How Chronic Pain Killed My Husband — Pain News Network

https://www.painnewsnetwork.org/stories/2017/9/4/how-chronic-pain-killed-my-husband

The endocannabinoid system: an explanation for cannabis enthusiasts

Here’s a treat for your brain.  Knowledge is power…learn up!

http://www.thecannabist.co/2017/05/02/endocannabinoid-system-cannabis/78767/

Night on the Rack

Sleep is supposed to be restorative, or so we are taught.

Last night proved anything but.  I lost count of the awakenings occasioned by the loud complaints of various joints and their wounds. 

At 0230 I arose and rummaged through my bandage box, half asleep but unable to finish the job because of the excruciating hypersensitivity of the skin overlying the destruction in my wrist.  It feels like a remake of the RSD from 30 years ago…can that be?  I don’t know, but it is so stupidly sensitive that the mere touch of my well-padded wrist brace feels like liquid fire.  That’s what RSD feels like.

In between excursions to the bathroom and to the bandage box for a piece of biogel to put over my wrist bone, my night was spent in my mind’s idea of a torture chamber.

The scene:  I am conscious that I have been brought to this torture chamber to be “interrogated.”  I have no idea why.  The torturer is probing my mind for vulnerabilities.  At the same time, I am probing my mind for strengths and strategies for survival of what looks to be a prolonged ordeal.  I have no facts to give up, no-one to betray except my own autonomy.  

For that’s what’s at stake, isn’t it?  That’s the thing we, or I for one, most fear losing: autonomy, self-determination.  Aside from mobility and self-expression, that’s what I stand to lose from prolonged torture.

He is sizing me up.  He’s making pleasantries.  I play along, playing for time.  I know he knows that’s what I’m doing.  “Just doing his job,” that’s all.  I ask about his family.  He laughs.  

He wants to know which kind of pain I fear most.  What??  Does he think I’m actually going to answer that…correctly?  Surely, if I say “burning,” he’s going to burn me?!  But wait, if I say “burning,” he’ll know that I’m trying to deflect…no. I’ll say “all kinds.”  I fear all kinds of pain!

He laughs again.

Maybe, he muses, what we need to do, in order to properly sort this, is to try…a sampler.  That way we can explore a variety of stimuli, to see what works best for you.  Pain is such an individual thing, you know…

I’m awake again.  The sky is growing faintly pale.  I decide to get up and enjoy the coolth of the dawn morning.  It’s going to be another blazing day in Paradise.

Study: Spinal Cord Stimulation (SCS) Therapy Reduces Need for Opioids – National Pain Report

http://nationalpainreport.com/study-spinal-cord-stimulation-scs-therapy-reduces-need-for-opioids-8832762.html

This could be a blessing, if insurances including Medicare will pay for it….

Patient Abandonment: Personal Experience of an Ethicist

http://m.content.healthaffairs.org/content/36/1/182.full

A patient receives prescription opioids after an accident—and no support from his physicians as he weans himself off.

…In Which I Try Something Altogether New And Different

My recent posts have been lame and few.

Depression is largely to blame.  So is pain.  I wouldn’t go so far as to chalk my depression up to pain, as I’ve been suffering from depression literally all my life; but it sure is hard to get un-depressed when struggling in the grasp of unremitting pain.

I went to see an orthopedist about my shoulder.  He seemed like a decent sort.  I was struck dizzy by the splendor of his haberdashery.  His colors were straight out of the last Laura Ashley paint swatch book I consulted for a vintage room re-do.  

I had to drag myself away from admiring the knife creases on his shirt sleeves and trousers, the precise correctness of the diagonal striped tie….

The shoulder.  Oh yes.

It feels like how your shoulder feels after a **really good** flu shot.  You know, the way you slink around trying real hard not to bump into anything, and of course you do, because you always do, except you don’t normally notice it because your deltoid muscle is normally not all hot and red and swollen and sore.

You try to move your sore shoulder around, because you’ve heard that moving it around helps…with, oh, something.  I can’t remember.  The only thing that helps is Time.  Tincture of Time, that great healer.

So it goes with my shoulder.  It’s been hurting for several months.  I’ve given it gallons of Tincture of Time, to no effect.  In fact, it’s getting worse.

