Jared Younger, one if the freshest minds on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome research seems to have already uncovered three distinct subsets of the illness. The first points to a distinctly viral kind which produces C reactive protein that corresponds directly with patient’s reported fatigue. The second subset’s fatigue correllate’s directly with changes to the immune system itself and may be an unidentified immune deficiency or autoimmune disease, while the third is being caused by yet uknown factors requiring more investigation.
The video below provides greater detail from Younger himself and includes charts of the three different types.
If you prefer to read, this link to Cort Johnson’s excellent breakdown of the findings will help you to better understand the overall ramifications and importance of the study. I recommend taking a gander at both to fully understand and interpret this information.
This is the kind of break ME/CFS patients have been looking for for decades, as until we understand the subsets of this illness and their exact cause, no effective therapies can be developed to treat the millions of people suffering from this illness. I will continue to share information as it becomes available on this and other ongoing studies about ME/CFS and other spoonie-related illnesses. To ensure you don’t miss anything, follow me on Facebook or Twitter feeds, as I don’t always write everything up on my blog.
It seems there’s no end to the dangers one may encounter as a zebra, and no matter how hard I work to achieve better health, joint stability and overall wellness, there are always going to be things the average healthy population takes for granted that I and other zebras will never be able to do. I don’t know if there’s a manual of do’s and don’ts for Ehlers-Danlos Syndrome out there that covers this one, but I would highly recommend avoiding sitting on the ground for any length of time.
Yesterday was a beautiful Saturday in Northern Kentucky. I spent the morning swimming and sunbathing with my husband at the community pool. We were enjoying ourselves so much, we even ate our lunch there. It was gorgeous. Around 2pm, we realized we were starting to look a bit red and headed home.
While thumbing through facebook waiting for the hot water heater to replenish itself after my husband’s shower, I came along an ad for an outdoor concert near us in the evening. A band we haven’t seen for several years was playing at a carnival. Since my sound sensitivity seems to be at a 3 year low and I can handle a couple hours on my feet now, I thought it was a good chance to test it out. We agreed it might be a good time, so we decided to go.
By the time we got there, we both resembled oompa loompas, but I was careful to drink extra ORS and keep chugging water all night. We walked around the carnival for about 45 minutes and wandered over to the bandstand when the band started playing. As you may or may not know, Northern Kentucky is un the foothills of the Appalachians, so truly flat ground is a bit of a rarity, even in yards and on festival grounds and the like. Most of the flat, standing room was already taken and I knew if I stood on a graded spot I was going to have serious issues, but there was a hill eith a bunch of foljs sitting, so we joined them, thinking it would work well for me.
I did my best not to remain in one position for too long (nor could I have) and felt fine for the first hour. On trying to rise after 90 minutes, however it became pretty clear what a mistake I’d made. NOTHING worked right from my hips down. My left leg refused to move as anything but one big chunk, my right hip threatened to give out with each step, and as I trudged to the car looking like a big red Bride of Frankenstein, my chest began to seize up like I was having a heart atrack. At first I thought it was costocondritis, but it abruptly switched to the other side of my sternum, so I don’t really know what it was unkess it happened on both sides at once. Muscle spasms? Heart burn? Who knows. It wasn’t my heart. I know what that feels like, but it was making it hard to breathe.
By the time I arrived home 15 minutes later, I could barely get myself up the half dozen stairs to the apartment. Suddenly, every time I moved, I pulled or subluxed something and my entire spine hurt so bad, I could feel each individual disc as I moved. By the time I went to bed two hours later, despite the muscle relaxers, mmj, anti-inflammatories and stinging nettle tea I took, literally every joint and muscle in my entire body was on fire. Every movement was an exercise in torture and it remained that way until 11am the next morning, 12 hours later. Even now, at 2pm, I’m still in bed just trying to spare myself any added pain or reinjury to everything I subluxed over the last 12 hours. My head feels like it’s been stuffed uncomfortably full with cotton and my light sensitivity has reared its ugly head. My whole body feels stiff, achy and uncooperative.
I guess it’s difficult to say if the music was at all a problem when I so thoroughly wrecked my body in the process of finding out 😂 It’s true what they say though. Often you have no idea of the damage you’re doing in the moment, because for the first 75 of the 90 minutes I was on the ground I had no inkling of the repercussions I was about to suffer. Sure, I had to readjust my position a lot, but I have to do that in my own recliner or the movie theater chairs or a restaurant and I don’t come out of any of those situations walking like the Bride of Frankenstein, at least not on a good day, and certainly not in recent months.
The good thing is that since I’ve mostly learned how to manage my condition, I should be back in action in no time, which is a very good thing since deterioration sets in in no time and it’s a real bitch dealing with major setbacks. I know one thing for certain; if I ever plan on attending another outdoor concert, I’m bringing a chair! 😂
In retrospect, I don’t know why this surprised me. I’ve never been comfortable sitting on a floor or the ground with or without back support and after years and years of accumulated damage, of course the ramifications are going to get worse. I suppose there’s always been some degree of payback for it, from a grumpy back or genersl soreness to a popping knee or ankle, which took me a long time to understand as small, quick subluxations that sometimes go right back into place and other times need some manipulation to get back in. They didn’t hurt when I was young, but they do now, by and large. Jams are also an issue more and more for me, especially in my ankle joints.
I do wonder if I might have been somewhat dehydrated from my burn and if this contributed to the severity of the payback I experienced, one of tge reasons I mentioned it (not to mention the comedic value…we need to laugh at ourselves sometimes), but I tend to think the accumulation of injuries and the state of my collagen played the greatest role.
When evaluated by a physician for Postural Tachycardia Syndrome (POTS), they may or may not tell you that exercise has been found to be the most effective and restorative therapy available for those with autonomic dysfunction. Studies have found that people who opt for exercise over beta blockers, however, not only benefited by a decrease in standing heart rate, but they also had improved physical function scores and therefore a better quality of life, unlike those on beta blockers (Web MD).
In people with POTS, the heart rate often elevates in part due to having a deconditioned, undersized heart. The chambers of the heart shrink, as does the overall heart muscle mass. This is often referred to as “Grinch Syndrome” and this deconditioning causes the heart to beat much less efficiently, causing the tachycardia on standing because the heart has to pump a lot more to get blood to the areas needed. The only way to increase the size of your heart, allowing it to pump more blood with each beat, is to condition it with cardio exercise (myheart.net).
Exercise has many other benefits that directly relate to POTS, as well. Exercise training has been proven to expand blood volume and plasma volume and increases low blood oxygen levels.
These in turn have been associated with improvement in symptoms, and therefore exercise training is often suggested as a therapy for POTS syndrome.
One study looked at 3 months of exercise training, 20-30 minutes 3 times per week, starting with exercises performed in a sitting position and gradually progressing to higher intensity exercises and those performed in an upright position. It was found that VO2peak increased by 8% in POTS patients, a significant increase in physical conditioning. Heart size and blood volume were also found to increase. Around half the patients improved to such a degree that they no longer fulfilled the criteria for a diagnosis of POTS syndrome. Several studies have confirmed these effects. (myheart.net)
Many of us who have suffered from undiagnosed POTS for years, also suffer from severely deconditioning of the muscles and body overall, so exercise will benefit us in every way and will likely give us a greater quality of life and more freedom overall from our symptoms, allowing us to lead more normal lives.
