starby

Hi all, Recently I went out on a date for the first time in four years. I ended up with the dilemma of what to tell the guy about my ME/CFS and suspected POTS. I didn't mention anything on the first date but had planned to on the second, but as it happened I was too ill to go so I emailed him to explain. He has said he's not really over his ex anyway so things have kind of not developed. I'm keen to date again but not sure when to bring up my illness. Is it something to be honest about from the outset or leave for as long as possible? I'm kind of thinking maybe it's best to say from day one. I didn't take my crutches on my first date and ended up very ill as a result. Anyone else tried dating with this illness?

I don't know of any research or studies etc in this area but I definitely know what you mean. I have ME'/CFS as well as suspected POTS and I've not found many people who understand my attacks are NOT panic, even other ME people don't seem to know . My attacks very often come on while I'm a passenger in a car because the visual stimulation seems to push me over the edge. The symptoms are similar to anxiety, persumably because of the release of adrenaline, but they're definitely not panic. I agree stress can contribute or make them worse though. When I go into an attack it is the most dreadful sensation I have ever experienced and I actually called it "adrenal shock" even before I knew what was going on. My heart pounds, I shake and tremble all over, I feel sick and faint like I'm going to die. And of course people who don't know will say it's anxiety! It's so hard. When I get an attack in a taxi I feel like screaming for help but I'm frozen, just wanting the feeling to pass. I do hope there will be some studies into this. With growing recognition of POTS I am optimistic that it can only be a matter of time.

Hi everyone, I'm really happy to have found this forum. Basically I have ME/CFS and was diagnosed with it first time around in 1998. I managed to get back to leading a normal life in 2000 and was ok until 2005 when all my symptoms started to come back after a series of viruses. My main ones are: immune system reactivation (sore throat, glands, feeling ill), muscle weakness, severe exercise intolerance, dizziness, hot and cold, flueyness, shakiness, muscle pain, joint pain and severe aching, migraine, nausea and all manner of digestive problems. I used to get palpatations on severe exertion but not ongoing. I am mainly housebound from this and use crutches when I'm out. Last April I decided to do some yoga because it is generally well believed that yoga is very beneficial to ME/CFS sufferers even in very gentle degrees. Well, this was not the case with me. I literally did five very gentle overhead arm stretches each morning, deep breathing in and out on each stretch. I felt good as I did this and for nearly a week I had no apparent ill affects. Then I started to experience the most frightening symptom I've ever had. My heart, which has pounded on and off in the past on exertion, went completely out of control whenever I sat or stood up. It was literally 170 bpm on standing. I kept thinking it would stop so I tolerated this for six awful days before calling an ambulance. I was unable to deal with my son or get up the stairs as any movement was unbearable. Added to this, I had a very tight chest, severe shortness of breath and even talking caused my chest to seize up and my heart to pound. While in hospital any talking or movement made my heart race and I kept setting the heart alarm off. The doctors were baffled because my actual heart is ok, it's the behaviour. They gave me beta blockers and sent me home. I'm very worried about the pills as beta blockers are not meant to be good for ME/CFS but doctors don't know much about that either, if they believe in it at all Since then I'v e experienced similar with my heart although luckily not as fast as that. It gets worse after viruses (I had a sickness bug two weeks ago and my heart races when I get up in the mornings to well over 100). Large meals also makes it race. I also get chest pain and tighness, nausea, dirrohea after large meals, coughing and a horrible shortness of breath. I'm thinking about POTS as a friend of mine has it and my symptoms are similar. Can POTS be part of ME/CFS? The symptoms seem to overlap a lot. If I have POTS as well now I want to at least have it recognised. Can't type anymore hand hurts Welcome any advice and look forward to getting to know people