Janey

I feel embarrassed to talk about sex on here, but as sexual dysfunction has started to become one of my main symptoms and is threatening to ruin my relationship, so I need to talk about it! Over the years that I've had dysautonomia I've gone from extremes of lubrication "down there" to none at all (and it has nothing to do with how aroused I am mentally/emotionally). At the moment I'm going through a particularly bad dry spell and I'm wondering if it correlates with other symptoms or parts of your nervous system? For eg, does vaginal dryness mean intestinal dryness too? Does it mean if my vagina isn't secreting the lubrication it needs to function that my intestines aren't secreting the liquids they need to function either? I know it's a wacky theory, but it seems to correlate. Any help or advice with this would be much appreciated. It's so sensitive down there that the thought of using lubrication is almost too much! Janey

Broken Shell's description was also amazing!! If I am feeling awful with POTS, gastroparesis etc, sleep at any time of the day makes me feel better and takes the feelings away. However, when I get up in the morning after 8 hours of sleep, I feel awful. As well as what broken shell said, I feel it's the parasympathetic nervous system catching up with the sympathetic when we sleep, and I feel like the rest of the time my sympathetic nervous system is pounding away uncontrollably. One other thing is just that lying down takes away half the symptoms for me. Really resting my head and body changes everything, so surely that's got something to do with really counteracting the fight or flight response? Janey

Isn't birth control supposed to raise your blood pressure? Maybe it is helping keep your BP higher? I had the same thing when I didn't have anymore birth control to take after I stopped menstruating, and I got really ill for stopping it. I'm always better when I'm on it. Janey

You must have seen my topic "balancing relationships" about my partner who doesn't fully understand dysautonomia and I'm worried we're going to break up, and we weren't even married, so I can't even begin to understand how you're feeling, but my heart breaks for you. Marriage is meant to be in "sickness and health" like you said, and for him to tell you, you have "selective participation" must be the MOST frustrating thing to hear. You probably feel more relaxed about being ill around your family and friends, rather than his family and friends and that's why you go and see your folks even when you feel bad. I don't know what to say to you, but just want to say I'm so, so sorry, and the main thing you have to do in this is see HIM as the bad guy, not you. Do not blame yourself for this, you are not at fault. Janey

Thank you so much for all the replies, they have made me think very seriously about the relationship. It is just so helpful to have my feelings validated and to realize that it is wrong for people to expect me to have the stamina of a normal healthy person. I've been ill for about 3 years now, and my bf and I were only together for 3 months before I got ill (so weren't living together then, didn't have any sort of housework schedule etc) so he has only truly known me since I've been ill. But are there men out there who will really do more than half? Do all of you have partners who take care of you and love you despite not being able to function most of the time? And if so, how did you meet them? I barely go out anymore, so I've got no idea how somebody would have the chance to fall in love with me! I think the difference in my situation is that there are many women out there with partners who do nothing around the house, but don't complain/notice when things are messy. My boyfriend is the type who will sweep a cup away from your hand if you're still drinking from it so he can wash it up. No wonder I can't keep up! I have tried suggesting that we go to therapy, but he doesn't want to go. I cannot afford to have it by myself as all my money goes on rent and essentials for living, especially taxis into work when I'm feeling awful, because I can't drive. I've also asked him if I can give up work for a while and have him support me until I feel a bit better again, but he won't do that either (it's got to be 50:50.) This all makes him sound so rigid, but he really isn't, emotionally. He's just rigid with practical things like money and chores. Can I just ask, what sort of housework tasks do you all do? I want to know so that I can at least try to do those ones. Janey