So it was that I came to visit Dr. Haberdashery on Friday last.  He took no x-ray, but put me through a rigorous demonstration of my range of motion, marveling at my flexibility (quite!).  I yelped and complained of pain, but forced my upper extremities into all sorts of contortions–in order to prove, I suppose, that I’m not…something.  I have a morbid fear of being thought a fake.  I believe this comes from having been accused of faking various things like asthma, which I got from inhaling my mother’s cigarettes since before I was born.  So now I feel like I have to demonstrate how hard I’m trying, to show how rigorously I’m adhering to my physical therapy regimen…which, in truth, I’m not really, because I’m simply hyperflexible.  I have abnormal collagen.  I can pop my shoulder right out of its socket!  

The diagnosis (sans x-rays) is arthritis.  The treatment: increase my celecoxib for a couple of weeks; then if no improvement, consider steroid injection.  If no relief with that, consider surgery to “decompress” the joint by grinding off the bone spurs.  Dr. H quoted the numbers: 80% get relief from this surgery, 20% don’t.  Better than back surgery, but still more risk than I’m willing to take at this point.

After my bout of calisthenics in the way of physical examination, my shoulder started feeling like a tensely  swollen and exquisitely tender softball.  Getting dressed/undressed is a new kind of challenge.  I quickly learned that pullovers are not a good idea.  I got trapped with a sweatshirt over my head and no way to get further in or indeed further out!  

Just because I needed more pain, something in my thoracic spine went “pop”a couple of days ago, and now it hurts to cough, or breathe, or move, or do anything….

So now, if you include my wrist that needs surgery (I do), I have three active areas of acute pain on top of my entire spine and the rest of my joints, which provide a kind of basso continuo for the baroque dance that is my Pain Body.  

So, did Dr. Haberdashery send me away with any pharmacologic relief?  Aw, come on…you know the answer!  Of course not.  We’re in a national epidemic of…something.  No, pain medication is no longer a menu item–not that it has been, not for many years, for me anyway.  Maybe it’s the brain diagnoses.  My experience has been that I’ve had to beg for pain meds, even tramadol.  This guy had “Please don’t even ask” written large all over his vintage green shirt.  I didn’t ask.

Up in a high cabinet, in a box with teas that I use infrequently, are a couple of packets of Mitrogyna Speciosa, also known as Kratom or Ketem.  It’s an herb that teeters on the brink of making the DEA Schedule I list. In fact, it was scheduled to be scheduled this past December.  In an unprecedented move, tens of thousands of people wrote to the DEA requesting that Kratom be saved from the list, that it not be torn away from law-abiding Americans who want to stay law-abiding and not have to scramble around in the darkness of the black market to get their medicine.  Sound familiar?   

Why does the DEA want to sequester Kratom?  Is it really as bad as heroin or (gasp!) cannabis? 

Well, not really.  In fact, Kratom simulates mu receptors, which is what opioid medicines do.  It’s a mild pain medicine, rarely results in addiction, and is extremely useful in helping opioid addicts to detox with hardly any withdrawal symptoms.  

We can conjecture why Big Pharma wants Kratom off the market.  With such valuable properties, people might not need a whole subset of expensive pharmaceuticals–anything from naloxone, which has risen in price some 1,000% (yes, that’s right) since the CDC’s initial report and the subsequent media blast about opioid epidemic, and the very real heroin epidemic that spits out scores of overdose victims daily–to fentanyl patches, to the drugs used by the “recovery” industry: buprenorphine and Suboxone being the contenders here.

Kratom can contend with the contenders in a number of contexts.  I’m not an expert–the opposite–so please fill me in, in the comments.  I’m just here to report my personal experience.

Which is: I was going mad with pain.  I had bought some sample-size packets of Kratom powder.  I took some.  I felt better.  Much, much better.  Still painful, but bearable.  Liveable.  Much better.

I’ve been afraid to try the Kratom because of fear of side effects.  The chief side effect is nausea and vomiting.  This is hailed by Kratom users as a built-in overdose preventer:  If you take too much, you puke and that’s that.  I’m not 100% convinced of that, but I have a lot of research to do, now that I’ve dipped my toes in the green waters of Kratom and lived to feel better.

