Gingergrrl
Senior Member
- Messages
- 16,171
I have Autoimmune POTS (and general autonomic problems) and at this point it is actually easier for me to stand and walk than it is for me to bend from a standing position to pick something up from the floor. And the item does not have to be heavy and I could be picking up a pencil from the floor.
Prior to my treatment with IVIG & Rituximab, I could not stand without wheelchair for more than 30-60 seconds vs. now I can walk around without wheelchair (in segments). Prior to treatment I could not open a water bottle or my front door or squeeze a shampoo bottle by myself vs. now I can do all of these things and have normal muscle strength.
However, even though I have random days where this is better, in general (at least 90% of the time), I cannot bend from a standing position to pick up something from the floor without triggering a full-blown POTS episode which includes tachycardia, severe shortness of breath, dizziness, and chest pressure/pain.
At the moment, I have to give my dog a bath w/a medicated shampoo every 4-7 days. I cannot bend down to pick her up and lift her into tub, but if someone does this for me, I can do her entire bath by myself (and prior to treatment there was zero chance in hell that I could give her a bath). I did it today and I was able to get the shampoo on her, scrub her for the required ten minutes, fill container with water repeatedly to wash her off, dry her off with towel, etc. Yet I cannot bend down to lift her into the tub.
This might be a bad example b/c she weighs approx 16 lbs and does not cooperate for the bath. But yesterday I had to pick up stuff from my patio (as light as a piece of paper) and it triggered full blown POTS episode where I was literally gasping for breath when I spoke. So in order to pick up things from the floor, I have three options. I either use my motorized wheelchair and pick them up from a seated position, I pick them up with my foot (if possible), or I leave them and wait until someone else can help me to pick them up. Sometimes I feel "normal" and I forget so, for example, I bend down to pick up my dog's water dish to refill with water (it's very lightweight) and I suffer for hours b/c I did this!
I used to also not be able to lift my arms over my head but this has improved. But the mechanism of picking something up from floor (or actually just the mechanism of bending down to TOUCH the floor) from a standing position, is not improving. And on some days, it feels like it is actually getting worse. This is one of the things that very quickly reminds me that my autonomic problems are still here.
Does anyone know what causes this particular autonomic problem or how to fix it (aside from just not bending down from standing)! I have other autonomic problems, too, but this one is really aggravating me at the moment b/c I've made the mistake several times in the last few days and really paid the price for it. When I used the wheelchair 24/7, I did not pay attention to this issue as much. But now that I am standing, I want to bend down to pick up a pair of shoes (or endless examples) and realize that I must do all of this from a seated position. Do others with POTS have this issue or am I unique in this way?
Prior to my treatment with IVIG & Rituximab, I could not stand without wheelchair for more than 30-60 seconds vs. now I can walk around without wheelchair (in segments). Prior to treatment I could not open a water bottle or my front door or squeeze a shampoo bottle by myself vs. now I can do all of these things and have normal muscle strength.
However, even though I have random days where this is better, in general (at least 90% of the time), I cannot bend from a standing position to pick up something from the floor without triggering a full-blown POTS episode which includes tachycardia, severe shortness of breath, dizziness, and chest pressure/pain.
At the moment, I have to give my dog a bath w/a medicated shampoo every 4-7 days. I cannot bend down to pick her up and lift her into tub, but if someone does this for me, I can do her entire bath by myself (and prior to treatment there was zero chance in hell that I could give her a bath). I did it today and I was able to get the shampoo on her, scrub her for the required ten minutes, fill container with water repeatedly to wash her off, dry her off with towel, etc. Yet I cannot bend down to lift her into the tub.
This might be a bad example b/c she weighs approx 16 lbs and does not cooperate for the bath. But yesterday I had to pick up stuff from my patio (as light as a piece of paper) and it triggered full blown POTS episode where I was literally gasping for breath when I spoke. So in order to pick up things from the floor, I have three options. I either use my motorized wheelchair and pick them up from a seated position, I pick them up with my foot (if possible), or I leave them and wait until someone else can help me to pick them up. Sometimes I feel "normal" and I forget so, for example, I bend down to pick up my dog's water dish to refill with water (it's very lightweight) and I suffer for hours b/c I did this!
I used to also not be able to lift my arms over my head but this has improved. But the mechanism of picking something up from floor (or actually just the mechanism of bending down to TOUCH the floor) from a standing position, is not improving. And on some days, it feels like it is actually getting worse. This is one of the things that very quickly reminds me that my autonomic problems are still here.
Does anyone know what causes this particular autonomic problem or how to fix it (aside from just not bending down from standing)! I have other autonomic problems, too, but this one is really aggravating me at the moment b/c I've made the mistake several times in the last few days and really paid the price for it. When I used the wheelchair 24/7, I did not pay attention to this issue as much. But now that I am standing, I want to bend down to pick up a pair of shoes (or endless examples) and realize that I must do all of this from a seated position. Do others with POTS have this issue or am I unique in this way?