How to Get Started
First, talk to your vascular cardiologist about exercise and help them form a plan to get started. If you’re homebound or severely deconditioned, you and your doctor may want to begin with physical therapy or a cardiac rehab program. There are even inpatient and at home programs available that might be an option for you.
Level 1 – Reclined Gentle Movements
If you are severely deconditioned after years of undiagnosed POTS, you need to start out slowly and gently, working to rebuild lost muscle mass throughout the body. It is possible to do this at home on your own, like I have, but you need to understand the rules to avoid setbacks and other issues and you still need to talk to your doctor to be sure that the path you choose is safe for you.
Leg Pillow Squeeze – while laying down or reclined in bed, put a pillow folded between your knees and squeeze. Hold it for 10 seconds. Repeat.
Arm Pillow Squeeze – put the pillow folded between your palms and squeeze together as though you were putting your hands into a praying position. Hold it for 10 seconds. Repeat.
Alphabet Toes – while laying in bed, write your name in the air with your toes. If you can build up your strength, write the whole alphabet. Do this several times a day.
Side Leg Lifts – while laying on your side, lift your leg up sideways and then bring your leg back down, without touching your legs together. Repeat.
Front Leg Lifts – While laying on your back, life your left leg up, pointing your toe towards the ceiling. Repeat. Switch to right leg.
Gentle Stretching – any kind of stretching helps move blood around in the body and takes stress of your joints if you have been sitting or laying in the same position for a long time. Go through the entire body doing mild stretches, from feet, to legs, to back, to arms, to neck. Doing this when you wake up can be a great way to start the day, and repeating your stretches before bed can help you relax and sleep better.
Personally, I also included exercises that help to condition the core and back muscles, such as these, but it took time to build up to them. Listen to your body and let it guide you, avoiding too much soreness, which is the biggest deterrent to exercising regularly:
Another great option for getting started is a program like Clinical Somatics, gentle exercise designed specifically to help decrease pain and aid the autonomic system.
Level 2 – Recumbent Cardio Exercises
Once you’ve built up your muscles a bit (this can take several weeks), you can begin with slightly more challenging strengthening exercises, as well as some cardio. At this stage, your cardio should be something which doesn’t require regular upright exercise, but these are some great options to try:
Always begin your workout with 5-10 minutes of stretching and/or yoga to warm up your muscles and protect your joints from injury, unless you have EDS. With EDS, you should never stretch or take part in Yoga, because stretching stretches connective tissue rather than muscle. Zebra connective tissue is stretchy by default and causing it to stretch further will often cause injury to that tissue (for more information, see my article on EDS and Exercise.
Since the point of these exercises is to get your cardiovascular system to be more efficient, you will want to set a target heart rate for your workout. You should speak to your doctor about this because medications and other medical conditions can impact your target heart rate, but most patients can tolerate a workout at 75% to 80% of their maximum heart rate. Mayo Clinic has a Target Heart Rate Calculator you can use as a guide when speaking with your doctor.
You may want to purchase an exercise heart rate monitor to wear during your workouts to help you keep your heart rate within your target zone. Dysautonomia International does not endorse any specific products, but exercise heart rate monitors with chest straps are usually more accurate than pulse oximeters you place on your finger. This is especially so for dysautonomia patients who have abnormalities in peripheral blood flow (common in some forms of dysautonomia), as this is more likely to give an inaccurate reading using a finger based monitor.
Rowing – use a rowing machine, or if you are feeling well enough, a kayak. You may want to start out slow, maybe 2-5 minutes a day. At your own pace, adding a few minutes per week, try to work your way up to 45 minutes per day, 5 days a week, with 30 minutes of your routine done in your target heart rate zone. Be sure to warm up at the beginning and cool down at the end.
Recumbent Biking – recumbent exercise bikes are different than regular exercise bikes. They seat the rider in a reclined position, rather than upright. Try recumbent biking a few minutes a day, adding a few minutes each week, until you can work out 45 minutes a day, five days a week, with 30 minutes of that workout in your target heart rate zone. Be sure to warm up at the beginning and cool down at the end of each workout.
Swimming – The pressure from water helps prevent orthostatic symptoms. Dysautonomia patients who have been bedridden for years may be able to stand upright for an hour in a pool, because the pressure from the water prevents orthostatic symptoms from occurring, or lessens their impact. Dysautonomia patients can take advantage of this to get a good cardio workout, or to focus on stretching and strength training in the water. Always swim with a spotter or a buddy who can keep and eye on you, just in case you develop lightheadedness or other symptoms that would make it unsafe to be in a pool. It may be best to start your swimming exercise program at a pool with a lifeguard, or with a Physical Therapist who specializes in aquatic therapy. A good old fashioned kick board can be a great tool for dysautonomia patients. You can kick your way around the pool, which gives you a good cardio workout, and all that kicking helps strengthen your legs. Toning up your legs and core is a great way to minimize orthostatic symptoms.
Just because you’re in phase 2 doesn’t mean that you should stop conditioning your muscles. In fact, you should continue to condition your muscles at least 2-3 times a week, offering your body bigger challenges as the exercise becomes too easy by adding reps, weight or choosing more challenging exercises. At this stage, you still want to be doing most of your exercise seated or prone. Some great programs to try instead of the basic exercises above would be pilates, T-tap, or circuit training at your gym beginning with a very light and reasonable weight. Just be sure to skip the standing exercises until you’ve hit level 3.
Level 3 – Normal Workouts
Some dysautonomia patients are able to jog, run marathons or walk several miles a week. These patients should do whatever they can to continue these activities. Dysautonomia patients who are well-conditioned should exercise 45 minutes a day, at least 3 days per week. Special emphasis should be placed on leg and core strength, and cardiovascular exercises (Dysautonomia International).
Of course if you have another condition, as many POTSies do, you need to be sure that you’re choosing the right exercise for that condition, such as with EDS. You also want to stay within target heart rates. Target heart rate should be 50-69% of your maximum heart rate. When doing high intensity interval training, it shouldn’t go above 90%. The chart below will help:
Things to Watch Out For:
Be sure to monitor your heart rate when working out to ensure you’re getting a normal autonomic response (increased heart rate with increased vigor)
Stay well hydrated. Avoid working out first thing in the morning, as we are often a little dehydrated when we first wake up. Get plenty of fluids and electrolytes before, during and after your exercise routine.
If your heart rate doesn’t respond to exercise by increasing normally with rapid movement, STOP. This can be a sign of dehydration or electrolyte imbalance and you probably need to take the day off to replenish. If it happens despite great electrolyte levels, take a look at this article for possible causes (it could even be a good thing, but sometimes not) and consult with your doctor.
Consider using Oral Rehydration Salts or a similar high quality electrolyte mix that’s equivalent to IV fluids to keep your electrolyte levels at peak.
