Oh, this post has been a long time coming!
2008 was a rough year on me. That January, I began having persistent lower back pain that did not go away like most pain flare-ups eventually do. I went to the doctor, and I was sent for x-rays and ultrasounds, then scheduled for a laparoscopy to confirm the condition that we pretty much knew I had for five years previous to that, but which no doctor ever saw fit to address. (On resolving open questions)
Hindsight, etc. We now know that I have fibromyalgia (dx age 12) and endometriosis (dx March 2008); that endometriosis is diffuse, all over the organs in the pelvic region, particularly on the back of my uterus. Some of it is new, but much of it is scarring from old endometrial implants back when my hormones were left uncontrolled (estrogen is what feeds/flares/inflames the endometrial implants) because none of my doctors thought “pain so bad I couldn’t sit upright the first day and couldn’t walk completely upright the whole week” was something that really merited any attention. It caused pain throughout my life, but for whatever reasons, it significantly worsened that January — setting in for good, no longer an occasional visitor but now a permanent fixture.
I went through two treatments that year: six months on Lupron Depot, a GnRH antagonist which stops the body’s production of estrogen, inducing what is basically menopause; and physical therapy, for several months late that summer. The Lupron results were mixed, while the therapy was generally helpful.
My physical therapy included heat therapy, stretching exercises, resistance exercises, heat ultrasound, and electrical stimulation. I have heat at home, I can do the exercises at home, and I always felt a bit worse at the end of the ultrasound anyway.
But the electrical stimulation — I was surprised, but it made such a difference. I attended therapy three times a week, and I got twenty minutes to lie back on the moist heated pads with the electrical stim going. I’ve been using heat as part of my pain management ever since I realized I had chronic pain — I know what it feels like and how it affects my body, how it helps and how much. Adding the electric stimulation, though, really seemed to soak the pain straight out of my back. I was able to perform the exercises less inhibited, and it seemed to keep the pain level down overall, even outside therapy.
My therapist told me, at one point, that there were portable versions of the giant machine that got wheeled up next to my old-school exam-room-style bed, for personal, individual use. And later let on that it was even possible my insurance would pay for one. And that they had one available for patients to take home and try out for a week to see if it worked well for them.
So I tried it. And it’s not like it was magic. There are so many parts to my pain management routine, by now, that even though some of them are amazing, they don’t overwhelm the whole picture. But it provided solid pain relief in a way that reduced the amount of narcotic pain killers I had to take to control the breakthrough pain (pain you still get despite everything else in your treatment plan). And it was something I could take with me, and use, pretty much anywhere in any way. Except, you know, swimming.
(My husband and I spent a week in a cheapie room on the beach in the Outer Banks for our anniversary this year — it was a bit too cold still to be able to play in the water, but the beach was gorgeous. And I say this as a Pacific beach snob. But I wanted so much to wear my TENS when we went on our walks down the beach, but I was in a bikini and near water, not to mention what if it gets dropped in the sand — too risky. The thought of walking along with the electrodes and lead wires hanging off my back, in a bikini, though, was tempting.)
TENS stands for Transcutaneous Electrical Nerve Stimulation. Basically, you attach two or more electrodes to the skin (wherever, with certain important exceptions) and connect them to a device which delivers electrical currents through the skin. Electrical stimulation is thought to work by blocking or replacing pain signals before they travel through the nerve to the brain. It also stimulates endorphin production in the body, among other things that help reduce the pain level. The science is here if you like that kinna’ stuff.
Portable TENS units allow a person to take advantage of this pain relief without being tied to a gigantic machine. Which means they can go about their life, doing just about anything with the exception of driving (you can wear the TENS, but it needs to be turned off) and anything that would expose any of the components involved to water. Apparently there is some suggestion that TENS may even help labor pain.
The old-school versions may be cheaper, and found online. They’re usually analog (no digital screen, or only a readout screen), square with a couple knobs/wheels on the top to control the level of stimulation on each channel.
