Victoria

I have medically documented muscle atrophy (guessing from the large fiber problems), but I was shamed for it and told I needed to do cardio exercise. My skin is very dry and shiny on my feet, legs, hands and arms. Physicians haven't taken note of my shiny skin. But I visit an 88-year-old woman with dementia in a nursing home and she brings up my shiny skin at every visit! She always asks what I use to make it look so pretty. What a doll she is, she's pure joy to visit with. Anyway, I just read this about Autonomic Small Fiber Neuropathy: The skin over the affected area may appear atrophic, dry, shiny, discolored, or mildly edematous as the result of sudomotor and vasomotor abnormalities. Interesting.

Thanks thankful. Good to know that may be an option.

Hi newPOTSmom. Your son wasn't taking Florinef with a recent discontinuation, was he? I was just reading information about it because I take it, and it can cause skin peeling when discontinued.

Welcome misstraci! Having a concrete diagnosis is at least half the battle. I'm glad you found us!

Thanks so much Sally. I am taking notes here. What about neurontin? I took it for about a year, but I couldn't tell if it helped or hurt my POTS symptoms. Are there contraindications for POTS people?

I'm sorry, Jana. Between the two of us it will be a miracle if we get together! Mine started in toes, moved to hands, and now in my back, neck and shoulders. I'm on a heating pad constantly. Changed care to the UIHC and got a call yesterday so they could tell me they're yanking my pain meds in August. That can't happen. I think I'll have to sit on this info until I see Dr. Grubb. I don't want to mask anything. But this is really good information. Thank you so much!

You said you your GP saw you at home. Did he make sure you're not dehydrated? That can kill your appetite, drop your BP, make you vomit relentlessly and make your POTS worse. I think this warrants one of those dreaded "E" room visits. Very sorry you're having such a hard go of it.

Praying for you.

Sally, Thank you for this information. I will do anything to be mobile again! I'm pretty much confined to my home, with the exception of having a good day here and there. Is this common with Autonomic Neuropathy? To reach a point where you just can't "go" anymore? When I do go out I pay for it with excruciating pain, etc., sometimes for two days. I wonder if I'm aggravating my nerves by desperately trying to be healthy? I was in a power wheelchair for a while, but we couldn't afford a van to put it in. Oh, the pitfalls and perils.

Good link, Namoi. Thank you. I read it from top to bottom.

Dear arizona girl, Your reply is a godsend to me and I feel like the curtain has been lifted. I finally get it! You have no idea. . . . My illness initially began with POTS-like symptoms and severe shooting, burning pain in my toes. I've been battling this for decades with no resolution, and my large fiber nerves have been involved for many years (also clinically documented). Norepinephrine is elevated. I have hypertension on standing. I am a pile, but I'm hopeful. Thank you for the concise information. Tearfully Thankful, Victoria

Can someone please explain small fiber neuropathy? How is it diagnosed? What is the treatment? How does it relate to POTS? My QSART screen was abnormal. Does this mean I have SFN? I have a lot of episodic (horrible) pain and I cannot feel scalding water on my feet, sometimes on my fingers. Will Dr. Grubb or Beverly take note of these test results? Will they re-test me? Sorry for being so dense and for posting so many questions. I'm feeling a bit more desperate and brain foggy than usual this afternoon.

The increased adrenaline > insulin resistance is a very interesting theory.

Sounds like a good explanation to me. I lurk on a few pheo boards because my symptoms are very pheo like. But my catecholamines aren't high enough to warrant a complete scan or further investigation. I rarely lay on my right side because it causes tachycardia and I don't breathe well in that position. Sure wish I knew why. I'd like to at least even out the wrinkles on my face by sleeping on my right side!

I can't remember and I just stowed my medical records away. I almost wish I hadn't. Immunoglobulin M (IgM), which is found mainly in the blood and lymph fluid, is the first to be made by the body to fight a new infection. Immunoglobulin G (IgG), the most abundant type of antibody, is found in all body fluids and protects against bacterial and viral infections. Immunoglobulin E (IgE), which is associated mainly with allergic reactions (when the immune system overreacts to environmental antigens such as pollen or pet dander). It is found in the lungs, skin, and mucous membranes.

I'm wondering how many of you have had a 24-hour urine collection to measure your void, sodium, potassium, magnesium and calcium? The amount of urine I produce in 24 hours is astronomical — way off the charts. I'm also wasting sodium, potassium and magnesium in my urine. Theoretically, this could explain dysautonomia in my case, and I'm wondering how many of you have had this type of analysis?

Hi again. This is interesting because my CRP can be pretty high at times; but again, no clear cut explanation for it. It seems there is a connection with Diabetes and inflammation. This will be an interesting thread to follow.

I had an awful experience with Metformin — it took my ANS down big time. Thankfully, my endo discovered I was having a lot of hypoglycemic episodes, so I didn't have to take it for very long. I'm glucose intolerant and my endo says I'm headed to Type II Diabetes no matter what I do. He said I don't have the build of a diabetic (whatever that means), and I seem to confuse him quite a bit. I have to wonder why I'm this way, because I don't do sweets or high carb foods. . . .

I also experience tachycardia when I roll over in bed. Sometimes reaching into my purse to find something will set it off. I'm not sure what causes it because I'm a newbie and I'm not smart enough yet.

Great article. Thanks for posting it, Naomi!

I'm taking Florinef with fair results, but I had to titrate up in teeny, tiny doses (nibbles, actually). I only take 1/2 of a 0.1 mg tablet. Florinef is a corticosteroid and it helps to control the amount of sodium and fluids in your body. I lose sodium in my urine, and it does help by decreasing the amount I excrete. Because it's a corticosteroid I definitely wouldn't take it or stop taking it on an as needed basis. That could be very dangerous.

I can't say for sure if you're reacting to the antibiotic, but they lay me flat out on the floor. There are several I won't touch with a 10 foot pole. I sure hope you can get this sorted out and find your center.

You did exactly what any loving mother would do under these circumstances. She'll probably thrive in daycare. You're a very loving mommy, but I think we've all experienced mommy guilt. A lot of it.

I'm in a lot of pain as well (including my feet), so you're not alone. I have neuropathy . . . have you had that ruled out yet? I have to shut down and lay down when pain is at it's worst. I can't push through it, that only makes it worse. The clip below hits home with me. I don't know how credible the information is, but it's from the Orthostatic Intolerance/CFSupport website: http://www.cfsnova.com/qnaCoatHanger.html

Thanks for the link. I was poking around the site, came across their medical glossary page and found this: Aldosterone A hormone produced by the cortex of the adrenal gland, which is instrumental in the regulation of sodium and potassium reabsorption by the cells of the tubular portion of the kidney. In what manner does Aldosterone pertain to Mast Cell Disorders? I have low Aldosterone, Potassium and Sodium and I currently carry a preliminary diagnosis of Gitelman's Syndrome. Gitelman's is a sodium, magnesium and potassium wasting tubulopathy, and I waste these minerals through my kidneys/urine. I am taking replacement supplements and they've been pretty helpful. I am also on Spironolactone (potassium sparing diuretic), but my nephrologist had me discontinue it for a week to measure how much potassium I'm wasting in my urine without it.