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This is why I do Tai'Chi, QiGong, Gong Fu (Ehlers Danlos Syndrome)

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  • This is why I do Tai'Chi, QiGong, Gong Fu (Ehlers Danlos Syndrome)

    [ame="http://uk.youtube.com/watch?v=PunQu-bId1M"]YouTube - Ehlers Danlos Syndrome[/ame]

    Ignore the bizarre ad for another bizarre program at the end about male pregnancy.
    Totally possible, but the world isn't ready for it yet.

    And, the voice over is totally dramatic, and I think the family themselves are dubbed - looks like they're German, so they got American people to do the dub.

    If anyone recognises this guy, I'd be really interested in learning more about him!

    That's the medical condition I have :-)

    Djon Ma
    Karma Dechen Djon Ma
    "For as long as space endures, And as long as living beings remain, Until then may I too abide, To dispel the misery of the world."
    Shantideva

  • #2
    wow djon, thats just crazy, lolo it sounds messed up but how could you have sex like that lolo, for the love of god

    and is it painful when you joints dislocate..i have never had a joint dislocate btw.. only 1 broken bone and thats all my injurys pretty much in life
    "did you ask me to consider dick with you??" blooming tianshi lotus

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    • #3
      Heh, I can have sex :-)

      As for pain... it's constant pain.
      I have fibromyalgia as well, so the normal dislocation pain a normal person goes through, I get like 10x at least.
      Mine is so bad that I just need to move, like shift around in my seat, and I can dislocate something.

      Oddly enough, broken bones don't hurt half as much as a dislocation. Bone itself doesn't feel pain, the reason you get pain is because the tissue around it becomes inflamed and damaged.
      With a dislocation, you wreck the ligaments and tendons and normal muscles, and they all hurt like hell.

      Normally with EDS, it's not as bad as dislocating for normal people - the ligaments are extra stretchy, so you don't tear a ligament or tendon as easily as someone else, but with the combined FMS, it's hell because of the pain.
      EDS causes constant pain anyway, fibro makes it worse and causes its own weird constant pain and neurological effects.

      I can't really describe what it's like to dislocate something.. umm... it hurts hehe.
      sometimes my joints get stuck, I get that a lot with my shoulder in the night. Wake up and my arm is paralyzed cos my shoulder is stuck.
      Have to move it around forcibly with my other arm til it gets free. That hurts a hell of a lot.

      You're lucky you've not dislocated something doing martial arts. Though tbh, most dislocations are rough stuff like rugby tackles, American football hits, etc.

      Though I think elbows and wrists are more common in martial arts. And fingers if you take a bad hit to the hand.

      Djon Ma
      Karma Dechen Djon Ma
      "For as long as space endures, And as long as living beings remain, Until then may I too abide, To dispel the misery of the world."
      Shantideva

      Comment


      • #4
        damn, just another reason to be thankful i am the way i am. not to pity you or anything, thats life yknow, in a way your probably better off then me in alot of ways and probably made alot less mistakes, or maybe not lolo who knows

        anyway i guess that means you dont do alot of pushing hands at taiji day lolo
        "did you ask me to consider dick with you??" blooming tianshi lotus

        Comment


        • #5
          Actually, recently I've been so bad I've stopped my Tai'Chi and QiGong totally.
          I had a really bad dislocation of my knee about 2 months ago and couldn't walk at all for ages, and they were considering surgery.
          Now I need to start again, and I can't remember the forms well because my brain gets confused a lot because of so much pain and stuff.
          I need to ease myself back into it, but it's always difficult working out what to start with again.
          I should really do myself a print out of what exercises to do depending on how I'm feeling - so start up exercises for getting back into it, exercises for when I've been doing things regularly but am feeling bad, exercises for normal day, exercises for bad days. But the really bad days I have to stop. Though they're becoming the bad days now. Gets worse as you get older.

          And I've made plenty of mistakes :-)

          Djon Ma
          Karma Dechen Djon Ma
          "For as long as space endures, And as long as living beings remain, Until then may I too abide, To dispel the misery of the world."
          Shantideva

          Comment


          • #6
            Djonma,

            Does tai chi and chi gong help with your illness?

            My thoughts and prayers are with you.
            "Life is a run. In attack we run, in defense we run. When you can no longer run, time to die" - Shichiroji "Seven samurai"

            Comment


            • #7
              Truly sorry to hear about this. Do you have type IV? Or do you know?

              Have you been evaluated by cardiologists and opthalmologists?

