New Doctors, New Treatments

As I wrote in my last post, it’s taken me several months to recuperate from my attempt to work a part-time job. While I was on the right track for the last couple of years after being bedridden with undiagnosed POTS, severe migraines and other symptoms stemming from EDS, I set myself back pretty good by attempting to work only a few hours a week as an Uber driver. While I may never be suited to this kind of work given the particular challenges of these conditions, I would still like to be my healthiest self and try to achieve the most productive life possible despite my many conditions. I would also like to live as pain-free a life as possible; a tricky proposition for someone who suffers chronic pain, but can’t tolerate most pain relievers. Luckily, my recuperation is going very well, and thanks to some new strategies provided by new doctors, I feel like I’m on my way to even better health than before my setback.

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What a relief it is to have finally found a group of doctors who actually “get it” after nearly 20 years of searching for answers almost entirely alone. I finally have the correct diagnoses, doctors who have taken the time to study and understand these illnesses, and just as importantly, take the time to listen, BELIEVE and actually address my problems. What a world of difference this makes. Within the last 6-9 months, I have found a new primary care physician, headpain specialist, physical therapist and urogynecologist. Add them to my already great vascular cardiologist and I am already well on my way to better health.

My headpain specialist, who happens to be world renowned, seemed to know right off the bat exactly which drug would finally bring me peace after a decade of severe and debilitating migraines. I’ve been taking topamax since around 2010, however it’s never prevented the migraines completely. It just prevented them from being non-stop, bone-crushing, puking every hour, hide from the world under blankets kind of pain to being almost tolerable. Aside from topamax, I’ve tried approximately 10 other medications. No one ever tried verapamil or a similar calcium channel blocker, however but this doctor looked at the whole patient, my POTS, and understood that my migraines were likely vascular in nature. At 240 mg per day, my migraines went from 3-5 per week to just 1 a week. A couple of weeks ago, he upped my dosage to 360 mg, and I’ve been migraine free for 12 days, despite having dropped my topamax dosage from 75 mg to 50mg over a month ago.

Verapamil or another calcium channel blocker like it should probably be one of the first drugs tried for anyone suffering from migraines and dysautonomia of any kind. Not only does it help to regulate heart rate, but it’s been shown to be incredibly effective against vascular migraines with few to no side effects, according to this and other studies I have found. Topamax has no end of side effects that I’ve put up with for years because it was the only thing that brought me a modicum of relief. Just by decreasing my dose by 25 mg, I feel calmer, more energetic, my food tastes almost normal and I’m not suffering such severe dry mouth. I will definitely be attempting to wean myself from it soon.

I chose my new PCP in part because I was told he was being trained in how to care for Ehlers-Danlos patients by a well respected PCP in this area as well as my headpain specialist and I picked a winner. He’s already helped me a great deal by helping to properly adjust my meds, submitting a referral to a geneticist for further exploration of my EDS type, getting me connected with an excellent urogynecologist to address ongoing pelvic floor issues, and getting me started with a great physical therapist. I don’t have to argue with him, bring him research to prove I know what I’m talking about or deal with being treated like a hysterical patient when I question the safety of a drug he’d like to put me on. He also took an MRI of my lower spine to confirm that my incontinence issues were not related to my spinal deterioration, and since it would all take a while, he went ahead and prescribe me oxybutinin to help prevent anymore accidents while I was getting the help I needed. This all proved to me he’s a thorough and thoughtful practitioner.

My urogynecologist is a hoot. He’s a very good doctor, but relaxed, funny and easy to talk to, qualities I really appreciate in someone who spends a lot of time checking under the hood, so to speak. And he too seems content to treat me as a whole patient and not just a conglomeration of body parts located below my waist. He was even well versed with FODMAP issues and helped me to decide that fiber was a piece of the puzzle I had been missing in achieving better gut health and bathroom success in addition to needing pelvic floor therapy. He even had my records from my hysterectomy transferred in so he can determine exactly what they found as I never got a good explanation out of the surgeon and he agreed it could inform my future health. I’m looking forward to seeing what he has to say about it.

I’ve saved my physical therapist for last because I feel like this lady is really something special. I’m seeing her for pelvic floor therapy, but she’s truly taking a holistic approach to my therapy. Yes, she’s treating my pelvic floor condition and doing a great job of it, but she’s also working her way out from there, ensuring that what I do for my strengthening exercises are safe for my collagen depleted joints and muscles to handle, that I’m staying inside what is considered a “normal” range of motion and that I’m not doing too much. She’s also showing me how to modify exercises for good days versus bad days so that I don’t have to take days off and lose momentum (something I never contemplated, even though I’m endlessly frustrated by constant setbacks). She does this by giving me three different versions of the same exercise to do, only they have different levels of challenge. I can not only work my way up if they’re too challenging now, but do the easier ones on bad days. In addition to that, we’ve begun working on strategies to ensure I’m doing housework and lifting safely to protect my back and joints. Talk about a holistic approach! I LOVE HER! I look forward to adding some of her wisdom to my exercise posts.

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Energy Abounds!

