Showing posts with label Mast Cell Activation Syndrome. Show all posts
Showing posts with label Mast Cell Activation Syndrome. Show all posts

Saturday, September 21, 2019

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.

Wednesday, March 14, 2018

Homemade Energy Bars Recipe

When dealing with chronic illness, I need to make every bite count. This recipe is one I made up based off of various ideas. It is nutrient dense, lends itself to being modified as needed for taste or allergy/dietary needs. It is a sort of cross between granola bars and energy bites. I have a basic recipe, but then changed it, then changed it again. Now, I rarely measure anything. Thus, this "recipe" will be given in estimates. I am normally not a fan of supplements, but rather of getting needed nutrients from food as much as possible.  However, dealing with weight loss, adding fat to everything was not helping enough, so resorting to protein powder at present in addition to the extra fat. Preparing for travel, so made these to take along for snacks.


Homemade Energy Bars Recipe

2-3 cups rolled oats
2 cups trail mix
1/2-1 cup protein powder (optional)
cinnamon
ground ginger
1 1/2 cups peanut butter
1/4 cup blackstrap molasses
1/4 cup coconut oil

Mix oats, trail mix, protein powder in a large bowl. Stir together peanut butter, molasses, coconut oil in a smaller bowl or large measuring cup. (Melt coconut oil if needed.) Pour peanut butter mixture over oats mixture. Stir until fully mixed. Pour into greased 8"x8" pan and press down firmly and evenly. Chill until firm. Cut into desired size bars. Store in fridge. (Coconut oil gets soft....)

Alternatively, these can be rolled into balls. I have done this, but it is time-consuming, and I tend to look for fastest, easiest ways to do things.

Any nut or seed butter can be used in place of peanut butter. Honey can be used in place of molasses. I am sure pure maple syrup could be as well. Any store-bought or homemade trail mix can be used--I usually use homemade trail mix. Or, in place of trail mix, any combination of nuts, seeds, dried fruit can be used.  Other optional items: sunflower seeds, ground flax seeds, chia seeds, unsweetened coconut, cinnamon, etc. I usually use honey, not molasses, but molasses actually contains more nutrients, it sounded good, so tried it and it turned out well. The molasses led me to deciding to add cinnamon and ginger as well--excellent combination! These were not measured, but liberally sprinkled/poured.

I normally do not use protein powder--this is first time other than for after orthopedic surgeries. I did not measure this--I looked at how much was left in the container, decided it looked reasonable so dumped the entire amount in. This time I used pasteurized egg white protein powder (only ingredient) for the protein powder. I usually use Tera's Whey unsweetened whey protein powder (two ingredients: whey concentrate, sunflower lecithin). I prefer unflavored as I have more options for how to use it. I need as few ingredients as possible--less chance of reactions.  I also like unsweetened as I do not do well with sugar, but also do not do well with most sweeteners. I can get away with some honey, molasses, pure maple syrup, even some sugar once in a great while if symptoms are stable. Artificial sweeteners, stevia, sugar alcohols are all off limits--this is just me and how my body reacts at this time. There are other protein powders out there, I am sure others that would work well for those with sensitivities as well, but these are the only ones I have used thus far that have worked for me.


All mixed together.

Mixture pressed into pain, chilled, ready to be cut into squares.

One granola bar.


 Homemade Trail Mix

1 cup almonds
1 cup walnuts
1 cup pecans
1 cup Brazil nuts
1 cup hazel nuts
1 cup cashews
1 cup peanuts
1 cup raisins
1 cup dried apricots (cut into smaller pieces)
1 cup dried cranberries

Mix together. I usually measure all into a large ziploc and shake it, or use a large mixing bowl. I cut up the apricots with scissors. Any combination of nuts, dried fruit, seeds will work.

I like seeds in trail mix, but they tend to sift to the bottom. Thus, I rarely add them to trail mix.

I also like chocolate chips in trail mix, but need to be careful with sugar, plus chocolate means melting issues if traveling with trail mix.

These both make great, easy to make, easy to modify snacks.

Copyright © 2018 by Chronic Wholeness. All rights reserved.

Tuesday, March 6, 2018

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.

An Introduction to Chronic Wholeness

I will be writing about chronic illness in the context of wholeness or wellness.  I chose this to be my theme or purpose:  pursuing wholenes...