Does Blood Pooling in Legs Cause Extreme Lack of Energy

[Trying]

Our daughter described "heavy leg" symptoms while very active and running over 10 years ago, and it has been a continuous symptom ever since. 

She is now mostly chairbound with no energy, and has to keep her feet up a lot. She is out of the chair max 45 minutes out of a day (walking around house, going to bathroom, bathing, fixing a lunch, and recumbent on easy for 3 minutes/5 times a day). She loaded salt/water, uses hose, midodrine (not much help, only when going upstairs does she notice slightly less leg weight).

She said she has this "wall" that if she expends energy beyond that, then she has no energy the next day or 2. She does not have post-exertional malaise, never feels flu-ish or sick feeling or  crashing after she expends too much, she just has no energy the next day or so. But she cannot even get her heart-rate up to do any exercise at this point; she is mostly just "moving" like on the bike.

(Our daughter previously had tachycardia episodes and a hospital said it was POTS based on her getting up to use restroom and huge HR rise; however, cardiologist says not POTS now because of blood pressure decline on standing).

Does anyone have this low of energy where they cannot function, and is it due to blood pooling/low blood pressure/low blood volume/orthostatic hypotension?

 

[StayAtHomeMom]

I have had short instances of you you describe. But they usually don't last long and my midodrine helps. Also resting for a bit. 

BP can change slightly with POTS or not. That being said a change in blood pressure can cause the body to compensate by elevating HR. I would get a second opinion to what her cardiologist has said. 

[WinterSown]

Dysautonomia saps your energy. I am helped with PT and eating a diet rich in electrolytes. I wish her well.

 

[MomtoGiuliana]

Severe exhaustion is a typical symptom.

Does cardiologist say it is not POTS b/c there is no longer a large rise in HR on standing?  This would define POTS--not blood pressure.  Some POTS patients also experience blood pressure changes and others do not.

Fluids and salt loading typically have helped me greatly when I am having severe symptoms.  Including saline by IV.  However this can only help so much.  It's possible to be doing all the things recommended, compression hose, etc. and still be disabled by POTS/dysautonomia.

There are many other treatment options besides midodrine--perhaps something else could be tried?

[dancer65]

Hi

Your daughter symptons sound very similar to mine, I do have POTS CFS and VVS . Four years ago I had to go the stairs on my bum! I am pleased to say I have had improvements.  Muscle fatigue  is something I still have to manage very carefully. I am on midodrine which has helped me enormously 

I never had any answers for the muscle fatigue heavy feeling from any Dr or  Consultant I saw, but after lots of research I found a lot of information on mitrochondial dysfunction, this theory just resonated with me personally. There are some interesting thoughts on this on CFS forums and some articles from Sarah Myhill.  Not saying it is your daughters problem but I introduced some of their suggestions and I have made progress . 

Just a thought that's all .

Hope your daughter finds some relief this condition can be so disheartening 

[Trying]

Thank you all, I think the drop in blood pressure is why her cardiologist said it was not POTS. 

She tried fludrocortisone for a couple weeks with no effect and got off because of upcoming visit to endo. But do you know if they only check for Addisons, because she has not lost any weight and/or had nausea or vomiting. 

Thank you for all your ideas, the mitochondria and a 2nd opinion, it is so difficult to find someone, we live in eastern NC, and her PCP and cardiologist will not refer her to Vanderbilt. Any suggestions on that?

Also, many speak about "flares" or good days and bad days, all our daughter's days are the same, no energy, in the chair mostly. Is this stable "no energy" and chairbound state normal for orthostatic hypotension?

[Pistol]

@Trying - when the blood pools it sets off the ANS trying to compensate and pump the blood back through the body, hence the tachycardia and drop in BP. This mechanism is very exhausting and causes a lot of stress to the body, that is why she is so exhausted. We use up an enormous amount of energy simply trying to be upright, even sitting is a workout. Rest makes this worse but we also are exercise intolerant. So - in addition to the usual teatments that she is already doing what has helped me in the past are leg and core exercises. I actually was referred to a physical therapist who taught me many exercises that improve blood flow and improve orthostatic intolerance, most of them can be done while lying down! If you want more info on these exercises you are welcome to pm me and I will share them. But it may be advantageous for her to see a PT - depending on your insurance they even come to the house if leaving the house is a problem for her. 

[StayAtHomeMom]

12 hours ago, Trying said:

Thank you for all your ideas, the mitochondria and a 2nd opinion, it is so difficult to find someone, we live in eastern NC, and her PCP and cardiologist will not refer her to Vanderbilt. Any suggestions on that?

Do you need a referral? Another clinic is this section of the country is Cleveland Clinic in OH. 

[yogini]

What level of compression does she use in her compression hose?  Has she tried abdominal compression?  Strengthening the leg muscles also helps with pooling.