Pain Chronicles: A Relatively New Wrinkle

It seems like the day after my 8/19/15 appointment with my endocrinologist I've had this weirdness develop. It's a new issue related to an old issue if that makes sense. I have had a dull-to-agonizing throbbing pain and spasm in about 3-4 muscle groups from my neck/shoulder, elbow, forearm, and wrist on my right side. Chiropractic adjustments and deep tissue massages have not been able to unlock this pain mystery, though my chiropractor has been doing trigger point ultrasound therapy and that has helped minimize the pain temporarily.

While away on vacation at the end of August the pain amped up considerably, to the point where I called my chiropractor, worried that something was seriously wrong. Chiropractor arranged for an MRI to be done the evening I returned from my trip, and I scheduled an appointment with my physiatrist. 

Unfortunately, the MRI machine went offline the evening of my scheduled appointment, so my appointment was jockeyed to the next day and the only available appointment was scheduled two hours after my scheduled appointment with my pain doctor. Beggars can't be choosers, I had to accept this.

Pain doctor told me to bear with it an additional two weeks, and if it did not self-resolve by then, for me to come back in for an EMG so we could figure out, specifically, which nerve was involved, and then I'd move forward towards a discussion on how to address the situation.

I gave it two weeks, and procrastinated scheduling the EMG, as I felt the tiniest bit better. By three weeks, I thought I had turned a corner and was on the road to resolution. 

At current writing, about two weeks ago, I attempted to hang curtain hardware. Due to some peskiness with the drywall anchors I was using, it took an unusual amount of time to do a relatively simple task. Literally: Three hours. Granted, I took breaks, but even so it was approximately three hours with my arms above my head. As I was attempting to do this relatively simple task, a task I've done hundreds of times before in my life, I could feel something in me change. At first I thought it was just my mood being altered; however, I feel that the physical was affecting the mental, and I was more aware of being in a foul mood before I realized I was in crisis.

My spasms were back with a vengeance. My upper EMG was scheduled on 10/19/15, and to everyone's surprise (mine, my chiropractor, my physiatrist), my pain is not nerve related. All nerve activity was normal. So this leaves muscular or skeletal pain. Physiatrist sent me home with some samples of Flector patches (a transdermal NSAID) and said for me to call in a few days and let him know if they were helping.

To be honest, I don't know if the patches alone are helping or if it's a combination of the ultrasound therapy I do at night PLUS the patches, but I felt like there was some change, even if it were a small change.

So I called the doctor to have an Rx phoned in to the pharmacy, and if he could also call in an Rx for a muscle relaxant that would be very helpful. 

10/21/15 I had an appointment with my chiropractor (a standing appointment, not an on demand OMG I am in pain appointment), and I gave him the quick and dirty of what the physiatrist had to say about it not being nerve related. 

Trying to do a differential on my situation is interesting and challenging as I am not exhibiting any signs of auto immune related pain issues such as RA, PA, Lupus, so that leaves non-auto immune muscular-skeleton related issues (whatever THOSE might be--I'm still reading up on this).

Last night, I picked up my prescriptions, and took my first dose of Flexeril. After dinner, I did my usual ultrasound therapy and was able to drop off to sleep. I woke up this morning feeling ever-so-slightly "refreshed." I took a hot shower, put a Flector patch on, packed a Flexeril in my pill caddy for the day (Rx is written 2 daily as needed), and I am hoping for the best.

In the meantime, I am not doing any tasks that require my arms to be above my head, nor am I doing anything which requires my elbow to be bent for protracted periods of time.

I'm speculating that my situation might be  several separate issues flaring up in tandem: perhaps shoulder bursitis, tendonitis, and perhaps carpal tunnel (even though my right hand is my non-dominant hand, when I crochet, this is the hand that throws the yarn over my hook). My first impulse was to think it was possibly Double Crush Syndrome, however, from a neurological viewpoint, it doesn't look to be the case.

Note to self: First full day of both, Flector and Flexeril. Reassess situation in one week.

On An Upnote

So Saturday I head to my PCP, ISO muscle relaxers to help with this unrelenting shoulder-elbow agony. Somewhat reluctantly he writes the Rx for skellaxin.

Interestingly enough, there I was, full in the throes of two weeks (perhaps more, at that time) of this new, throbby-sobby pain, only to be surprised that my BP reading that morning was 114/72. Best numbers ever!