The newer things are damn expensive, though, which means that they are only an accessible solution if you are insured, your insurance covers them, and you can convince your insurance it is medically necessary. My doctor was extremely cooperative; he knew to document my condition before, during and after use, making it hard to ignore that there was an obvious improvement in my physical condition. He knows how the insurance companies work, and how to make sure they work for his patients.
Damn, I hate insurance companies. (Ahem.)
But they did end up paying for mine (after several months rental period, several visits and forms and and hoops to jump through). This is where I am extremely lucky that I am married to a man who works for the state. Because they give pretty good bennies. Not the gold-plated stuff your six-figure-makin’ elected officials get, but good enough that I know exactly how fortunate we are to have it considering the wider economic conditions.
I spent my time un- and under-insured, and uninsurable. I spent my years paying for my medications out of pocket, draining my small savings. I spent a couple years on Medicaid and a couple years on Medicare. I’ve been through the range, at this point, throughout my life. So I know well that I am privileged in this way. Cuz I’ve been on the other side of it.
And it’s kind of fucked up that anyone’s access to health care (that works) is predicated on whether, and whom, they marry.
I started my first full-time job at the end of 2008. I’d never worked full-time before, or at a desk job. I started as a restaurant greeter and then moved on to retail, canvassing, and more retail. You know, you start low and you work your way up. Well, I started with six hours a week showing people to their tables in a one-step-above-fast-food breakfast restaurant and worked my way all the way up to a starting clerical job with the state. I was so excited and so fucking proud of myself.
Most of the people at work, after a short time to get to know me, would exclaim that I should apply to (a higher status job), that I was obviously smart enough to be able to do the job and I worked well and I’d be a shoe-in. What they didn’t understand is that this was it. I already climbed my ladder, and this was the top. And I was extremely happy there. I wanted nothing to do with (that other job). There were parts of it I know I would hate doing and didn’t feel particularly suited for. I’m comfortable alphabetizing files and doing data entry. I don’t think it’s “below” me. I think it fits me perfectly.
But clerical is lower in status, and (that other job) is a sign of a Better Worker or whatever, so obviously I should do that, I should keep climbing, I could end up a supervisor someday, you can go so many places… but I didn’t want to go anywhere else. I chose where I was because I knew it fit me, and it did, and I wanted to settle down there.
This is the reality of my life.
Working full-time was a huge stress on me. I had to get up two hours early, only 30-45 minutes of which were spent half-conscious and doing my hygiene and preparation to go out the door. And then I would get home from my eight-and-a-half hour day (hour lunch) and I’d only be able to stay awake for maybe three more hours before I just didn’t have the strength, and I would crash in bed. And those three hours — some of them were spent undressing, destressing, eating dinner, spending time with my husband, with my cats — I ended up getting about an hour a day of time that I can say I was mostly alert, cognizant, and able to read a little bit of news and blogs and communicate a little with my friends. One hour per day that wasn’t devoted to eating, sleeping, hygiene or working.
I managed to make it through, mostly with the knowledge that I got the summer to recover (my job is seasonal). I push myself to work hard so I can manage a 37.5-hour week — no benefits, no time off, nothing, since it’s not a year-round permanent job — push myself through five months of that, and take seven months of rest to balance it out.
The one biggest factor in my ability to actually make it through those full five months was my TENS.
I wore it every day, for the duration of my workday.
Here’s what went in to using it:
Putting on the skin prep, attaching the electrodes and trying to find the right places, changing out the batteries and so forth was part of my morning routine, and taking off the electrodes, removing any remaining adhesive, and treating my back so my sensitive skin wouldn’t break all over the place (making it impossible to use the TENS again until it healed, which with my skin is an excessively slow process) — that was my after-work routine.
Skin care was essential for me. I had to make sure to remove the adhesive residue (they provide pads of adhesive remover). Then wiping down my entire lower back with witch hazel, then carefully applying Sween cream (a medical-use moisturizing lotion that doesn’t make it impossible to adhere anything the next day) and some sort of product to calm the itching irritation (I’ve cycled through several, including the Bikini Zone cream with lidocaine, which seemed to work particularly well — now using a Bactine lidocaine spray, hoping the antiseptic in it helps the healing of any small skin breaks that show up).
