The Wacky World of Peripheral Neuropathy and Methadone

This hasn’t been a good weekend.  I slept most of January 1, 2016  (Hey, welcome new year !!), and the next two days haven’t been anything to cheer about (although I am alive, so that gets points).  This peripheral neuropathy is kicking my butt, and this morning it felt like a literal kick just to the right of my butt cheek crack. It is like a deep bruising- definitely a muscle type pain… not the weird ‘nerve’ pain of burning, numbness, tingling, etc.   The burning pain in both outer thighs is also bad.  Generally, the burning pain has been when I’m in bed, but today it has decided to join me until ?  But when I touch those areas on my thighs, it feels numb.  And then gentle contact with those areas brings a type of pain that is disproportionate to the degree of the touch.   When I say ‘burning pain’, I’m not talking about sunburn pain… I’m talking about hot oil type pain, over an area the size of the sides of both thighs.  The first time it happened, I froze with confusion.   Chemo and diabetes can have some gnarly complications.

I know I have a lot to be thankful for.  Since getting the CPAP for sleep apnea last year (close to this time), my head feels much more clear, and the morning headaches have been reduced by about %99- that  is HUGE !!  I’m still tired, but not nearly as wiped out as I had been post chemo.  Chemo fatigue is indescribable.  I’ve had fibromyalgia fatigue since the late 1990s, and it’s bad…. but chemo fatigue can be immobilizing.  Just getting up out of the TV chair to go to bed was overwhelming.  Fibro-fatigue is bad- but at some point, it eases up a bit to take care of basic daily activities enough to function, even if minimally.   (I live alone, so nobody to ask to do something on the fly…. there are a couple of friends around here who are so willing to help, but they have jobs and lives, so it can be hard to schedule a good time for both of us- but they are so willing, which is great.  My 83 year old dad is around, but I want him to have a life… I do ask him for help at times, but I don’t want to take advantage of him or anybody else). 

I know I need to contact the pain doc again.   This next two weeks, I have lab work, a follow-up with my endocrinologist, a routine visit with my neurologist, and the endoscopy with the ultrasound and biopsy of the junction between my stomach and lower esophageal sphincter for the “clinically significant lesion” that was found during the esophageal manometry to clarify the spasms in my esophagus that make swallowing so difficult.  Sometime in all of that, I need to see the pain guy.   And the CT of my pelvic area.  Can’t forget that.  I actually need to get that done before the pain guy, since I don’t want to do any spinal cord implants (to sort of confuse my brain about pain perception in my lower spine area) until I’m sure that nothing lurks in my pelvis.  SO many symptoms are common to a bunch of things, and I don’t want to have a metal implant (kind of like a pacemaker sized thingie) put in if something else is going on.

In the meantime, I’ve been prescribed methadone (t’s not just for getting heroin users off of heroin and on to something that has no ‘buzz’- it is a legit pain med), and have already been on ‘adjunct’ meds for other disorders that also help with pain management, like gabapentin, carbamazepine, clonazepam, cyclobenzaprine, and topical things like Icy Hot ‘sticks’, Salonpas patches, and sometimes just lying still on my uber comfortable bed, with my CPAP machine.

About the methadone.   I don’t like the stuff.  It does work for pain (same category as morphine)…. but I worked drug and alcohol rehab for about two and a half years, and from an objective point of view as a detox RN, it is the worst substance for detoxing.   I’m not concerned about addiction for myself.  I generally have a lot of pain meds left over, to the point of throwing them away because they’ve been in my drawer for so long.   I don’t mess with the instructions or dosing set by my doctor (who is board certified in anesthesia and pain management…. not a doc-in-a-box who only accepts cash, and has a line around the block).   I get no emotional ‘perk’ from the stuff.  But with any controlled substance (as well as things like caffeine, nicotine, etc), there can be physical tolerance and dependence.  That gives me the willies, which I guess isn’t a bad thing, but it does make it hard to take the methadone as often as I can (three times a day), even when I’ve got pain that ‘justifies’ taking the stuff.  It’s common knowledge that pain is easier to manage when it’s treated before it gets really bad… but methadone is no joke.  I have a lot of conflicting feelings about taking it.  And yet, the pain I have now is interfering with just moving around my apartment.   I need pain relief.  I’ve discussed my fears with my pain doc… and he reassures me that he will never leave me hanging as far as dealing with physical tolerance.

My pain doc told me that if the methadone doesn’t help now, the spinal cord implant is the next thing he would recommend.  I trust this guy, mostly because he is not a pill pusher.  He does prescribe them, but he also does nerve block injections with steroids and numbing meds, and options like TENS units (little electrodes on the outside of the body to help ‘trick’ the brain about pain perception).  He has rules about how things work at his office (no dosage adjustments over the phone, no messing with doses/frequency without his approval, random urine drug screens, calls for refills have to be on certain days, etc.).  If he feels people are not following his rules, they’re gone.  No jerking around with pain meds.  I respect that a LOT.

