POTS and Fludrocortisone - please help

Low BP, gut problems and joint problems! Are you Hypermobile( very flexible)? Has the possibility of Ehlers Danlos Symdrome ever been mentioned to you?

Hi laura

Welcome to my world, i was also diagnosed only to be left with it, got most of my help from the internet and sites like this, i was also sent to the chronic fatigue clinic by my gp, and they have helped me with some of it.

Mine is controlled mainly by lifestyle changes, your symptoms are severe at the moment, but they will settle, you can do things to help it, obviously with the CFS you need to rest, consider also taking Sertraline Anti Depressant, for the migraines if you have them! it will also help with the POTS, i am on a very low dose, if i try to stop it, my symptoms come back very bad, so end up back on it, cant say it does much for the depression though.............ha, i have had mine a long time so i needed help with that side of things, you could use it as a temp measure, with your symptoms being severe.

If you find your weeing like a racehourse then you are losing blood volume, this is the water content from our blood, this will also affect blood pressure, and salts, so, you need to drink at least 3 litres of water per day to replace the water loss, but, you also need to take in salt as well, as the salt will help with retaining the fluid we drink, instead of weeing it all out, so our electrolytes also then go out of balance if we dont replace the salts, if you wake during the night feeling bad, drink a glass of water again, when you have your meals be liberal with the salt, eat some ready meals, they are loaded with it.  If your gut is affected with slow dijestion, you eat little and often, high protein, low unrefined carbs, avoid sugar at all costs until your better, and if you eat too much sugar later on, then you risk whipping your symptoms back up again, also avoid all caffeine drinks, and alchohol, stick to plain water.  Try 1 scrambled egg for brekkie with salt on, then something small for lunch like a chicken leg, nothing processed, eat small handful of plain nuts inbetween if this makes you feel worse stop it,  have a normal night meal, put salt on, drink water before and during your main meal, this will help your food to go through better, it will avoid gas build up, and bloat causing constipation and later on IBS symptoms, lie flat immediately after eating a large meal for up to at least 30 mins after, to help food go through quicker, if you find that even tiny amounts of food is 

making your symptoms worse, then starve yourself for one day and start again.

Avoid.............hot baths and showers, sugar, extreme exertion when better, too much water, and too little salt, any meds that make you feel worse, any food that makes you feel worse, can't do anything for period time as hormones are another trigger, standing for long periods, stress, smoking, and viruses, as all these will be triggers for your dysautonomia.

When you find water stops making you feel better, that is because your body has righted itself, so you don't need to do it anymore, and when your symptoms happen again, you start the whole process off again.

Our problem is, we have a malfunctioning Autonomic nervous system, affecting both the sympathetic and parasympathetic nervous systems in our spines, the sympathetic is responsible for our stress response, which is the fight, or, flight phase, so we have stress symptoms through the roof but don't know why! it is like severe PMT,  and that's also when are joints are  affected,  it is a result of messages going wrong from the brain to the sympathetic nervous system, and then after we have come down from the stress, we go into the parasympathetic phase which is known as the rest and dijest response, so everything  works slow, again due to  wrong messages from the brain to the parasymptathetic nervous system, sympathetic works too fast, and the parasympathetic works too slow in us, and what we have to do is, figure out which phase were in, then, try and put it right, harder than it sounds, but it will get better even on its own, and in some cases can go for long periods like mine has done, but always comes back,  but we can help it in the meantime with lifestyle changes, there is also an over the counter remedy called Bachs Rescue Remedy available from chemists, and it is apparently good for the stress symptoms, i also found Homeopathy remedies helped as well, but like everything it works for so long, then it stops.

Hope this helps.   

I don't have POTS but I have suffered from severe salt wasting and autonomic dysfunction for 25 years. Florinef gave me my life back. I could not stand up or walk. Even passed out lying down

I have been on Florinef without a break since diagnosed and I would not give it up. I also drink low cal Gatorade every day for sodium replacement. Discuss with your doctor. For me keeping my fluid volume is key to managing my symptoms and that means electrolytes.

Good luck. It is hard but you can get your life back!