Batik

I stopped being able to tolerate ordinary bras years ago, even softcup bras, and swear by stretchy maternity sleep bras. Try the Fertile Mind Superbra, or the Bravado Body Silk.

There are all sorts of definitions for ME and CFS. Overall, it tends to be used for the same medical condition. However, arguments rage over how to define this condition, and it's hard to diagnose, so chances are that half the people diagnosed with CFS or ME actually have something else. Which name is used is usually down to local politics and what the diagnosing doctor prefers. In the UK at least, doctors tend to prefer CFS, while patients prefer ME. Strictly speaking, ME has a tighter definition than CFS, as the latter tends to get applied to practically anyone with the vague symptom of chronic fatigue, while ME involves key features such as post-exertional malaise, neurological symptoms and so forth. I generally use ME in speech, but ME/CFS online, partly to reduce confusion, and partly because it works better in search engines. Are you more confused now or less confused?!

Don't forget that this will also tie into the politics about ME/CFS, especially since there is such overlap between ME and POTS. There's a powerful psychiatric lobby which is seeking to have ME/CFS dismissed as "all in the head", somatisation, deconditioning and so forth. It should also be remembered that where someone with POTS also has ME, they will probably be made worse by exercise, since the hallmark of ME is that exertion makes it worse. This is why it's not the best idea to say things like "everyone with POTS should try an exercise regime". But I don't doubt that for many people with POTS, properly-done exercise is tremendously helpful. It's certainly an area where I'd like to see more and better research.

I've been having some interesting discussions about electrolyte drinks in a Facebook group, and I'm curious to see what we're all actually getting in ours. I think it'd be useful to list what is in your electrolyte drink per 100ml, then say how much you drink in total per day, and what amount of the various components you are getting in total per day. Remember to check for the actual element, e.g. sodium rather than salt, and put in things like sugar, magnesium and so forth if they're in there. Here's mine. Brand: home-made electrolyte drink. Ingredients: Reduced sodium salt (Tesco's own brand) in water, at a dilution of 1/2tsp to a 27oz/800ml water bottle. Per 100ml: 0.05g sodium 0.1g potassium Amount drunk per day: around 2.5l Total electrolytes per day from electrolyte drinks: 1.25g sodium 2.5g potassium It's actually different proportions to what I thought. Hmm, I might go back to making it half low-sodium salt and half ordinary salt, which would give me a higher proportion of sodium. I do salt my food like crazy, of course, and that's ordinary sea salt, so that would probably balance it out.

Could you compromise? Take just enough meds to get you there OK, but minimise them in order to affect the results less?

There's euphemistic, and then there's "mating fluid patterns". This is a forum for adults, right? Maybe we could be a smidgen more direct? Incidentally, can people see what you've answered? Vulvodynia seems to be relatively common around here, but I'm not sure if that's the sort of thing you're looking at here.

That makes sense, from what my Magic Disappearing Eye Specialist has told me. You're not using those really old-fashioned big CRT computer screens, are you? Vicious things for migraine, those are. Incidentally, my eye specialist found that grey was the best colour for tinting my lenses to ward off the effects of fluorescent light. She said it's quite common for that to be a good colour to use. It's pretty convenient, as you can have grey lenses made up by any optician whereas specific colours are trickier and more expensive, plus you get stared a lot less than when you're wearing brightly-coloured lenses in your specs.

I get that too, we used to have a joke about "radioactive tears". I also find that getting water in my eyes hurts as badly as soap, and in fact sometimes just the steam in the shower is enough to make my eyes sting and swell shut painfully.

Have you tried changing the screen brightness? Changing the colour scheme can help as well. F-lux is a good programme for reducing glare on Windows machines, and Screen Adjuster is a goods Android app. I have Meares-Irlen Syndrome, and am sensitive to light, especially fluorescent (low-energy) light. I don't have any fluorescent bulbs at home, and have special tinted glasses to wear when I'm out, since almost everywhere has fluorescent light these days. Also try eye drops if your eyes are sore.

