posted
Hi everyone, I'm new here, I have a quick question. I'm a lyme patient. Been at this 7 years and going. My breathing is 100% normal, but whenever I do ANYTHING strenuous or anything that involves standing, I feel so out of breath walking. I get drenching sweaty too from Standing, light walking. This is not air hunger, it's out of breath like I just ran a mile or relay race.
I don't get it ! I can't do anything bc I have to be seated. My heart still races, but it used to goto 190, now just 145 if I stand and walk. Just standing, my heart rate is 90-100 now, use to be 145.
Just had a cardiac cath as I thought for sure, I was having heart issues, but it was clear.
I thought I had the hyperadrenergic type of POTS but my heart doesn't race like it use to except when I exert myself, but now a days, my anxiety is so much beter and I never passed out from standing up. At the same time, my blood pressure never shot up either.
Not sure if this is still POTS or what form of autonomic dysfunction I even have. My equilibrium is so much better. I use to have balance issues and a sensation of feeling like I was swaying all the time, not anymore though.
Posts: 3 | From Cupertino, CA | Registered: Jun 2017
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posted
I forgot to mention, I feel like Im carrying 400 lbs when I stand up, and I'm only 135 lbs. Like a feeling of being weighed down
Posts: 3 | From Cupertino, CA | Registered: Jun 2017
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How bad is yours Joe ? Can u describe an avg. day. I just feel so alone like no one else can possibly have this. I can't function standing up. I literally, have to stay seated all day. I feel like I have no life.
I do feel ehausted just trying to walk around a dollar store, no way can I do the mall.
Thanks so much
Posts: 3 | From Cupertino, CA | Registered: Jun 2017
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posted
I have been reading that elevating the head of your bed helps POTS.
Drs. say to raise it to like six inches..
I have raised mine about four inches, and I no longer have POTS symptoms, although I will say I think I had a mild case.
Oh and was able to wean off of bioidentical hydrocortisone... (very small amount seemed to help, but no medicine is better right?)
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
You clearly need the help of a doctor that understands POTS, or neurally mediated hypotension, which is a dysautonomia. Some LLMD's will rx the needed meds for you, usually Florinef, and sometimes Midodrine as well.
Otherwise, you need a cardiologist who understands and can treat these conditions.
I suggest contacting your local Lyme Support Group (see the links on the upper left on Lymenet) to see who would be able to help you.
You can also post in "Seeking a Doctor" for a Lyme Friendly cardiologist in your area who can treat this (specify in the post where you are able to travel to, if necessary).
I hope that either you have a Lyme Literate MD, or are in the process of finding one. You can do the same as above for that. I presume that you have one from what you said, but you also need the best one available to make the best progress.
There is no reason to suffer with this without being treated for it!! If you haven't had it for too long, it can go away with good treatment. However, if you've had it a long time, you may need the treatment for life (for the POTS/dysautonomia).
Posts: 3771 | From around | Registered: Mar 2008
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posted
Mine is pretty bad,some days worse than others
I can walk the distance through a mall but I will feel sick as a dog by the end.
I believe a messed up GI tract is a big source of dysautonaumia,when I am constipated it is much worse and my blood pressure is lower.
My legs also feel heavy and also restless at night.
I can't tolerate heat lift my arm higher than my heart or bend over much.
Its truly a struggle to get anything done.
Not to much docs can do,few medications you can try but didn't help me.
Salt and fluids help me the most '
Caffiene helps some and hurts some,it helps me.
Hot baths will do me for a good 24 hours.
Im confident its all GI related,the better my gut is the less dysautonaumia symptoms I have and better BP.
Posts: 227 | From fairhaven ma | Registered: May 2015
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