I also consider my age.  I’m 52 years old, and might have another 25 years, give or take, to cope with the neuropathy (and other) pain.  It concerns me to take strong stuff now, knowing I have an unknown number of years to live with this crazy body and the weirdness going on with it.  And yet I hurt.  I can’t take NSAIDs (ibuprofen, naproxen, etc) because of chronic gastritis.  I deserve a decent quality of life with less pain, and if that means pain meds, I need to accept that.  The doc can only help me if I am willing to follow his instructions with the meds that scare me.  I don’t expect to be pain free- that is totally unrealistic.  But less pain would be good.  I’ve had daily pain since the mid 1990s… it’s getting worse, and from different sources.    I want to be able to have some times to enjoy time away from my apartment, and hopefully with friends (those I’ve known for a while, and those I’m meeting at the Bible study).

I thank God for the doctors I have.  They listen, do the proper testing to find out what is going on, and in the case of my primary doc, orders things like my wheelchair to help me be as ‘able’ as possible to get around outside of my apartment.  That has been huge.  Going to the weekly women’s Bible study has been a wonderful way to get away, be around others, and meet people !  I’ve been isolated for the most  part for nearly 12 years. It’s been SO good to be around others, and hopefully be a source of positive interaction for them.

 

 

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Frustration with Chronic Health Issues and Pain Control

Yes, I know I write about this often.  It’s my primary way to get stuff out of my head and blow off some steam.  I figure that people can choose if they read this or not; I have no choice living with it.   I’m frustrated.  I’ve had more stuff going on the last few weeks that have added something else to the list of physical problems.  I broke a tooth (doing what, I’m not sure), and when I went to have it fixed, I opened my mouth really wide and felt something pop or pull- something ‘not right’- in my jaw.  I got a bunch of novocaine for the tooth repair, so didn’t think much of the jaw until the next day.  I still thought it was possibly just a muscle strain, so tried to blow it off. That worked for about a week and a half, each day getting a little bit worse.  I went to an urgent care clinic on the weekend when the pain got pretty bad, and the lackluster nurse practitioner said he thought it was TMJ.  I always thought that was a more chronic wear and tear thing, but evidently not.  It can be acute or chronic.  I had the other side of my jaw knocked out of place during a rape/attack in 1987, and while it has never closed right, it never hurt- but I wonder if it set up the other side to be more sensitive to injuries.  I don’t know.  I’m just ticked off.  It wasn’t anybody’s fault when this happened a few weeks ago- I’m just tired of something else going wrong.

I went to see my pain management doc, and he gave me more info about temporo-mandibular joint issues.  He said that my description sounded fairly typical.  He felt the ‘popping’ and ‘crunchy’ stuff when I opened my mouth. He thought an injection into the jaw joint might help (he’s injected my spine several times so getting ‘shot’ didn’t bother me).  Initially, the injection only lasted about 6 hours, but today (2 days after the injection), it does feel better.  I know that sometimes the steroids take some time to kick in.  I’ve since read that injections into the TMJ can cause increased joint destruction if done more than three times a year, or more often than every 3 months. No problem.

The pain doc also increased the frequency of an opiate I take (fairly mild one), and I ‘gave in’ and took it more frequently yesterday, per the new orders.  That may have affected the improvement today as well. I get so tired of dealing with pain management issues.  I’ve worked in the drug and alcohol rehab business as a charge nurse (RN) in detox.  I’ve seen what addiction looks like.  I’m not someone who is likely to take too many meds- if anything I back off.  I’ve asked for weaker meds more than once when stronger meds were offered. I figure I need to have something  in the future since degenerative disc and joint diseases aren’t going to get better.  Fibromyalgia is a bugger on a good day.  The chronic headaches don’t respond to many medications.  And, because of the ‘opiate hype’ from  high profile situations that went bad, I feel I have to defend my right to not live in constant pain because of someone else’s addiction.  I’m not an addict.  I don’t want pain meds to take care of emotional issues- I want to have decreased physical pain, taking meds as they are prescribed.  I just want to be able to stand being in my own body.