Oh, and only use the specialty sensitive skin gel electrodes — regular electrodes are gonna rip up my back no matter what I do after.
And I’ve had to learn extreme self-discipline in not scratching my screaming itching skin when I miss any part of that routine, because even very slight rubbing will break that irritated skin.
That’s just what works on my skin. My skin is particularly sensitive in its own particular way. Most people do not have skin like mine. And even people whose skin is also sensitive may respond differently to different products, may not need as much (may need more) and so forth…
It takes three AAA batteries; I was provided with a set of rechargeable batteries and a charger, but given my background in camera sales, I know that most cheap rechargeables are more of a pain in the ass than they’re worth — they drain quickly and die just as quickly. At the time (I’m not sure what’s true now) the silver-and-green Energizers were the best-performing rechargeables, so I bought a bulk set off eBay for cheap.
I keep a set of batteries charging at all times, so I can rotate them out. Generally, a new set of batteries, freshly charged, will last a full day. Now that I’ve had them for awhile, they tend to last up to a full day, sometimes draining about 3/4 of the way through the day. So I keep a set of three newly charged spare batteries with me when I’m out somewhere for a whole day, too.
(The Energizer Lithium AAAs are also excellent, but they annoy me because they don’t work well with the battery monitor on my particular TENS unit; they’ll show totally full for days and then bam, they’re empty all of a sudden. It makes it hard to know when to be prepared for a change, which I need to be able to monitor ongoing. The rechargeables, OTOH, generally give you a good idea how much power they have left in them on the battery monitor.)
And here’s what came out of wearing it:
Where back pain formerly prevented me from performing certain activities — particularly anything involving bending or kneeling, lifting, extended reaching, and even just the pain and fatigue that sets in during the afternoon from having been standing/sitting upright for hours at a time — the TENS provided relief, allowing me to go about my day without those activities weighing heavily on me.
It did not, and does not, cure overall pain. The feeling is hard to explain; it zaps the muscle underneath your skin, and you feel that “zap” in the areas where the electrodes are attached — and the “zap” feeling seems to replace the “pain” feeling (rather than removing it altogether). The device I was given has several different modes which provide different patterns of zaps, rolling and building in different ways.
When your back pain is really bad and you get the electrode placed really well on a tender point — oh, it feels so good. It’s a similar sort of relief you get with a really, really good massage. It’s not just taking away pain; it’s almost pleasurable in doing so.
When the back pain is moderate or mild and there aren’t any particular tender points (or your skin is broken in those areas, preventing you from using the electrode on them) it’s not quite pleasurable, but it still takes the pain away, replacing it with a sensation that’s at least neutral.
When it’s working really well during those times, I forget that it’s there and running. I can just move about and not think about the pain at all. That’s a freedom I cherish when I realize it’s happening. It’s not often I can just move my body without realizing the pain I’m in and having it limit what I’m able to do.
Wearing the TENS is what allows me to be at work for eight and a half hours a day — even when much of it is spent sitting in a chair. I have a lot of things to take care of at work, and if my back pain is distracting me, I have a lot more trouble getting them done, and getting them done right. I take longer, I need more time to rest, I’m stressed and irritable and easily overwhelmed. This is something that allows me to take one complication out of my day.
Wearing my TENS is what allows me to do a lot of non-work things, too: washing the dishes at home, for instance (standing upright but doing something physical slightly in front of me requires use of my lower back muscles, which don’t hold up for long in that situation), or attending a sports game or going to a museum or zoo, or anything else where I am going to be away from home for a good portion of the day, especially standing or walking, or sitting where the seating is awkward.
Without my TENS, I would be taking more pain killers to manage my pain. With the TENS, I only need pain-killers for other areas of pain: my severe headaches, or the over-all neuralgia ache and fatigue. If I’m fortunate and those things aren’t bothering me that day, I’ll have less need for the pain-killers overall.
