Archive for the ‘Pain Management Techniques’ Category

In 2012, I began to come very close to passing out several times a day. I had no idea why. My pulse and blood pressure were all over the place. I also had horrible chest pain, but just ignored the symptoms.

Then this happened during physical therapy for my ongoing sacroiliac joint issues. EMS was called. They hospitalized me for 5 days. A neurologist diagnosed me with “dysautonomia,” and explained that my autonomic nervous system wasn’t functioning properly for some unknown reason. During discharge, he recommended that I “go buy an abdominal binder,” a device would provide constant pressure on my abdomen to help keep my blood circulating and prevent sudden drops in BP, tachycardia, weakness and fainting – all hallmarks of dysautonomia.

Abdominal BINDER? What?

I asked Google, and was horrified at what I was shown: latex tubes with multiple rows of bra-like hooks (like those popularized by Kardashian wanna-be crowd), and contraptions made from beige, scratchy material with a confusing array of laces and buckles – like a straight jacket without the “hug yourself” arms. Noooo thanks. I’ll take my beta blockers and do more Pilates to “zip up” my abs.

Well, that approach lasted about a year. Every time I left my house, it was guaranteed that I would end up sitting on the floor of retail establishments and/or propping myself on random cars in parking lots. The unpredictable BP changes, combined with excruciating back and leg pain (exacerbated by repeated sit-down-on-the-ground-stand-up-again episodes) were draining and embarrassing. I dreaded leaving the house, and refused to go anywhere alone. I stopped teaching jewelry classes, and would only spend an hour or so in my jewelry studio a few times weekly.

Then, serendipity!

Two years ago (3 years after my dysautonomia diagnosis), I was comparing symptoms with an acquaintance – she also had an SI joint anomaly similar to mine (excruciating point-specific pain, joint laxity, hip/leg pain). Her physical therapist had recommended that she try a corset to help stabilize her low back and hips.

Wait…What? A CORSET??

My first thoughts were probably the same as yours:  “Corsets are for…strippers, porn stars, hookers, BDSM fetishists, Playboy bunnies and…and…and people with body dysmorphia that want to squeeze their ribs into unnatural shapes…and…and…NO FRIGGIN’ WAY would I wear one of THOSE!!!! Eewww.”

Then – I had a flashback to what that neurologist had told me in 2012 – “…abdominal binder.” Hmmm…..

So, I did some research. And, I learned that corsets aren’t just for Renaissance faires, fantasy wear and adult sexual play.  Corsets have a long, rich history, full of controversy, with over 3 centuries of documented drama and discourse about the good and bad. Used for centuries to support the fatigued torsos and backs of women (and men!), address a variety of health issues, and of course, fashion challenges. Corsets have actually played quite an important role in both fashion and medical history. (If you’d like more details, Google can help you delve into the blathering of doctors, designers and devotees on both sides of the debate…from the 1700’s until today. Enjoy!)

So, I bought an honest-to-goodness corset, underbust style (just the hips and torso – no boob support involved), with steel bones and lacing. Not a latex tube. Not a “waist-shaper” from Amazon with multiple rows of hooks-and-eyes. And, certainly NOT one promoted or sold by any reality TV star.

After about 2 weeks of “seasoning” (breaking it in…getting it used to my body, and my body to it) –  VOILA!

  • It helped maintain my blood pressure!
  • It stabilized my loosey-goosey and wickedly painful sacroiliac joints. My body wasn’t feeling as weak as it had before after a couple of hours of activity,  as if it was held together by overstretched rubber bands. [I have stretchy connective tissues from Ehlers Danlos Syndrome, which, contrary to other articles addressing EDS and corsetry, is NOT an autoimmune disorder, but a genetic one].
  • I was able to work at my jewelry bench longer than an hour.
  • I could drive my car more than 10 minutes without back, neck and shoulder pain.
  • I was sitting up straighter, walking much more gracefully, and I had a waist again!
  • My boobs and stomach no longer appeared as one amorphous blob, and I didn’t have to wear an XL shirt over my size M body just to hide my shape. With the corset, clothes looked great on me again! I could wear things I had put in the “I’ll never fit into THOSE” pile.
  • Looking better improved my self esteem (in spite of my ongoing, complicated and not-properly-diagnosed/treated health issues). These improvements in my life were worth far more than the $60 I had paid for that first corset.

After purchasing three more off-the-rack corsets, and so much more research, I learned that a “bespoke” corset – one made to fit MY body and address MY specific medical issues, would probably be more beneficial.  With the guidance of an experienced and educated member of the corset community, I found a designer to help me.

