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Jul 13, 2011 · Need help with Mystery Illness--Possible Sjogren's Syndrome?? in Autoimmune Diseases

I’m so sorry you’re going through all this! Please contact me at any time for support. I understand how frustrating it is to have a chronic illness and to search for an accurate diagnosis and treatment. I have Postural Orthostatic Tachycardia Syndrome which is caused by a problem with my autonomic nervous system. I was tested and treated in June at the Mayo Clinic in Rochester (my POTS team consisted of Nurse Practitioner Carter in Women’s Cardiology, Dr Osborn in Cardiovascular Electrophysiology, and Dr Fealey in Autonomic Neurology). I also have a problem retaining fluids, and I was prescribed Florinef. My autonomic problem causes my body to not retain the fluids I consume so I have to take extra sodium. The side effects of Florinef were pretty bad, so I don’t take it, and instead I consume 3-4 grams of sodium per day in addition to 2-3 liters of fluid per day. Per the Mayo Clinic team, the best way to get sodium in the diet is by pickles and V-8 juice. They’re full of sodium and it works great.

I also have episodic extreme fatigue, and it’s caused by cerebral hypoperfusion, which is caused by my POTS. My fatigue gets better when I am well hydrated, have a good amount of sodium in my body, and I wear compression garments.

My condition causes a lack of vaso-constriction, so my blood pools in my arms and legs instead of going to my head and brain, so I need the fluids and salt and compression garments to help with vaso-constriction.

I’m not sure if you have POTS, but they have a great POTS clinic at the Mayo Clinic. I’ll keep you in my prayers, and please know that you’re not alone in your quest for answers.