Exercises for Jamming Ankles

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In this video, I demonstrate a series of progressively more challenging exercises you can use to strengthen the ankles, calves and feet to help zebras and masties avoid subluxations, dislocations and jams. These exercises are easy to do and require no equipment.

I finish the video with a hands-free foot and calf stretch used to comfort achy muscles. Remember, stretching and exercise built around stretches, such as yoga, is not recommended for people with collagen issues and these should only be done when dealing with chronically tight tendons or muscle spasms.

Have an area that you’re looking to improve and not sure what to do? Drop me a message and help me decide which exercises to highlight next!

On Independence Day, we took my step-son out for a meal on his birthday. I wore 1 1/2″ high heels for the first time in almost a decade without any foot or ankle pain! Yay!

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Organizing Your Fitness Routine

Exercise is essential to caring for conditions like Ehlers-Danlos Syndrome (EDS) and POTS. In EDS, building muscle can reduce subluxations and dislocations, improve proprioception and reduce injury. In POTS, a safe building up of strengthening and cardio can reduce overall symptoms by increasing blood volume and circulation. In both of these conditions which often run concurrently, cardio and strengthening can reduce pain and inflammation, and can increase energy levels and enhance your mood. Of course there are many other benefits to exercise as well, which you can read about in these articles: Get Moving! EDS and Exercise and Exercise: The Best Remedy for POTS.

In the video below, I talk about ways to organize your fitness routine and exercise equipment to give yourself your best chance at follow-through. I also talk about where to exercise to avoid more injuries and provide a few additional tips in this brief video.

What are some of the things that help keep you motivated to do the work necessary to keep moving? Share your tips in the comments below.

Introducing Vlogs at Zebra Pit

I’m thrilled to announce I will be adding video to the Zebra Pit, starting with this introductory video. While my blog of course has an about section, my videos will be posted on YouTube and sometimes also on Instagram, so I wanted to take the time to do an introduction video. It doesn’t cover much about who I am. More so it covers what we do here at the Zebra Pit and a basic overview of my main diagnoses.

I won’t be switching to vlogging exclusively, but will be using a combination of writing and video, depending on the subject and how I feel I can best present the information I want to convey. I’ve wanted to do this since I began my blog, but with heavy brain fog causing significant delays in my thought processes and ability to recall words combined with having to manage my spoons so carefully, it just didn’t seem feasible until now.

Ideally, many of my posts will be a combination of video and text. I hope this will make the content more interesting and easier to understand with certain concepts.

As usual, I welcome any input you may have about this video and the addition of video overall. Let me know what you think!

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.