Hyper POTS, AI and exercise

[p8d]

Hi.  I'm trying to balance my need for exercise with POTS with my need to not overdo exercise due to autoimmune disease.  I know we are all different and I typically need two days off after aerobic exercise (I do strength training and tai chi under PT guidance) but just wonder how anyone else manages this paradox?  Thanks.

[WinterSown]

I am hugely worried about deconditioning and so I exercise frequently. I currently do pelvic floor hyper-core twice a week at PT and I do my at-home exercises practically everyday, and I walk everyday.  Last year I did Vestibular PT at the same center. Initially, I was wiped out--I would go home and crash on the bed and sleep four or five hours. I think on PT days (daze) we had takeout almost every night for dinner and we also had a service come and help with the housecleaning too. It was exhausting. However, each week I got a little stronger from the endurance training and I can do a little bit more work. I have learned to double quick-to-prepare recipes and put a tray in the freezer, this way we have less take-out which is expensive and usually not as healthy as home-cooked. I do take a nap after dinner and now walk the dogs late, close to midnight, when I am back awake and up. Splitting the exercise by doing some during the daytime, like my balance board and gel rings, and then doing the evening walks much later in the day have helped me get over the exhaustion. I do still need a nap in the middle of it all but it's less than an hour., I no longer feel completely drained like I did last year. I can do a little more activity and feel a little less exhausted. It does get better, you will get stronger and your activity hours increase but it doesn't happen overnight. I wish you well.

T

[RecumbentRider]

I'm in a very bad place right now, sats dropping drop down to 78 when walking, bp 75/55 HR up to 150 and higher before the home health has a panic and makes me sit down.

Not going to the stupid hospital again - merry-go-round dilutes met and temporary fix, won't qualify for acute rehab because I didn't hit my head this time LOL I have 4 TBI's. They want me to go to a nursing home. Been there done that. Lie there an pool all day..THIS time URGENT bladder resorted to diapers 4 weeks the blood pressure swings are like pulling 5 gs every time I get to the port a potty 2 feet from the bed. Can you imagine the staffing ratio there? Wait.. piss myself, contribute to the urine smell then get up for the hour PT, then whap PASS out, call a code, ambulance and bruised sternum - back to the E.R. where they know NOTHING about POTS, (but they say they do) as they continue to take my sats and bp while I am laying down, and give my meds on their schedule which (I know they have too) but it's too long for my body to wait. Normal people saline is too diluted for me. Enter salt pills, salty dog diet me. Can't digest food well, so that's going downhill, - If I can get to my very supine recumbent trike, I can pedal that thing pretty hard and for a long time. This builds my strength. I use ice packs and drink ice burg water. Ted hose, Tight as ****, Lorna Jay pants and when I walk a tummy belt. It's now been a month and I have been able to get from laying to sitting in the couch chair. The scary part is that my bp and oxygen are NOT improving. This is going to be a long hall I guess. I am going to have to tighten my stomach and legs my a brick  **** house. 

[SarahA33]

Hi, p8d,

Balancing an exercise regimen is hard for me also. I used to have a schedule that I tried to follow, and I ditched that because I couldn't keep up with it on my very bad days. My doctor said to exercise 3-4 days a week, so I just do as much as I can on the days I feel my best. Some weeks I only get 2 days in but it's better than nothing.  There is a definition for this that's used in the CFS community, post exceptional malaise which is the inability to repeat previous exertion due to worsening of symptoms both physical and cognitive.  Some of My POTS symptoms have most definitely improved with exercise except for fatigue, which I suppose could be more related to my autoimmune issues, too. 

Hi, recumbent biker, 

Welcome to the forum! So sorry to hear about the obstacles and challenges your facing. I understand the ER merry go round also, many of us here do. Have you seen a Dysautonomia specialist? Maybe you'd benefit from a center like those at Cleveland clinic, mayo or Vanderbilt. They have all types of specialists under one roof and offer in depth full autonomic testing. Hope things improve for you. Sarah 

[Debbie Rose]

Recumbent !! Love those wheels ! but how to you see where you are going??

I have a "peddler-just peddles on a stand-which I use in the reclined chair position (with peddler on the floor) and I can also place it on the table for arm exercises. The temperature outside is too hot and humid plus we have hills here that are in the way, on the return to the house-when I am worn out-so biking is not good for me. What are Lorna Jay's?? I wear compression knee highs and leggings as well as a top-full body compression-feel (and look) like an overstuffed sausage!! LOL but no one sees me.

How are your sats at rest? Laying,sitting,standing?? Do they change with BP and HR?? or only with activity? What does your MD say about your sats?? another underlying condition? Just curious, in trying to connect the dots

Take your time and start slow and briefly at first-accumulate time by spreading it out throughout the day if it helps with your breathing. At first I could only do 10 minutes every other day and it took me 8 months to get to 40 minutes 5 out of 7 days-on good days. On bad days I do as much as I can but don't push it-if I am dumb and push, I regret it the next day-and I am stubborn so I have had many a dumb day LOL!!

I hope things get easier for you soon

Debbie