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Ijinglewheniwalk

652d

I’ve never felt more sick in my life than I do rn. I am so fatigued, so out of it, my head is killing me, and my body feels like a bus ran me over. I don’t understand what I’m doing wrong with my POTS. I’m doing everhtning the doctor told me but it feels I never can get through it

Top reply
    • 55isMe

      647d

      @Loblolly agreed. Mine, 30 years ago was 20% pots symptoms and 50% CFS abd 30% fibro. And 3 years torally disabled. Then 20 years ago, i had chemo for breast cancer and it really sucked but it was the best thing for my overall health. The first dose wiped out my Thrombocytopenia (of the priir 10 years). 4 doses wiped out my migraines (until oncologist talked me into a Lupron shot. Then 100% migraines again). Anyway, 3 years ago, 100% POTS. Now fibro ramping up but pots morphong enough i can at least clean up a little, take a shower, cook (air fryer!!!!) Each day is a new adventure. May tomorrow be the start of a better adventure for all of us.

    • Magpie42

      647d

      I'm going to ask questions, but nothing I say implies you aren't doing enough. How much water are you consuming a day? You can get fluids from watery fruits like watermelon and cucumber as well if plain water is too much. Here's a helpful link, https://www.healthline.com/nutrition/19-hydrating-foods Are you balancing fluids with salt and other electrolytes? We need more sodium to help increase our blood volume. Oral rehydrating solutions, drip drop, liquid iv, banana bag are popular ones. Also, salt all your food. Movement is key to keep your blood circulating. I reconditioned by doing chores. I was only going from the bed to the couch at my worst. My doc told me I had to move. So, I started by loading the dishwasher - slowly. Then I would rest. I gradually added in things as I could. My aunt would set a timer for once an hour and would walk around her house, which worked for her. You can even find in bed exercises on youtube if gravity is really giving you a hard time. Don't feel bad if your recovery/mgmt looks different. Just keep those 3 things in mind. Fluids, electrolytes/salt, and movement. Also, if it is any consolation, the astronauts that spend time on the space station come home with POTS. So, don't think of having it as a failure, some of our bravest people end up with it. Sending so much love.

    • Bellea606

      647d

      This is exactly where I am today. I didn't even do anything different it's just a bad pots day and I cannot.

    • Loblolly

      647d

      No offense to doctors, but our condition is not that well known, and honestly many of them don’t even know what it is. Try taking magnesium pills and probiotics if you aren’t already. Supplements can help, but finding the right amount for you is a challenge. Throughout your life, your POTS symptoms will fluctuate, for example I was bed bound for 6 months at 18 and semi thriving at 20.

      • 55isMe

        647d

        @Loblolly agreed. Mine, 30 years ago was 20% pots symptoms and 50% CFS abd 30% fibro. And 3 years torally disabled. Then 20 years ago, i had chemo for breast cancer and it really sucked but it was the best thing for my overall health. The first dose wiped out my Thrombocytopenia (of the priir 10 years). 4 doses wiped out my migraines (until oncologist talked me into a Lupron shot. Then 100% migraines again). Anyway, 3 years ago, 100% POTS. Now fibro ramping up but pots morphong enough i can at least clean up a little, take a shower, cook (air fryer!!!!) Each day is a new adventure. May tomorrow be the start of a better adventure for all of us.

    • 55isMe

      649d

      It doesnt take much. I overdid laundry 3 days ago. Sciatica the next morning and still. Super sore almost everywhere thos morning. My imitrex blocks most pain, but its evening and all my back muscles are trying to outdo my sciatica. Such fun. I learned my lesson. I will do less.

    • gurspaceport

      652d

      I would talk to your doctor about it. There are medicines that can supplement what you're already doing at home. My doctor told me that POTS often gets worse in the summer cause you're sweating at an amount you don't in the colder months so you're losing more water

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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