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Getting Better Or Worse?


~Naomi~
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Getting better or worse?  

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I've noticed lately several people saying they have improved over time and that this does get better - and that is encouraging. I feel like I've gotten worse. Curious what the majority of us are experiencing. I'm voting 5-8 years because that's when my heart symptoms began, but things weren't right before that- just not sure if it was POTS.

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It will be a year that I got diagnosed, but I feel symptoms started after I had my gall bladder out in 2005. Prior to that I lived a pretty normal uneventful life. Since I got diagnosed which I was at my worst, I have gotten better, but continue with good and bad days, but compared to when I got diagnosed, I am better. I just pray for us all to have some normalcy in our lives with this disease and hope for a cure someday.

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Naomi, I'm like you. It's been almost 6 years for me, and I voted "worse". Back when it first happened, for the first couple of years, I was just lightheaded and had some tachycardia. Now, besides those symptoms, I have extreme heat intolerance, heat surges, extremes in hypoglycemia, and more. It is like I have to micro-manage my life hour by hour. Did I eat? Is the temperature okay in the room? How far do I have to walk to get where I'm going?

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I'm 56 and I've had this for 22 years this january. I voted that i'd gotten worse because even tho many of my me/cfs symptoms are under control, my dysautonomia has worsened. Starting last year, my heart has been beating harder and I've been getting winded easier. I'm having to lay down more often. I'm not sure how age or length or level of illness fits in, but I'm sure these are important factors to consider.

Fwiw tho, i'm a celiac and appear to have been unknowingly eating gluten as my digestion has worsened in the last few months. I'm not aware of a link, but I'm not a medical professional.

As an optomist tho, I still hold onto the hope that we'll find more pieces to this puzzle and more of us

will recover ... Tc .. D

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I seem to go through cycles where I feel a little better and have more energy, but then the majority of the time I have a lot of fatigue and pain. Brain fog, confusion, etc. I voted "about the same" although I've recently been treated for a blood clot in my heart, and diagnosed with small fiber neuropathy. Hope is so important to us all!

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I vote 1-3 years with dysautonomia as that was when symptoms got very pronounced and diagnosis was established. That being said, I believe I have had some ANS quirks all my life (i.e. motion sickness,blood pressure and temperature always running on low side, proprioception problems,GI problems,fatigue and lack of energy, tachy problems off and on for 20 years before this diagnosis).

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  • 2 months later...

i hve gotten worse in the last year and in the last six months i have had intense trouble with walking and talking. i can do one or the other.. whick is very dissapointing because i used to be very social and loved to go out running with my dogs....hoping it gets better! Go figure it got worse after my testing ha ha

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I'm not sure what to answer---

My POTS symptoms appeared suddenly (after what I thought was a series of infections and viral "bugs") and then got progressively worse over the course of 3 years (although part of this I also attribute to an extremely stressful situation that was remedied shortly before I began getting treatment). I've made some improvements over the past 1.5 years, but attribute this mostly to medications and a little with an exercise regiment. If I quit the exercise and the meds, I'd probably go back to feeling how I did prior to meds (esp. considering how I've felt when I've had to be off them for even a day or two). I've still had some symptoms get worse or pop up brand new--- and there are several symptoms that I seem to go in cycles with where I go through periods of time with no problem and then have them come back, sometimes with a vengance. Stress and illness cause crashes/flares. My cardio also seems to think I have NCS.

This summer (late June) will be my 3-year diagnosis anniversary, and in late October I will have had POTS for 5 years (I've had unusual fibro-like symptoms since November of the year before POTS struck-- also after being ill). My cardio seems to think that I will recover, but constantly extends the amount of time that might take and seems to be frustrated I'm not "getting better" already. He has treated POTS patients before, but it seems like they were easier to treat and recovered faster.

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My experience has been:

Oct 2003 - severe onset, gradual improvement to Dec 2004 then almost complete remission.

Oct 2005 - relapse, positive response to meds, improved by May 2006, with mild symptoms continuing

Oct 2008 - severe relapse, poor response to meds, improved by Jan 2010 with mild symptoms continuing

Dec 2011 - severe relapse, good response to medication - still going...

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My symptoms started in 2008, been getting worse since then. Seem to have hit a road block with meds that help and keep getting new symptoms with time. Doctors seem to be out of answers. With new symptoms keep getting same answers of it's POTS related and nothing we can do. That reply is getting old and because Dr reports say symptoms are under control my insurance wont allow me to see any new Specialist. But I've had multiple surgery's and treatments to try to help and there not. But they keep paying for that. Frustrated with illness, Dr's and Insurance company's. Keep thinking the new symptoms will stop eventually. Right?

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All of my symptoms started about 11 years ago..... i've been getting worse, each month, each year..... but i still remain optimistic. I've went from full function to a very high percentage of bed ridden time since oct 2009 to present..... trying everything but to no overall avail really. Just doing my best to make symptoms bearable as possible.

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  • 8 months later...
  • 6 months later...

yeah good bump. not much meds after 2+ yrs help so far and so i vote with the worse. living a normal life is nothing the quality as what well people can do. i mean, if you HAVE to take meds, they should def help. Right? like make you able to function, work, raise a family. I work, i cannot go thru drug trial after trial to make me sicker. not my neuro's fault by far, just i wish more would be invested into research.

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I wasn't sure how to vote. I voted about the same. But it has been a roller coaster ride. I was awful, then I was given some medications, and through a lot of fighting got somewhat better, then had crashes off and on, but in between the crashes I slowly rebuilt strength and was able to eat. I was recently thinking I was getting better, and knew what things I was unable to do. and was able to avoid crashes. Hah! Went for further testing about 2 weeks ago and that very night crashed. I have gotten progressively worse since then and unsure what in the testing caused it. Worse non of the testing is giving me answers :( . Spent Monday night in ER (first time in a year) on the advice of my cardiologist's office. I had to go, to rule out a heart attack, which I guess I am glad it wasn't. Sorry for the rant, just so dang frustrated

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  • 10 months later...

I'm so sorry to read this TCP. I am getting better. Or at least doing better. It's been a very slow process for me but finally in 2009 I was able to get to the Mayo Clinic and get diagnosed. I hope that you are able to make some positive progress.

Ive been sick for at least 15 year but only diagnosed for 5. Progress has been very slow and although I'm not expecting to be cured, I have a better quality of life today than I did 5 years ago.

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Had POTS since Feb 2013. I was sort of getting better (though still couldn't walk much) but now I'm much worse the past 6 weeks with new symptoms such as BP spikes and constant shortness of breath and I have no idea why. Very disheartening. Thought I'd be at least om the road to recovery at this point I suppose.

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