My pain management MD is board certified, and has specific rules for remaining his patient.  If people don’t follow HIS rules, they are no longer his patient.  Done.  I like that.  I also like that he doesn’t act as if my complaints of pain are nothing but ‘drug seeking’ behaviors seen with addicts.  He listens- and that alone is helpful.  I know he’s not judging what I tell him about my pain.   I’m sure he does mental assessments to look for red flags, but I go out of my way to not give him any.  I never ask for refills a minute before they are ‘due’.   I never claim I’ve dropped a prescription down the sink.  I don’t adjust dosing on my own (even though I have plenty of nursing drug manuals to find safe dosage limits).  I don’t mess with the plan.  I’m compliant.  He, in turn, isn’t extremely picky about the time interval between the allotted number of pills prescribed in a day.  He IS definite about how many pills/24 hour period he will allow.  That works for me.  If I take a pill and in an hour or two, I’m still not doing well, I can take another.  Chances are, that will get me through 6-8 hours, or longer.  He does allow for non-opiate meds for ‘breakthrough’ pain. The biggest help is knowing that something is available.  I can put off taking something if I know it’s there- I don’t have to ration to the point of living inhumanely. But I don’t have to take the allotted pills every day either.  I prefer not to.

Addiction involves a lot of components, most notably continuing to use the chemical in spite of negative consequences, and using the chemical for something other than its primary indicated use.  Medicating emotions with medications for physical pain is a huge trigger for addicts.  Many  addicts start out with physical injuries needing physical relief, and end up getting more of a positive emotional reaction that keeps them looking for more. No matter what.  I do believe it’s a disease. Nobody starts out hoping to become an addict.  But, it does screw things up a LOT for those of us who are not addicts and simply want to be able to stand being in a body that hurts all the time.  Statistics state that for non-addicts who are prescribed opiates, and use them as directed, only % 2-5 become addicted.  That’s not the same as dependence or tolerance (the body’s adjustment to having the chemical on board on a regular basis).  I purposely don’t take the stronger pain meds I’ve got (still not that strong in the opiate world) on consecutive days UNLESS I’m dealing with an acute situation.  Like my jaw.  But, if I do take the meds as ordered for 2-3 days, the relief is good enough that I can go back to non-narcotic options… anti-inflammatories, topical creams, ice packs, massage, etc.  I don’t expect to be pain free. That isn’t a reasonable expectation.  But an attempt at humane existence is reasonable, I think.

SO (in general), because %2-5 have problems, % 95-98 are treated as if they simply want a buzz.  That doesn’t add up in my book.  But the ‘problem patients’ are often very high profile celebrities, and anything to do with pain management gets lumped with them.  Opiates are a valuable part of being able to tolerate and treat physical pain.  I know that former co-workers (who are in recovery and have a history of addiction) at the drug and alcohol rehab place don’t agree with opiate prescriptions being used much at all.  There’s a big ‘anti-pain medication’ mindset out there.  And, non-recovering MDs take that stance out of fear and misinformation as well, I think.  They run scared.

My primary care doc isn’t comfortable prescribing opiates for a chronic pain scenario.  That’s fine.  We have an agreement that she can contact my pain doc at any time, and I let her know about any changes in my meds after I see him.  Everything is above board.  Total transparency.  And I don’t ask her for narcotics.  I do discuss non-narcotic pain meds with her, since she manages most of my medications for my list of chronic disorders.  Anti-inflammatory meds are in her domain.

My dad asked if the pills I take will make me addicted. I told him that I’m not an addict, so that is extremely  unlikely.  Addicts become addicted.  Non-addicts seldom do.  But, nobody seems to want to hear about the benefits of treating pain with medications.  Since nobody can see or feel other people’s pain, it often gets minimized.  If it doesn’t bother someone else, why should the one in pain be complaining?  Because an addict can’t handle a prescription for narcotics, then nobody should be given pain relief if they experience the level of pain that narcotics are appropriate for.  It sucks!!

I’m fortunate.  My pain management doc has ‘house rules’ that make sense. He can require a urine drug test at any time.  He doesn’t discuss or make dosage changes over the phone.  If he finds out that someone is jacking with the prescription frequency or dosage, that’s it.   I respect that.   I want someone to have those kinds of rules so he can treat people who are there for legitimate physical pain, who are seeking anything that will make existing more tolerable- not to get loaded.  I no longer have a frame of reference for ‘pain free’…. those 1-10 pain scales are a joke.  I’m always at least a 5-6, which sort of resets the whole thing.  Those scales don’t work for chronic pain. I can use them for new pain (like my jaw).

Regardless, I’m still thankful for a lot.  I’ve got a routine down, and know what my limitations are.  I ‘look OK’ so sometimes I feel very misunderstood.  But, I’m still able to live on my own, and enjoy my puppy, computer, and TV.  I don’t require a lot of time with other humans (which is very fortunate).  I have contact with friends on Facebook even if I don’t have much ‘in real life’ time with them.   I have a relationship with God that gets me through a lot.  If I didn’t have some sort of spiritual belief system, I don’t think I’d be able to tolerate a lot of what has simply become ‘normal’.  I also have the promise that in eternity, I’ll have a new body, and no more pain or disease. 🙂