              This stuff is not my specialty, in fact, a bit far from it, but from what I remember, you have to be careful with exercise, especially types of exercise that stress the joints and other body tissues. Also, exercise with heavy weights really needs to be avoided. People have had some benefit with high dose vitamin C, and also, some monitored physical therapy with light weights that does not put undue stress on the joints.

              AS for this guy on the Discovery Channel, it's great that he does some form of exercise to keep his muscles in shape. But, some of the martial arts stances (and you see him doing some of them in the documentary) involve a lot of twisting, twisting that puts unnecessary and traumatic stress on these fragile joints.

              I've learned a lot doing these documentaries in the past. One thing that people really need to understand, is not to take a lot of information from them. They are entertainment, with some minor degree of education involved. They should not be meant to be learned from.
              Experienced Community organizer. Yeah, let's choose him to run the free world. It will be historic. What could possibly go wrong...

              "You're just a jaded cynical mother****er...." Jeffpeg

              (more comments in my User Profile)
              russbo.com


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              • #8
                T'ai Chi and QiGong have kept me walking around the house and able to move. I have to use a wheelchair outdoors though, but I can walk across the road to the shop, or if we drive to the town centre, I can cope with walking around a little bit.
                Without the T'ai Chi and QiGong I've done, I don't think I'd be walking at all anymore.

                I don't have type IV, I have type III, but I show odd characteristics of Classical Type I as well.
                I have some weird circulation issues that show characteristics of Type IV, but I don't think there's any risk of internal organs rupturing, I just have weird circulation and stuff. A bit like Reynaud's syndrome.
                I also have the autonomic disorder symptoms, (my specialist said I showed really high on the symptoms for it, but the test didn't show it immediately, but it doesn't always happen hehe), which means my heart is a bit funky, and I get tachycardia and low blood pressure when I stand up, so I have to be careful with some movements from T'ai Chi, if I go low, and then up, my knees give in, and my heart goes nuts haha.

                I'm very careful with weight exercises - don't do them at all, with the state my joints are in, it's just not worth it, but resistance and isometric exercises of any kind can cause problems. It's actually how Qigong helps me massively - I am very aware of my body and my Qi, and I can tell if something is affecting me badly as a result.
                (I told my old physio that the exercises he was making me do for my hip were making it worse, he said no, they'll help, my hip collapsed totally and I ended up in the wheelchair for good... I'm not going to take that kind of rubbish again!!).

                My eyes are a disaster, I go to a normal optician, but they give up on me and send me to the hospital a lot because I can change prescriptions in a single week. In march, I got a new prescription because my eyes were so much worse, a week later I got another one because they were even worse, then a few weeks after that another one. They sent me to the hospital because my eyes dropped nearly 2 points in short sightedness in under a month hehe.
                I need to go back though, I can barely see out of my right eye again.
                Not been looked at by a cardiologist yet, I see my specialist in London next November, so I might talk to him about that and see what he thinks, or might talk to my GP again. But my new surgery (cos I moved), the GP's are a bit... humm. My personal GP is really nice - I went to him today and said I needed an injection because my wrist is about to collapse fully and I need stuff sorting out asap to prevent it, and he was really on the ball and didn't not believe me, and understood that I know about my condition, and I can tell when joints are about to totally go.
                Though we made it easier on me so I don't have to go out for injections regularly since I can't get out too easily in winter, and I have super drugs to take for a bit, and if they don't work, I'll need to start having injections on my wrist
                So I might ask him about a cardiologist. The big problem is the head gp at the surgery already said no to me on that, when I was having severe chest pains regularly which is part of the autonomic disorder associated with EDS. She said "don't worry, elderly people get tachycardia and low blood pressure when standing up, so it's ok, you don't need to be looked at."
                1) I'm not elderly... 2) actually, if I have postural tachycardia syndrome, the autonomic disorder, yes I DO need to be under a cardiologist because it needs to be monitored and I can have certain 'issues' with things. So I'm going to talk to my specialist next year about that and force the issue, if my gp won't refer me on.

