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Booda

703d

other than meds is there anything else that might help me

Top reply
    • Magpie42

      703d

      I'm not sure what body system you're wanting to work on so here's a little summary of non-medication hacks. POTS- Water and salt. We should ideally be drinking 80-100ish oz of water (or any other fluids that don't contain caffeine or large amounts of sugar) daily. Salt, that's different for everyone but more than the recommended daily amount. Electrolyte drinks (gatorade and poweraid are full of sugar unless you go the "diet" route) such as pedialyte, ORS packs-banana bag, drip drop, and liquid iv will help as well. I try to have one of those a day. Also, don't stay in bed. Get up and walk around once an hour, increase activity as tolerated. Light strength training is also good. MCAS- Avoid everything. Really, you need antihistimines for this. GI issues- miralax if you're not pooping, along with more fiber. If you're pooping too much, you can try adding fiber again to bulk up your poop. Pre and probiotics, you can get them in drinks. Avoiding gluten at all costs has been a life saver for me. A lot of people see improvement with a keto or low fodmap diet as well. Dis/subluxation- again, strength training is good to build muscles around the garbage ligaments we have. Bracing is also helpful if you have one or two troublesome joints. Neuro- there's really only so much you can do w/o meds on this one. Staying rested and hydrated help mine a lot. Dealing with doctors- keep a journal of all of your symptoms, fluid, and food intake. Include tests and results so new docs don't do the same tests over again and waste your money. If anyone refuses to treat you (or believe you) require that they record that in your medical records. Ask for a "differential diagnosis" which is basically a list of things that could cause the symptoms instead of accepting "I don't know" or "lose weight" or any kind of refusal on their part to treat. Also, the Ehlers-Danlos website is an amazing tool. You can print articles about your symptoms and how they directly tie into EDS from medical journals. Read medical journals when you can. Dr. Google can get crazy sometimes so make sure your research is from somewhere other than webmd. Pubmed is great for this. Emotional- find things you CAN do and relentlessly enjoy them. Reading, painting, knitting, woodworking, jewelry making, etc. can make a world of difference when you're having a rough day. Come here to share how you're feeling so you can be supported. Journal, not only the bad things but the wins too. Sometimes a win is making it to the bathroom without needing to use a wall to keep you upright. Sometimes it's going on a hike. No matter how small, claim your victories. Let me know if there's anything in particular that I didn't mention. I've probably got a hack for it.

    • Magpie42

      703d

      One more thing about doctors. Sometimes they don't know a whole lot about us. If they don't, ask them if they have a colleague that might be more EDS aware. Just be kind about it because even though we are tired and hurt and generally feel like a trash bag all the time, they are human and on some level they do want to help. Something else, print out something that lists all of your diagnoses, meds, doc info, dietary needs and put it in your wallet. That way, if you ever do fall sick in public, your info is with you.

    • Magpie42

      703d

      I'm not sure what body system you're wanting to work on so here's a little summary of non-medication hacks. POTS- Water and salt. We should ideally be drinking 80-100ish oz of water (or any other fluids that don't contain caffeine or large amounts of sugar) daily. Salt, that's different for everyone but more than the recommended daily amount. Electrolyte drinks (gatorade and poweraid are full of sugar unless you go the "diet" route) such as pedialyte, ORS packs-banana bag, drip drop, and liquid iv will help as well. I try to have one of those a day. Also, don't stay in bed. Get up and walk around once an hour, increase activity as tolerated. Light strength training is also good. MCAS- Avoid everything. Really, you need antihistimines for this. GI issues- miralax if you're not pooping, along with more fiber. If you're pooping too much, you can try adding fiber again to bulk up your poop. Pre and probiotics, you can get them in drinks. Avoiding gluten at all costs has been a life saver for me. A lot of people see improvement with a keto or low fodmap diet as well. Dis/subluxation- again, strength training is good to build muscles around the garbage ligaments we have. Bracing is also helpful if you have one or two troublesome joints. Neuro- there's really only so much you can do w/o meds on this one. Staying rested and hydrated help mine a lot. Dealing with doctors- keep a journal of all of your symptoms, fluid, and food intake. Include tests and results so new docs don't do the same tests over again and waste your money. If anyone refuses to treat you (or believe you) require that they record that in your medical records. Ask for a "differential diagnosis" which is basically a list of things that could cause the symptoms instead of accepting "I don't know" or "lose weight" or any kind of refusal on their part to treat. Also, the Ehlers-Danlos website is an amazing tool. You can print articles about your symptoms and how they directly tie into EDS from medical journals. Read medical journals when you can. Dr. Google can get crazy sometimes so make sure your research is from somewhere other than webmd. Pubmed is great for this. Emotional- find things you CAN do and relentlessly enjoy them. Reading, painting, knitting, woodworking, jewelry making, etc. can make a world of difference when you're having a rough day. Come here to share how you're feeling so you can be supported. Journal, not only the bad things but the wins too. Sometimes a win is making it to the bathroom without needing to use a wall to keep you upright. Sometimes it's going on a hike. No matter how small, claim your victories. Let me know if there's anything in particular that I didn't mention. I've probably got a hack for it.

    • Night_Nurse

      703d

      What aspect are you wanting to treat?

☝ 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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