Exercise as much as possible. Most of the articles I read suggested three times per week, but five times per week is the standard for optimal health. Forty-five minutes per session is ideal. However, you want to work your way up to these goals and starting out with whatever you can handle is best. Any workout is a good workout and will allow you to build up your stamina. I started out at 10 minutes of gentle exercise, then added working with a FasciaBlaster (which has the benefit of increasing circulation, decreasing pain and freeing up the muscle to grow better) before I started exercising five times a week with more challenge.
Be aware you may need to take medication to help control your POTS during the course of reconditioning your body. Some of us POTSies are in such poor shape that doing so without medication just isn’t possible. I had to take midodrine before I could tolerate any exercise. Discuss medications with your doctor and be sure to monitor your resting blood pressure and symptoms so you know when they need to be adjusted. It’s entirely possible that you won’t need the medications once you’ve established a good work out regimen and gotten to level 3, but some of us still need it. That’s why it’s so important to be treated by a vascular cardiologist for this condition.
Beginning won’t be easy, no matter what level you’re at, but doing exercise at your level with slow progressions will make it much easier. You may even find that you enjoy exercise and will definitely enjoy the new freedoms you will benefit from as you progress. It will reduce your fatigue, the frequency of tachycardia events, your pain levels and your ability to adapt to change, along with many of the other symptoms associated with POTS.
When I began exercising just about a year ago, I was bedridden. Now I work out five times a week by riding a recumbent bicycle, doing many of the floor exercises I presented along with the addition of some upright exercises. Now I can enjoy plenty of time out doing the things I love, like walking in the park, shopping, swimming, enjoying the performing arts live, socializing and volunteering. Each week brings exciting new discoveries about how my body feels, my rising energy levels and my overall health. It’s the best thing I could have done for myself!
Exercising when you have EDS is no small matter, yet building strong muscle is an integral part of getting healthy and staying healthy. Since a primary feature of Ehlers-Danlos Syndrome is dysfunctional collagen that causes our connective tissue to stretch and tear, it’s essential that we protect them. How do you exercise and still protect your joints? How do you get started after months or even years of de-conditioning due to illness? I’ve been researching these topics to try to come up with my own exercise regimen and the information I’ve found takes a lot of the guess work out of how to treat your body to exercise and stay safe.
Why Exercise is Important
First, it’s important to understand why exercise is so critical to keeping the human body in optimal shape and researchers have come a long way on this subject in recent years, thanks to a group of Harvard scientists who discovered the existence of an “exercise hormone” dubbed Irisin in 2012. Irisin is present in all humans, but when you exercise, you produce much more Irisin.
Irisin has many functions. Irisin helps the body convert white fat to brown fat. Unlike white fat which simply gets stored in the body, brown fat is an active fat burner and energy producer, much like muscle, according to Dr. Joseph Mercola. He also adds that it’s great for heart health and may also help with endocrine dysfunction, as low Irisin levels are found regularly in women with PCOS. It also helps slow the aging process, induces greater insulin resistance, and helps to grow new neurons, improving cognitive function, according to Psychology Today. Amazingly, once you begin exercising and maintain a healthy weight, higher levels of Irisin actually protect the body from weight gain, as well. It’s also important in regulating stress and balancing our hormones over all. These are all things the spoonie population can benefit from, as we commonly suffer from fatigue, hormone imbalances, carbohydrate intolerance or diabetes, and cognitive dysfunction. Weight can often be an issue, as well.
But what’s also important is the mechanical function of growing strong, healthy muscle to shore up our loose tendons and ligaments. Building strong muscles helps to stabilize joints and keep us from subluxating and dislocating our joints, causing tears to these materials made fragile by our condition.
Additionally, exercise can have the added benefit of reducing our pain. Somatic exercise has been found to be very helpful in this goal and the more you exercise, the more benefits you’ll experience.
How to Exercise Safely
If you’ve long been bedbound or experienced serious muscle de-conditioning, the best thing you can do is start slow. Consider beginning with clinical somatics, also known as Hannah somatics. This program is great if you’re still struggling with pain and autonomic issues that have made exercise seem impossible. Clinical Somatics provide you with safe exercises designed to decrease pain and regulate the autonomic system; making it great for zebras and a perfect way to get started with exercising.
Another great way to get started is by performing your own fascia therapy. Fascia is another form of connective tissue that gets ignored all too often, but is often as dysfunctional in EDS as any other connective tissue. Fascia is an interconnected web that runs throughout your body, wrapping muscles, organs and bone. When something is injured or unstable, fascia tightens, attempting to help. The unintended consequence is that sometimes it gets so tight that it can literally choke off the blood supply and nerve flow to whatever part of the body its effecting. This is where fascia therapy like fasciablasting is integral to getting you moving again and it has as many powerful benefits as exercise itself. See more information on fascia therapy here.
One of the best resources I found for exercise for all levels in EDS comes from a presentation given by a physical therapist for the Ehlers-Danlos Society called “Intelligent Exercise – How You Can Take Control with EDS.” It not only gives a lot of practical advice on what to avoid along with safe exercises to help you get started, it also explains why we need to take great care while doing exercise and why it’s important to still do it.
It’s a long presentation, but well worth the watch, especially if you’re just starting out and need extra protection to safely build up long unused muscle throughout. It provides much the same advice as other presentations and articles I’ve seen on how to exercise safely with EDS and gives you exercise examples that work gently and subtly to get you started. This is where I myself have started.
No matter where you’re at in your fitness, follow these basic rules to help protect yourself from injury:
Do not stretch before exercising or do exercise that focuses on stretching, such as yoga. Stretching actually loosens the tendons and ligaments, not the muscle! For someone with EDS, it’s more likely to cause a tear or dislocation.
Avoid high impact exercise such as jogging and things that require jumping, such as jumping jacks. Running and jumping put an incredible amount of force on your joints and cause subluxations, dislocations and jams. Our joints feel the force of five times our body weight when doing these activities and are hard on even normal, healthy joints.
Avoid open circuit exercise, or excise with large movements that don’t keep you grounded. Opt for closed circuit exercise, where you have at least two points of contact with the ground or equipment at all times, instead.
Protect joints by never overextending them during exercise (comparable to what normal, healthy range of motion indicates) during exercise
Start your exercise regimen at a comfortable level, avoiding too many repetitions or adding weights too soon. Soreness will only deter you from exercising the next day and too much weight can endanger your joints.
Protect your neck while exercising. Avoid putting your hands behind your head and always keep your head in a neutral position.
Do exercise your neck. Head and neck problems are prevalent in EDS and strengthening the muscles that support it is a great idea. The video above will show you how to do so safely and easily.
Stay hydrated. This us not only important for detox, it’s a must for people with POTS and NMH.
Workout at least 5 times a week and only take off one day in between. We begin to lose muscle as quickly as we’ve built it, stay in a routine to stay on track and provide what your body needs to keep succeeding.
Fuel your body with healthy food and ample protein to help build strong muscle and consider a supplement such as d-ribose to help give you added energy and fuel to develop string muscle.
Add to your challenge by opting for more repetitions and variety of exercise before stepping up weight. Weightlifting can only be done safely once you’ve built enough muscle to do so. Work your way up using only your own momentum and body weight. Again, the video above provides examples of how to do this and how to use walls and doorways to build resistance safely.