Carlos, of Innova Corsetry, designed and constructed an exquisite corset for me, with architectural precision and attention to detail. Most important was the inclusion of “cupped ribs” (no compression at all on the ribs, the waist being the focus of any reshaping desired, or in my case, compression to control my BP). He shaped the hips to fit quite snugly to stabilize my troublesome sacroiliac areas and gluteus muscles that in turn, support the hips. Genius!!

With this beauty hidden stealthily under my clothes, I can move about with good posture, drive without slouching, and spend several hours at my jewelry studio. It actually extend my tolerance to “do stuff” to 4 – 6 hours (sometimes much more!), far longer than the brief periods I could endure before corseting. I now go on errands without fear that I will randomly pass out in public places as before. I can make plans and participate in life again. And, I feel much more confident because I know I look better that I did before I began my corset journey.

Ok. Stop right three. I know what you are thinking.

YES, I CAN breathe freely and completely in my corset. As mentioned above, the cupped ribs are designed to support, not compress.

NO, it doesn’t hurt.  I drive, do errands and housework, work easily in my jewelry studio and do my photography with ease. I forget it’s there.

And, NO, my muscles are not weakening because I wear a corset – the opposite is true!  All the years of physical therapy, gait training, Pilates and core stabilization finally make sense. I am able to maintain the correct position of my pelvis and low back with ease. My corset provides “feedback” throughout the day, reminding me to use all of my core muscles for stabilization. Now, my torso musculature is much stronger and more supportive when I am not wearing the corset. Without it, I am able to continue moving about for another hour or so without the familiar stabs and spasms I had endured for almost 20 years.

A corset should never be painful. If it is, it isn’t on correctly, or it is the wrong type of corset for your body. NOTE: All corsets are NOT the the same. Different styles influence the body in different ways. It is not a “one size fits all” solution. Many less expensive corsets are incorrectly shaped and are painful to wear. Before you consider corseting, do lots of research and talk to people that corset regularly to learn how to find the right corset. There are plenty of resources on the interwebs and in social media that are very helpful! There are many, like me, that started corseting for medical reasons are happy to share their knowledge.

Oh – my doctors – how do THEY feel about my decision to corset? Well, most don’t have the knowledge of what a corset really is – some seem pleased and intrigued I have found a way to address some of my medical issues that has been largely ignored by medical research. Those that are openly critical of the practice seem get their information from the sensationalized (and not very accurate) comments of Dr. Oz and his ilk. Luckily, I have physical therapists that applaud my investigation and use of the corsets, and understand their benefits.

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I just spent three hours researching the advances in pain neuromodulation technology, suitable for someone with my condition. I had a conversation with my anesthesiologist that had left me “hopeful.” (I will live to regret feeling this way. Just wait…) Based on what I found, perhaps they’ll have something suitable for my condition 10 to 20 years after BItcoin becomes the World currency – not in 6 months, and not in a couple of years like he had mentioned.

So much for “hope.” How dare I think positively about the possibility that there might be a treatment out there that would be helpful for me.

As I have always said, “there’s no room in medicine for hope or unicorns.”

I have reached the end of my rope.

These sleepless nights are complete hell for both me and my husband.

My pain doctor tells me that there are no options left for me – in the United States anyway, until the U.S. decides to catch up with the needs of patients like me, as have other countries in other parts of the world the recognize that patients with chronic pain need pain relief – other than drugs – so we can sleep.

I’ve tried every intervention, Eastern, Western, New Age, etc., all to no avail. I’ve had six surgeries just for this pain issue. And I am STILL left with miserable pain that keeps me up at night, that now, due to the fact I can only lay on one side, my L rotator cuff that has already been repaired twice is re-torn.

I am left without options. Basically, I am a useless pain generator that takes up space in my tiny condo and hurt myself somehow whenever I try to do more than walk across the room (i.e., laundry, vacuuming, emptying dishwasher, etc.).

I’m not even going to mention the other chronic health issues I have to deal with. Compared to this pain issue, those are soooo secondary.

Please don’t tell me to try this exercise or that therapy or meditate or pray or try yoga etc. I’ve done all that. Remember, it’s been almost 17 years now that I’ve been dealing with this. And it’s been almost 17 years that I’ve been misdiagnosed by doctors. I have FIVE pages of “interventions I have tried…and yes, I have seen a Shaman and had my Chakras cleaned. And had prolotherapy…I just know someone wanted to throw that one out there.

