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Physical Therapy Anyone?


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Hello, all.

I am a newbie and have had near syncope/syncope with BP bottomming out and tachycardia (which no longer happens when the BP plunges). I wanted to share that this was the most debilitating spring and summer and early fall in my whole life. I could not pull more than one or two weeds in flower bed when I'd have to run into house to AC and lie down. I could not walk into kitchen without things going black. If I would shower (and not hot water) I would either have to lay on bed in wet towel or finish up sitting on floor. I could wash clothes but by time I got clothes out of dryer and to bedroom, I would have to lie on bed to sort and fold. When sitting I would have to keep the legs elevated because the feet were turning purple and toes were getting huge water blisters on top (new to me) that I assumed might be from fluid retention. I had/have been so nauseous that the thought of eating is nauseating (already had been on 2 stomach meds). Had been losing weight. Arms and legs so weak and shakey. I could no longer go to the grocery and bend over to look at things on the bottom shelves. Sometimes if I had to stand in line for any length of time--here would come the profuse buckets of water pouring from my head and nose, staggering gait, muttled thinking, slurred and slowed speach, holding myself up by the counter while checking out--first grabbing a fluid from the dispensers at the ends of the checkout lane--guzzling before even checking out while trying to pan where I might be able to use cart as a walker to the closest bench or place I could sit to lay head between legs. I joked that if neighbors didn't know me but would see me go out into yard, they would think I was drunk.

Cardiologist and PCP (internal medicine) had suspected POTS and referred me to cardiac specialist in dysautonomia in March but wait list was year long. By the time of my follow-up with cardiologist in Sept., he was so alarmed at how debilitated I had become (my PCP swore I looked rheumatoid although all the full gambit of tests were essentially ok, save barely any immune response), that he called this specialist imploring to get me in sooner.

Thankfully, the specialist did see me and immediately diagnosed me with orthostatic hypotension. My feet were purplish black and swollen from the 5 hour drive and 3 hour wait. I take a potent water pill as needed. He added Mestinon twice a day and as needed should I feel symptoms coming on (or if I am going to a place that triggers episodes--like church or funeral home or store) and Midodrine 3 times a day. He's already doubled the Midodrine and I am still having episodes of ups and downs but right now--not quite as low.

Here's the thing. Some of the first words he spoke to me were that 'this has been the most debilitating summer for all of my patients because of all the days over 90 degrees'. I didn't know I shouldn't have even been outside--not that I could tolerate much more than sitting in swing under shade tree. But he picked up on the purple feet and my EDS explaining how collagen affects even the veins/vessels. In another attempt to make the legs stronger to help get blood return to the heart, he ordered physical therapy in the aquaciser for building endurance and conditioning.

I have been doing the tredmill in the aquaciser. The legs will still often burn when I stand and I still feel like I cannot stand long, but sometimes I feel like I am able to get off the sofa to do something--not much but more than before. Today was supposed to be my last session as I'd made such good progress over the past 5 weeks, but today the therapist told me that because I was continuing to make such good progress (50 min), he was adding on 6 more sessions.

At first it was very scarey--aquaciser has to be heated to 93-94 degrees because of the fibro/arthritis and heat vasodilates. He was more scared than I. He planned to bring in his son's life vest to put on me in case I 'went out' on him, but he forgot it and instead strapped a safety belt to my waist and he held it all the while. After showering and changing the second session, I started to feel the palpitations, SOB and weakness, sweating. I popped a Mestinon and was drinking a cup of water just as soon as I'd found a place to sit. The receptionist hurried back to get my therapist and I kept saying 'I'm alright. I'm alright' (the standard phrase I would reassure DH, g-son, others who would witness an episode with) but I could hear my speach was slowed. He grabbed the pulse oximeter and I was tachy (I think because the shower room was small and the space heater built into the wall was really putting out heat and I'd bent over to pick towels up off the floor and to put on my shoes and socks). From that point on, I gave him my bottle of Mestinon each time I come in so that if something were to happen and I was muddle-headed, he would have those to get to me.

I was just curious if anybody else gets deconditioned to this point with this and is this going to be what I can expect every summer? Winters are hard in the sense that where I live, you wear a heavy coat (especially on these vasoconstrictors) and when you're standing with the weight of a heavy coat added, or the space is confined and really heated, I know I can expect it, but I don't really go out so much when it's cold or snowy or icey. Am I going to have to go through therapy each fall? I had been doing a stationary bike but that was making my BP go sky high. I had rode my bike (standard bike) 10 miles/day every day before having a couple of spells with that so I'd shut down the exercises til seen by the heart specialist. He tells me I can only do recumbent stationary bike.

I was glad to know that it was not just me (although my heart is with all who have to go through this).

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This past summer was worse for me than the prior 2. It was much hotter and also more humid here than most years and it made it very difficult. I definitely noticed that it was not just the heat but also the level of humidity that affected me. I could take 80 degrees when it was dry (don't get me wrong, I couldn't go outside and be active but I could go outside and enjoy being with other people for a while), but, if it was 80 degrees and humid, I could barely make it to the car for a docs appt.

That being said, I don't think we should assume the worst as this is a disorder that can change over time, and, hopefully by then your docs will have found an effective treatment plan for you.

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