You actually are describing to a "T" a condition called orthostatic intolerance. In simplistic terms, this is reduced blood flow to the brain and pooling of blood in the extremities (do you have blueish legs?). You feel dizzy, faint, totally fatigued, mental malaise. Balance can be a little shaky, you can feel hot then cold, etc. Many individuals with FMS (70%) or chronic fatigue syndrome (70%) have OI and don't even know it.
You can do a google search on orthostatic intolerance or neurally mediated hypotension. Dr. Grubb in Ohio, Dr. Rowe at Johns Hopkins, Dr. Robertson at Vanderbilt and Dr. Philip Lowe at the Mayo Clinic, are some of the experts in this area. OI can be caused by certain medications. Do you consume very much salt? Do some of your meds cause hypotension? Do you drink a lot of water? Do you crave salt?
You are diagnosed with a Tilt Table Test and try to have the testing center use the Johns Hopkins protocol noted in the 1995 JAMA article on OI and CFS. I can send it to you if interested. Normal blood tests are not unusual with this condition.
OI is diagnosed by Cardiologists. However, you will want to find one who is an expert in OI. There are not too many. If you can see one of the doctors above, it would help immensely.
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Originally posted by tisury:
Just thought I would update you on the extreme fatigue thing. Unfortunately, it is still an ongoing problem - worse than before. They have done all kinds of blood tests and urine test. I am not sure what all of them were but the list said TSH, CBC/DIFF, COMPR METAB PANEL, SEDIMENTATION RATE, VIT B12, Lyme Western Blot, Lyme IGM AB, Routine Urinalysis and an order for a POLYSOMNOGRAPHY 4+ W/CPAP. All tests were within normal limits. No signs of thyroid trouble, anemia, blood sugar, infections, etc, etc. The lyme tests came back negative, but from what I have learned, most, if not all of the tests for lyme are very unreliable.
I went off the anti-d's as a trial to see if that was attributing to the fatigue, even though they were supposed to be non sedating and they were started after the fatigue became a problem. They gave me a starter pack to restart the anti'd's if I wish. After one week of a reduced dose and 2 weeks off, I definetely think I need to go back on something. I am back to being depressed all the time, moody, angry, etc. - but as I expected, the fatigue is no better.
The only thing that came up in the testing was a small amount of blood in my urine. They are retesting that next week.
They have scheduled a sleep apnea test - can't get in until Oct. 31. Today they called and said they have me on a cancellation list to try to get me in sooner.
Things are getting worse. I have "spells" in which I break out in a drenching sweat, go back and forth between hot and cold, get real lightheaded, etc. After one of these "spells", an overwhelming fatigue comes over me and I usually end up sleeping (more like passing out)for at least a couple of hours. It is very frustrating. I feel horrible for days and then I will have a few decent days with a normal amount of sleep, and then I am right back to total exhaustion.
I am trying to eat better, taking a variety of vitamins and supplements, and pushing for further testing. and waiting & waiting - as is usual with this health system. I can't even consider having the surgery with Dr. B until they figure out the fatigue thing. My body is so run down. Hopefully, they figure it out soon. Hopefully, they CAN figure it out or I am sure they will label me as a hypochondriac.
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