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juiceambassador

773d

hello! so i have cfs along with pots, eds, gastroparesis etc. basically, i dont absorb nutrients so i never have energy on top of having cfs. doctors keep saying to exercise to minimize other conditions, but i only get out of bed maybe 4 times a day. even with meds im exhausted and don't know what to do. any advice?

Top reply
    • Ashley_W

      771d

      Home IV’s helped a little when I was able to do them twice a week, but insurance didn’t cover like they claimed and I couldn’t get my body to the office to do it. Plus my veins started blowing. I’ve started using a hydrojug to make sure I get enough fluids along with sodium chloride tablets my doctor prescribed, “cure” brand electrolyte packets (allergic to sugar so can’t do liquid IV brand), coconut water, as well as “Elemental Diet” shakes to help get some nutrition in me. It reminds me of what they put in feeding tubes but it seems to get some well-rounded liquid calories down the hatch without agitating anything or just sitting inside you like a lump.

    • loveshespoke

      770d

      I can only speak for what has worked for me, but I've found a few tricks that help marginally. First, a B-12 shot every 6 weeks or so. Next, hydration, but it can be tricky. I personally try to drink at least 64 oz of water a day, plus a Gatorade for electrolytes, often a coconut water, and my caffeine, which is essential. As far as caffeine goes, I try to stick to more natural energy drinks that use green coffee extract and/or tea (I find it's cleaner than coffee and lasts longer without messing up my digestion) as their source. That combo has helped me a ton. Also, if you're open to cannabis, using a sativa gummy can significantly boost your energy for at least a few hours at a time, you'd just have to like the high. And lastly, I can't exercise either, but I see a chiropractor to help keep things in alignment so my body functions better, and it helps me a ton with the fatigue. Hope this helps!

    • Ashley_W

      771d

      Home IV’s helped a little when I was able to do them twice a week, but insurance didn’t cover like they claimed and I couldn’t get my body to the office to do it. Plus my veins started blowing. I’ve started using a hydrojug to make sure I get enough fluids along with sodium chloride tablets my doctor prescribed, “cure” brand electrolyte packets (allergic to sugar so can’t do liquid IV brand), coconut water, as well as “Elemental Diet” shakes to help get some nutrition in me. It reminds me of what they put in feeding tubes but it seems to get some well-rounded liquid calories down the hatch without agitating anything or just sitting inside you like a lump.

    • Mermaid4Real

      773d

      In regards to exercise, I started recumbent bicycle at 5 minutes a day. My doctor wants me to work up to 45 minutes a day, 5 days a week. I was able to do it for a while and it took me 2 years to get up to 45 minutes but my fatigue became severe 2 months ago and I completely stopped. I had significant PEM after each exercise session but it would lessen after a few hours. Honestly I wonder if those two years of self-motivated GET caused my severe fatigue flare up. It did help me be able to be upright more but made fatigue worse

    • Mermaid4Real

      773d

      I have all of those conditions as well and I can relate. I am out of bed three or four hours a day non-consecutively. Honestly I feel the lack of nutrition really contributes to the exhaustion. I hope someone gives us some good advice . Do you drink a lot of water and consume a lot of salt? I consume 10,000 mg of salt through my liquid IV / sea salt water concoction daily. I've recently started taking vitassium salt pills and they've made a significant difference with being able to be upright. My pots causes a pressure headache whenever I'm standing up but the more salt I intake, the last my head hurts. I drink about 120 - 150 oz of liquids daily.

      • juiceambassador

        773d

        @Mermaid4Real im trying to get approved for IV saline treatment + maybe TPN diet (iv only) to help with the malabsorption. i struggle to drink water due to sensory issues so im basically relying on my insurance company approving me for these treatments

        • Mermaid4Real

          773d

          @juiceambassador I hope you get approved. I'm trying to get at home IV therapy as well. Last I heard about it 2 years ago, you need to have a central line to have at home IVs. I don't want a semi-permanent line. But maybe the rules have changed. I'm waiting for my doctor to get back to me. It would be fantastic if Medicare would allow peripheral IVs at home 🤞 Can you drink thicker liquids like body armor or organic coconut water?

    • princessbun

      773d

      However you can definitely try meyers cocktail. (IV multivitamin) it has nearly 100% absorption rate due to it being directly in the blood. This can help to an extent considering you have malabsorption.

      • juiceambassador

        773d

        @princessbun thank you!! i'll look into that ❤️

    • princessbun

      773d

      Telling someone with no energy to expend energy to get better is incredibly counterintuitive. Graded exercise therapy (GET) has already been discredited. So do doctors have any other advice for you? Mine sure don't... Wish I had better advice. I'm just in the same boat..

☝ 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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