POTS??

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My doctor recently said it's a possibility I have me. But I'm having a tilt table test tomoro and I'm being assessed for POTS so I'm abit confused now and don't even know what pots is.

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  • Posted

    POTS stands for postural orthostatic tachycardia syndrome. In other words, when you stand up for any length of time, you heart starts racing. Your blood pressure may also drop. Many peope with ME/CFS also have POTS. You can Google POTS for more info.
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  • Posted

    Hi Gemma, 

    can I ask you if you have Fibromyalgia

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    • Posted

      Hi Katie I've not actually been diagnosed with anything at the moment. I did actually think that but it's just a guessing game at the moment. Who do you ask? Do you have it?
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    • Posted

      Excuse me for jumping into your conversation. Fibromyalgia is commonly diagnosed by a Rheumatologist. He or she presses on specific "trigger" points in the body associated with Fibromyalgia. I believe that whether or not you have pain when these points are pressed determines whether you have Fibro.
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  • Posted

    The table test is used to see how your heart reacts to you going from a horizontal to a vertical position.  If you have POTS I think it will change by 30 or more heartbeats measuring upto 10 minutes.  Sounds horrible to me as I am someone who suffers like that.  I have Fibro & ME/CFS.  Thankfully I haven't been sent yet for that one.  Just the thought of it makes my stomach drop.  I have had a laying ECG (which we knew would be fine) but had to be done before my GP could refer me to the hospital.  The Cardio unit have rejected seiing me cos lots of Fibro people have heart issues.  So my GP has now lined me up for a 24 hr ECG in the New Year.

    You don't have to have Fibro to have POTS it just frequently is linked.  You do need to have quite a few of the pain points to have Fibro.

    Hope the Tilt test was OK.

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    • Posted

      It's an ongoing battle isn't it Julie. My doctor hasn't listened to my symptoms at all. It's only when my heart rate was getting progressively worse even after months off work that my doc referred me to the hospital. Luckily the hospital have been great giving me ecg, heart scans and now this tilt table which I've got at 2pm arghh!! Good luck with your 24 ecg!
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    • Posted

      By luck I bought a finger pulse reader.  I can go up to 145 climbing a house stairs. I spend a lot of my time light headed. I can't walk up a slight hill from the school playground to where I park my car - I have to use my mobility scooter.  My lovely GP is listening, it's the hospital that isn't.  Hey, if we put your hospital with my GP we would have the perfect combination of help. Good Luck. Tell us how it goes x
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    • Posted

      That's horrible julie poor you! Yes that's very true haha!! Just had the tilt table test and it wasn't too bad. I was on it for just over an hour n had a few symptoms... headache, dizziness, hot. I didn't pass out thank god. She said my heart rate was way too fast and my blood pressure was up and down throughout. God knows what's next lol x
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