"I always feel like running away right after."

Do you experience these symptoms?

P.O.T.S. can often be a quite debilitating condition. It is a degenerative disease of the peripheral nervous system marked by orthostatic hypotension. The nervous system is an extensive network that regulates homeostasis’ POTS causes one’s heart rate to fluctuate immensely when shifting from a supine sitting position to standing

"I realized that if I don't tell people how I am feeling, they truly won't know."

The health of the gut determines the health of the body. This is a well-known fact. There are roughly 100 trillion cells inside our bodies, yet the there about 10x as many cells of bacteria living on our bodies. This mass of bacteria lives in harmony with us (most of the time) and helps…

"But you don’t seem like you’re in pain..."

Here is a new hip brace for my daughter to try. I'll fill you in. First, I see a lack of options for people with conditions like this. For starters, if both hips are subluxing, there is not a bilateral support, of this type, available. The reason is...not enough demand. So, instead, we use braces designed for post surgery, which are not exactly the right tool for the job, but as close as we can get. Also, we are not sure if this will hold up to the kind of wear that it may require. These are very expensive items, and without knowing more about how it will work or hold up, it is a big gamble. After my daughter has used it through a long enough span of time to get a feel, I will come back and update. So, why do we have this and what is it for? My daughter stood up one morning, as she does every morning, but this time was different because she passed out upon standing. She fell to her bedroom floor, and her hip and both shoulders were "out". I heard her thunk, and went upstairs to see what was wrong, and found her in this situation. She woke up, quickly, but she needed help getting herself seated so that she could start putting joints back into place. It was a painful and frightening experience, but luckily the hip made a loud "thunk" and settled back into place, followed soon after by each shoulder. The trouble was that the hip began popping "out" easily and often over the next 7 days. The orthopedic surgeon examined our daughter and determined that the joint is not likely to be dislocating, but instead to be subluxing. We understand that the hip is a huge joint, and if it was fully dislocated, I can agree with the doctor that it would not likely be something we could manage on our own at home, in terms of reducing. The brace is suggested to add support in the form of feedback. If my daughter pays attention to the cues that the brace will give her, she can find herself in better positions throughout the day. For example, she has better stability with her legs at shoulder width apart. The brace begins to pinch, lightly, when the feet come close together. It is not enough of a pinch to make force a change, so it is a definite team effort for the brace and the wearer. The comfort is good. My daughter reports that it feels safe and secure, and it provides her with a sense of security. Looking at this brace, on, I don't see how it could possibly prevent a sublux, but I do see how it can provide constant feedback. My daughter will wear her brace only during sessions of instability with the hip, or when she feels like it is sensitive to the point that it may sublux. That is our plan. We have a wonderful team of people at the bone and joint institute bracing store who help to find solutions for the instability problems. This may not be the only or best option for her hip instability, but it is good to have some form of help. When the hip is unstable, there is almost no activity that is safe. Regarding the fainting session that started all of this, we will be following up with a cardiologist in the new year, and I will post if we learn anything helpful to share at that session. She is already diagnosed with Autonomic Dysfunction/POTS and she does tend to pass out about once every 1-3 months. She has no warning for this, so she just falls and wakes up almost immediately. These falls are terrible for any person, but especially for someone who dislocates so easily. Some good news...the shoulder instability that plagued her for years has come into her control. I don't think anything has changed in her anatomy, but it is possible that some minor tears have finally healed after so much break time. I don't know about that, but I do suspect that she has learned how to "brace herself" all the time. As long as she is not startled or taken by surprise, she seems able to do all normal activity without shoulder instability. She is able to stay in school longer and when her shoulders dislocate, she has been able to reduce them quicker. We had all but given up hope that her shoulders could improve. It was years of multiple dislocations every day, and so many doctor and surgeon visits telling us there was no hope. To come out of those past 3 years with this year...it is HOPE! And I want to pass that HOPE on to whoever is reading this. Don't give up. Kiddo is back to physical therapy again in a week, to start a new session. This session is geared to support her hip issue, though I am sure they will focus on core and full body. We have a great PT team here, as well. So, that is the update for the moment. Let us know if you have found success with supporting your hip instability, and if so, through what measures? Also, if you have any questions about this post, please feel free to ask in the comments. Thank you! --- Follow up on hip brace --- After giving it a good try, the hip brace has proven a poor tool for this situation. Because she needs bi-lateral support, the brace only aids one side, primarily by giving her feedback for awareness. She subluxates so frequently, however, that it doesn't help or work because having the brace on makes it hard to reduce subluxations when they occur. We will consider it for a one sided hip flare up, but not working when both hips are flaring and shoulders are flaring, due to the restriction affecting reduction.

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Hi there! Glad you're here to learn what we have to share. We don't claim to be mutant genius experts, but just 2 people who face the ...