Once you’ve conditioned your body to move onto more challenging exercise, these are some great, low-impact ways of upping your game:
Work with a trainer or physical therapist who knows EDS and can help you design a workout regimen specifically for your needs.
Take a water aerobics class or make your own, a very low impact, but good resistance exercise that can be adapted by the user. I do my own every summer at my community pool. It’s good cardio in addition to strengthening.
Start T-tap, designed to be low-impact and deceptively simple, this workout program for all levels of fitness will give you a full body workout while protecting your joints and allowing you to go at your own pace. Their website even provides several exercises you can try before you buy the DVD’s, so you’ll know if you can handle it.
Finding solutions for safe cardio is somewhat more challenging. Running is out if the question and personally, I worry about the wear and tear on joints of elliptical machines. Instead, opt for a recumbent bike, which will protect your back while cycling. Swimming is also another great option for low-impact cardio. Unfortunately, these are the only recommendations I’ve seen. Playing sports should generally be avoided, due to the need in most to run, jump and make forceful contact, but of course if you can modify something to make it safe and you really enjoy doing it, then go for it. The only limit is your imagination and the cooperation of those you do it with. Perhaps you love basketball. You can still walk, dribble and take shots, but running, jumping and jostling between players should definitely be avoided.
Be sure that when getting cardio exercise, you incorporate high intensity interval training, or periods where you go really fast with periods of slower, easier exercise. This has been shown in studies to be the most optimal form of exercise for cardio health and can even prevent common diseases associated with aging and extend your life. The older you get, the more important interval training becomes. It also helps you burn calories more efficiently and helps your body handle rapid change better by helping to regulate the autonomic system.
There’s no excuse to not exercise, no matter your level of pain and deterioration. Safe exercise can only improve these things and there are a variety of exercises available for every level of ability. If you have concerns, consult with your specialists about what’s safest for you and your specific conditions, how to get started and/or request physical therapy to help get you started. I myself had to do a several months of therapy with the fasciablaster before I felt ready to take on more, and for the beginner, if you are following all the instructions, it can be exercise enough while having the benefit of getting the fascia back into good working order, something that makes exercise a lot easier to handle!
Exercise is essential to keeping any body healthy, but for zebras, it’s especially important in shoring up our bendy joints with added muscle, helping to regulate our autonomic system, reducing our pain and stress and helping us to create more energy.
There’s an understanding in our society, both spoken and unspoken that places the worth of an individual on what they can accomplish. When your health deteriorates to the point that you can no longer take care of yourself, let alone hold a job or take care of your kids and your house, you may find that you’ve internalized that belief to your very core. You quickly begin to wonder what value you have left if you can’t continue to lead the productive life you’ve always had and this can lead to toxic shame.
In many ways, this is doubled for spoonies who spend years going to doctors who do not believe them, misdiagnose them, and spend years searching for answers about their mysterious symptoms and conditions. It can take an average of ten years to get a proper diagnosis. Some patients are outright accused of faking, are shipped off to psychiatrists in the false belief that their problems are psychological and lose the faith of friends and family who do not believe that their illness, or the extent of their illness, is real.
All of these things were true for me for over 15 years and I was filled with guilt and anger with myself over circumstances I couldn’t control. I felt like a complete failure and believed that everyone around me thought I was a failure and a lazy good-for-nothing fake. I became intensely angry every time I had to ask for help, or felt I wasn’t being understood, or asked to do too much. I became enraged every time I felt embarrassed by my cognitive decline and memory loss, the fact that I couldn’t write anymore and that my peers were being unforgiving and callous about it. Eventually, I became intensely angry about everything.
I became so shame-bound about my illness that I began pursuing a diagnosis not to get help, but to prove to everyone just how sick I really was.
I knew logically that it wasn’t my fault, but I couldn’t escape the feeling that I was doing something wrong and that I should be terribly ashamed of my circumstances: Because anger was a much easier emotion for me to deal with, any situation that invoked shame, I quickly replaced that shame with anger. I also utilized my anger as a way to push people away. That way I didn’t have to deal with them or my feelings of shame.
I’ve written about my struggles with these emotions a few times and my attempts to repair the problem, but I was missing a key element. I didn’t understand how this shame seemed to wipe out all the headway I made in my early adult years to heal from an early life of abuse and neglect, and this understanding was key.
Then I came across a wonderful book by John Bradshaw called Healing the Shame that Binds You. As I read the book, I began to understand that the shame I was suffering about my disability was the same kind of toxic shame I inherited from my abuse and neglect. As Bradshaw explains, shame is usually a healthy thing, but when shame becomes internalized and we begin to define ourselves by our shame, it becomes toxic.
“To be shame-bound means that whenever you feel any feeling, need or drive, you immediately feel ashamed. The dynamic core of your human life is grounded in your feelings, needs and drives. When these are bound by shame, you are shamed to the core.” John Bradshaw
In a person who is disabled in a society that shuns and sneers at the disabled and those who are less than fully productive, it’s easy to internalize this shame and let it define us, even if we’ve never had a problem with toxic shame in the first place, which is pretty doggone hard to escape in present day America with familial abuse, childhood and internet bullying, and the pervasive number of unhealthy people around to help pass around heaping helpings of shame at every turn.
Toxic shame effects every part of your life, from how you treat yourself and others, to how well you can cope with the outside world. It bullies us into making bad decisions, hurting ourselves and participating in unhealthy cycles. Toxic shame can create narcissistic or multiple personality disorders, bipolar disorder, obsessive compulsive disorder, addiction issues and more. I’m with Bradshaw when he says “Hell, in my opinion, is never finding your true self and never living your own life or knowing who you are.” Without resolving issues of toxic shame, it’s impossible to achieve fully knowing one’s self, or finding the contentment or satisfaction you see in others.
Healing the Shame that Binds You isn’t a new book and toxic shame is probably a fairly well known concept for people familiar with twelve step work, but I feel it’s something that could benefit a much wider audience and I recommend reading the book if any of what I’ve said rings true for you. Toxic shame can exacerbate our already fragile health and further complicate issues with dysautonomia, as it often causes anxiety. We already have enough challenges in our lives without allowing toxic shame to complicate things further.
Healing the Shame that Binds You will not only help you understand the nature of healthy and toxic shame, but it will also help you on your way to doing something about it offering tried and true methods of healing the shame that binds you. It isn’t always easy work, but once you feel the uncoiling of those complex emotions and a new level of calm begin to build inside you from this important work, you will understand it’s true healing powers. You may even find improvements in your overall health and a new will to fight.
Right now, Healing the Shame that Binds You is available in audiobook format for free on Hoopla with your library membership. You’ll find hoopla in your app store on Android or iPhone.
f.lux and Twilight are apps that allow you to adjust the brightness of your computer or cellphone screens, not only by dimming them, but by giving them a rosy glow; effectively taking the sting out of any screen by eliminating the painful bright whites that are so glaring. After installing f.lux on my computer, I’ve been able to significantly increase my computer time without increasing any of my symptoms or disturbing my sleep patterns.
