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  1. Thanks for the replies Katybug and khaarina. I'm currently seeing a specialist in POTS, although I'm really embarrassed about mentioning it to him! I know I should because, as you said, it's important to have it documented, plus it may help in the long run in finding out what is going on. It's just so awkward!
  2. Thanks very much for the reply futurehope! It's not a "problem" per se, just very strange. I feel really weird having to discuss this but because of the length of time I've been ill (6 years) and the fact that no doctors can seem to come up with anything in regards to a diagnosis, I'm having to resort to the strangest and most embarrassing of my symptoms to try and shed some light on what is going on. At least I have a better idea that it isn't caused by POTS, anyway.
  3. Ok, this is fairly (very!) embarrassing, but I could really do with help regarding this being a POTS symptom. Just hoping I could get some thoughts on whether this sounds like it is likely to be caused by POTS. So.. Firstly, since being ill my sex drive has been steadily increasing. I assumed that with a chronic illness it would become lower, but at first it stayed about where it had been, then over the last few years has just started and then continued to increase. I know it's a bit of a joke that guys think about sex all the time, but I literally do now! It's CONSTANTLY on my mind.. like a c
  4. No, not really hot or warm. It's just the weird feeling of "moving" in my hands and feet, and the uncomfortable, unsettled feeling. It's so weird, and incredibly frustrating, especially in the cold months! I want to wear pyjamas!
  5. I have a very strange symptom that I need help clarifying if it's related to POTS or not. Basically, whenever I lie down to go to sleep, I start to feel strange.. my hands and feet feel odd, like the blood is all "moving" in them, and I get agitated and generally feel really unsettled - like I need to move and can't sit still. It stops me getting to sleep too, and I've sort of assumed it's adrenaline (or something else that is stimulating me). I've managed to pin it down and figure out what is causing it - my clothes. I have no problem wearing clothes when up and about during the day, but, for
  6. Hi all, This may seem like an obvious question, but when you stand, how do your legs feel? Within a few minutes mine become very weak and strained, and they start to feel very cold from the thighs all the way down to the legs. If I stay on them then they just continue to get weaker and worse. They also appear very white/pale. It feels like the blood is not pooling in them but not getting or going to them, i.e. going somewhere else. I was just wondering if this is common or normal in POTS/Dysautonomia? Like I said, this may be a fairly obvious or silly question, it just sometimes feels like the
  7. I'm trying no medication whatsoever. It's been 6 years and all I've been offered so far is Midodrine (and that took doctors 5 years to offer me) but that seemed to be addressing symptoms I don't have - dropping blood pressure, fainting, light-headedness, visual problems etc. Also I'm convinced that had I tried it that it would have made me worse. And at the moment I'm not seeing any doctors. They seem to have given up on me as they can't figure it out. I've been passed around every different discipline of medicine - endo, gastro, cardio, neuro, rheumatologist, infectious diseases etc. and basi
  8. Thanks for the replies everyone! I'll try to answer everyone's questions. Angelina: My ferritin levels have been checked on quite a few ocassions, and everytime they've been completely normal. I've read about something called Anemia of Chronic Disease, which sounds like it could be what I have, whereby the ferritin is normal but the serum iron, tibc and haemoglobin are all low. My vit D levels have been checked too and they were low. I've been taking supplements for them for the last few months. ChristyD: In contrast to my original reply I'm definitely going to look into MCAS. From furthe
  9. Thanks for the reply ChristyD! I have had my B12 tested on quite a few occasions and it has always been fine. I don't have the figures with me to hand but will post them soon. Just had a quick look at MCAS and whilst there seem to be some elements that are similar to me, I don't think it quite fits. I don't have any skin rashes or lesions, and some of the symptoms I don't have, although I can see how the attacks sounds quite like the exaggerated or overreactions I'm getting. Having said that I'm certainly not going to rule anything out and will definitely look further into it (and into getting
  10. Hi there, About 6 years ago I came down with a mystery illness. So far no doctors had been able to get anywhere with a diagnosis, and I was just wondering that as so many of my symptoms seem to be nervous system based and doctors have attempted to tell me the entire illness is POTS, whether if I posted a fairly detailed history of my case, symptoms and test results would you be able to offer any ideas or thoughts on my situation? The illness began in November and completely out of the blue. I woke up feeling totally normal and then at just after midday I started to feel very weak and fatigued.
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