I just wanted to do a general update on how things are going now that I’ve been working for a month. It’s crazy how much things have changed already, but that’s life in spoonieland. If nothing else, things are always changing, be it good or bad. Luckily for me, things have been climbing like I’m a hot air balloon attendant rather than an Uber driver and I think I probably have PQQ to thank for that. Without my protocol, I’d still be laying in my bed moaning to myself and contemplating how to exit this world as painlessly as possible still. Thank goodness those days are behind me and I’m going to work hard to keep them there, though I’m pragmatic and understand that with an Ehlers-Danlos body, I only get so many choices. Still, there are many choices to make and I’m dedicated to controlling as much of this disease as it will allow.

In the energy department, I couldn’t be happier. It seems I only continue to gather more weekly. Sometime last week I realized that I was spending a lot of my time fearing something that just wasn’t happening anymore and it was time to unclench and enjoy my life a little more. Post-exertional malaise has taken a vacation and I can comfortably get to work without that bastard staring over my shoulder. I actually wake up every morning feeling fully recharged and ready to take on my day, pain be damned.

Even my pain levels are fairly low. Yes, I’m still fighting with headaches, but they’re minor compared to the severe migraines I was fighting with for years that included unbearable bouts of nausea, vomiting, auras, light and sound sensitivity that had me locked away from the world for weeks at a time.  I’m also still dealing with near daily subluxations and the sore tendons, ligaments and muscles they leave behind, but that’s nothing in comparison to the years of agonizing muscle spasms and myofascial adhesions that left my entire body wracked with searing pain for years. Some days, I don’t even have to take any pain meds at all. Others, it’s as simple as taking a few tylenol and a muscle relaxer or applying a topical here and there. Life is pretty sweet, really.

I’m just a bit overwhelmed trying to deal with all the change. I feel wonderful, but I’m having a bit of a hard time keeping up. I don’t trust this new world order. I’m constantly looking over my shoulder, waiting for that infamous other shoe. I’m afraid to increase my work hours and use my SGA only to fall ill. I fear increasing my exercise and costing myself a day or work, even though what I do is mostly sedentary, because like it or not, the mental exertion costs my body almost as much as physical exertion.

And then there’s what I want to do versus what is best for me to do. Like I love the great outdoors, specifically the mountains and the woods and hiking trails, but the worst thing I can do for both my joints and my osteoarthritis are jarring activities. I should stick to my recumbent bike and walking at the mall, but I want to be hitting the trails at Red River Gorge and drinking in all the gorgeous fall color. Luckily, I found a bit of a compromise in a few trails that are mostly flat and somewhat paved combined with some drive up lookouts, so my husband and I drove down on Sunday to check them out.


What amazing beauty. It was the first time in 10 years we were able to visit and we did very well on the trails we chose, always turning back when the trails began to dip too much for my safety. I came home with only one minor subluxation and a hip jamb that didn’t even hurt the next day, a little knee pain and only the slightest post-exertional payback the next day. I am elated that our hiking attempt was a success and I now know that I can do a couple of miles so long as I refer to guides and follow the rules I’ve created for myself closely. This disease is all about compromise and when you really love doing something, you have to find a way to make it work.

Hopefully I will soon find time to turn one of these treasured shots into a painting. This is honestly one of my frustrations, however. Having time to do the newfound things that I love. I began painting when I was housebound and needed an outlet for creative expression that didn’t require the use of the speech centers in my brain. They require an immense amount of time that I no longer have, though. I can’t even seem to keep up with the housework and I’m only working 3 days a week. While I no longer require full days of rest in bed, I still need my daily rest breaks of kicking back and staring at a little mindless television while giving my body a rest in my recliner. Also, because my joints are so unstable, I don’t dare rush through physical tasks of any kind. Everything takes so much more time than it did before I became ill. I feel like a turtle in a rat race. I can’t even keep up with my beloved blog, though I try!

One day at a time, one step at a time. I’m so amazed by all that I’ve recovered, I won’t be surprised if the complaints I’ve listed here today are things I will be celebrating a victory over somewhere down the line. But even if I don’t, I can’t complain. I’ve come so far from where I was and I’m proud of myself for taking the many steps required to get here. I’m finally in a place where thinking about the future isn’t such a scary thing. In fact, I view it with relish and find myself making many plans for my future alongside my husband. It’s a much different worldview than I’ve possessed in many years and it has me shouting from the mountaintops to be counted in this life.

The Importance of Good Posture for Zebras

Posture doesn’t get its due when talking about health and wellness in the Ehlers-Danlos community. Yet poor posture can be a major contributing factor to the misalignment of our joints, causing us endless aches and pains that can turn into long term problems, from our necks and spines, to our shoulders and feet. Posture isn’t something you should just be paying attention to when standing, either. It’s something we need to be conscious of when walking, sitting, lifting, moving and even laying down or relaxing in front of the television at night.

What is Good Posture?

