts, Arnold-Chiari Malformations, Cervical Spondylosis, and many more.

We will confirm or rule these out one at a time.

6. Then, if your diagnosis of MS is definitive -- perhaps in two to three years (though almost certainly longer), which it took your doctors in Lummox to diagnose and treat improperly -- you will be prescribed aspirin for your pain. Work with your psychologist and psychiatrist on your resentment toward our practice, and on any other MS symptoms with your physical therapist. This will be the extent of your treatment.

7. Please keep in mind that 1/3 of our patients have gotten 50 percent better on this protocol. (This has nothing to do with the fact that about 1/3rd of people respond positively to placebos -- anything -- and these people report roughly 50 percent improvement).

8. If you seek a second opinion, we will be sure this other doctor hears about you from us before your visit. This is our policy with all drug seekers.

Finally, welcome to Quack Pain Clinic. Thanks to our policy, above, you will find that we are your only option! Should you survive the withdrawal from multiple drugs you are about to experience, we look forward to seeing you!

Sincerely,

Theducksays Quack, MD, and everyone at QPC

GET ME AWAY FROM HERE I'M DYING!

I believe I'm going to die, sincerely, for one minute, then am convinced I am fine as cherry wine the next. I cycle from total belief in the former to total belief in the latter, and have been doing so for perhaps an hour now.

I have been feeling like unholy hell for the past few days and have been taking dextromethorphan on top of my other drugs as a little experiment. What's DXM? Cough syrup, friends. Take a bottle of Delsym, drink it down, and see what happens (wait -- that was not an instruction). I recommend the orange flavor over the purple (it can't properly be called grape).

Wait, no -- I don't recommend anything. To the point:

Here I am, a 29-year-old, typing away at his father's computer, which is on the main floor above the basement I live in, tripping balls on cough syrup and SSRIs, and hurting like hell from the waist down (and there's no heaven above). My pelvic bone is on fire (of course, that is to be taken not at all sexually) and my legs are made of cement that hasn't dried just yet... but almost.

I want to be ages and hours and miles away from all of this... No such...

A word creates itself and reverberates inside what I feel is an empty skull, trying to find permanent lodging. ...I feel like I could go to sleep, vomit, or watch a few hours of Twin Peaks off the TiVO.

...Getting a cigarette out of the pack out of my pocket just now made me think my arms were going to snap off at the shoulders. The pain was sharp, like bear traps released on my joints, but now it seems far away.

And I suppose that is what the DXM is for... Depersonalization. Sure, itching your temple with your thumb just now was a new hell Dante missed out on, but don't take it personally! It's not you. It's the disorder. And it's sorry that things just don't seem to be working out.

I know I will regret writing this, but I had to make myself type at my worst... I must think of posterity... The definition of which I'm going to have to look up right now... OK, fuck posterity.

So why? Why am I writing this, now, though I writhe in my chair from pain?

...I think it's because the office with my dad's computer is on the way to the upstairs bathroom, which I went to use maybe an hour ago. It's as simple and stupid as that.

[Pain: 10/10

Anxiety: 7/10

Cough syrup: Too much of it was consumed. But when you're in the fire you'll consider yourself lucky if you can find your way onto the frying pan.

Chance I'll rue this post: 9.5/10.

Love and kittens]

DR. DOOM!

So the nameless doctor in a nameless place in a nameless state did the following for me: he gave me trigger-point injections in my lower back. The pain was so excruciating I almost bit through my clenched fist, and my screams(?)... sounds kind of effeminate... likely were heard by all the other patients. It was the worst pain I've ever experienced, and I've bruised a kidney, broken a wrist, and have had a really bad paper cut on my thumb. It was such that, when the doctor was done with my right side I said, "Don't do the other."

"But the treatment works best if we--"

"Don't do the other. I can't stand it."

I looked at the nurse, who was looking at the doctor -- I'll call him Dr. Hilarius -- and knew what was coming: five more stabs in the back.

Which is the best way to describe what Dr. Hilarius did for me overall. After giving the injections, he told me to get a prescription for 600mg of Lyrica per day, an increase from my then-current 400. And that's all he did.

I informed the nurse, who was the only one who would talk to me after the injections, that I take Percocet 10/325s (10mgs oxycodone, 325mgs acetaminophen) and, since the doctor had prescribed nothing (I was to get the Lyrica, even, from my general practitioner) I was going to go through withdrawal, and then the pain that returned was likely to be so unbearable that I was bound to think of suicide.

She talked to Hilarius outside my room and came back and had to report what Dr. H said:

"If you have any problems, just go to the ER."

...My parents had told me that he was the only pain specialist in town, and that I had to deal with him for better or worse. So I held my tongue... After I said

"Well, could you please tell him that it's extremely negligent on his part to let a patient go through withdrawal -- and especially one with a history of suicidal ideation?"

The nurse left and came back:

"The doctor says you can get the narcotics through your family doctor. Otherwise, I guess you just have to go to the hospital."

And I held my tongue.

Next week I see a psychologist at the same treatment center. I have come to the early conclusion that I am trapped in a pain management center that manages pain by increasing it or letting it be.

Whenever I enter the clinic doors, I'll be surrounded by doctors who do not believe in practicing medicine.

[Not bad for today... Left a lot out, though. I'll have to tell you about how I now have 150 Percocet tabs, at the cost of being dumped by my GP. In Bush's America, no one wants to prescribe narcotics. They could end up in Bush's niece's hands! (Was it his niece that had the jones for Xanax? ...Anyway...)

Pain: 5/10.

Anxiety: 8/10.

--Anxiety is a new one! Which reminds me to tell you about the shrink I visited November 27th! Wow. It was classic. I've never come so close to hitting someone.

So you have a lot to look forward to. If my Dad still had some Provigil, this would go a lot faster. Oh well -- the suspense builds!]

I'M MADE OF GLASS THAT HAS BEEN SHATTERED AND GLUED TOGETHER COUNTLESS TIMES!

Tomorrow I see a pain specialist. I saw one for about two years when I lived in Washington, D.C. I recently moved home because I couldn't hack it at my job because I couldn't think clearly and quickly -- FibroFog! -- and was given the option of quitting or being fired. I chose to retire. I packed up my things and went to my apartment. I barely left for more than three months, while I spent my savings, investment and retirement account money (it didn't take much time because I'm 29, not because I went on an early-retirement spending spree. Though I may have if I had known a heroin dealer). Finally, I had to admit that it takes the Social Security Administration a little while longer than that to award disability benefits (which I filed for, through a law firm I saw on a commercial during daytime television during my first week of retirement).

[OK, great start! We'll leave it here until next time. When that is will depend on how I feel (superterrific most of the time!) , especially after seeing the pain specialist tomorrow who, I hear, is a piece of shit. Why is he that bit of nastiness? Because he refuses to prescribe opioid analgesics to any of his patients. It's a good thing I don't feel as described in the heading every day! Nor that I've tried every SSRI, Lyrica and what have you, and that narcotics are my only chance to feel at all OK!

Stay tuned for: Doctor Doom!

Today's pain: 5 out of 10

--Every post will end with me giving my pain on a scale of 1 to 10. This is my scale, though. For you, wuss, my one would be your Gimme A Gun Hell Would Be Better. Wuss.