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.

Nobody ‘Deserves’ AIDS…

I was a young nurse in the late 80’s when AIDS was really exploding.  I’d hear some really snarky comments about ‘well, those guys deserve it’.  Really?  Looking back, with more years of experience and observation under my belt, I’ve got some questions about other people who may have deserved their ‘end’.

Look at the number of celebrities who have died from drug and alcohol abuse/addiction.  They must have ‘deserved’ it, eh?  John Kennedy, Jr.- risky flying conditions, he must have deserved to go down, too.  The guy who came up with the Atkins diet- he slipped on ice, fell and cracked his head a good one, and died as a result.  Must have deserved that.  You think they have nothing in common? Well, consider this:  all high risk actions have high risk consequences. Period. 

I grew up in an evangelical church, and know the stand on homosexuality from that arena.  There was no looking at the person aside from the actions that caused some to contract AIDS.  I got to know some of the AIDS victims (and yes- they were victims of a disease that is incredibly cruel).  Not everyone who got AIDS back then (and certainly not now) was gay. And even the gay guys deserved some compassion.  Hey, church- love others, right? Or just ‘some’ others?

I’ll never forget one guy; he’d been with us for several weeks, and was deteriorating.  The family wanted him to be ‘comfort care’, no heroics; the doctor wouldn’t write the order.  Now this guy was lucky to have anybody around at all. Most of them were alone after all of their ‘friends’ and ‘family’ bailed out on them after their diagnosis. The nurses were their only contact with other humans.  Anyway, one night this guy stroked.  It was bad. The doctor still wouldn’t write the ‘Do Not Resuscitate’ order, so if he had started going south (even more) we would have had to ‘code’ him.  I talked to the doctor, who was great with AIDS patients, and normally very realistic with prognoses. He still thought this guy would pull through, at least this time. The nurses knew he hadn’t had a seizure as the doc thought; the period of symptoms after the ‘seizure’ had lasted too long.  The night after the stroke, this patient started to look worse (hard to do).  His nurse that night was doing all she could to keep the guy from trying to take his last breath. There’s not much to do, really , but hope- and try nudging the bed now and then trying to stimulate a breath.  The family was pleading for us not to do anything, and the charge nurse was on the phone to the doc, letting him know that we were going to have to proceed with a code very shortly if he didn’t give us the order to let him go in peace.  Well, it got worse, and his nurse was to the point of putting a back board behind him (a hard, thick plastic board that provides a surface that allows chest compressions to ‘work’), and I was grabbing an oral airway (to keep his windpipe open until the code team got there and put a tube into his lungs)…we were literally seconds from starting a ‘Code Blue’.   As his nurse and I exchanged helpless glances, the charge nurse came in and said “We’re done.”, waving the written telephone order in one hand.   Everybody in the room exhaled a huge sigh of relief.  The patient was pronounced dead within a minute or two. And the family was the one around him instead of ‘strangers’ pounding on him when he took his last breath.  I still have a basket that the family had left full of candy…reminds me of him. That night was one that haunted me for a long time. I was 24 years old, and learning some really intense lessons.

Then there was the heterosexual guy who was in bad shape with AIDS.  He wasn’t going to live (as was the case with virtually %100 of AIDS patients in the early days).  His wife had contracted AIDS  from a blood transfusion after giving birth to their baby.  The wife and baby were already dead.  Blood supplies are tested now; they weren’t back then.  Her high risk behavior was to give birth. His high risk behavior was to love his wife in a faithful relationship.

The guy who was transferred up from ICU was really sad.  I was helping his nurse get him settled in the room. We were adjusting blankets, the TV, and making sure he had the urinal nearby. He couldn’t speak well, but nodded when he understood what we were saying.  Very pleasant guy, with considerable AIDS related brain damage.  Anyway, his nurse and I had finished getting him settled, and left the room. We had gotten about six feet down the hallway when we heard him cry out “Oh, no. Oh, no.”, so we immediately u-turned and went back in to the room.  The patient had wet the bed. He didn’t have the ability to react to the need to urinate and reach for the urinal anymore. When we got him up to the chair by the bed, so we could change the linen, he kept saying “I’m so bad. I’m so bad.”  It was heartbreaking.  He was so ashamed.

People can be all judgmental all over the place.  But be sure to include everyone on that list. Don’t just isolate one sin, and ignore the rest in your wrath and condescension.  We all needed Jesus to keep us from eternal damnation.  I don’t see anybody around me now who even comes close to having the right to damn someone for their actions.  If you do, there’s a preacher in Kansas you might enjoy.  He’s at a church with ‘Westboro’ in the name.  You know- the bunch that pickets military funerals?  For my fellow Christians, I’m not asking anybody to put blinders on and ignore the Bible. In fact, I’m asking you to live it.  Hate is a choice.  But so is love.  If Christians won’t step up and help those who really need the love of Christ, who will?  Nobody deserves to suffer, and everybody can be saved.  If the first thing you think of when you are reminded of a particular group of people is ‘sin’ and some form of judgement, then love isn’t the first thing on your heart.  I’ll pray for you.