Most people are “new” to the chronic pain community…they have suffered only a few months or a few years. I’ve lost who I was  – my life, my career, my motivation, my friends – all because of being a person in chronic pain. Try 17 years of pain….multiple surgeries….countless treatments…and still being in pain.

And alone. No one wants to be friends with a person that has chronic health issues.

No one wants to help a person in chronic health issues,

[I’m not bringing up all the misdiagnoses that occurred since I was 12 years old…That’s a whole other set of stories for another time.]

My point writing this blog entry?

To illustrate that all the good intentions, the finding of promising research, and having a great PCP, really doesn’t make a difference when there is absolutely nothing out there, short of suicide, that’s going to take away this pain.

Those of you with chronic illnesses know that finding a support system is not easy. I don’t have a support system. Literally – well, other than my husband, that can take me to an OCCASIONAL pain management appointment. Since he is not allowed to take days off from his job without repercussions, he can only do this on work holidays. This means that the treatments that I’m able to receive are few and far between, and not in line with the recommendations of the doctor.

Nope, and there’s not a single soul on the face of the planet, that has the time, inclination, ability, desire or compassion to help me get to these appointments that I desperately need to go to to get the help I need.

I know. I had the pleasure of being humiliated when I’ve asked and watched them struggle to come up with excuses as to why they “can’t.”

Perhaps is just because I live in Massachusetts, and that’s the way people are here – too busy and too self-involved to help anyone else that’s in need.

My suggested solution?

How about a service, something like “ZipCar,” in which  you can “rent” a “responsible person” to accompany you to these appointments and drive you safely home after your procedure????

Hmmm… I wonder if TaskRabbit offers a similar service…I know that works on a bidding system. …

[Yes, I know there are medical transport services available now, but they charge exorbitantly high prices (minimum $250 PLUS mileage!!!!), and that is not exactly budget-friendly someone on disability.]

Ideally, some altruistic person or agency could open up a respite home for those in chronic pain like me. We could all be put together so we are no longer a burden, a hassle, an annoyance and/or exasperation to what family we have left. And, we would not annoy them when we can’t sleep through the pain that we are all in all night. We could all sit u together and try to distract each other from the pain we are in. (Like me, tonight.)

Oh, wait. That won’t work, either. This is Massachusetts. No such place like that could ever exist here. Never mind!! What was I thinking?

(NOTE: no compensation was received from any of the companies mentioned in this post. I am just sharing what helps ME with others.)

I’ve been having a particularly difficult time with my SI (sacroiliac) joint dysfunction pain.

I spend many sleepless nights laying on tennis balls (yes, you read that right) and a creation I made of dog toys – these separate the joint and ease the pinching of the nerves, or whatever is going on when the SI is out of whack. The pressure also temporarily turns off the nerve signals to the brain – or that’s what I ve been told by the therapists that introduced me to this technique.

But, telling you this is not my reason for the post.

This link is!!!  The guy, Gary Crowley, of www.do-it-yourself-joint-pain-relief.com is a GENIUS.

The info he has on his website is more valuable than paying for one massage (but not a replacement for a massage therapist, of course, IF you can afford it), far better than trekking to PT 3 times a week (his videos had me accomplishing FAR more than ANY PT ever had me do in the 16 yrs I’ve had my SI pain), and best of all, all the techniques can be done at 3 a.m.! All by yourself (or a really understanding and empathetic friend)! Anywhere!

Please – if you have muscular or joint pain – check out his site!!

He describes all the anatomy in easy-to-understand detail in short videos – and for those that don’t want to watch the videos, the text and pictures are there on the pages under the videos.

He covers many pain maladies from migraines to jaw pain,  SI joint pain (YAY! – even uses a tennis ball!!),  to testicle pain and toe pain.

All you need is a computer (which you have if you are reading this)

and your hands (I use a small ball as I have hand pain issues),

and a tennis ball , or TennisBall

 

dog toy ball/soft ball (like these

WoolBalls

 

 

 

 

or heck,

source:corgibutts.blogspot.com

source:corgibutts.blogspot.com

even a rolled up pair of socks will help!!

 

 

 

I also use one of these TheraCane   — a TheraCane — to help me with some of the techniques.I just happened to have this in my closet for many years and figured that it would be a perfect adjunct for Gary’s pain relief maneuvers. And, it is!

The best of all  – Gary’s techniques – THEY WORK.

And, I get to get some sleep.

Hope this information helps even one person just a little bit!