glimmer

I just wanted you to know that I understand how it feels to be in the position of "looking out the window". Even though I just had a major crash I know deep down that I always work my way back slowly but surely from crashes. I keep a journal and I can read back to find the proof of this. But sometimes it helps to be reminded by others that if we do the "right things" for our own individual situations we will make our way back to our "baseline". Anyway I just want you to know I understand how you are feeling and I will say prayers for you that you will recover sooner than later from your "crash". Glimmer

Thank you all so much for your help. Your help and advice and kindness and support in itself HELPS BIG TIME. It helps my spirit. I don't exactly have a lot of support in person. My family is not exactly "available". They don't really get it. And so it helps to communicate with others who get it. Glimmer

JLB Thank you so much for your reply. I was feeling so all alone and I feel so uneducated about this complex disorder. I've never really grasped the whole thing. It's been hard for to read the scientific material out there and even lesser scientific material because I am so brain fogged. I just can't concentrate. So that's why I was looking for some imput from you all. And you JLB did a nice job of trying to put some of it into perspective for me in an easy to read fashion. I do meditate at least 3 times per day. And I rest a lot. It's so hard to not stress out with this illness especially when one really crashes in the middle of a prior relapse. So I try to relax and not be so stressed out. I am trying very hard to be patient AGAIN while I climb back out of this worse relapse. I drink H2O. Drinking comes easy as I am so thirsty. We keep a huge jug of water with a tap next to where I lay down and I keep refilling my big mug. I don't know if it goes through me so because I don't absorb it or just because anyone who drinks so much just naturally needs to keep voiding. Anyway thanks again.

Thanks morgan617 for your reply. Excuse my naivity but what are the power drinks? I've seen them mentioned occasionally in this forum but don't know what they are. I'd love to know. Also my blood pressure is kind of high so I don't know if salt is a good thing for me. I need to bring that up with my doc. Glimmer

Hi. I'm still quite new and posted a ways back complaining of having to lay down so much. I received some wonderful advice and empathy and sympathy from several of you and I am still most grateful. Anyway I am still in this lengthy relapse period but was doing better in that I could go out and make brief (and I mean brief) trips/ errands. But then a week++ ago I went to someone's house and hung out for to long and talked too long and got overly drained. I behaved in a slipshod fashion and overestimated my capacity to hang out. Or maybe I was just enjoying myself too much for the first time in a long time ago and I didn't want to go home to that bed. Next thing I went right into a huge crash and I feel worse now than when I first posted here complaining of being so drained. I could use a magic bullet but I don't know of one. I'm afraid of being stuck way far back into a deeper relapse for a long while. My question is why would such an outing where I was barely doing anything but hanging out on a couch and talking for apparently too long a period of time send me reeling backwards so far? It was my fault. I slipped up by staying out to long and then now I am paying what seems a larger price than I should be paying. Does anybody know why this happens? These crashes? Are there any websites that explain in simple terms the mechanics of crashing? Once I crash big time I seem to stay crashed for a long time. I'm mad at myself for not listening to my body. Because now I can't go on errands which took so long to build up to be able to do. And I feel really lousy and fatigued and totally brain fogged beyond belief. Do any of you know of any remedies to help boost those of us who crash? One huge thing I'd like to know is: has the medical profession been able to explain this phenomenon?? Why are some of us so fragile? So vulnerable to crashes? What are the mechanics of why we fall so far and then stay there? I would appreciate any information at all about this subject. Thank you, Glimmer

Veryblue I want to wish the very best of luck to you that you get your life back. It sounds like you have a smart doctor . . . i.e. one who "thinks". Glimmer

Thanks everyone for your imput. I don't know if I had swollen glands before I got POTS but I know as a child I had food sensitivities to wheat and dairy but I only realized/ remembered that after I got full-blown sick 6 years ago and I was looking back in my life for clues. I still do have those food sensitivities but I pretty much stay away from wheat and dairy and even sugar now. Glimmer-

First I want to say that I appreciate that you are all so available and kind. I have felt less scared just in the past couple of days knowing that I'm not alone. I've even been able to read a book that's been sitting around- concentrate better. That being said, I'm wondering how many of you have swollen glands. I have them in my neck and under my arms and in my groin. And I wonder sometimes if this is from my systems being thrown into disarray by dysautonomia or is it the culprit of the dysautonomia -like an infection in my body. I have read that some of you have had various catalysts like pregnancy, giving birth, an ear infection, neck problems etc starting this whole process of problems. But I also read that some of you have been diagnosed with CFIDS and Fybromyalgia, etc. I'm wondering if everyone with dysautonomia has swollen glands or just some of us. Or am I the only one. Thanks. Glimmer