                I did notice there was a lot of twisting... also the way he put his son's thumb back into place, sure, that happens a lot. My thumbs are permanently dislocated now, they'll never go back to normal again, but they sometimes go even worse. I have to put joints back in all the time, from the simplest thing... but... I got the impression they were all about "live with it, be a man" kind of thing... which is all very well and good, but they didn't explain that actually, if you dislocate a joint too much, you lose it.
                My right hip is absolutely buggered. If I put weight on it, it collapses. Now I can control that a fair bit, using the wheelchair has helped a lot because I stopped walking on it for a very long time and that's helped it get back to normal. I also stopped doing the stupid bloody exercises my physio forced on me (by the way, he laughed when I said it hurt, and said it didn't hurt him so tough... yeah well he's screwed my hip permanently with that attitude!). My left wrist / hand and right shoulder are totally done for as well. Right shoulder is never in joint fully, same with wrist and thumbs.
                That's because I thought it was funny when I was young, so did party tricks of contortion and dislocation, and because I just sucked it up because the doctors told me and my parents that my pain and issues were all in my head (stupid doctors! I only got diagnosed earlier this year, it's something genetic - I've had it all my life). Just sucking it up and going out of your way to do something you KNOW will damage joints is not a good idea. Yeah they dislocate and you can put them back in. But one day they'll stop going back in. And then you're screwed.

                Fortunately I've learnt a HELL of a lot from communities with other people who have the condition, where we share information, ask questions, and try to work out how to live with the condition better. I just thought it'd be interesting for you guys to see what it is I have without me trying to muddle through explaining :-)

                Djon Ma
                Karma Dechen Djon Ma
                "For as long as space endures, And as long as living beings remain, Until then may I too abide, To dispel the misery of the world."
                Shantideva

                Comment


                • #9
                  A recent article in one of my medical journals brings some of these issues to light. If there are things that any of you don't understand, don't be afraid to ask.

                  I have submitted this, not directed at anyone, but as a general educational discussion of this disease process and gong fu practice.

                  I have highlighted some things in bold, to bring attention to them.

                  A previously healthy 20-year-old male with a history of easy bruising presented to the emergency department complaining of intermittent left lower quadrant abdominal pain for one week. He was diagnosed with vascular (type IV) Ehlers-Danlos syndrome (EDS) and attendant defects in type III collagen leading to spontaneous left renal artery thrombosis and common iliac artery dissection. Treatment was conservative. The types of EDS and their general management are discussed.
                  Case Report

                  A previously healthy 20-year-old male presented to the emergency department complaining of intermittent left lower quadrant abdominal pain for one week. The first episode was mild and lasted only a few minutes, but two days later the pain returned with more intensity, lasted several hours, and was associated with nausea and vomiting. On the day of presentation the pain became 10/10 in severity and radiated straight through to his left back. There were no exacerbating factors, but the pain was temporarily relieved by urination. Review of systems was positive for decreased appetite and chronic constipation, but was otherwise negative.

                  The patient's past medical history was remarkable only for easy bruising and a weak stomach. He had no prior hospitalizations or episodes of major illness, no surgeries or blood transfusions. As a child he had varicella. All of his immunizations were up to date. He was on no medications and had no known allergies. His family history was remarkable for his mother dying in her 40s to 50s from an unknown vascular problem.

                  The patient was a tall, thin man in severe pain. His vital signs were unremarkable except for a mildly elevated blood pressure. His skin appeared pale with prominent subcutaneous vasculature. A small hematoma was noted on his posterior left shoulder, and there was a subungual hematoma of the first right toe. Femoral, popliteal, posterior tibial, and dorsalis pedis pulses were full and symmetric. His abdomen was extremely tender to palpation in the left lower quadrant. Bowel sounds were hypoactive. His extremities were notable for arachnodactyly (Fig. 1). Mild leukocytosis and microscopic hematuria were reported. A basic metabolic panel and liver function tests were within normal limits.

                  Computed tomographic imaging of the abdomen and pelvis revealed an inferolateral infarct of the left kidney with a thrombus in a lower pole branch of the left renal artery. There was also a dissection of the distal left common iliac artery extending into the left external iliac, and what appeared to be another, incompletely occluding thrombus. Magnetic resonance angiography (Figs. 2 and 3) was done for better visualization of the lesions.

                  Further patient history revealed that several of his family members had been diagnosed with Ehlers-Danlos syndrome (EDS). His mother had a spontaneous carotid-cavernous fistula and died during surgery to repair it. The patient's maternal aunt had been diagnosed with type IV, or vascular EDS.

                  In the present case, the patient was not anticoagulated. A beta blocker was used to control his blood pressure, hoping that its reduction of arterial wall stress might prevent progression of the iliac artery dissection. The patient recovered without sequelae. At discharge we advised him to avoid contact sports and emphasized the necessity of prompt medical attention if he were to develop any new symptoms. Genetic testing and counseling were recommended for the patient and his relatives.
                  Experienced Community organizer. Yeah, let's choose him to run the free world. It will be historic. What could possibly go wrong...

                  "You're just a jaded cynical mother****er...." Jeffpeg

                  (more comments in my User Profile)
                  russbo.com


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