imapumpkin Posted September 17, 2014 Report Share Posted September 17, 2014 Ever since my heart valve repair surgery in January 2013, I have experienced a trend of improvement in my POTS. I have felt that I am constantly getting a little better bit by bit over time with occasional setbacks exacerbating my fatigue. Usually I start to feel better but then overexert myself with an overly-active weekend and am knocked back on my butt and am usually set back for several weeks after the fact, but then I start to improve again.Suddenly I'm noticing a downward trend. My blood pressure is pretty good. My tachycardia is well controlled. I am eating much better and have eliminated high-sugar foods and anything with yeast in it. I go for walks and try to get to the gym when I can to use the recumbent bike to strengthen my lower legs. The summer is over and the heat and humidity are gone. Under normal circumstances, my energy level would be leaps and bounds better. However, for no reason that I can figure out because nothing else has changed, I feel even more weak and lethargic.I feel so frustrated because I'm doing everything "right" but things are getting worse and I still wake up every day feeling like I've been hit by a truck, exhausted AND achey. I never really used to get myalgia, it was just debilitating fatigue. I have no idea how to cope with this because nothing I am doing is making any difference in my feeling better. Anyone have an insight into what could be going on given that nothing has changed in the past several months? I feel really defeated. Quote Link to comment Share on other sites More sharing options...
Raisin Posted September 17, 2014 Report Share Posted September 17, 2014 No, but maybe some new bloodwork is in order? If it seems out of the ordinary for you, then maybe a good once over again would be helpful? Hope you feel better! Quote Link to comment Share on other sites More sharing options...
angelloz Posted September 17, 2014 Report Share Posted September 17, 2014 Your topic has caught my eye because I too have had increased body pain after a relatively good summer. A few other set backs as well including stomach issues. I wondered if the weather is triggering some sort of flare?? I am going to see my GP tomorrow. Will let you know if I figure anything out. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted September 17, 2014 Report Share Posted September 17, 2014 I hope you can consult with your doctor. POTS can certainly involve periods of flare up and remission, for many of us, with little clue as to what the triggers are. I hope you feel better soon. I know how frustrating flare ups can be. Quote Link to comment Share on other sites More sharing options...
Becia Posted September 17, 2014 Report Share Posted September 17, 2014 For me, it feels like I go through time of my medication and therapies working, and then all of the sudden, they stop. Takes a few weeks of building back up, and then I'm good for a bit again. Quote Link to comment Share on other sites More sharing options...
looneymom Posted September 17, 2014 Report Share Posted September 17, 2014 Rechecking D, iron, B vitamins might be in order for blood work. Hopefully you have not been exposed to Mono. Adults can still get it. I had it when I was 28 and I was teaching in a room of coughing kids. The University of Maryland has done a study and found out that this virus could be caught in this type of situation. My oldest son was in this situation a few years ago and the same thing happened to him. Mono is hard on the older teenagers and adults. You are tired even after a night's sleep. Quote Link to comment Share on other sites More sharing options...
BeforeTheMorning Posted September 17, 2014 Report Share Posted September 17, 2014 Sorry you're feeling so bad. I know what you mean, it is SO frustrating to be doing all the right stuff and still be feeling awful. I'm pretty much going through that myself right now, and my thoughts are with you. I hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
imapumpkin Posted September 17, 2014 Author Report Share Posted September 17, 2014 I have an appointment with my integrative medicine doctor is two week thank goodness; it couldn't come soon enough! my GP doesn't really know what to check for and when I come to him with worsening fatigue (that is, worse than my baseline POTS fatigue) he just checks my iron and tells me to exercise. My integrative medicine doctor will check everything he can, although I'm sure my b12 is not low because I take injections every few days.angelloz- i also had a relatively easy summer in terms of symptoms flaring from the heat. normally once fall rolls around my body is SUPER happy and rewards me with increased energy. it's bumming me out on many levels that for some reason it hasn't yet, especially since fall is my favorite season. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted September 18, 2014 Report Share Posted September 18, 2014 Just a thought, but have you checked with your cardiologist who did your valve repair? As you know problems with it can also cause the fatigue you are describing. I hope you figure it out. It is always disheartening when things improve and then have a set back. It does though give us a chance to see that we were actually feeling better for a bit. Quote Link to comment Share on other sites More sharing options...
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