lthomas521

Warning, warning, warning! Exercise can make you sicker! It all depends on why you are sick to begin with. If you are already exceeding your body's performance capacity, then trying to increase your activity level could cause serious problems. A Canadian Society for people with chronic fatigue syndrome (or myalgic encephalomyelitis) has an interesting article on this topic (http://www.mefmaction.net/default.aspx?Page=selectedarticlesmedical) Several doctors had told me that I just needed to exercise. They wouldn't listen when I tried to explain that I couldn't tolerate exercise. My theory was that I had some sort of endocrine or metabolic problem. Their theory was that I just wanted attention. Fortunately, I found out through trial and error that enormous doses of the vitamins that they give to people with mitochondrial disorders transform me from a chronically lazy hypochondriac into a normal person. I suddenly was able to resume a normal lifestyle, which involved long walks and running up and down stairs. The moral of the story is that you cannot exercise your way out of a metabolic error. If exercise makes you feel worse, not better, that in itself is an important clue as to what's wrong with you. Don't make yourself sicker by trying to prove how tough you are.

Ordinary birth control pills have long been prescribed for women with heavy or painful periods. Apparently, the benefit comes from preventing ovulation, so even the low-dose pills work. There is absolutely no reason on earth why a woman has to have a bleed every 28 days. That's an arbitrary figure that was chosen in the 1950s. By someone who never ever had a period, because he was male. If you are having trouble with hormonal side effects, you may want to consider using a pill with a lower hormone dose. Probably the best thing would be NuvaRing, which delivers the lowest dose of any contraceptive that I know of. It's a ring that you wear like a tampon for 21 days. Then you throw it away and have a 7-day ring-free period and then put in a fresh ring. Of course, you could put in a fresh ring after the 21 days and skip the period. I don't know what the optimal regimen would be. Lupron works by suppressing the pituitary's secretion of follicle-stimulating hormone and luteinizing hormone. Without FSH and LH, your ovaries will not secrete estrogen etc. Lupron causes an initial flare of increased FSH and LH secretion until the pituitary is downregulated. Sometimes physicians give a little bit of estrogen to women who are taking Lupron. The "add-back" estrogen could help prevent the menopause-like side effects resulting from the decreased estrogen production.

I've started about six new interventions at once: Licorice tea, elevating the head of the bed with those things from Bed Bath and Beyond, taking a B-50 twice a day plus an additional 400 micrograms of folate twice a day, Feo-Sol iron supplement once a day, and midodrine. My vital signs are stabilizing. One morning, my pulse went from 63 to 78 bpm when I stood up (without my waist-high pressure stockings). Normally, it would go from 83 to 125 bpm. As soon as my vital signs improved, I started being able to do things. I've gone on sort of a binge of organization. My husband had gone out on Saturday and came home to find that I'd cleaned out and reorganized the kitchen cabinets and put in new shelf paper. I'm starting on cleaning out the basement. I haven't had a migraine in weeks. Normally, a migraine would be my "punishment" for trying to stand on my feet for any length of time. They don't hurt me all that much, but I really can't afford the vomiting if I'm already hypovolemic. Quite reasonably, my husband asked my why I don't use my newfound energy to do something fun instead. I told him that I'm afraid that this phase won't last. Maybe my body will compensate for the midodrine by decreasing my blood volume still further, and I'll end up crashing again. But at least I'll have things organized by then. If you can only spend a few minutes on your feet, you can't get anything done if you have to spend those minutes wandering around the house looking for the stuff you need. So why am I feeling better? I hope that it's not just the midodrine, although I think the midodrine is helping. Maybe it's the extra thiamine. I already take 500 mg of thiamine in the mornings. When I stopped that to indulge the curiosity of my internist, I got serious brain fog within 2 days. I suspect that it might be the folate that's helping so much. I've never taken this much folate before. Both thiamine and folate, as well as vitamin B6, are used to treat mitochondrial disorders, which could explain my predicament. The other possibility is that my low blood volume is the result of some metabolic disorder related to B vitamins. I really wish I could find a physician who could solve this riddle. In the meantime, I suggest that everyone who has fatigue and/or blood volume problems consider taking extra B vitamins and folate. Most of us urinate way too much, so we are probably washing the water-soluble vitamins out of our system. I don't know of any contraindication to taking extra thiamine and folate, but definitely ask your doctor and your pharmacist before you start it. Some people might have problems with vitamin B6 causing vasodilation, but that has obviously not been a problem for me. If you are diabetic, I strongly recommend that you take extra thiamine, preferably in a lipid-soluble form (see www.thiasure.com). I've read numerous articles in the peer-reviewed medical literature about extra thiamine reversing diabetic neuropathy and preventing eye and kidney damage in diabetic rats and humans. Whenever someone tells me about someone in the hospital for complications related to diabetes, I print out these articles for the person's doctor. So far, no one has gotten any thiamine as a result of my efforts. I feel like I'm casting pearls before swine, but sooner or later, I'll prevail and prevent someone from going blind or having kidney failure. Be careful about taking iron supplements. There is a genetic disorder called hemochromatosis (iron overload disease) that can cause anemia. Make sure that your iron stores really are low before you take iron supplements! And keep them out of the reach of children. Iron supplements are a major cause of fatal poisoning in children. Also, if you have a mitochondrial disease, the iron could cause more oxidative stress than you can handle.

