Kinesiology Tape Tips for Chronic Pain & Joint Instability

I did not really know much about kinesiology tape until a couple of years ago. I was introduced to it as a means of managing pain and instability. Being the born skeptic that I am, I could not imagine tape would be that helpful, but was also willing to try. I could not believe how much it helped! There is no evidence supporting tape for treating pain or injuries. There is little information on why it works. The best I have been able to understand is that tape provides direct stimulus to the skin, which aids in cuing proper muscle use, and provides proprioceptive feedback. Regardless of the science, or lack thereof, tape remains in my tool box of options for managing pain.

Although tape works well for me, I did encounter drawbacks. These presented in the form of my known sensitive skin that tends to react to many adhesives. Through trial and error, we discovered that my skin tolerates RockTape brand tape better than KT tape brand. I am not trying to promote one brand over another, simply sharing what I have found in my experience. Once RockTape seemed to work well, I saw no need to keep trying other brands. Additionally, Cavilon skin barrier film (as wipes, swabs, etc.), helps protect my skin if we apply that first, allow it to dry, then apply tape over the top. The tape still adheres well, but the skin has a layer of protection between it and tape adhesive.

I soon found that kinesiology tape stays on well, even through showers, working out, and swimming. Because I am a swimmer, my favorite tape has been RockTape H2O as it stays on even better in water. Before my shoulder surgery, my shoulder was taped most of the time. I have gone as long as a week before removing it. However, my skin was not happy. The allergist who manages MCAS (mast cell activation syndrome), suggested a maximum of three days of tape, then give my skin a full day to breathe before being taped again. He also prescribed a steroid ointment to help calm tape induced rashes. This has helped keep reactions minimal and manageable. 

I learned that Cavilon makes a lotion as well, that the lotion costs less, but also that it is easier to have issues with tape sticking as well with the lotion than the film. I also learned that tape works very well for a total sunblock over surgery scars to protect them from sun exposure. I used to use waterproof bandages, but tape is easier, and with healed incision scars, it does not matter if waterproof or not.

More recently, we have experimented some with leukotape. This tape lacks the stretch that kinesiology tape has. It is also a harsher tape, and needs to be placed over the top of another tape, called cover roll. It did not take me long to realize that this taping technique worked well because of how firm the support was, as well as my skin tolerating cover roll better than any of the other tapes!

My latest discovery is something called Thrive Tape. I was introduced to this first in a Facebook support group for EDS (Ehlers-Danlos Syndrome). I then received an email about it from the Ehlers Danlos Society. My curiosity was piqued, but I was skeptical as usual. I knew tape worked, but why was this tape so special? They advertised using far infrared technology in kinesiology tape. I have asked about this, still do not fully understand. The best explanation thus far, is there is a chemical reaction with skin. I was also told it was designed with fragile EDS skin and reactive MCAS skin in mind! I had the opportunity to actually try Thrive tape for myself when I attended an EDS conference. Understatement--I am really impressed! Even knowing that kinesiology tape helped, I was not prepared for how much this tape helps. We applied it without any barrier film or lotion. My skin never got itchy under the tape as it does with other tapes. When I finally removed the tape after 5 days, yes pushing limits to give a test, my skin was fine! It was not red and irritated! That five days included showers, working out, a couple of swimming days. It stuck as well, or better, than other tapes, was easier on my skin, and was more effective. I definitely noticed when I removed the tape. Oh my. Sometimes there is gradual improvement with tape, but more noticeable and rapid return of pain after removal of tape. Additionally, this tape has instructions for taping for different issues, but also states that if unable to tape properly, simply place tape over painful areas. I have tried taping myself some, and am not as capable of taping correctly, but the tape is still helping! I have been following a three days on, one day break pattern with Thrive tape since the conference, as I received a free roll of tape. I use. I am officially sold on its worth. The next challenge, is balancing its cost, as it does cost more. 

For those interested in taping, I found it helpful for physical therapist or chiropractor to tape me. We started with only very small area, and only left a day or two at most. As we learned what my skin would, and would not, tolerate, we tried other areas. There are videos and instructions on taping. However, my providers used variations specific to me. Some areas of my body I can tape myself--knees, for example. Others, I cannot, or not very well. My shoulder is impossible to do myself. Taping my own back is possible, but challenging, as it is difficult to get tape truly in most effective placement. 