That’s not all these apps are good for. f.lux and Twilight were created to dim your computer or smartphone at night to prevent the disruption of your natural circadian rhythms. f.lux, which I’m using on my computer now, can even dim it gradually with sunset so it happens naturally. I’m not certain about twilight as I haven’t tried it out, yet. What this function does is to help you return to your natural circadian rhythms, which can easily be upset by bright light, possibly aiding in better, more restorative sleep and a calmer nervous system.
You can also adjust your daytime screen to any level of softness that works for you. I use a slightly rosy glow for daytime and let it dim significantly at night, sometimes making adjustments when working on images to ensure I have full resolution. It’s easy to make adjustments or disable it temporarily.
With both the reduction in migraine inducing glare and the added benefit of working to enhance circadian rhythms rather than the usual disruption screen glare can cause, programs like these could be a big win for any spoonie who suffers from migraines, glare sensitivity, and sleep issues. Both of these apps are free. You can find Twilight here or in the app store on your android phone and f.lux offers free downloads here for your computer. Upon searching there appear to be others, as well. If one doesn’t work well for your needs, you can always try another. It definitely beats turning your brightness all the way down and wearing sunglasses!
The FaceBlaster does so much more than it’s name implies. So much so that I feel like it’s a bit of a misnomer. Yes, incredibly it can sculpt your face and often times eliminate many of the most hated signs of aging such as a sagging jawline: However, the marketing around these devices for their beauty benefits is really kind of makes me shake my head in disappointment because I fear it masks their incredible ability to bring such positive change to people who have been suffering for years, if not decades.
I myself searched for over a decade to try to find something that would adequately treat my chronic pain and symptoms due to strongly suspected Ehler’s Danlos Syndrome (EDS), Fibromyalgia (FMS), and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), along with Degenerative Disc Disease and a few other comorbid factors I could bore you with, but you can read about elsewhere on the blog. Suffice it to say that I have a modicum of connective tissue, neurological and autonomic problems as a result.
Full Sized FasciaBlaster -vs- The FaceBlaster
If you aren’t familiar with what a FasciaBlaster does, It’s important to have a good foundation to fully understand this article. See my first article on working with one and how it can help then return here to learn about the added benefits of the FaceBlaster. In this article, I will concentrate on how they differ and compare and why both are necessary to treat the whole body.
While the full-sized and mini2 FasciaBlasters helped me to work out many of the fascia problems I was facing, these products both come with rather large sized prongs.
The large prongs on the full sized blasters are perfect for most of the body; the entire core, upper arms, thighs and calves. You can even get a good deal of migraine relief by using them on your head and face. However, the FaceBlaster was just what I needed to help relieve my remaining issues in the finest boned areas of the body not only relating to the head and face, but in the hands, wrists and feet.
As a general rule, I’d say any place on the body that lacks large muscle and or fat as a protective covering, the FaceBlaster is going to be more effective at treating fascia than the full-sized products. This is because the delicate claws can get down into these tiny muscles and deeper between the bones and tissue. This makes it more effective on the skull, as well as the face, hands, wrists feet, the bony protrusion of the shins and so forth.
The FaceBlaster Produces an Immediate Reduction in Symptoms
The FaceBlaster is incredibly effective in these areas. I’ve only had mine 10 days, but it’s already made a huge improvement in my carpal tunnel symptoms, my migraines and reduced the numbness in my right leg that I was told I would live with for the rest of my life.
As anyone who reads my blog on a regular basis knows, I have suffered from non-stop head pain for almost a decade and have had migraines for 20 years. The constant pain and other symptoms of migraine, along with POTS forced me to live a life sequestered to my room with little light and sound because I simply couldn’t bear it. It was no life at all. While doing the migraine series with the FasciaBlaster helped significantly improve these things and pretty much eliminated my light and sound sensitivity, I still experienced almost daily breakthrough pain when becoming active for more than an hour or two a day. While I could get relief from these breakthrough migraines by doing another treatment of the head, face and neck, I was starting to feel like I was living with the mini2 glued to my hand.
As soon as I began using the FaceBlaster, the time between migraines began to extend. Now I can go two days in between migraine series treatments without any “touch ups” and still have a perfectly clear head even when I’ve spent time doing fairly rigorous activity. Over the last four days, I’ve actually been completely migraine-free. This is a huge step for me, as I haven’t known head pain free days for years without constant intervention. In the last 10 days I’ve taken one triptan, which was really my own fault for leaving the house without a blaster!
The change in my wrists were immediate and staggering. I treated them the first day I received my FaceBlaster and was rewarded with the immediate cessation of numbness that I had been living with since I was a bank teller 21 years ago. This numbness always began in my hands every time I type, hold my cellphone, a book or do pretty much any activity.
Curious to see how long this would last, I opted not to treat my hands again until the numbness returned. It took until day 9 to feel that tingle again. I also noticed it greatly extends the amount of time it takes for me to begin experiencing pain as a result of activity and I’m hopeful that with continued treatments and the ever increasing blood flow and nerve flow that I will be able to build healthy new muscle in my hands and wrists and I will continue to regain more of the motor control I have lost.
When I treated my feet, I was extremely cautious with my right foot as I have a lot of nerve damage in that foot from my back surgery. While I experienced no numbness prior to my surgery in this leg, most of my pain radiated down that leg and when I woke from surgery, I awoke with a beehive of buzzing from my kneecap down. While I’ve suspected that a little of the feeling has returned over time with the use of the full-sized blaster, it wasn’t enough to be sure. With the FaceBlaster, the change was immediate and undeniable.
I felt the numbness shift and is now mostly confined to just the tiniest bit of the calf (which I began blasting with the FaceBlaster when I realized how it’s affecting my foot) and my two smallest toes. It feels incredibly strange to have almost normal sensation in this foot again.
There’s a spot at the top of my foot that when even brushed produces a feeling akin to what I imagine a cattle-prod feels like. As I work it with the FaceBlaster, it’s becoming less and less sensitive, too. It appears that my fascia, which had been trying to compensate for the damage in my back and the muscles that were being pulled as a result, simply got so congested that they were constricting the nerve flow and causing the localized numbness. With time and effort, I may have a fully working leg again. I look forward to finding out and reporting my findings to you.
I must offer one caveat to these amazing findings. Since I’ve already been working with the full-sized FasciaBlaster for approximately 8 months, it’s quite likely my results aren’t exactly typical of someone who is starting out working with it for the first time. If you are just starting out, you will see immediate improvements, but know that it can take time. The severity of the problem and other factors can certainly make results vary, though I have yet to find a single person who has said they haven’t seen positive changes quickly when using the device properly.
Treating Migraines with the FaceBlaster
You use the FaceBlaster to treat migraines just as you would with the full-sized blaster. This Ashley Black tutorial will help you get started. Since migraines are caused by many mechanical issues and chemical issues and can put the fascia in many parts of our upper body in crisis, it’s important to treat all the areas the migraine series indicates; the head, temples, forehead and jaw, the neck, chest, back and arms.
Once you get your migraines under control and most of the fascia in good shape, you will know where your migraines develop and what to focus on most. You will feel the soreness beginning to build before the head pain or other symptoms actually start and this is the best time to address them; before they actually turn into full blown, distracting pain. While you want to treat all of these areas, you can make the most of your treatments by focusing the brunt of the treatment on these problem areas. It will actually happen kind of naturally, because you’ll want to rub these areas until the soreness is relieved.