According to the Cleveland Clinic, posture is the position in which you hold your body upright against gravity while standing, sitting or lying down. Good posture involves training your body to stand, walk, sit and lie in positions where the least strain is placed on supporting muscles and ligaments during movement or weight-bearing activities. Proper posture:

  • Keeps bones and joints in the correct alignment so that muscles are being used properly.
  • Helps decrease the abnormal wearing of joint surfaces that could result in arthritis.
  • Decreases the stress on the ligaments holding the joints of the spine together.
  • Prevents the spine from becoming fixed in abnormal positions.
  • Prevents fatigue because muscles are being used more efficiently, allowing the body to use less energy.
  • Prevents strain or overuse problems.
  • Prevents backache and muscular pain (R).

Standing Posture

Developing good standing posture can take work if you’ve developed some bad habits or are in some pain. Take a look at the slides below for some tips on how to correct posture and check your posture using a wall. When first starting out, it’s a good idea to check your posture several times a day to ensure you are engaging in proper posture practices, keeping these tips in mind and utilizing the wall test.

Source: Mayo Clinic
Source: Mayo Clinic

Sitting Posture

Maintaining good sitting posture can be even more challenging with the variety of seating one can face in any given situation. The most important thing is to maintain proper posture when sitting for long periods, especially at work:

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Source: Mayo Clinic

When typing or using your hands, you should be able to do so while maintaining the above stance, with your arms at an approximate 90 degree angle. Computer screens should be positioned directly in front of you so that you don’t have to tilt your head or strain your neck in order to see.

If you find yourself in a seat without a back or sufficient lumbar support, the Cleveland Clinic advises this method of determining acceptable posture:

  • Sit at the end of your chair and slouch completely.
  • Draw yourself up and accentuate the curve of your back as far as possible. Hold for a few seconds.
  • Release the position slightly (about 10 degrees). This is a good sitting posture.

You would then follow all remaining rules from above. They also added these helpful tips:

 

  • When sitting in a chair that rolls and pivots, don’t twist at the waist while sitting. Instead, turn your whole body.
  • When standing up from the sitting position, move to the front of the seat of your chair. Stand up by straightening your legs. Avoid bending forward at your waist. Immediately stretch your back by doing 10 standing backbends.

 

Correct driving position

  • Use a back support (lumbar roll) at the curve of your back. Your knees should be at the same level or higher than your hips.
  • Move the seat close to the steering wheel to support the curve of your back. The seat should be close enough to allow your knees to bend and your feet to reach the pedals.

Correct lifting position

  • If you must lift objects, do not try to lift objects that are awkward or are heavier than 30 pounds (less if you are deconditioned).
  • Before you lift a heavy object, make sure you have firm footing.
  • To pick up an object that is lower than the level of your waist, keep your back straight and bend at your knees and hips. Do not bend forward at the waist with your knees straight.
  • Stand with a wide stance close to the object you are trying to pick up and keep your feet firm on the ground. Tighten your stomach muscles and lift the object using your leg muscles. Straighten your knees in a steady motion. Don’t jerk the object up to your body.
  • Stand completely upright without twisting. Always move your feet forward when lifting an object.
  • If you are lifting an object from a table, slide it to the edge to the table so that you can hold it close to your body. Bend your knees so that you are close to the object. Use your legs to lift the object and come to a standing position.
  • Avoid lifting heavy objects above waist level.
  • Hold packages close to your body with your arms bent. Keep your stomach muscles tight. Take small steps and go slowly.
  • To lower the object, place your feet as you did to lift, tighten stomach muscles and bend your hips and knees.

Maintaining Good Posture While Laying Down

  • In order to maintain proper neck support, your pillow should only support your head, not your head and shoulders.
  • Adjust your head pillow height depending on whether your lying on your back or your side to better support your neck.
  • Try to sleep in a position which helps you maintain the curve in your back
    • On your back, use a pillow under your knees and a lumbar roll under your lower back
    • On your side with your knees slightly bent, try using a thin pillow between your legs and a thick one to hug to your chest to support your shoulders
  • You may want to avoid sleeping on your stomach, especially on a saggy mattress, since this can cause back strain and can be uncomfortable for your neck.
  • Select a firm mattress and box spring set that does not sag. If necessary, place a board under your mattress. You can also place the mattress on the floor temporarily if necessary. If you’ve always slept on a soft surface, it may be more painful to change to a hard surface. Try to do what’s most comfortable for you.
  • Try using a back support (lumbar support) at night to make you more comfortable. A rolled sheet or towel tied around your waist may be helpful.
  •  To protect your back when standing up from the lying position, turn on your side, draw up both knees and swing your legs on the side of the bed. Sit up by pushing yourself up with your hands. Avoid bending forward at your waist.

If you find you’re having difficulty following some or all of these rules due to existing conditions, it’s probably a good idea to see your practitioner and/or get started on a new wellness regimen. For ideas on how to get your connective tissue into healthier shape, take a look at the Zebra Pit’s Protocol List and Health and Wellness sections for some helpful tips.

 

Exercise: The Best Remedy for POTS

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.

These are some of the recommendations made by Dysautonomia International on how to get started on your own.

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:

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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.

Suggested reclined cardiovascular exercises include:

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:

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From the American Heart Association

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!