Chronic Pain Video


#fibromyalgia #fibromyalgiaawareness #ehlersdanlossyndrome

thank you so much for joining us here in the clouds today! I hope you enjoyed the video and maybe gained something from it!
There are several other hEDS youtubers like me! If you’d like to find others you can relate with as well you should check out one of my favorite health content Youtubers, @Izzy Kornblau
Id love to one day to a collaberation together with her, she has so much knowledge and education on genetic science. She is actually studying to be a genetic scientist! It’s be an amazing opportunity to make some awesome content for y’all with such an educated source!

My Story: I have been managing fibromyalgia and a condition called Hyper-Mobile Ehlers-Danlos Syndrome. Fibromyalgia is a tricky and quite misunderstood condition, as is hEDS (Hyper-Mobile Ehlers-Danlos Syndrome). Fibromyalgia is thought to be a neurological condition for the past few years, but recent studies have made discoveries that it may be more complicated than that even. Showing that those who suffer with Fibro. have excess capillaries, now I am not familiar with how this affects us and why it is relavant but it just goes to show how much we still do not understand about the condition itself. Every person who suffers with it has a different experience from each other. Fibromyalgia can have a list of 200 difference symptoms, most of which is widespread pain that receives no relief from antiinflammatories and has lasted longer than 4 months. Another very common and prevalent symptom is chronic fatigue. Aside from these 2 symptoms many fibromyalgia patients can have any combination of the 200 different symptom that fibromyalgia can cause. It is thought that fibro. can be triggered by stress and/or traumatic events in one’s life. I began managing symptoms of fibromyalgia when I was 21 and it has been a daily companion ever since. In my case, y fibromyalgia was triggered by stress mostly followed by a few traumatic months. I will have videos explain in more detail how things fell into place.
Now as for the hEDS, this one is a fairly recent diagnosis, if it wasnt for my fibromyalgia diagnosis, I likely would still be looking for some answers to explain my pain and…chronic dislocations. Hyper-Mobile Ehlers-Danlos Syndrome is caused from a defect in one of the chromosomes that control collagen production in the body. Now because of this defect the collagen is mutated in a way that it is not as stable as it should be, causing instability in tendons and ligaments that rely on collagen for stabilty and strength. Due to this overly flexible collagen, hEDS comes with symptoms such as hyper-mobillity, joint pain, chronic dislocations, chronic fatigue and low physical endurance. for many it also comes with many injuries due to instability in joints. My injuries have been all soft tissue related (tendonitis, hyperextensions, and sprains) as far as I’m aware. Peope who have hEDS are often refered to as Zebras, by themselves and even by people in the medical field. if you are familiar with the phrase, “when you hear hoof beats, think horses not zebras.” this is the phrase that the term zebra comes from. hEDS is a quite uncommon condition. Although it is the most common type of the Ehlers-Danlos family of conditions (there are 13 different forms of Ehlers-Danlos) 3 of those are classical EDS, vascular EDS and kyphoscoliotic EDS. As far as understanding what they do I will have a video on that topic!

But due to these 2 conditions, it has pushed me to make many changes and modifications to my life. All of these life modifications I would like to share with you and others who are looking for answers in how to continue with life when you feel like its turnedupside down all of a sudden!

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