Syndrome & Medical Condition List

Itemized list of medical conditions, syndromes and complaints from head to toe, with my chronic pain issues highlighted in red:

Dry scalp (scale, at times similar to mild plaque psoriasis)
Migraines (mostly menses)
Clinical depression/anxiety 
Sleep disturbance
Herniation at C4/C5 (+1 more)
Retinal nerve druzen
Myopic, astigmatism in both eyes
Deviated septum
Approx 7 nodules in thyroid
Mild-to-moderate Carpal Tunnel Syndrome, (L) hand
Intermittent cystic acne under chin due to elevated androstanedione
Asymptomatic, idiopathic granuloma in left lung
Hypertension
Idiopathic, non-problematic palpitations (Possible panic attacks)
Hypercortisolemia
Unrelsolved, idiopathic elevated DHEA
Approx 4 cysts in kidneys
Intermittent/transient proteinuria
Borderline gout
Osteo-arthritis
Past history of fatty liver syndrome
Syndrome X
PCOS
Adenomyosis
Past history of fibroids
Squamous cell atypia + 1 recurrence prior to laser surgery
Herniation at L5/S1 (+1 more)
Spondylolisthesis I of low spine
Trochanteric bursitis, (R) hip
Compromised ACL, both knees

Status Report

Perhaps it's the summertime doldrums, perhaps something else entirely. Who knows. I've been struggling with negative thoughts and depression and anxiety for a while. And in a way, I feel like I'm on a sinking ship, and I'm tossing anything and everything overboard just to stay afloat.

Even though I have been pretty good about my little tweaks and rewards, as it pertains to the bevvy of appointments I find myself attending, and make sure I plan something ELSE in that day, something fun or interesting, almost like a lemony sorbet, to cleanse my day, as if the REAL purpose of my being in the city wasn't for the appointment/s, but for something FUN.

I have even thought outside the box at work, and bought a folding chair (like ones you see at sporting events), so I can sit outside for a half hour and get some sunlight and fresh air while I crochet and decompress. In the course of doing so, I have been getting some positive attention, and it breaks up my day (at least on the days I do this, which is to say, I am not doing this EVERY SINGLE DAY). This helps, but not enough.

I haven't gotten to the point where I'm sitting at my desk sobbing silently to myself, but I'm blue. And I feel trapped and the direct opposite of empowered, and this isn't where I wanted to be at this point in my life. I guess this is what a mid-life crisis feels like. I guess.

Now getting back to the sinking ship and tossing things overboard... In line with my philosophy "keep that which is useful, and discard the rest," after careful consideration, I've decided to discontinue going for my annual check ups with the bariatric surgeon. Bottom line is, I'm not getting anything useful out of it, it is a pain in the ass to get there, and while he was a good surgeon, his follow up such as it is, is lacking.

I feel I wasn't adequately prepared for how radically my bathroom habits would change.
I feel his nutritionist (who I dumped first opportunity I could) was outright lacking and judgmental.
I feel I didn't get the best bang for my buck or efforts, as in the end, he never put the mesh around my pouch, maximizing my weight loss.
I feel that he just wants me to shut up, as was evidenced by my last appointment last year, when I said I was depressed, rather than run a full panel on all my vitamin B levels (instead of just my B12), he was too quick to write a Rx for phentermine--which, is contraindicated, due to my hypertension. I feel he wrote that just to shut me up.

As a result of him writing that, I chased my tail yet again, and arranged an appointment last summer to see a psychiatrist, hoping perhaps we could test my neuro-chemistry to see WHAT EXACTLY is "off," rather than jump through a series of hoops, trying, unsuccessfully, one anti-depressant or anti-anxiety medication after another, just to be informed "We don't do that." Something so simple, a test vs trying one medication after another, just seems futile and ridiculous, and makes me realize that whatever the solution is, all I know is, it won't be found in a yellow pharmacy bottle.

So, I cancelled my appointment in June--and here it is a month later, and no call, not even an email from the NP (of whom I am chummy). 

A sign that I know things are bad for me, mood wise or depression or whatever THIS IS, I want to dump my beloved endocrinologist, who I have seen religiously every quarter of every year for the last eleven years.  I feel I am now coasting on fumes until menopause hits. No baby for me. I feel I am an uninteresting patient. And last visit, he mentioned he wanted to see me lose a bit more weight, which of course, I had a triggery type reaction to it.  I'm just tired fighting the good fight. I wish I could shake this.

I mentioned this to my husband, and he thinks I am nuts for thinking of dumping the endocrinologist, and suggested to me, instead of going there quarterly, perhaps I should discuss with the doctor the idea of seeing him every six months instead of every three. From a metabolic standpoint, everything seems "managed," no radical changes from appointment to appointment. I was considering rescheduling the August appointment to October, which then would have pushed it to 5 months between visits. I think I'll just get off my duff, get my blood work done tomorrow, and keep my August appointment--as it's also on the same day as my kidney guy. 

I'll try to do something productive today, and see if I can find an adrenal specialist, to help me with the elevated cortisol issues, or perhaps some other -ologist to help me with my pain, which is no doubt driving the cortisol to be elevated. 

Between my physical pain, and my anxieties about my job, I just wish I could find some measure of contentment, and living a life that matters. Because at the moment, I feel like I don't matter at all.

Movie Reference/Pain Scale

Fleshing out an idea of equating pain (physical and/or mental), blood, etc, with a movie director's style to drive home the point of pain. So when a person asks, "How are you, or how is your pain today?" You can answer with the corresponding director's name.

