Life with MS & EDS

May 18, 2010


Filed under: Uncategorized — by mseds @ 7:23 pm
Tags: , , , ,

I just realized it’s been a while since I last wrote.  Things have been pretty uneventful the past few weeks.  I did the MS Walk earlier this month and had a couple of other events that required a lot of energy.  I made it through them wonderfully, but then it takes at least three or four days for me to feel like I’ve recovered.  This past weekend I took Big Sister’s Brownie Troop on an overnight and got very little sleep.  I slept most of the next day and it’s taken until today for me to feel like I’m back to my normal level of fatigue.  I cannot tell you how much I am looking forward to the CCSVI procedure to unblock my veins.  I’m positive that it will have a huge impact on my quality of life.  I’m tired of constantly being unenergetic!

Not much else is going on.  I’ve been having more EDS problems than MS problems.  My DeQuervains is starting to act up again, so I’m being extra careful with my hands, especially my thumbs.  I feel like my writs are bending in weird ways.  I’ve also had a lot more ankle problems.  My ankles are collapsing more often when I’m walking.  My ankle gave out on the way into voting this morning and took my husband by surprise.  I got a “what was that?!”, to which I replied, “oh, just my ankle collapsing again.”  There’s got to be something I can do to make them stronger so that I don’t actually fall and injure myself one of these days.  When Little Sister was a baby we used to use Kinesio tape on her stomach and legs to increase her strength.  We still have a lot of the tape left and I think I’m going try to find out if I can use it on my ankles.  I’ll pass along anything I figure out and welcome advice anyone else has figured out about bendy ankles!


1 Comment »

  1. Hi whilst you say things have been uneventful your life always sounds so busy compared to mine!

    For bendy ankles, there are a few things which may help. A good physiotherapist can show you how to use something called a wobble board to exercise on. As ever with EDS its important that the physical therapist understands the limitations of the condition and expected outcome. It may sound silly but improving core stability may help general stability. The core stabilising muscles help to hold everything together providing inner strength, by supporting the spine, the hips, etc improved strength can help from the ankles up to the neck! Even sitting on an exercise ball whilst at the computer (starting off conservatively if necessary by sitting on it a few minutes a day). Its important to get the appropriate sized ball for your height and weight. A good physiotherapist would be able to show you further exercises to assist. Some enjoy Pilates but it is important to have a teacher if doing this in a class who is aware of the EDS so that one is not hyperextending unintentionally. There are good dvd’s for Pilates if you prefer doing this type of thing at home! I don’t have a wii but I believe there are some exercise based programes which can help, bearing in mind that some of us with EDS are prone to injury I guess its important not to start any regime aggresively. With regard to specific attention for the ankles, an assessment by a podiatrist can be invaluable. A gait analysis will provide a good indication of pronation problems causing the ankle to turn and sublux or dislocate. Many find that custom made orthotics really do benefit (although those with thin skin should err on the side of caution with hard orthotics to put in footwear). By default some find that after they have got used to wearing orthotics in their shoes/boots this can improve knee and hip pain because the gait is improved. I am not personally into braces although I do understand that some with EDS feel they are great, the problem with wearing them is that they do the job of muscles and I have found that if worn too often my muscles atrophy further compounding the problem. But if not worn all the time they can really help to hold the ankles straight thus avoiding injury. Obviously all this is only my own experience and may not be appropriate for you at all. Hormones do have a great impact on my EDS so being aware of that and thinking carefully about how one is moving and avoiding injury can be helpful at these times. Poor propciepection is common in many of us with EDS (knowing where one’s body parts are in space) means patience is required when learning to locate specific muscles, particularly with regard to core stabilising exercise and again a physical therapist should be aware of this factor. I hope you find something to help.

    It was good to see your blog pop up in my reader and sending you best wishes from the uk.

    Comment by Achelois — May 18, 2010 @ 10:22 pm

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