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Oi And Cfs


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OK, I know this has been asked before, but how do you know if you have "just" POTS, or if you have POTS and CFS?

I have been taking florinef, and it has helped a lot with my "classic" POTS symptoms (ie, the tachycardia). I hardly ever have significant standing tachycardia any more. Some other peripheral symptoms, like excessive thirst and excessive urination, have been better on florinef, too.

However, my fatigue is just as bad. I looked on-line and I have some CFS symptoms but not every single one, so it doesn't seem clear-cut to me. I have had "weird" bloodwork, but always attributed it to POTS. I had been attributing my extreme fatigue to POTS, but now that most of my POTS symtpoms are resolved *except* for the fatigue, I'm wondering if something else is going on.

I know some doctors believe OI and CFS are the same disorder, and still others believe they often go together. Does anyone know how I would figure this out? CFS seems like an even harder thing to diagnose than POTS, and I don't even know how to begin sorting this out. I know I need to see my doctor, but I want to go with articles, suggestions for test, etc, as each doctor's visit costs me more than $100 so I have to make good use of my time.

Thanks for your help,

Jump

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Hi Julie,

There really are no tests for CFS, it's a matter of exclusion and meeting a certain number of CFS criteria. My cardio happens to believe that I have CFS with my dysautonomia, but you'll find different opinions around. She things the two are often inter-related, and I concur with her thinking. You can ask your doc what he/she thinks. I know someone posted an article once about the two going together, and I think the study was from Vanderbilt, but I'm not sure. Sorry! You can try a search...

Cheers,

Jana

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I am not full of information but I wanted to add that I am not tired!!! I get very weak...hurt to move cna't breathe..and did I mention very weak?? But tired, no. So I don't know if they are the same...POTS and CFS. I know many put them together but there are obviously some of us who really are just POTS/dysautonomia stuff.

Years ago I took something because I was sooo tired all the time (after Guillain Barre). I don't remember what it was...it was a very controversial drug but at least I was then able to stay awake all day and that was a plus!!

Erika

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jump, the criteria for CFS is varied depending on which criteria you use. However, the hallmark symptom is post-exertional malaise. IF you do too much or try to exercise, are you bed-bound afterward or do you get sick?

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Thanks guys! I see there is another thread about this very thing on the front page, so I will read that, too.

Dsdmom, I do have a bad reaction to trying to do too much, but I always thought it was POTS. If I exercise too much, or just do too much in general (too much walking around, too much work, etc), I run a fever, experience intense chest-pain, and crippling exhaustion. This doesn't happen to me very much any more to such a severe degree because I REALLY pace myself. I have learned my limits, and if I abide by them, then I am just exhausted, and not feverish or totally unable to function.

I wouldn't normally worry too much about the distinction, but I am thinking of going back to school and I am wondering if I need to get to the bottom of this so that I can be armed with the right diagnoses if I end up having difficulty in school.

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