Treating your Carpal Tunnel
Carpal Tunnel actually involves the hands, wrists and tissue throughout the forearms, so it’s important to work all of these areas with the FaceBlaster. You want to be firm, but gentle, working the prongs into every nook and cranny of the hand, wrists and forearms, spending time on every joint, juncture and cleft. In the meat of the hand and arm, dig a little deeper to be sure you get into the fascia and be sure to stay with working in the same direction. For some reason, this is a challenge for me on the hands.
When working in these areas for the first time with the FaceBlaster, you may feel something akin to tiny shocks. Don’t be alarmed by this. I’ve heard this reported by others and experienced it myself. I believe it’s just feedback from nerves that have been cut off for such a long time.
It’s always a great idea to treat yourself from forearm to fingertip after blasting sessions to relieve any aggravation you’ve caused during treatment. It’s a common complaint among Zebra’s, as most of us suffer from hand pain for one reason or another and a quick treatment of these areas is a quick and easy fix. I also have been known to treat my hands with a topical analgesic such as biofreeze to help with this problem.
I’m not going to go over treating feet, as the same principles really apply to the feet as they do the hands and I really don’t suffer from any specific problem, so I fear I won’t be any help to those who do. I can tell you that the old ache from an injured achilles tendon no longer bothers me, though I achieved this with the full-sized blaster.
Treating Localized Numbness
While localized numbness can be caused by a lot of factors, many times the culprit lies in myofascial dysfunction and it’s never a bad idea to try both the full-sized and FaceBlaster on these areas, no matter the amount of tissue. I said at the beginning of the article that one is more appropriate than the other depending on the structure, but this may be the exception to the rule, such as with my calf. For whatever reason, the fine claws of the FaceBlaster are helping my nerve entrapment on my calf, and so may help it in other areas. I would not, however, recommend using the FaceBlaster alone, but rather in concert with the full-sized blaster in such cases to ensure you’re getting both the deep tissue work necessary as well as the more delicate penetration of the FaceBlaster to see if it can help break free and stimulate the finer nerve fibers.
My only criticism of the Faceblaster actually has an easy fix; it’s a slippery little sucker with no natural handhold. But a couple of ponytail holders create a band to secure it to your hand and a loop you can use to hang it for storage in the shower.
Pretty nifty, right? Just a little something I picked up from a woman in my fasciablasting and Ehlers Danlos group. There’s no end to the wealth of information in such groups, so if you’re going to take on blasting to improveyour health, be sure to join one.
Considerations for Choosing the Right Blaster
The drawback for some with purchasing the FaceBlaster is that it currently only comes packaged with the blasting oils and not everyone wants them because of skin allergies or just personal preference. I have found that it’s easy enough to find someone who wants to buy them, however and a lot of women are making deals through the blasting groups on Facebook. I personally didn’t want to wait until the FaceBlaster is released this fall without the oils because of everything I had heard about their effectiveness in treating the above problems and I’m so glad that I didn’t let it prevent me from taking the plunge. After only ten days, I’m thoroughly impressed with the results.
For others, money is an issue and they can only choose one blaster to get started. This is one of the reasons, among many, that I’ve taken the time to provide my thoughts on the two different sized products and how they benefit the body. I feel deeply that holistically, the whole body should be treated and everyone is going to get the best results by doing so. But the reality is that if you’re disabled, it’s not unlikely that you’re living on a very limited and fixed budget. For me, I purchased each item one at a time, as I could afford them and they became available. Ultimately, you have to decide what’s best for you. If migraines are the primary thing you’re looking to fix, though, I’d probably start with the FaceBlaster and get a full-sized blaster as soon as feasible. I got a lot of relief from the full-sized blaster, but I feel like my progress is on warp speed now that I have the FaceBlaster. In fairness, it’s hard to go wrong with any of these products, though.
For more information, tips and resources on blasting, visit:
I find myself getting a bit frustrated lately with the extreme views that people seem to be forever pushing in support groups in regards to holistic medicine. Some seem to think that if it wasn’t produced in a lab, it couldn’t possibly have any benefit, while others are determined to reject en mass the medical industrial complex and all it has to offer. This baffles and perplexes me. Mostly it saddens me because I know a lot of the dazzle is missing out on great natural methods of healing and pain relief that could be improving their quality of life exponentially, while others are causing themselves suffering by taking stances in the other extreme. While our society downplays the usefulness of holistic medicine, the truth is that both forms of medicine compliment one another and we need both to achieve wellness.
I’m often the first to point out the modicum of complex problems in the American healthcare model that have turned many of our doctors into pill pushers, but I’m no fool. Doctors have much more knowledge than I do and the tools to get the job done. I understand that the testing and surgical advances of modern medicine are a boon in many cases and I take full advantage of them. But I’m also a wary consumer who recognizes that many drugs get approved too quickly and can turn out to have dire consequences for those who take them (floroquinolones and lyrica are great examples). You have to exercise a supreme level of caution when deciding whether or not to take a drug when it’s offered by your doctor, do extensive research and weigh the risks. Being a zebra, odds are I’m not going to react well to it, even once I’ve finally decided to take the risk.
There are also a number of procedures and tests done every year that are completely unnecessary and those things are all very problematic. You have to be a conscientious consumer when it come to healthcare, perhaps more so than when making any other purchase, whether insurance is footing the bill or not, because ultimately you’re paying the price with your health by being exposed to dangerous chemicals and alterations to your physiology.
It’s also beyond frustrating to go to doctors and realize that I know more about my conditions than they do, but if you find the right one willing to learn, then they can be excellent partners in care. That’s all they ever should be, but Americans, and perhaps all Westerners, have this uncanny knack of giving up their power to them like they’re somehow infallible and all-knowing, like they’re our gods. They aren’t. They are fallible human beings that have a medical degree. They don’t have all the answers. They can’t tell you what to do, nor should they. They can make recommendations, suggestions. But second opinions are there for a reason and often vary and there’s a reason for this; they’re human and medicine is like everything else; there’s more than one way to accomplish something.
Which brings me back around to holistic/natural medicine. Holistic medicine was pushed out of the American medical industrial complex around the turn of the century not because it didn’t have great value in healing, but because it had no monetary value to the system. Medical companies, hospitals, doctors and medical personnel couldn’t make money off of herbs and natural remedies, but they could make a ton of money off of the new German model of medicine that depended on surgical and pharmaceutical interventions and so a witch hunt was begun to discredit and put naturopaths and homeopaths out of business, going so far as to outlaw such practices. This witch hunt was begun by none other than a Rockefeller who was not even a medical professional, and in fact had no medical knowledge whatsoever. What he did have was a vested interest in the profits. This model kicked off a system that continues to quash any and all successfully created cures by doctors and scientists and the use of natural medicines in the healthcare system that we know today. If you want to know all about it, check out this video:
Nature is exactly where we got our medicine from for hundreds of years prior to this and it healed us pretty well all that time. I’m not talking about laying on hands or mystical energy manipulation, though I won’t put those down because I’ve never experienced them, but I will admit I have my doubts. What I focus on are nature supplied compounds that have proven effectiveness in healing, such as Curcumin, a primary component in turmeric, or stinging nettle, both incredibly powerful and useful medicine for a variety of ailments.