My TENS unit can be a stealth device. No one necessarily sees it. Sometimes I tuck the wires in to my pants or skirt so that they are hidden, and sometimes I don’t bother, letting them hang out — leading out the back of my pants/skirt to a pocket on my side.
Here is where I make a recommendation: of all the ways I’ve tried carrying my TENS, my favorite is the Cargobelt from Etsy seller Utilitywear. I have tried several ways of carrying my TENS unit: with the included clip alone, in the black canvas carrier the company gave me with the unit, in my jeans/skirt pocket, and with a couple different solutions I found on Etsy.
I ended up removing the clip from the unit; I didn’t like the way it sat high on the clip, making my outfits look weird (I wear mid-rise jeans and prefer my shirts to fall around the hip, covering a few inches of the jeans) with the shirts pulled and bunched up on one side. And it didn’t clip well to the pockets on my work pants/skirts. The black canvas carrier doesn’t really fit it well (a bit too small), is ugly, has the same shirt-bunching problem to a slightly lesser extent, and isn’t convenient — I have to pull the unit all the way out of the carrier to adjust the mode/levels, and it’s a bit of a struggle to get it in and out of the carrier.
When I’m lazy, I’ll still just stick the TENS unit in my pants/skirt/shorts pocket — particularly on the guy’s cargo shorts I wear, since there’s more than enough room in the pocket. But on my jeans and skirt, it’s a bit uncomfortable due to the size of the unit; it presses in to my hip and leg and when I’m sitting down, it’s hard to get it in and out of my pocket if I need to adjust it.
But the best option for me so far has been the Cargobelt.
I bought it in the dark denim; it is available in several different fabrics. It links through the belt loops on your pants like a belt does.
I ended up making a couple modifications after using it for a little while.
Obviously, I am no professional seamstress! But I was able to make the changes I needed. I used my x-acto knife to cut a couple small slits in the back, then went and stitched over the edges of the fabric to prevent fraying. This way I could thread the lead wires through the back of the pouch, and attach them to the TENS unit inside. This was more comfortable than just tucking the unit in to the pocket with the lead wires hanging out the front. (I was originally wearing the pouch on one side, and made the slits you see with white thread, then switched to the other side, so I made the slits you see in black thread. Nobody sees them, so it doesn’t affect the glamor ;))
The only thing I don’t like about it is that the metal hardware controlling the adjusting belt — that metal rectangle thing — is a bit taller than my belt loops are, which requires some work to get it through the loops (rather than just being able to pull it through without issue). But that is my only complaint. Otherwise, this little pouch works beautifully — it allows me to walk around with my TENS unit without being too conspicuous.
And when I’m doing something like, say, traveling into the city for a sports game, it’s nice because I can also carry my ID, credit card &/or cash, my chapstick and my phone — voila, no purse necessary! Except that I have learned — ahem — that when I do have a large purse, security guards at the ballpark or hockey arena don’t bother to pat me down (instead just looking through the purse), so as long as my wires are tucked in I can get inside without any questions about this-weird-electronic-device-that-might-be-mistaken-for-something-sinister. Sneaky.
When I first began wearing the TENS, I was careful to tuck in my wires. Since then, I’ve stopped bothering most of the time. I just let them hang out. Part because it’s easier on me that way — less hassle — but also part out of a desire to have a visual marker to the world that I am Different. That there’s a reason I’m walking slowly or sitting down — or when I’m well enough to pass as one-hundred-percent Normal, to try to buck that image.
Identity is a complex thing for a person with an invisible disability. There is always that voice in the back of your head, reminding you that most of the world still thinks you are not sick — you are normal — nothing’s wrong with you — you’re making it up, imagining or exaggerating things, or looking for things to complain about. I have been pushing back against this voice for years, connecting with the still small voice inside that tells me what I am actually feeling, rather than always looking to fit my feelings within the boxes the outside world provides me — learning to just be what I am. To accept what I feel. And it’s only when I connect with what’s actually going on inside my body that I can address the problems effectively. When I am still in the frame of mind that says my self experience is not valid, that I need to conform to what the world tells me I should be — I address the wrong things, in the wrong ways, and end up making my situation worse in a variety of ways.