I am having real trouble with this guys, and I don't want my boyfriend to leave me on top of everything else that is happening, so just interested in how you all manage this. One of the biggest stresses arising from having POTS/EDS/Gastroparesis is that I can't actually do half of the housework. It is the endless bone of contention between myself and my boyfriend, as in most relationships, it's mostly the woman pushing the man to do more around the house. And in our case, it's reversed. He understands to a certain extent how my POTS/EDS prevents me from standing up/bending over/moving around too much, but when you add to that not being able to move for two hours after eating a meal (therefore not washing up, clearing plates etc) it just looks bad. I can see him looking at me sometimes as if I must be faking, but I'm really not. He says things like "If you can walk up the stairs to go to the toilet, you can at least put the dishes into the dishwasher." This is true, but only at certain times, ie, not after a meal (which is when he wants it done the most!) I try to explain this to him, and understandably it's hard for him as throughout his life he's never had that feeling after eating a meal that the food just won't go down! I've tried to clean the bathroom a few times, but each time it makes my POTS worse. I start getting vision problems so I can't even see the tiles, and the smell of the chemicals makes me feel sick. I always finish the job, but end up in bed for the next two hours which sets me back even further and means that the next day I can't do any housework. But then sometimes I have days (like we all do) when I'm like a normal person and I can do all the housework and have sex and socialize. And he sees the dramatic difference and thinks I must be faking all those other times. In my boyfriend's ideal world I would do HALF of the housework and be able to make love with him every night. That's not too much to ask for a normal person, is it? In fact, compared to some households that's pretty reasonable. But I just can't. I've tried to spell out the full extent of the problem to him and he understands to a point, but he compares me having the strength to get up and go to work each morning and sit at an office desk, with doing the housework and having sex, but I can't do both. I have a limited amount of stamina, and when he starts accusing me of being lazy or saying "If you can do x, you can surely do y," it just makes me feel awful because he has no idea how I have to preserve and prepare myself for hours before I do ANYTHING strenuous. He will not pay the full rent of our house because he believes that everything should be straight down the middle. He is into fairness in a big way. This is not a bad trait at all in someone that you're in a relationship with, but when you have POTS the balance gets so skewed. This means I have to continue working while I'm ill so that I have enough money to make my contribution. Sometimes this is fine and sometimes it isn't. I am taking a month's paid sick leave next week, so looking forward to this rest, but I worry about the future. What if I get to a point where I can no longer work and he has to look after me? Will there be a point where he sees that I'm too ill to do the things he wants me to do? If he does see that I'm too ill and that I don't have anything to give to the relationship anymore, will he leave me? When we "talk" about this and I try to get him to understand how ill I feel he says "I just want you to do as much as you CAN," but the problem is, he doesn't believe me when I show him the extent of what I CAN actually do! Does anyone have any advice or words of wisdom for this? I don't want to have conveyed him badly as he's an excellent boyfriend and one of the lovliest people I've ever known, but I feel like I'm falling short as a girlfriend AND as a woman.

Hi erika, I'm so sorry your sister said that, it is totally unfeeling. For people who have never been properly ill in their lives, it is so hard to understand what being chronically ill is like. They will never understand until it happens to them. If it's any help, my mother is also the same. She goes as far to say the reason I have this is because I've "been a bad person," or I "take too much prescription medication," or because she thinks I "eat badly." It's ironic really, because the reason I'm ill is from Ehlers Danlos syndrome which I have, in fact, inherited from her! It's just that she hasn't had any secondary conditions from it! janey

Nausea is my main and most persistent symptom. Anti-nausea medication really depends on what type of nausea you have. If it occurs after eating a meal as part of gastroparesis, then you want something like metoclopramide or domperidone to increase peristalsis and help it go down. If it occurs randomly as a POTS/dizziness symptom, then I find something like compazine or phenergren really helps. I get no side effects from any of the nausea medications, but some don't work. For eg, metoclopramide only works 40% of the time for me, but compazine works every time. Janey

Yup, garlic and onions are a nightmare for me. I used to eat a lot of them before I was dx because I thought that I was "ill" and they would boost my immune system and make me better, but they made me so much worse! I couldn't understand it! Janey

I'm the same, yes. And you're right, the more hot I get in the night, I can wake up and have POTsy attacks where the room is spinning, my head is thumping, I feel sick etc. It's like the blood has completely stopped moving. The problem with moving around for me is that it makes me feel so ill (hot, sweaty, breathless, chest pain) but then once it accumulates and I get better at moving around, I feel much better - POTS-wise. It's just pushing through that initial barrier that is painful and strenuous (even just walking down the street) and most of the time I can't be bothered to put myself through it, even though I know that it pays off eventually. Janey

This is really interesting for me because I have been a pescetarian for so long (someone who is a vegetarian other than eating seafood) and I've found that a lot of my digestive/POTS/EDS issues don't affect me as severely when I eat meat. And I've found exactly the same with carbohydrates , I feel awful after them! I've been eating lots of tuna and salmon and mackeral, but I'm sure it would be even better with chicken, turkey, lamb etc. Problem is, I don't want to eat meat, but I do want to feel better. If it came to choosing to be a meat eater or to have POTS/EDS/Gastroparesis really bad forever, then I'd choose the meat everytime. It's just THAT bad! Can anyone suggest a diet that I might go on with chicken/fish? How can you go on it without it ending up like an atkins diet? Where do you get your vegetables from? And do you eat chicken for breakfast? How do you cope with eggs? Sorry for so many questions!