Of course these substances are medicines, even if they are at the same time, herbs, plants and foods. This is true, because when used as medicines, they are either used differently or used in much higher quantities than they would naturally be ingested. Also, we don’t take seriously how food itself can affect the body. What we fuel our bodies with greatly affects how well it “performs,” something every spoonie needs to get straight with from that start. When you venture into the world of holistic medicine it needs to be with the understanding that you have to either pick a naturopath (a doctor specifically trained in these medicines) and/or be set to do a massive amount of research on your own to ensure what you’re doing is safe, along with being prepared to discuss it with your more traditionally focused doctors so they know what you’re taking and can help you make sure you don’t cause any unintended negative interactions with any prescription medications you’re taking. It’s not a journey intended for the slap-dash flibbertigibbet.
When I offer natural medicine options on my blog, I try to take as much of the guesswork out of it as possible by offering good sources of information on the substance, but I don’t know what you’re taking, what your specific diagnoses are or anything else that might be a contraindication of use. That’s up to you to decipher. Ultimately, you have to be your own guard. You have to be in control. But don’t you owe it to yourself, to your health, to your life and longevity to explore every possible option that’s out there?
We all want to be well and we all have opinions about how to best go about it. The best way I’ve found is to keep an open mind, explore all of my options and research carefully those things that I feel have the most merit, regardless of where I first found the information. If I hear a good deal of buzz about a protocol in a support group, I’m going to explore it. If someone tells me they had a lot of success with a particular therapy for the same problem I have, I’m going to look into it. Once I’ve done my research, checking multiple sources and opinions, I then decide whether or not I feel it’s really right for me and how much time and energy I’m going to invest in it to see if I get results. If I’ve done my research carefully enough, I’m rarely disappointed.
Of course, you have to use your common sense and listen to that little voice in your head. The one that goes with the Latin phrase caveat emptor, meaning “buyer beware.” We’ve all seen them, the pills and systems that promise they’ll cure you of your EDS, ME/CFS or Lupus. Anything that promises absolutes should immediately put up warning signs in your head, especially if you have something that’s incurable. Things also shouldn’t be overly simple. You can’t wave a wand and be well. It simply doesn’t work that way.
At the same time, there are herbs and supplements that do provide a wide range of relief and they truly do everything stated, such as stinging nettle. It has an incredibly versatile range of applications, most of which I’ve personally tested and found to be true. The same is also true of coconut oil. Always keep that grain of salt in your attitude, but be prepared to be wowed by some things. Just don’t expect anything to ever be a miracle cure and always let those alarm bells fly anytime someone claims something is. A compound can have multiple uses and can be really great, but the likelihood that it will be your end-all/be-all are slim to none, no matter how many ingredients it contains.
Is it possible someone took substances A-F, did therapies 1-3 over a slow progression and put their autoimmune illness into remission? Yes, it probably is. It’s what’s I’m attempting now and I believe that others have had the successes they share freely and openly on their blogs and in books. Some of these people are where I’ve gotten some of my best information from. But often protocols are not one size fits all and you will have problems they don’t have and they will have some you don’t. This is why I borrow, rather than adopt wholesale and where all that doctor-sponsored testing comes in so handy. Also, there are things nature’s pharmacy just hasn’t been able to account for in my current physiology, at least not that I’ve found, yet. I still need POTS medications while I’m working on getting back to being fully active, for example. I’m also still not convinced that whatever is going on with my head and/or spine will not require some sort of surgical intervention no matter how much I want to avoid it.
I need both worlds to be as healthy as I can be and I’m alright with that. I count myself extremely lucky to be seeing pain-free days absent medicinal side effects. It took me a great deal of time, research and meticulous self-care to get here, but it was worth every hard won step. I may not enjoy a “normal, healthy life,” but every day that I manage to be pain-free and out of bed is a major victory for this zebra and gets me one step closer. The more I do to get better, the better I am.
Want to know how I achieved greater wellness? Read these:
Head pain is an incredibly common problem for people with Ehlers-Danlos Syndrome. I have struggled with head pain for so many years that I found it almost impossible to accurately identify where it hurt whenever I was examined by a neurologist. My head hurt everywhere, all the time, though I would often experience sharp, shooting pain or more focused pain in certain areas at times.
It wasn’t until I began to resolve my issues that I was able to begin to understand the different types of headaches I was experiencing and their possible causes. In large part, these revelations came on the heels of major dietary changes, written about in this article, and fascia treatments, which I talk about here and will be sharing some more about in this article, today.
First, if you aren’t familiar with each of these conditions and you both have EDS and suffer from chronic migraines, get familiar with them now. They can cause a wide variety of symptoms that can wreak havoc on your health and well-being and if you have any one of them, depending on the severity, some may require surgical intervention, physical therapy and/or bracing. Also, in some cases, one condition can cause another, such as CCI or CM can lead to developing OI. Also, any one of the connective tissue issues like CCI, CM or TMJ can lead to trigeminal or occipital neuralgia; chronic nerve pain in the head and face. Of course it doesn’t usually stop there, causing problems with the neck, shouders, arms, chest and back. If severe enough, it can even cause digestive and whole body issues. There is no end to the problems CCI and CM can cause because of its ability to alter the autonomic system.
However, my focus today is on head pain and what I’ve learned about taming it. Because it took me so many years to get it under control and because I didn’t have access to a doctor that knew how to properly diagnose Chiari Malformation, I believed that was likely what I had. However, I am now not so sure.
I went through many different therapies on my neck, some with varying degrees of success, but not completely effective. Laying in bed seemed the only thing that provided me relief from the worst of my head pain, my glare and sound sensitivity, and even that was no guarantee.
Then I changed my diet and finally started eating chemical-free foods and figured out to what I’m allergic and intolerant and that I probably have MCAS and eliminated everything that was triggering me that I could. Yet more of my head pain cleared, along with many of my lifelong chronic sinus and respiratory problems.
I finally got a vascular specialist who put me first on midodrine and then florinef to at last get my POTS well controlled while simultaneously weening myself from some of the drugs I was taking to prevent the constant muscle spasms, cramps, and joint pain. Again, this meant less head pain.
But no matter what I did, I couldn’t get the migraines to go away. These are headaches toward the back of my head and along the sides. They come with glare and sound sensitivity. They cause auras that are so vivid and complex I sometimes wish I had the skill to capture them on paper so I could show them to others. They make it difficult to think, to function, to speak.
Over the last few months of doing the migraine series with the FasciaBlaster not only did the heaviness of my head and my neck pain begin to subside, so did my head pain, little by little, until one day I actually had a completely head pain free day and then another and another.
At first, I thought I had developed a cerebral-spinal fluid(CFS) leak and it was taking the pressure off of my overtaxed brain, but after several weeks with many pain-free days mixed with some that weren’t so lucky, I have come to see that it was the FasciaBlaster migraine series that finally did the trick. I’m not honestly sure how long I’ve been doing the migraine series with dedication, so I can’t give you a ballpark on how long it might take you to get relief, besides we’re all different, but I can say that moving toward doing my head every 1-2 days has brought further improvements and now that they are mostly under control, I can do the entire migraine series once a week, my head twice a week and I’m pretty much good to go.