I'm on tramadol, and it's one of the first-line drugs in the UK. It's basically a synthetic opioid. With the level of pain you're describing, you need stronger pain meds. When I had acute calcific tendinitis in my shoulder, which is extremely painful, I was on the full dose of cocodamol and tramadol on top. Tramadol is unlikely to do you any harm, and if you don't get on with it, you just stop taking it. Cutting a bicep sounds horrendous. I'd suggest talking to a pain organisation, they exist all over the world. They can talk aout surgical vs. Drug treatments, and talk about what's available where you are. I had no idea that pain meds were so difficult in America, sorry for the misunderstanding. How do people with chronic pain manage? I'm a chronic pain sufferer myself, diagnosed vaguely as fibro though EDS is starting to look likely. To be honest, I'm absolutely horrified that surgery is being proposed before pain medication. If nothing else, a surgeon who is't keen on pain medication is likely to leave you without adequate pain relief after the surgery. That happened to my mother, where the surgeon kept telling her the surgery would fix all her problems. It didn't, she ended up in horrendous pain from the surgery and continued to be in awful pain later as well, and the surgeon just shrugged and said it wasn't his problem. It was eye surgery in that case.

I still can't figure out why no one has tried you on pain medication. That would be the obvious first port of call. Have you asked for any?

Were you the person who wasn't getting any pain meds?

I had a sleep study about eight years ago, and it was useless. All that sleep centre dealt with was sleep apnoea and narcolepsy. I had a circadian rhythm disturbance, Non-24 Sleep Wake Cycle (I was on 25 hour days), so problem #1 was that I wasn't falling asleep when they thought I should. They put me to bed at 9pm and got me up at 7am. This was not my normal sleeping pattern. They also failed to feed me, so between that and the sleep deprivation, I ended up collapsing on the floor at one point, whereupon they just stepped over me. Anyway, it sounds like the sleep study showed up problems with deep sleep, but the doctor completely ignored them and just wrote me a condescending letter telling me that I should make more effort to get over the insomnia. N24 isn't actually insomnia, and even if it had been, that's not a useful response. If you think she may have sleep apnoea or narcolepsy, go for it. If it's looking like something else, have a chat with the sleep centre and see what they are likely to do. Mine didn't recognise circadian rhythm disorders at all, the sleep lab techs had never heard of them, and I wish I'd known that before waiting a year. In terms of treatment, look up darkness therapy. This is about getting your body to produce its own melatonin. In my experience it works fantastically, whereas I found that taking melatonin tablets didn't do a thing for me. It's about light exposure. Blue light tells the body that it's morning time, encouraging serotonin production and suppressing melatonin production. This was fine when humans were living outdoors, but now we have artificial lighting, and computers, TVs and phones all produce an awful lot of blue light. Blocking the blue light, either by using orange light bulbs and computer screen filters or by wearing orange-tinted glasses, makes your body think it's in darkness, so that it starts producing its own melatonin. A couple of websites: personal blog, In Search of Mornings and Lowbluelights.com.

It's not going to work for you after only one day! Give it time. It didn't help me, but it does good things for a lot of people, including several of my friends.

If you're finding computer use causes problems too, try fiddling with the screen brightness and also the colour schemes. I can't read ordinary books any more, but I'm OK reading ebooks in a largeish font, wider line spacing, and medium grey text on a black background. I avoid black on white on the computer screen wherever possible.

Contact the UK Mastocytosis group, they have a list of doctors. I'm still stuck with having no one near me who has a clue about any of this, even though I keep being put on antihistamines and H2 blockers.

If you have migraines, many doctors will refuse to put you on the combined pill due to the increase in stroke risk. I agree that a lot of doctors put women on hormonal contraception too easily. It seems that often it's done simply to stop or mask symptoms without actually doing a diagnosis first to see what's causing the symtpoms.

I never do well on hormonal contraception for any reason. It's like having constant PMS. Thankfully I live in a country with good access to contraception, so I have a copper IUD for that purpose.