Again, these are only my experiences. I am not receiving anything from any of the companies mentioned. I am not trying to promote one brand over another, simply sharing what works for me and my skin and body. The point of sharing that different brands affect me differently, is that if one brand does not work, it is worth trying another. I have heard others who do better with KT tape than with RockTape. It is individual. I am sharing what I have found helpful over the past couple of years. 

More Links
RockTape
RockTape H2O
KT Tape
Cavilon swabs
Cavilon wipes
Cavilon lotion
Leukotape
Cover roll
Thrive Tape
Copyright © 2019 by Chronic Wholeness. All rights reserved.

Ehlers-Danlos Syndrome Diagnosis Round 2

I wrote previously about my diagnosis with Ehlers-Danlos syndrome. Well, I appear to be on round two of diagnosis, this time pursuing genetic testing. Things are still in process, thus results unknown at this time. However, sometimes I find recording or reading about the process can be helpful as medical journeys tend to be more about living through the process than the end result.

I was clinically diagnosed with classical EDS in 2017. At the time, I was informed genetic testing was approximately 50% accurate, not worth pursuing due to expense and chance of being negative. When the diagnostic criteria changed shortly thereafter, recommending classical EDS (cEDS) be tested, as genetic testing was then considered 80-90% accurate, I asked about genetic testing. Because my clinical diagnosis was being taken seriously, I was getting needed treatment, precautions were being taken with procedures, genetic testing was again determined not worth the expense.

I am a reader and learner. I am aware that a couple more variants in classical EDS have been found and reported in the literature in the past year. This further confirmed in my mind that genetic testing was not guaranteed to be insightful.

I had some serious complications with some surgeries several months ago. It was all thought to be due to EDS, diagnosis not questioned. However, it got me reading deeper into things. I'd had emergency GI surgery that found perforated bowel, addressed that, resulting in temporary colostomy. I read about EDS and bowel perforations, learning all types of EDS can have bowel perforation from colonoscopy, surgeries, etc. The main type of EDS with reported spontaneous bowel perforations was vascular. I was never quite clear on exact cause of perforation in my case, but since I was post up another GI surgery when it happened, figured it was combination of weak tissues and recent GI surgery. I never questioned if classical EDS diagnosis was correct. However, a recent test showed very unexpected findings. This test was a preliminary check to determine if rectal stump had healed well and was ready to reconnect to reverse the colostomy. It was a barium enema of the rectal stump. I was watching on screen, because I always do this if screen is visible. After the procedure, the radiologist went back and showed me the images, explaining things as he did so. He showed me the sealed end of the rectum where it had been surgically closed after removal of sigmoid colon several months prior. He pointed out that no dye was getting through. This was good as this was most likely place for leaks, but showed I had healed well from surgery. This was good news, was anticipated. However, he went on to show me where swirls of dye were leaking out along the side of the rectum. This was not at all normal, was very unexpected, he was not sure other than probably connective tissue disorder related. Oh my. That left me sort of in shock as I knew if leaking, there was no chance of reconnecting things to reverse colostomy until it had healed. But, the new leak raised questions if I'd ever be able to be reversed if my body had either never healed, or apparently had a new leak, since this was a different area then would be expected. Additionally, since it appeared to be a new leak, raised questions regarding vascular EDS, because of spontaneous perforation--new leak unprovoked. From reading, I knew that in vascular EDS reversal surgery to reconnect GI tract to rectum is contraindicated.

Not unexpected, my surgeon said reversal this summer is impossible, and he recommended against ever reversing. He said what he saw in surgery months prior, what happened then, this test result, made him very concerned. He said I am very high risk of leaks, perforation, sepsis, and likely death, if we try. That being said, he recommended second surgical opinion, said we can try repeating the test in a few months and see what it shows.

Long story short, I was worked in for geneticist appointment on urgent basis after explaining the situation. Clinically, I definitely have a connective tissue disorder, have characteristics of classical, hypermobile, vascular, but was told there is overlap between them. The exam and history do not build a strong case for vascular, but the bowel perforations are concerning, worth genetic testing. Classical EDS is typically mutations in COL5A1, or COL5A2. Vascular EDS (vEDS) is typically caused by mutations in COL3A1. My understanding from the geneticist is if testing is normal, we keep current clinical classical EDS diagnosis. Best case scenario, testing confirms classical, worst case scenario, testing shows vascular. The geneticist was reassuring, told me not to worry. She said there is a COL1A1 mutation that is associated with vascular issues in classical EDS. She also said some vascular is milder than others, and with how far I got (30s-40s) before serious issues, she suspects if vascular, it is mild. We will discuss things further once we have results. I will either edit to update this post once I have results, or will write a second part.