I’ve had years now to gain experience in fighting that back-of-the-head voice, and reaching for the still-small-voice inside me. I am fairly stable in my identity, fairly confident in who and what I am, I trust my own feelings now. But that voice is still there in the back of my head — it always will be, as long as people still remark about people like me as though we are malingerers.
I leave my wires hanging as a way to combat that voice. As a way to say to the rest of the world: I am Disabled. I am Different. You need to face up to that. You need to deal with that.
Most of the response to my TENS was while I was working. I needed to tuck in my wires because of the bending down I had to do for filing — the wires would catch on the back of my shoes, and they would pop out, disconnecting from the electrodes or pulling the electrodes off my back altogether.
But sometimes the electrodes caught on the hem of my pants, or the wires shoed a little bit, or someone saw me messing with the unit. And they would ask about it and I would explain. And most people regarded it as: something cool, neat, and nice to know something was providing me relief. And usually, they’d leave me alone about it afterward.
(One woman did bring it up a little more often than I was comfortable with — sometimes I get tired of answering questions or making small talk about my illness. But it was only borderline, and I loved working with her otherwise, so it was easy enough to get past.)
Besides that: most people don’t bother me. And I haven’t even gotten any weird looks — I mean, I was hoping for at least one, to balance out all the glares I get when I use my accessible parking placard. Maybe in time?
Overall, even with the additional skin care routine, the addition of the TENS unit to my pain management program has made a bigger difference in my quality of life than just about any other component — only a couple of my medications might be more important. It gives me a non-drug option for managing pain and it drives me to do more physical stuff that I couldn’t do as much before. It’s one of those things that I like to have, that I’ve grown fond of, because of everything it has enabled me to do. It seems Goldfish feels similarly, because she’s even written an ode to her TENS machine!
Ode To My TENS Machine
I want to tell the whole wide world about my darling TENS,
My little matt black box and I are very special friends.
He stays close to me all day long, he never leaves my side,
I tingle when I feel those soft electrodes on my thighs.
He came straight to my rescue when my agony was heinous.
My love for him is deep; in fact it is quite transcutaneous.
This love it has no side-effects; those drugs can be so icky,
Though when I pull the patches off he leaves me rather sticky.
I knew that it was meant to be as soon as I first saw him,
He stimulates my nerves so that I produce more endorphins.
He stops me curling up with pain; he stops that horrid spasm,
Alas however, he falls short of making me [feel any better than as I have described above]
He is the answer to my prayers; the dream I have been chasing,
After just a week he needed his battery replacing.
However much my body aches I know he’ll make amends,
My love, my life, my tingly-wingly, darling little TENS.
Recommendations, again: Empi handled all the insurance claims, supply orders and so forth; they’ve been extremely helpful through the whole process, and made it much simpler and easier on me. And, again, check out utilitywear on Etsy; there are several options and they work great whether you’re wearing a TENS or just want a way to tote around a few essentials without carrying a bag. The Rehabilicare ProMax is my particular machine model; the Empi rep tried another one on me (the traditional knobby black box kind) but I maxed it out at 100% and it was still at a pretty low buzz level for me, so he handed me the ProMax instead. It’s been in my hand ever since.
Skin care: Skin prep before and adhesive remover after (both provided by Empi), Sween cream, something containing lidocaine (a numbing agent) — I’ve liked the Bactine spray and the Bikini Zone cream in particular (yes, that’s a bit of an off-label use, but it works!). I’ve tried other numbing agents, cooling sprays and itch relief sprays/creams/gels that just didn’t work well for me for this purpose.
If you’re in physical therapy and you think it might help, ask your therapist if you can try electrical stimulation. That way you get an idea on how it works for your needs without having to rent the machine first. Your therapist should have further information if it seems like something that could help you. Or make an appointment with whichever doctor you see to manage your pain.
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