What I've fleshed out thus far:

Tarantino: Stylistically excessive physical violence in a sustained and significant abundance. (When you think of torrents of blood, you think, "Tarantino.") 
DePalma Graphic, bloody
Scorsese Physically violent with excessive use of profanity 
Kubrick At times a sadistic spectacle 
Hitchcock Mentally/psychologically overwhelming, at times with dark humor 
Coen Brothers Stylized, brutal & bizzare humor with an almost rhapsodic arc in the trajectory of my pain
Spielberg At times gruesome or spooky, or downright violent, but more often than not, "recoverable" (some might say unremarkable) 
Allen, Woody Angst-inducing Wilder, Billy Often lacking sympathy; stoic 
Goldwyn, Samuel. Above all else, a happy ending. (Superficial for the sake of appeasing others).
Capra Anti-cynicism. Feels unrealistically good.

Topamax: That didn't last long!

Despite the obvious blood pressure lowering benefit of the Topamax, I couldn't justify being on it much longer. It truly lobotomized me, and did just about ZERO to deal with the chronic low back pain. And when my monthly menses related migraine hit, it did NOTHING to thwart it. So, in the end it wasn't what I deem "value added." 

On May 11th, I saw my neurologist for a follow up. And he asked me how I felt. I replied, "This is how it's going to go down. I'm just going to do scatter-shot "word vomit" until you cry uncle." He nodded yes, and he let me ramble for what seemed like five minutes as I ticked off every observation I made, every side effect from the drug pretty much, and when I said the word "anhedonia," I felt as if I were a contestant on that old 1970s game show "Password," and "... the password is: ANHEDONIA." He said, "you can stop now." 


So, back to square one. And he cycled back through, "What about Cymbalta?" And I think it's time I find someone else to deal with the chronic low back issues. A friend was mentioning an integrative medicine guy in Stamford (a scant half hour from here), and I need to research more.

However, on the MIGRAINE FRONT, at the suggestion of my neuro-opthalmologist (in April) I started taking vitamin B2 (to be added to my usual line up). Perhaps it's coincidental, or perhaps my baseline chronic low back pain and uterine pain ECLIPSED my migraine pain this month, or perhaps the vitamin b2 actually worked? I don't know for sure. But for the month of May (crosses fingers, knocks wood, and doing darshan to a picture of Hanuman), so far, so good: No. Migraine. (Yet.)

Note: At current writing, I have been off the Topamax for 17 days.

Stay tuned.

Topamax Chronicles: Nearly a Month Deep Into It

I figure I better jot my thoughts down now while I am thinking of it, or else the ambivalence will creep in and I won't give a fuck, and the thoughts will be lost in the ether... or the thick trap of molasses which is where all my thoughts and emotions and intentions seem to go these days.

Without fail, I have been taking my 25 mg of Topamax daily, which was dispensed for my chronic low back pain. And just when I thought it was starting to help, my husband and I went on vacation and within the span of the first 24 hours of our trip, I felt like it set me back so much pain-wise, it'll take me a while just to get back to where I was. 

And I do believe it was helping, to a degree, but there's a cost attached to this. I will try my best to articulate this. This medication makes me paranoid, and just when the paranoia starts to crest, the ambivalence kicks in, and then I just stop giving a fuck, and the paranoia is beaten into submission for a while. This is a constant ebb and flow.

I am someone who lives with melancholy or dysthymia. I will say categorically this medication has not helped AT ALL in this department, if anything, it has made me just want to die. Sure, suicidal ideation abounds, but no compulsion to act on the thoughts. 

And yet, in other ways, stress has been lessened. At work, I don't know. It seems "different." I wouldn't say warm and fuzzy, but definitely I feel differently at the office. Sure, I still don't want to be here, but I find myself a bit more outgoing at the office than has been my norm for the last 12 years. I'm definitely more relaxed here.

My neurologist is the one who prescribed the topamax for me; however, my endocrinologist thinks we might have figured out what is driving my cortisol and dhea imbalance, and it looks like the culprit is my chronic pain issues. Chronic pain = stress and chronic stress = spikes in cortisol which then = hypertension issues. Nearly one month into this experiment, and my bp registered 126/62, then 122/70 at the second reading. The suspicion is the pain cycle contributing to the hypertension. 

My thoughts get trapped in the mire, a thick molasses trap in  my brain. My intentions suffer from the ambivalence. All I want to do is sleep. The medication has taken away my drive to do a lot of things with verve. I no longer have this insatiable desire to cook or crochet, and most nights I find I am dozing off in front of the t.v. within an hour after dinner. All I want to do is sleep.

Another side effect: I find my fingertips and tips of my toes to be numb. They feel numb like callouses, but I don't have thick callouses. And I feel a similar weirdness on my lips, slight, but it's there.

This week was my period. And while I did not have a migraine, yesterday I might as well HAVE had one. I felt out of control. Miserable. Achey. Head hurt, but not quite a migraine. So let's just say it did nothing to stave that off. And I was afraid to take a Frova while at work, thinking it might incapacitate me. And I was afraid to take an Allegra until I spoke to my pharmacist--seasonal allergies are also in play this week. 

So I'm rambling. Time to end this post.