Chronic Pain in Its Various Forms…and Dysautonomia

While I’ve lost count of the exact number of days, this current ‘spell’ of severe headaches has gone on for at least 4-5 weeks, with maybe five or six days of no headaches at all in any given day.  Of course, it isn’t ‘just’ a headache.  I get the dreaded nausea along with it.   There have been times during most days when the pain lessens, but most of the time it’s there.  Today has been pretty bad- I’m taking a chance by blogging, since the scrolling on a page can make things worse, but I have to ‘talk’ to someone.

I e-mailed my primary doc about changing the nausea meds. After several years on Compazine, it seems it’s lost its touch. The leftover Zofran (from chemotherapy for leukemia) doesn’t do much anymore, either.  She called in some Phenergan for me.  The pharmacy didn’t have the full 90-day supply available, but my dad brought me the 12 pills they had. They will call when the rest of it is available.  I was just so thankful to get anything that may offer a bit of relief from something.

I’ve been trying various ‘schedules’ of different pain meds, from different over-the-counter pain killers (Excedrin, Aleve) to a weaker  prescription med (tramadol) to a stronger prescription med (Norco 10/325).  None of it is working.   I even did a ‘bad’ thing today before taking any other prescription meds (so no risk of interactions) and took some methadone that I have leftover from a while back. It isn’t working, and I’m not willing to take another dose before talking to my pain management doctor.  He’s a board certified pain management doc, and not a ‘doctor feel-good’.  He has ‘rules’, which I respect.  I don’t want a doc who calls things in over the phone without assessing me.  I don’t want the drugs per se. I want less pain.  I don’t expect to ever be pain free, but I would like a lesser degree of pain.

Pain-free isn’t a realistic expectation with degenerative disc disease, degenerative joint disease, fibromyalgia, bulging discs (neck),  diabetic nerve pain,  and chronic headaches.  I’m just looking for a degree of relief that keeps me able to take care of the basic chores around home, and keeps me able to do some ‘minimal’  fun activities, such as watching a movie on TV, playing some online games, playing with my puppy, or other such forms of distraction and entertainment.  The last time I talked to my pain doc, we talked about the nature of degenerative disorders… they don’t get better by definition.  The fibromyalgia and headaches are just ‘bonus’ disorders 😦

I have to be careful about pain in regards to the dysautonomia, as well.  Pain is one of my major ‘triggers’ for heart rate and blood pressure changes that can land me on the floor, passed out.  Those who have severe menstrual cramps that cause lightheadedness and feeling ‘faint’ go through something that is essentially a result of the same thing- vasovagal nerve stimulation.  Vasovagal syncope (fainting) is fairly common. But any sort of fainting is a risk for injury.  And injury is a risk for further mobility limitations. I can’t risk that.  I want to continue to live on my own, and I can’t afford help (nor do I want someone hovering over me). Side effects of many pain meds also increase the risk of lowered blood pressure.  I have to keep that in mind with any new medication, as the interactions with the other meds I take can be risky.  I ‘ground’ myself to home when I am put on any new meds, just to be sure I’m not caught off guard at the grocery store or pharmacy (about the only places I go) with some drop in blood pressure from a new med not playing nicely with something else I’m on.

I’m going to have to go see my pain management doctor soon, to discuss a different plan.  I’ve been on stronger meds before, but have asked to go back on weaker meds, knowing that this is a lifelong thing, and I need options for the future.  For the degenerative disorders, spine surgery and another knee replacement are likely down the line, as well as hip replacements. I want to postpone those as long as possible. 😮  There is the possibility of having some sort of pain-nerve impulse thingie implanted (I need to read more about that).  I’m not all that gung ho about ‘stuff’ being put into my body that involves hardware.  I’m hoping that the weight loss with Nutrisystem will also help my knees and hips… my spine is a wreck from neck to bum, so weight loss will be good, but not a ‘fix’.

Methadone scares me. And, today, it’s not working.  But, it might be something I have to try more regularly to get a final ‘verdict’ as far as its real efficacy.  I’m also very reluctant to take methadone after working drug/alcohol rehab, and seeing how it is THE worst in terms of withdrawal. Those patients made heroin detox look like a cakewalk – and heroin addicts had it bad enough.  I understand that I wouldn’t be taking it for illegal drug replacement, and that chronic pain patients who take medications as prescribed are highly unlikely to develop true addiction (different than physical tolerance or physical dependence).  Only %3-5 of patients who take pain medications as prescribed go on to become addicted (which includes the strong psychological components of the ‘high’, cravings, etc). Ninety-five to ninety-seven percent of us don’t become addicted.  The ‘tolerance’ and dependence may require dosage adjustments.  That’s not because of addiction, but the physical acclimation of the body to the medication.  It gets used to the drug being there, and requires dosage changes to continue to provide pain relief.  I don’t like that, but I understand it.