And what about my legal medical cannabis?  Isn’t that supposed to be a panacea?  Why do I need something else?

Let me tell you, if I were to take cannabis sufficient to blot out this pain, I would be blotted out myself!  I do medicate at night very heavily, using a powerful coconut oil infusion that I’ve baked up into brownies…and what brownies they are!!!  Knockout drops.  If I got that medicated in the daytime I wouldn’t be able to stand up.

Which brings me to another Kratom advantage.  In low doses it’s a stimulant.  In high doses it’s a sedative.  Now, I haven’t found any definition as to what constitutes a “low” or a “high” dose.  I suppose it’s individual.  I started out with a gram yesterday, got some pain relief with that, and increased my dose to 1.5 grams today.  Better pain relief, felt a little bit high but clear and alert.  Decent!  Tomorrow I might try 2 grams.  

Have you tried Kratom?  What was your experience?

Alice B. Toklas Rides Again…and again…and again…and….

Chocolate.  More chocolate!  Gluten free.  And….medicated!

Yes, I tried a piece hot out of the oven.  I need the medicine, and the chocolate doesn’t hurt. It’s medicinal, too, after all.

The wind is kicking up a ruckus outside with the kinds of cactus that blow around so they can stick in your dog’s feet the next day.  It contributes in a bad way to my current state of ultra-ultra-ultra rapid cycling, punctuated by a few episodes of the dreaded mixed state.

I used to take Seroquel for this.  I’m not sure it broke the cycle, but at least it knocked me out so I could get a break from it.  But I started getting very bad neurologic side effects from the Seroquel, and had to stop it.  Some of the nervous system damage has turned out to be permanent, so there’s no way I’m going to try any other drugs in that class (atypical antipsychotics).  So in a word, I’m fucked.

But there’s a Lone Ranger on the horizon…I hope.

I have been so remiss in writing here that I can’t remember what I’ve told you.  Here, I’ll recap:

Spine pain got bad, had lots of consults, results: spinal arthritis, many collapsed discs, moderate spinal stenosis, and…drumroll…five vertebrae are filled with a benign tumor.  It’s benign, because it doesn’t metastasize, but it’s locally destructive.  And I have it in my liver, and god knows where else.

There are other joints in this pity party.  None of them are smokeable.

Which brings us to The Point:

I began using medical cannabis over a year ago.  It takes my spine and joint pain from “all-encompassing, intrusive, consuming” all the way down to, “OK, I can definitely feel this, and I think I’ll do the laundry and walk the dog now.”

That’s the difference.  Of course, I use a special strain of cannabis (PennyWise) that is engineered to have analgesic, anti-inflammatory properties while not being overly psychoactive.  I can get things done, and I’m not constantly going, “Ouch!  Shit!  Fuck!  Damn!” and so on.  Like, right now my thorax is aching and so is my neck and shoulders, but I’m not paralyzed by it.  Nevertheless, I am going to stop writing all hunched up, and go light my Hanukkah menorah.  Sixth night.

New Black Box Warnings: FDA

I have a hell of a toothache.  A couple of months ago I broke a tooth, and went to a franchise-type dentist who took emergency cases.  One of the down sides of being a professional vagrant is I don’t have a regular dentist. 

For a little over $1000 I walked out with a new crown and instructions to call if I had any problems.

I did have a problem, before I even left the office.

I felt that I should have had a root canal before the crown went on.  I know my teeth.  They are ornery, pesky things.  They operate in strict accordance with Murphy’s Law:  anything that can go wrong, will go wrong. 

The dentist assured me that the nerve looked fine, and he hated to mess up a basically healthy tooth.

A couple days later, the thing started hurting like a sonovabitch.  I called the dentist, who immediately assumed I was a drug seeker and blew me off, saying that it might take a few weeks to settle down.

It hasn’t.  In fact, it’s getting worse.  Now I have to look for a dentist who will…but wait, it’s Labor Day Weekend!  No dentist till next week, when I have to run up to Michigan to get some warrantee work done on the old brand new RV.  Maybe I’ll find a dentist there, with a lot of luck.

So, in order to buy some time and have at least a few hours out of misery, I took two of my hoarded tramadol tabs.  Now I have maybe 20 left.