Why is it that when someone tells us that we look good (presumably despite our illness), it makes many of us unhappy? Is this reaction a side effect of having been told too many times that our problems are imaginary? Or maybe some people detect an underlying suggestion that we are not really as sick as we let on. Personally, I've not had a problem with this issue, because when I was desperately sick, people would volunteer the information that I looked awful. When I started feeling better, people would say things like, "Gee, your face isn't so gray anymore."

No. Just a technical writer with access to a medical library.

Here's a description of a man with very low blood volume but hypertension: http://www.pediatricnetwork.org/medical/CF...ry/oi-intro.htm

I suspect that there are several possible mechanisms. Unfortunately, the diagnosis of our type of anemia is generally missed. It's hard to get a physician to believe that you are anemic if your hematocrit and hemoglobin are normal. They dismiss rapid pulse as evidence of an anxiety disorder or at best as "just" an autonomic nervous system problem. Since the hypovolemia goes unrecognized, no one collects enough cases to do any real investigation. A few months ago, the POTSplace newsletter ran something from Emma, who explained that she was getting supplemental albumin, and that it was doing her a great deal of good. I suspect that for many of us, POTS is related to a problem with albumin homeostasis. Emma said that for some people with POTS, the body just doesn't make enough albumin, or maybe it consumes it too rapidly. My theory is that the kidney's "critmeter" then adjusts the red blood cell mass to match the abnormally low plasma protein. Then, the adrenals work overtime to try to compensate. The result would be hyperadrenergic POTS. An abnormality in albumin homeostasis could result from impaired production (e.g., from liver failure) or from increased consumption. My personal pet theory is that an impairment of gluconeogenesis (production of blood glucose from other forms of stored energy) could predispose a person to hypoglycemia, which then causes the body to burn plasma proteins for energy. Different mechanisms would be responsible for other types of POTS. For example, someone may have normal blood volume but suffer from pooling of blood in the lower part of the body. This sort of thing would be more likely in a patient who has a primary neurologic disorder or who has had neurologic damage as a result of diabetes. The end result, thoracic hypovolemia, would be the same. Anemia can result from a dietary deficiency, so I suppose that anyone with anemia should have their folate and vitamin B12 levels evaluated. If you have pernicious anemia, you won't be able to absorb B12 from an ordinary vitamin pill. You may need injections or an intranasal product. In general, it probably wouldn't hurt to take more than normal doses of B vitamins, but tell your doctor if you do. Also, there is a hereditary form of thiamine-responsive anemia--i.e., it gets better if you take abnormally high doses of thiamine. It's due to an abnormal thiamine transporter and can cause deafness and diabetes. Your thiamine levels could be completely normal. People should ask their doctor before taking an iron supplement. It's conceivable that your problem could be due to hereditary iron overload disease (hemochromatosis), especially if you are a man or a postmenopausal woman, and especially if you are of Irish, Welsh, or Scottish descent. Iron is a highly reactive element and causes all sorts of damage in the body if there is too much of it. Extra iron might be particularly bad if you have a mitochondrial problem, which I suspect many of us might have. The extra oxidative load will cause further damage to the already malfunctioning mitochondria. If you do take an iron supplement, please make sure to keep it out of the reach of children. Iron supplements are a major cause of fatal poisoning in children. As for whether you can have a systolic pressure of over 120 mm Hg if you are hypovolemic--yes, you can.

Florinef is primarily a mineralocorticoid, as opposed to cortisone, which is primarily a glucocorticoid. However, the prescribing information for Florinef does mention that all corticosteroids increase calcium excretion and it lists osteoporosis under adverse events. I looked up bone density and fludrocortisone in MEDLINE and found nothing except two articles about people with congenital adrenal hyperplasia, which may be irrelevant. I have seen no data about bone mass in people who have received long-term treatment with Florinef for POTS, or about people who have used salt loading to manage POTS. Increased fluid and salt intake are typically the first line of attack. However, if that were sufficient, none of us would still be sick. Extra saltwater doesn't stay in your bloodstream very long unless you have kidney problems. So why are so many of us anemic?

Hi fellow POTSers Many of us (and many of the people with chronic fatigue syndrome) have low blood volume--a combination of low red cell mass and low plasma volume. If the reductions are in proportion to each other, the result is a normal hematocrit and normal hemoglobin readings. The blood itself looks normal, there's just not enough of it. So we can have pretty serious anemia even though the tests that are usually used to detect anemia give falsely normal results. It's no wonder that some of us are tired all of the time and have poor exercise tolerance and a racing heartbeat. This poses some interesting questions: 1. What can cause this problem? 2. What (besides fludrocortisone (Florinef] or recombinant erythropoietin [Epogen or Procrit]) can be done to correct it? I'm worried that Florinef can have bad long-term effects on bone mass, and recombinant erythroipoietin also has some drawbacks. 3. Why do so few doctors understand that you can be anemic even if your hematocrit and hemoglobin level are normal? I have tried to explain to them that the plasma volume and red cell mass determinations are like a dipstick, telling you the amount of oil in your engine. You can't just take a sample of oil from your engine, announce that it is normal, and then conclude that you are not a quart low.