I’ve also been on the fentanyl patch.  I don’t remember it being all that great at the dose I was on, but it might be something else that is considered.  The nice thing about ‘the patch’ was a continuous release of medication, so no ups and downs depending on me taking another dose.  It was also not hard to stop taking.  That has huge ‘benefit’ written all over it.  When I wanted to go off of it, I was weaned down to lower dose patches, and then given pain pills to taper off of the narcotics altogether- no withdrawal symptoms, and it didn’t take that long.

For ‘breakthrough pain’ on either methadone or fentanyl (or the current Norco), I’ve taken tramadol.  It’s not as likely to interact with the stronger narcotics or create an increased risk for respiratory depression (which is essentially what causes death in drug overdoses- accidental or otherwise).  It’s not a great pain killer, but it can take the edge off of the joint, muscle, and head pain that is getting worse.  Things like ibuprofen and naproxen sodium have limited use with the headaches and fibromyalgia.  They do help with the joint and disc disease to some degree, with no neurological or cardiovascular effects.  Worth having around  and taking !

I’ve tried physical therapy, chiropracters, Imitrex (which helped somewhat), heat (but that triggers the dysautonomia), cold, TENS unit, various pillows, and stuff to unclog my sinuses.  If I thought chewing on the siding of my house would help, I’d be out there with the woodpeckers.  While I’m not losing time off of work (been disabled since 2004), this pain of various sorts does change what I am able to do here AT home.  Things like laundry, vacuuming, other cleaning, etc are put on hold quite often.  If I’m having one of the ‘bad’ days, there’s no way I’ll get in a car and go to the grocery store, pharmacy, or MD appointments (the only places I go).

All I know is that the past several weeks (that have come in waves for years) are getting really old. I’m going to have to stop being stubborn about the stronger meds if I want any quality of life between ‘waves’.  I’m already limited. I want to have as much ability to function as possible, and this level and duration of pain isn’t OK.  My pain doc has been very good about letting me let him know when I need something stronger, since I’ve been so hard-headed about using the stuff.  He knows when I say I’ve had ‘enough’ that  I’m not looking for drugs- I want to not hurt (as much).  I need to make the appointment, and go see him (he does NO prescribing/refills over the phone past the ones on any written prescription).  He does NO dosage or medication changes over the phone.  So, I have to drag my butt in there.  He’ll probably do some sort of injection (spine, jaw, neck, occipital nerve blocks, facet injections). The ones in my lower spine seem to help the most- I could tell that my legs hurt less when I’m at the store after I got the last shot.  I may ask for my left knee to get zapped.

Now to just find a day to go and see him when I feel well enough to see a doctor.  But even though it’s been pretty unpleasant lately, I realize that I have so much to be thankful for.  I know that God hasn’t deserted me, and that I can get a lot of comfort in knowing that whenever I get to eternity, I’ll get a new body without pain.  That helps. 🙂

Update:   After being on CPAP for more than a year, the daily headaches are pretty much gone !  They were caused by hypoxia from not breathing at night.  The rest of the stuff is still a bummer, and I’m off to see my regular MD today (10-19-2016) to get medical clearance for massages and a chiropractor.

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The Psychotic State University School of Nursing

I must say that the vast majority of nurses I’ve worked with over the years have been wonderful.  Some were a bit on the side of displaced sorority sisters in need of a house (annoying and way too old to be stuck in an early 20-something mentality). And there were some that just left me with my jaw dropped through to the floor below me or backing away in fear.  The graduates of Psychotic State University’s School of Nursing. A frightening lot of the eternal mystery of  WHO LET THESE PEOPLE GRADUATE?  I understand someone needing to be at the bottom of the class, but puhleeze….

One of these miracles in self-survival worked with me on an acute neurology floor. Most of our patients were at least partially dependent for just about everything. Everybody helped each other out when moving these patients up in bed, cleaning them up, or transferring them to recliners or chairs.  One ‘special’ nurse (I’ll call ‘J’) was nothing short of mind-boggling.  I’d gone in to help her move her patient up in bed, and since we all had helped each other do this a bazillion times, there was an unspoken ‘dance’ in getting the job done. Put the side rails down, put the head of the bed down, move the patient up, put the head of the bed back where it had been, make the blanket look spiffy, get the side rails back up, get the call light within reach, and leave. Done.  Depending on how tall the bed was, we’d raise it to a ‘working’ height (to save our backs).  Anyway, I had started putting the head of the bed down (it was still moving) and noticed ‘J’ fiddling around on the other side of the bed, mumbling to herself.  I asked what she needed and she replied “I’m trying to put the head of the bed down.” 😮   I’m sure my eyes bugged a bit.  Another night, a bunch of us had decided to order burgers from a nearby place, and I asked ‘J’ if she wanted to order anything. Her reply:  “I don’t like Chinese food.”  Alrighty then….no Chinese burgers for ‘J’.  *shaking head* While she never smelled of a particular herbaciousness, there were suspicions.

