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Always Knit With Someone Smarter Than You

January 18, 2010

For all my years of having, what I have termed, “my mysterious disease”, and having seen a whole host of specialists and never reached any real conclusions, I don’t think I have received as much insight as I did when I spent Saturday knitting with a whole posse of fibery folks, one of whom happens to be a physician.

In all the info that I have read about hypermobile joints, I haven’t read any scholarly, doctorly, long-winded hoo ha on it. After hearing me mention my symptoms, this physician friend of mine printed out info from a doctor-type online source which she gave to me and in which I have read and seen the last seventeen years of my life played out.

Having a weird ass syndrome that pulls in a whole host of body symptoms often leads disparate specialists telling you that you are full of odoriferous feces. After a few instances of this, and after learning the real price of medical tests when one does not have insurance, I have simply given up. Yup, this is wrong and that is wrong and it is just how it is. I’m tired of being accused of being a drug seeking nut job.

So, here I sit reading about the cardiac and circulatory implications of hypermobility syndrome.  If you follow that link, it will make you think that the only issue is your joints. That’s what I thought all along. But when I described certain circulatory symptoms, she said it sounded like this and funnily enough, people with hypermobile joints can often have this. It is also common to people with excessively long necks (I am a human giraffe) and to people with repeated shoulder injuries (I dislocate my shoulders so often I have stopped counting). It makes your hands cold and discolor and they can swell and be painful. It also specifically affects the last three fingers on the hand.  Bingo. That’s me to a T.

There can also be issues with carpal tunnel, TMJ, back pain, palapations, shortness of breath, fatigue, syncope, and blurred vision and about ten other things that I’ve been having issues with.

Of course, there’s not a damn thing that can be done about it. But the next time I’m forced to go to the doctor, I will be taking this information with me.

Finally! I won’t have to wait for my autopsy to get a real answer.

One Comment leave one →
  1. BadCat! permalink
    January 19, 2010 12:40 am

    I was reading your long list of symptoms and was thinking to myself “I wonder if she has Thoracic Outlet Syndrom?” – apparently you’re on the right track.
    Things I would recommend (that have made my TOS more manageable), is better posture and doorway stretches. I used to slump my shoulders and have horrible posture. Now if I slump, my arms turn into lead (just as cold and heavy). Doorway/corner stretches are a life-saver when experiencing symptoms. Put your arms and either side of an open door, bend at the elbows and step forward. This stretches the front chest muscles (and in my case, you can hear the creepy popping/tearing from my muscles reacting to the stretch).
    You might want to also check into Myofascial pain syndrome. It lumps into the big ball of TOS, CTS, and the rest “stupid body syndrom” that I deal with. I’m not sure if would apply to your situation, but if it does, go see Jan at Comfort Zone – she smacks my muscles until they behave.

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