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CFIDS, PD or POTS?


EarthMother
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Greetings everyone.

New to the boards and doing quiet a bit of thinking about POTS for the last few weeks. I have probably always had orthostatic tachycardia syndrome -- but had a formal "diagnosis" after a tilt table test about five years ago. The same time the Epstien Barr titers also showed chronic and acute infections -- this coupled with severe fatigue and mono like symptoms that lasted over a year ... I was diagnosed with CFIDS (chronic fatigue immune dsyfunction syndrome).

I've managed very well for the last few years ... learning how to "pace" myself. But this past August I had a relapse. Everything seemed to hit all at once again. The POTS is dismal I am so nausaus in the morning and standing is out of the question until much later in the day. What seems the worse "symptom" to handle is the acompanying panic attacks. The body takes such dramatic changes that it is very hard to hold on to ground.

I've reduced my hours at work, but I know time is running out and I need to "recover" soon or face loosing my job of 20 years.

There are so many aspects of this disorder .... there is the panic .... there is the fatigue .... there is the standing ..... where do we focus our attention on recovery? Or at least another long remision?

Thanks for your thoughts.

EarthMother

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Hi.

The worst part is that when the panic attacks start---your way too fatigued to take it. It can be such a cruel illness. :(

I went though this very same thing many times---but somehow I always managed. I pray that things will be better for you soon, and that this will be just a short set back. Your in my thoughts and prayers.

Julie

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Welcome to the board. I hope that you find a great deal of support here--and information too.

I don't have panic attacks...but I know that many on this board do have them.

At some point I got a DX of CFIDS (I think I was 24 or 35), which came before my POTS and NMH dx (NMH is a synonym for NCS)--I got the POTS/NMH dx when I was around 32. I've had mono at least twice, the 2nd time in my mid-twenties. I've also had chronic allergy and sinus problems. Oh, and a dx of EDS III, which is a collagen defect...and Celiac/Sprue, which is an inability to digest gluten (a protien). Yikes, in re-reading what I wrote, it looks like I've got a lot going on... I'm not that scarey in person! (well, unless you are my doctor!)

Some people do experience remission. Some don't. Most of us, however, have periods when we have less, but not zero, symptoms. I had one good year when I was less symptomatic--it was 1996. Some people, especially those with sudden onset, may eventually get better. Others, like me, have had problems from birth, and are unlikely to "recover."

I try to keep a good perspective and focus on other things when I can--while still being realistic (i.e. remembering my limitations with regard to how hard I can push myself without paying for it with days in bed).

Nina

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Welcome to the board = ) I don't think there are any specific answers when it comes to POTS and future prognosis- but I think it's important to focus on the "here and now" most of the time. I try to remain positive, and I feel that is what gets me through the tough days more than anything else. I educate myself to no end, and I try new things all the time when they become available. I will not give up, I continue to make lifestyle adjustments as needed, and when I'm having a good day, I live it to the fullest (within my limits of course). I had a remission during my pregnancy last year, and have had a gradual onset of new symptoms since this past summer- and things vary from one week to the next. I just get through the worst days knowing that there is a better day somewhere ahead!! I will take very minute of good health that I can possibly get- and be grateful for that minute =) I hope that you start to feel better again soon, and good luck at work.

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