Thank you again to all of you who have responded to my situation and thank you Goldidance for your words about trying to keep from losing too much conditioning. I find that way, way later in the day like come evening I can sit up some and I do keep it in mind that it's important to not lay down constantly. I don't mean to sound like I'm babying myself but the earlier part of the day is tough (like before 7 or 8 p.m.). I find that if I force myself to sit up before evening then it feels like it too much exertion - like I've run around the block. If I get too tired from even the simplest exertion I lose ground- like I go backwards. So I'm afraid to exert myself in the slightest bit before the evening comes. It has been a long set-back this latest one. I do believe that I will re-enter a remission one day hopefully it's around the corner but it is scary when the simplest exertion sets me back so easily. Or so I believe it does. I don't remember feeling this vulnerable before. But I feel very vulnerable to going backwards. I also have had some sad events occur in my life recently and I am stressed about some other things. I try to do meditation and I listen to relaxation tapes but these efforts don't always counteract the negative thoughts and sad events. I can clearly see that these things make me worse and maybe this is why I've had such a long setback. Does anyone else experience a corrolation between stress and/or sad and getting worse? How can I not feel stressed when I'm so afraid of never getting back on my feet which is maybe what my deepest fear is. Fear is the worst thing to have. I think sometimes I am my own worst enemy because I have this fear. Talk about a paradox!!! I want to be better. I fear I won't get better or that I'll just go downhill. And yet I know this fear must be making me worse. And if I knew how to click one of those yellow, round faces into this long diatribe I would click in the bewildered face because I feel so puzzled at this whole dilemna. How can such an awful thing happen to so many of us? Sorry I've gone on so. It just feels good to ramble and vent. I hope I'm not bringing anyone down with my rambling. Glimmer

Seaboard I forgot to add that with Shingles I am pretty positive that symmetry is a hallmark of the rash. Hope you are feeling better soon. Glimmer

Seaboard I was feeling so sorry for myself when I posted my message that I forgot to add a reply to you. What you have- that weird rash- sounds something like what I had a couple of years ago. My rash wasn't as spread as yours but the description sounds similar. My rash was diagnosed as Shingles which is in the Chicken Pox family. I don't know if that's what it is but if it is Shingles it will reach a peak and then start to go away. A skin doctor gave me the diagnosis whereas my PCP was baffled.

Thank you very much for your kind replies and suggestions. Already I feel lighter just to know that others care. Glimmer

Hi. I am a new member. I have been diagnosed with POTS. Sometimes I am in a remission. But when I'm not it's awful. Lots of time I lay down which is what I've done lately a lot. I have no choice as I am exhausted and my med doesn't seem to work too well anymore. I take Florinef. It gets very lonely. I have also been reading what you all have been posting for quite a while. When I found your website I thought I was dreaming. Like it was too good to be true. It seems like lots of you have lives of some sort even though it isn't easy for you. Is there anybody like me who spends months on end needing to lay dow? I have terrific brain problems like fog, etc. and that alone is very debilitating. I feel like I have an infection all the time. Like a flu. It's worse when I need to lay down so much. I don't even have the focus to read. Sometimes it's exhausting just to carry on a conversation. This all came on so fast. I was visiting a friend and of a sudden I had to lay down. I felt really funny all over. This was several years ago. My friend took me to the doctor and my heart rate was way up 160 and my blood pressure was way down when I stood. I felt awful. It took three years to get a diagnosis. I was able to get on disability but what I really wanted was to make something of my life. I'm almost 30. I swear my IQ has dropped 30 or 40 points. It's scary all the time. I am afraid I'll get worse. I don't know how much worse I could get but I am afraid. This illness seems to have a mind of it's own. There's nothing predictable about where it will take me next. But I don't know anyone like me who has to lay down so much. When I stand I have orthostatic problems. I can prepare a quick meall for myself but then I have to lay right back down. I guess I'd like to know if I am the only one who lays down for months on end feeling like crap and feeling scared. Thank you. Glimmer