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Test time has finally arrived!

August 11, 2011

I made it to the physio; or should I say the transport made it to us. A seriously exhausting day, but the physiotherapist was excellent and very understanding of both the POTS and EDS.

The idea was to find something that I can do to strengthen the muscles and joints, without worsening the POTS (running machines were obviously out of the question).

I have not done anything for the best part of 6 months, and believe me when I say that is not down to being lazy or just giving up, not being able to do anything is actually driving me insane! I know that the EDS and joint pain is worse, because I’m so inactive, but at the same time my POTS is currently that bad that I am unable to exercise and so the downward spiral takes hold.

We’ve started with my worst joints (the knees) and I have various exercises that I can do whilst laying and sitting. Over the last few weeks I have worked up to and extended the amount of exercises per day and can now (providing my pots isn’t too bad) trust my knees to support me as I walk up and down the stairs. It’s not pain free (I doubt my joints ever will be) and they’re certainly “clunk click every trip!” but at least I can use them now.

Over the last 2 months I have applied the same theory to the EDS in my wrists and fingers, which had stopped me playing the guitar. Needless to say, my standard of playing is almost back to normal and again, although not pain free, it just feels good to be playing again in short bursts – too much and my hands cramp up the following day, which isn’t too pleasant.

I go back to the UCLH on the 1st Sept for a follow up appointment, and hopefully we’ll start working on the neck, shoulders or elbows.

I have been seizure free since starting the fludrocortisone; as I said before, it’s not perfect as I still get the muscle convulsions, but the dose was proving to be just enough to hold off a full blown attack. Today I have had to stop taking the fludro in preparation for going in next wed for my autonomic testing. I am rather apprehensive about the interim and how I’m going to cope without the fludro.

On Sunday I take my last beta blocker and then I have a week completely free of any meds, I’m dreading going back to the breathless tachycardic mess I was before, being physically exhausted just trying to brush my teeth at half the normal speed. I know it’s a means to an end, but it’s going to be a shock to the system!

With all that in mind, we phoned the transport people to let them know that they will be transporting me to London without any medication. Not being Paramedics, we were just told that in event of an emergency, they would just reroute to the nearest A+E – fortunately London have taken this into account and want me to go in a day early, to allow for any disruption.

When I first started having the seizures I was already taking beta blockers, and my heart rate still went through the roof, whilst having an attack. It’s a sobering thought, but how high could it go if I have one while not on any meds.

Anyway, positive thoughts and all that! My appointment that I missed for the gastro Prof has been rescheduled for the week after next, so this month is certainly all go!

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One Comment
  1. Wishing you all the best in your testing, and with your time without meds.
    I had to go off of mine before testing a time or two and it was pretty awful, but I’m lucky that I’ve never had a seizure (*knock on wood*) and that I don’t have EDS. (though I have other complications)

    Anyways…I’ll be keeping my fingers crossed for you. Best of luck!

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