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.