Hi! I flew from England to Barbados (8 hour flight) a few months ago. It worked for me because I was MEGA prepared before I went. I wore leg and abdomincal compression before and during the flight, took loads of hydrating salts all through the flight and for 5 hours after I got off the plane. I took compazine and I drank two litres of water while in the air (the bathroom breaks were a little annoying for some but it was worth it..) and I escaped with minimum POTS effects.. I have however had terrible POTS during short term flights where I have hyperventilated, but I think that was during a flare up, whereas maybe the Barbados flight was less of a flare up?

I'd say I feel devastated and depressed for no reason and I can never pin point why. Before my autonomic problems, I used to be able to feel sad and know exactly why it was, but these days it just suddenly comes over me and I have no idea how to get over it or stop it happening. It's always worse when I'm standing up too! Lying down makes the world seem a better place!

Yep, completely exhausted! No tips on how to improve it, just not to strain (but that's hard for those of us who have gastroparesis and constipation due to things not going down!)

Hi, like everyone else, it varies from day to day. Sometimes I have to lie in bed all day, still, can't move, eyes closed, can't eat/drink/talk, then on the occasional day I feel like I want to go out clubbing and dancing! I'm sure if I got there though and started dancing, I'd want to go straight back home because it would make me feel awful, but you know what I mean!

This is all fascinating (and also a pain in the a**!). I wonder what bit of POTS or EDS causes it? Anyone have any idea?

For about five years (since all the POTS and EDS symptoms started coming on) I've had the most horrendous motion sickness. I only have to be in a car, a bus, a train or a boat for two seconds and I completely lose my sense of balance. When I get out of the car, I can't even walk in a straight line and the nausea is terrible. Does anybody else get this? And is it connected to POTS and EDS, or is it likely to be something else? Janey

It's interesting you say this because I feel like I haven't had a flu or stomach bug *since* getting POTS - because POTS feels like all of them! I must have had these infections though, but only noticed that my POTS/gastroparesis was particularly bad that day. In terms of weird symptoms, I get: - purple fingernails (something to do with poor circulation - duh!) - feeling like my eyes are eggs with chicks straining to hatch out of them all the time - that thing where your vision jumps to the side with every heartbeat (mainly on standing when the heart races) so it's like you're seeing two scenes of what's in front of you in quick succession. - wake up with a bad taste in my mouth

I'm totally the same and utterly with you on this one. I find that even if I get myself into it in my head (and it has to be on a good day and it takes a looong time to get in the mood), my down-belows just don't co-operate at all. They're not feeling it. On the odd occasion where all the hurdles can be overcome, and as long as it doesn't last long, I am okayish, but that's not very often.

Hi All, I'm new here, 25-yr old female dx with EDS hypermobility, secondary POTS, intestinal dysmotility and what my neurologist calls "generalised autonomic dysfunction." I'm at that point where I've just been diagnosed but have had symptoms for 3 years after catching a parasite infection which attacked my nervous system back in 2006. My symptoms have gradually been getting worse over the past 3 years and I seem to have constant nausea, stomach cramps, lightheadedness, dizziness, fatigue, subluxating ribs, chest pain, trouble swallowing, bladder infections, pain etc. I'm about to give up my job and be supported by my partner who is sympathetic up to a point, but doesn't completely understand autonomic problems. I'm hoping to start treatment (whatever that may be) in a few months time, and I'd just like to know whether any of you managed to get a decent quality of life after getting put on medication or given any sort of treatment? Can any of you reassure me that this point is the "lowest point?" At the moment my quality of life is quite poor: I spend most days lying down, can't eat very much, and symptoms are so random. One day I will feel completely normal and can eat a feast and the next day I can't stand, speak, swallow, digest etc. The only medication that stops the nausea is compazine. Metoclopramide works about 40% of the time, domperidone has no affect, and Zofran makes my bowel go into reverse. I've heard that you can get a botox injection in the bowel and this helps symptoms. Has anyone had this? I also read on quite a well known site that EDS (hypermobility) is degenerative. Part of me thinks this can't be true, and the thought of my bowel and POTS symptoms getting any worse in unbearable. Anyone know if this is true? Thanks for reading.