At this same hospital (which really was a nice place to work- these examples were the flukes of nature that joined us for a period of time), there had been some budget cuts and an associated long term care portion in a free-standing building across town was being closed down permanently.  The staff nurses there were being dispersed throughout the hospital, ready or not.  Long term care nursing is its own animal.  I’ve worked it, and loved it- but it is NOT the same as acute care nursing.  The skill set is much different- and in some ways much more varied than the specialty floors set up in that hospital.  Well, our ‘gift’ from the defunked facility was nearly a fossil herself. She had to be older than many of the patients she took care of.  She was pleasant enough, and easy enough to get along with, which was always tricky in a group that had worked together for any period of time and knew each others’ strength and weaknesses’.  But she was a bit ‘thick’.  Normal conversation seemed to be a bit of a struggle for her. And her hearing was fine. Evidently normal nursing skills were also a bit difficult.  We had a policy that all insulin doses were double checked by another nurse.  One day she asked me to check the dose she’d drawn up.  No problem. Glad to help.  I nearly passed out when she showed me a 3-cc syringe with the insulin in it.  For those not in the medical loop, insulin is drawn up in very specific insulin syringes with 1-unit increments marked on the side of a ONE-cc syringe.  I was dumbfounded. I think part of my jaw may still be on that hospital floor.  I asked her how she knew how much insulin she had in that thing.  She had crickets and the deer-in-the-headlight thing all going on at the same time. She didn’t know.  And it didn’t seem to bother her that she was about to kill someone or leave them in a vegetative state. I’m not sure exactly what I was supposed to check, but I checked my butt on over to the charge nurse after taking the syringe away from Nurse d’Permanent Sleep.  Oy.   Needless to say, Einstein was sent for some ‘remedial’ education. We never saw her again.

At a drug/alcohol rehab place I worked at, many of the nurses were primarily psychiatric or chemical dependency rehab nurses. No problem since that’s what we dealt with %99 of the time, and the medical complications that came up were usually pretty specific to detox.  But…we had patients who had some ‘side effects’ to their years of drug usage that were emergency situations when they happened.  One weekend night nurse (a ‘traveling’ nurse- who were also good for the most part) was giving me report one morning about a new patient who had a high fever earlier in the shift (let’s say 103 degrees for some reference point).  This nurse was SO proud of herself that she’d been on top of things with Tylenol, and the guy’s temp was now hovering in the 97-degree range. That was NOT good news. When someone becomes septic, the body fights with a fever as a way to help heal itself; when the temp goes sub-normal it means the body can’t cope any longer and is decompensating. The train to dead has left the station.  I couldn’t get out of report fast enough to see if the guy was even conscious anymore.  He was, but looked BAD.  I got the OK to send him to the local ER to get labs done (and I couldn’t imagine them not admitting him to ICU). I was pretty sure he was in septic shock.  The local ER didn’t like drug patients, and sent him BACK to us after drawing the labwork.  Scared me to death.  I’m not sure what we did that day to keep him from dying, but the next morning I got a call from the hospital telling me his blood cultures were bad. Ya think?  He was an IV drug user with a massive infection around his heart.  The drug rehab doc arranged to send the guy back to the hospital where he stayed for a couple of weeks on IV antibiotics before returning to complete his drug rehab, with another 4 weeks of IV antibiotics every 3 hours (at a facility where the nurses weren’t used to giving IV meds, or dealing with a PICC line- I didn’t mind).  He was a great guy who got a second chance, no thanks to the Tylenol dispenser.  He should have been shipped out while his fever was high.  High fevers were not typical of what we used to see, and in an IV drug user should be a huge clue that something is wrong.

One of my nursing student compadres was ‘interesting’.  He reminded me of Waldo from ‘Where’s Waldo’ fame, sans striped clothes and beret.  Tall, skinny, huge glasses, and screamed “I’ve got uber-geek genes’. But he was very sweet. I got paired up with him to do a report on riboflavin during our Nutrition class. We had arranged to me AT the library at a specific time.  I got there a bit early, and waited.  The arranged time came and went.  OK, maybe he got hung up somewhere. SO I waited a bit longer. Nada.  I peeked inside of the library, and he wasn’t there. I wandered around, looking around the library and inside of the library, and never found him.  The next time we had class, I asked him why he hadn’t shown up. He looked baffled and said “I was there !  I was in the back in one of the cubicles.”   Really?  I was supposed to find him in the library’s equivalent of a cave?  I asked him if he crawled in the trunk when someone told him to meet him at the car…   I did my own report, and got an A. 🙂 This guy- sweet as he was- didn’t make it through the first class that newbie RN students take (Fundamentals of Nursing).  God looked kindly on patients everywhere.

I’ll think of more ‘special’ nurses to write about.  I learned something from each of them, and wondered how they ever got through the nursing schools they went to, or hadn’t been reported to the nursing board for being dangerous (even if unintentionally- they weren’t ‘killer nurses’, they were idiots).  I was scared for their previous patients; maybe they were no longer able to complain about the nurses in question… 😮