Struggling with Chronic Illness and Lack of Medical Care

Also dysautonomia international website is very helpful

Shower chair (really took a hit to my ego when I had to buy one at 26 years old but a lifesaver), compression, I do Gatorade (can’t do fake sugars so I’m thinking about adding water to dilute them a bit), always keep potato chips with me, also stop at McDonald’s for fries when I need salt in a pinch, a bit caffeine does wonders for me but can do more harm for some people, I don’t drink often but if I do, I try to drink 2x the water to whatever alcohol (so 8 oz of alcohol means 16 oz of water). Ibuprofen doesn’t do anything for me, so I take Tylenol which helps with my aches and pains (likely fibromyalgia). In terms of recovering, look up the CHOP protocol and start that. It’s free to print out online. Alter it to fit what your body can handle. If you can afford reconditioning PT, that saved my quality of life. I’m considering asking my docs for a handicap placard because that additional walk being parked far away is killing me. As for water, it was recommended by a doctor at the John’s Hopkins POTS clinic that I drink 80-100 oz of non caffeinated/alcoholic beverages every day. So Gatorade, water, juice all count. Apple juice also helps me a lot, but I’m hypoglycemic so it might be more related to that than POTS.

Compression socks are the only way I exist. I’ve invested in more expensive ones from Bombas and Comrad. As well as leggings. Some days I need compression all the way up my legs. I have a couple pairs of leggings that are pretty tight. I’ll share with you where I got them if you wish. Water & I prefer Gatorade for bad days, but anything high in electrolytes (magnesium, potassium, sodium). You’ll can also take them as supplements, (I used to be deficient in potassium) but my levels are fine now and I don’t seem to notice a difference when I take supplements. The exercise that is prescribed by POTS specialists is recumbent bike/rowing machine 5 min a day max! For a week. Then each week add 3 min as you can handle it. Until you are at 45 min. Then start transitioning to upright exercise like walking in 3 min increments. i.e. first week will be 3 min walking 42 on recumbent bike. Second week will be 6 min walking 39 min on bike. etc. If this is confusing I will try to find the document my dr. gave me.

Thank you!! I live in compression stockings now and they definitely help! I need to get better with keeping liquid IV on me because it sounds like that’s key! It’s interesting you guys suggest exercise because I was trying to figure that out as well - too many questions for one post LOL.

My cardiologist suggested increasing salt intake, drinking at least 100oz of water a day, exercise, and compression socks

propel/liquid iv, salt tablets, compression socks, and tbh excersize (i do dancing)