If I do experience any break through migraines, I simply get out my blaster, blast my head (dry works just fine for me) for 5 minutes and it clears up the headache completely about 90% of the time. The rest of the time, it’s brought the pain to a low enough level that I still don’t feel the need to take a triptan.
This may sound a bit odd, but one of the benefits to having those unending migraines gone is that I can now tell when something else is giving me a headache, making it much easier to identify when something is aggravating my MCAS or POTS. Before it was anyone’s guess as to whether I was sitting up too long, if I ate the wrong thing, if some scent might be a problem (I’m allergic to most synthetic scents), or if my blood pressure had dropped too low. Now, I can more easily monitor the rest of my health and that’s very valuable to figuring out how to control and improve all of my comorbid conditions.
Identifying Head Pain and How to Treat It
In order to help you identify the type of head pain you’re experiencing, here’s a few tips about mine.
CCI & CM
Feels like: dull to sharp burning pain in the neck, back of the head, sides (around the ears) and to a lesser extent in the temples. While the pain radiates from the neck and the back of the head, it extends up toward the face, but doesn’t quite reach it. It can however, create tension in the forehead and temples, so they can begin to hurt and these areas benefit from massage or fascia work. Can be accompanied by visual auras, light/glare sensitivity, sound sensitivity, nausea/vomiting and mood changes. I am told CM feels much the same way.
Treatments: Triptans work fairly well with these migraines, but you need a prescription. If a triptan doesn’t work, you can add a benedryl. Don’t know why it works, but it does. For prevention and treatment, the fasciablaster is the best thing I’ve found yet. There are also physical therapies, surgeries, preventative medications and treatments such as botox that you could discuss with your physician, but of course I recommend healing the fascia and rebuilding the muscle to support your head and neck so you no longer need medical intervention. This is why my primary recommendation is a program like the FasciaBlaster migraine series or another route of physical therapy.
Feels like: all over/nebulous pain, dull ache. If respiratory in nature, it can bring on nasal congestion and pain in the sinuses, but often, it’s just a general headache. Usually, if it’s related to allergies/MCAS, it’s accompanied by joint pain, digestive issues such as bloating, inflammation and diarrhea.
Treatments: MCAS is complex disorder and treating the resulting headache really isn’t enough, but if you find yourself in a flare with a headache, try some zyrtec, zantac, and benedryl. I know it sounds weird, but it will get you further than tylenol. The best thing you can do is begin the long process of identifying all your triggers.
Feels like: Sharp shooting pain radiating from the top of the skull. I still get these from heat intolerance, even though I have my POTS well in hand. They hurt and they take a long time to resolve.
Treatments: I wish I had a fancy trick for these, but I don’t. You need plenty of electrolytes and to cool your head off. My best recommendation is a cold shower and plenty of ice cold ORS followed up by a nap.
Of course the best way to treat any and all of these conditions is to know your enemy and proactively treat them. In other words, if you know you have POTS and heat intolerance, stay on a good treatment plan with your doctor, do your best to stay out of the sun and drink plenty of electrolytes when you know you’re going to be out. Part of being proactive is also making sure you have everything you need when you leave the house; medications, ORS packets, assistance devices, etc. It’s a pain in the ass, but waiting an hour to take a triptan can mean the difference between a close brush with a migraine and 3 days of trying to get them back under control.
I just published my 100th post on Disability Depot about the dietary changes I’ve made that have helped me to get back to being the person I used to be. A 100th post feels like a bit of a milestone, since there has been many a week or even month that I’ve been too light sensitive to use my computer or too fatigued and brain fogged to write anything of substance. There have been many times I’ve considered giving up, wondering if this blog really benefits anyone, if maybe I’m just sitting here talking to myself, which I can do perfectly fine without the glaring screen and keyboard. But my stats and little list of followers and occasional likes here and there tell me my voice is occasionally heard, even if I rarely receive any response.
Curious, I scrolled through to see what my most popular posts have been. By far, the winner is Fascia Treatments for EDS and Fibromyalgia , which I love because wellness is so important to me and fasciablasting is so integral to my path to wellness right now. I began this blog with the belief that my experiences have coalesced into a certain level of expertise and that maybe someone will benefit from that knowledge. I love sharing what I’ve learned with other people and I truly hope it will bring someone else the same kinds of exciting changes it has brought me.
It’s been a long and winding path, but the road to wellness is rarely a linear one. I had to let go of the belief that the American medical-industrial complex would swoop in and save me, if only I found the right doctor. I had to spend hours and hours reading and considering, experimenting and sometimes failing. It’s like doing the cha-cha. Sometimes your illness propels you forward, sometimes it pushes back.
It’s been much the same with this blog. There are things I wish I’d done differently, things I’ve long since published that I might change or even take back if I could now. Nothing “wrong” exactly, but now I know they were only stepping stones along the way that might have been less significant than originally stated.
Still, despite the changes and additions in diagnoses, the evolution of my therapies, I feel like I’ve put together some pretty stand up advice on how to treat a wide variety of symptoms and helped to spread some awareness and new understanding while giving myself an outlet for my need to stay connected with the outside world while I was forced to live a mostly homebound life.
Thanks to all of my discoveries and hard work, I’m happy to announce that’s becoming less and less true. First came the nutritional and mitochondrial supplements and dietary changes, then I began the treatments with the FasciaBlaster, all the while weaning myself from the staggering number of medications my trove of doctors put me on. All to arrive at a place where I am now able to enjoy a couple of hours out shopping, exploring, talking with neighbors, and generally enjoying a bit of what life has to offer all without the use of any assistance devices.
My latest triumph includes enjoying my first head pain free days in years. As this is such a complex topic, I want to save it for a blog post of its own, but I can tell you what a relief it is to actually be clear of this pain and how it had become so much the norm for me that I didn’t even recognize that it was always there until I finally free of it.
Yet, my disability is far from over. I’m still managing my head pain an hour at a time. I’m still running out of energy after a few hours. I still ache like I worked a 12 hour day after just three. I may feel refreshed from three hours of standing around or a grocery trip after a good night’s sleep, but three days in a row of it and I’m exhausted for several days. I’m still working out some of my food intolerance and need to be tested for all allergens and a mast cell condition, because I need some help with these and all the flares they’re constantly causing.
The road is considerably brighter, though and I find myself daydreaming about a future that might include a career and a social life again. The social life seems to slowly be taking shape. I have neighbors I like to talk to and another woman has started coming over to workout together with the FasciaBlaster. These connections were dearly missed. But the career will have to wait until I am genuinely prepared both mentally and physically to maintain a job and care for myself while maintaining my therapies. I also have to face the fact that it’s possible that I’ll never get there, though I prefer to be optimistic and believe that the steady strides I have attained over the last year will continue.
I’ve thought a few times about revamping the blog, giving it a different name and focus. There are many things I planned for it that I never did and may yet never accomplish though screen glare isn’t really a problem so much anymore. The problem now is that what I want to spend my time on is getting better rather than talking about getting better and that requires a very different sort of work than sitting under this laptop!