Edited to update 9/19/19. RESULTS
The results from the genetic testing are back. I am negative for vascular EDS! This is a huge relief! I am also negative for everything else tested. I was told testing for vascular EDS is 98-99% accurate, thus it is pretty confidently ruled out. However, testing for classical EDS is approximately 90% accurate, thus 10% of patients with classical EDS will test negative. A negative test does not rule out a clinical diagnosis. Hypermobile EDS has no genes identified. I was told to keep my clinical diagnosis. If asked for details, I have clinical diagnosis, with negative molecular testing.

Resources
2017 Classical EDS
2017 Hypermobile EDS
2017 Vascular EDS
Vascular characteristics in classical EDS
New discoveries in variants in classical EDS
New information in vascular EDS
COL3A1 in Vascular EDS
COL5 mutations in Classical EDS
Avoid ostomy reversal surgery in vEDS
COL1A1
COL3A1
COL5A1
COL5A2
Bowel perforation in EDS
Bowel perforation in vEDS

Copyright © 2019 by Chronic Wholeness. All rights reserved.

Tips for Swimming with an Ostomy

I normally try to write posts in an order of sorts, but right now, am choosing to right on what it is easiest. For now, this is practical tips from real life, rather than in-depth information on conditions.

I wrote about unplanned, emergency surgery, but no details regarding what those surgeries actually were. This blog is anonymous on purpose to allow me to write about topics that can be uncomfortable to talk about. However, even with anonymity, I find it hard to write about some things. The first GI surgery was repairing complete rectal prolapse thanks to tissue laxity from Ehlers-Danlos syndrome. I am planning to write more about this in the future. The second surgery was addressing bowel perforation, and cleaning things up, resulted in a temporary colostomy to allow my GI tract to rest and heal. It was a rough recovery in ICU as I was already malnourished from first GI surgery complications—difficulty advancing ability to eat. I also do not like surprises. I like to know what I am in for. I research things, plan ahead the best I can. I go into every procedure hoping for the best but preparing for the worst. However, no one, myself, surgeon, etc. saw this scenario coming. I work to accept what life throws at me. But, I am struggling to accept the colostomy. I did not ask for it, I do not want it, it is one more set of tasks I have to take care of. But, it saved my life. I am choosing to be grateful for it, am choosing to accept it for now, but most likely will be reversing it once recovered enough to be able.

One of my major concerns when I discovered I had a colostomy, was how it would affect swimming, pool therapy. I asked the ostomy nurse and my surgeon about this while still in the ICU, even though I knew I was nowhere near being able to consider getting into a pool. I couldn’t walk very far and was slow, was not allowed out of bed without aid because of IVs and other lines. But, swimming was so important, that it was a burning question. Both assured me swimming is very doable and surgeon told me stories of various athletes with ostomies.

Being new to the colostomy, afraid of leaks or issues, I was really nervous with first attempt once surgeon cleared me for pool about a month post op. Because I was still weak, deconditioned from lengthy hospital stay, malnutrition after surgeries, first pool trip was short and sweet. I taped the wafer down with kinesiology tape as that was what I had on hand, knew from taping joints that kinesiology tape stays on in the pool. I also wore a mild compression tank top to help hold appliance securely in place, then regular swimsuit over top, except so swollen still through abdomen, I wore an older, sort of stretched out suit. Things went well. Appliance stayed put, tape stayed on, no issues. As I slowly got stronger, pool sessions slowly got longer. I also experimented with other things. Online support groups are amazing! I asked for advice from others with ostomies who swam. I was given numerous ideas of things to try. Ostomy nurse suggested contacting companies, asking about free samples to try before ordering something that might end up not working. I did so. I tried barrier extenders and learned that when exposed to water, these swell, get gummy, sticky, messy, and allow water to reach wafer. They also pull up the wafer when removing the gooey strips. I used Hy Tape, which sounded amazing. It is waterproof, designed for sensitive skin, is latex-free, etc. That was my most disappointing experiment as it was the one I most expected to help. The tape did not stay stuck, allowed water under wafer, etc. I am only 12 weeks post op, so only been swimming several weeks, but have already figured out that the appliance stays in place fine without any additional strategies. Tape is not needed, tank top not needed, belt not needed, special swim suit not needed. I do my normal appliance routine, wear my regular one piece swimsuit that I have used for years (keep replacing as they wear out with the same thing). If I am nearing change day for the appliance, then I will sometimes tape it down with kinesiology tape and/or wear the simple little belt that clips onto the ostomy bag. I am back up to 2-hour sessions at a time in the pool with a mix of lap swimming, pool walking, and physical therapy exercises in the pool. All going well. As I become aware of other possible aids, I may try them, but for now, I have a system that works for me. I am so grateful to be back to swimming, even with an ostomy. When I was assured in ICU that swimming was possible, I envisioned it being a huge ordeal, taking months to be able to get to that point. I was pleasantly surprised to learn that no, or very little, additional steps need to be taken to be able to be in the pool with an ostomy. I was also grateful to discover the time frame was based on recovery from surgery, incision closure, similar to other surgeries. The ostomy itself had no bearing. My body thrives in water, so being able to be back in the pool has aided recovery and rehab from surgeries. This is one more hurdle behind me on the road to recovery.  