Then I opened my email, to find a bulletin regarding a new FDA policy, intended to protect ourselves from ourselves:  black box warnings on both opioids and benzodiazepines, warning that they must not…Black Box MUST NOT…be taken together, because of the potential of respiratory depression leading to death.

A Black Box warning is the strongest labeling there is.  This means that in a time when even being prescribed pain medicine is becoming a remote possibility, those of us who take benzos for anxiety disorders and/or movement disorders, seizure disorders, or insomnia, will have an even more difficult time obtaining effective pain management.  Doctors who prescribe both meds at the same time will open themselves up for censure and lawsuits.  Pharmacists are being given increasing power to simply refuse to fill prescriptions.  They don’t have to, and if the FDA issues black box warnings, they are fully within their rights to refuse to fill prescription A if the patient is known to be taking prescription B.  In fact, if they do fill it and the patient has an adverse effect, the pharmacist is liable, can lose their license, and can be sued.

This is of direct concern to me.  My neurosychiatrist, who unfortunately has retired due to failed back surgery, hammered out a drug cocktail during the course of our 12 year clinical relationship, that effectively treats my bipolar, PTSD, and social phobia.  It includes 3 types of benzos.  All at once.

It also helps with the muscle spasms that cripple me day and night.

Now I fear that when my prescriptions run low, I won’t be able to find anyone to prescribe these lifesaving medicines because they are “too much.”

Worse, the degeneration of my spine is getting to a critical point.  One of the bones in my neck is rotating in such a way that it is pressing against my spinal cord.  I’m going to need surgery soon.  Major surgery, to fuse three of my cervical vertebrae and lift them up off the nerves they’re pressing on.

I won’t describe the surgery, because it makes me sick even to think about it.  I’ll just say that it involves lots of chopping up bone and remodeling.  Very, very painful stuff.

So…in today’s anti-pain med climate, what’ll it be?  Black Box Warning ahead!  Do I get to continue my benzo regimen so I can maintain a semblance of normalcy, and not be a hypervigilant mess, or do I get a modicum of pain relief after having this spinal carpentry fest?  Do I have any say in this matter?

Last time I had spine surgery, I got sent home with zero pain meds.  None.  And that was in 1987!

Why on earth did this happen?

Because I happened to joke to the pre-op nurse who was taking down my then very short med list (one med!) that I took Xanax for the three days before my periods, and that I was addicted to not having PMS.  She wrote down that I was addicted to Xanax!  It was recorded in my chart that I had admitted to being a drug addict.  So when I called the hospital to ask for some kind of postoperative pain relief, the neurosurgery intern scolded me about being a drug addict seeking drugs.  No pain meds.  And that was a relatively minor procedure, compared to the one I’m facing.

I really don’t know what to do.  Sometimes I wish I’d just die in my sleep, so I wouldn’t have to face this surgery and the prospect of being helpless, in agony, without the possibility of comfort.

Low-dose vaporized cannabis significantly improves neuropathic pain. – PubMed – NCBI

http://www.ncbi.nlm.nih.gov/pubmed/23237736

Read and think.

I LOVE Purple!

image

Purple is SO my favorite color.  ‘Specially when my shirt, my sweats, and the bruise from where I got blood drawn yesterday are all the same shade.

That’s not an actual bruise.  It’s more of a bleed between two layers of skin.  That’s what happens when my skin is the least bit disturbed.  I didn’t even feel the stick, so it’s not really trauma.  The really fucked up thing about these purple things is they turn into scars.  WTF?  Scars.

Now I have purple blotches coming up here and there from the deeps, very tender, with swollen blood vessels under them.  I showed all of this to the doctor I went to yesterday, who is supposed to specialize in things like that, but I guess not, because he kind of shrugged and said I ought to see a vascular surgeon, but, he added, they are hard to find in these parts.  Then he ordered a lot of blood tests, and told me to come back in two weeks to discuss the results.

If I’m still alive, that is.  These swollen veins can’t be a good thing.  If I’m not significantly better tomorrow, I will take Atina to board at the vet, and take myself to the hospital.  Surely someone ought to have an idea or two about what’s going on.  I hope.