Copyright © 2019 by Chronic Wholeness. All rights reserved.

Test Subject

I had more medical testing recently.  This is more or less normal for me...and results tend to be normal as well, even though clearly I am not normal. Current guess is this test will be normal as well. What was this test? Esophageal manometry, or motility study.  Do you know how not fun it is to have a tube placed up your nose, down your throat, into your stomach? Nose was numbed prior, nothing else was as they needed me able to swallow still.  I have an over-reactive gag reflex.  Maybe the real reason for minimum of 6 hours NPO (nothing by mouth: complete fasting--no food, nothing to drink) before this test is to prevent patients vomiting during tube placement???  Do you know how much this nutrition professional dislikes fasting?  I slept most of the time prior to having to leave for the test to avoid being awake any longer than necessary when hungry, thirsty, caffeine deprived. I had another upper GI endoscopy this afternoon and had planned to sleep until time to go, but my body woke too soon. So, was awake, hungry, tired, thirsty, etc. (So, for those seeing dietitians/nutritionists, please remember we are real people and do not like fasting or diets or changing eating patterns any more than anyone else does. Or, at least I don't.) Anyway, so far, things looked normal on this scope, which is an improvement from last scope, but still leaves unanswered questions. And, a recommendation to see another specialist. This again, is not an unusual outcome.

What tests have I had?
Laboratory
-Blood work, lots and lots of blood work
Imaging
-CT scans, with and without contrast (numerous)
-MRIs, with and without IV contrast, or arthrogram--contrast injected into a joint (numerous)
-X-rays (numerous)
-DEXA bone density testing (multiple)
Gastroenterology
-Colonscopy (multiple, I am nowhere near screening age yet....)
-EGD (multiple)
-Esophageal manometry/motility test
-Gastric emptying test
Cardiology
-EKG (so many times, no idea how many?)
-Echocardiogram (multiple)
-24-hour Holter monitor
-4-week event monitor (reacted to electrodes, had open sores, scarred, they had pity on me, ended the test a week early)
Neurology
-EMG testing (miltiple, mostly normal, one diagnosed radicluopathy--by a neurologist who had told me directly that all of my symptoms were due to anxiety, repeated the positive portions of the test multiple times because he thought I was faking it--I did not know enough about the test to have any idea how to fake it or that it could be faked. He begrudgingly diagnosed me with radicluopathy.)
-Nerve conduction studies (multiple, mostly normal)
Miscellaneous
-Salt chloride test for cystic fibrosis
-Muscly biopsy for muscle disorders
-Autonomic testing
Numerous other tests, some highly specialized.

I have also participated in research studies...more testing.

It is a relief to find out test results are normal, as that means no additional issues to have to deal with. However, it can also be a relief to have abnormal results, as that at least provides direction for additional approaches to managing things. Additionally, as odd as this may sound, it is somewhat validating when a test comes back abnormal--it confirms that my body was not making things up, or exaggerating symptoms. What I experience is real, even when tests come back normal. Tests are fallible, do not provide definitive answers. They are only one part of diagnosing issues. There is a saying, "Treat the patient, not the labs," that I find especially important with the more medically complex situations. I would extend the concept further to treat the patient and not the condition, as well. Not all patients manifest the same even with the same medical condition(s).


Copyright © 2018 by Chronic Wholeness. All rights reserved.