What sort of lighting are you being exposed to? A lot of people with ME/CFS or migraine find that fluorescent/low-energy lighting causes these effects. I don't have any fluorescent lighting in my home, though I do have some carefully-chosen LED lighting, and I have special tinted glasses to wear for when I'll be going out and subjected to fluorescent lighting, which is pretty much everywhere these days. They were prescribed by my eye specialist, who's an expert in ME-related eye problems, but you could also try going into an optician's and experimenting with different coloured trial lenses to see which seems to help the most. My current pair have a medium grey tint, that'd be a good place to start. Once I cut down on the light input, it also reduces the sensory overload.

A lot of people sleep poorly because they are getting too much light in the evenings, and it's suppressing natural melatonin production. Humans evolved outdoors, after all, not with domestic lighting and computer screens. It's the blue frequency of light which has this particular effect, so there's a technique called darkness therapy whereby you wear orange-tinted glasses which cut out the blue light for a few hours before bedtime, it fools your body into thinking you're in the dark, and you get nice strong melatonin production. It works a treat for me, and before that I had quite serious sleep pattern disorders. Google darkness therapy, it should come up. Although it doesn't mean my sleep's perfect! Right now I'm sleeping a lot more than usual, anything from 11 to 14 hours, and having to go to the toilet at night a lot more too, together with some charming nightmares. No idea what that's about, but hopefully it'll settle down.

Random meds reaction, incidentally: a lot of people report increased appetite/weight gain on amitriptyline, along with finding that it helps them sleep. I found I lost my appetite and got insomnia on it. It was useful, as it kick-started my weight loss programme (I was one of the ones who'd put on weight and needed to lose it), though it would have been handy if I'd been able to tolerate the med and use it for pain relief. Has anyone else had odd reactions like that?

What do they call it if your BP goes up and then down after standing? Mine often does that, though not always all that dramatically. What is more noticeable is that my pulse pressure goes all over the place, and will go from 40 to 60 to 15 after standing.

I think it might be worth outlining what PTSD actually involves. To begin with, you are involved in or witness a traumatic event, something that puts you in fear for your life (e.g. a car crash) or personal integrity (e.g. rape). PTSD can also occur after repeated events, sometimes lower-level ones, such as child abuse or domestic violence. Feeling helpless seems to be a key part of it. * Re-experiencing the event(s). This includes nightmares, flashbacks and intrusive thoughts about the event. * Avoidance. There are various ways of trying to avoid being reminded of the event(s). A uni tutor of mine had PTSD after being in a car accident, and it was a long time before she could cross the road again, for instance. * Hyperarousal. Feeling on edge, intensified startle response, being very jumpy. For instance, jumping a mile if someone opens the door. Irritability is common as well. * Emotional numbness. Feeling detached from others, losing interest in activities and life in general. * Sleep problems are normal in PTSD, as well as other symptoms common to anxiety. Other common features are suicidal ideation and/or substance abuse. It's normal to have some level of response like this after a traumatic event. It's not called PTSD unless it turns into a longer-term thing. If you've been through something traumatic in the past but you're not experiencing these symptoms, I think it's a lot less likely that you have PTSD. Trust me, PTSD is not subtle. For instance, another student tried to dangle me off the edge of a building in my first year at uni. I was pumped full of adrenaline for a bit, I remember being quite angry, but that was it, and I was fine by the next day. It didn't affect me as a trauma, even though my aunt kept telling me it should have. I would also say that a PTSD panic attack is nothing like a physical POTS-type reaction. If I have a PTSD panic attack, I'm curled up in a ball feeling terrified and I can't keep my mind from running on a hamster wheel on the topic of the trauma. Chances are I'm also having very frightening nightmares at night. I attempt to deal with the symptoms by anti-anxiety meds, by talking to people, and by generally taking care of myself, making sure I'm warm and well-fed. If I'm having a purely physical episode, then it's usually triggered by something obviously physical such as a meal or standing up or having overdone it the day before, and I don't feel panicky. At most, I'm a bit jittery.

Angela, do you a) have a history of some traumatic event or series of events, and b ) a diagnosis of PTSD? Because it sounds a bit like you're saying the doctor is suggesting that you have PTSD when you haven't been diagnosed with it. I've heard of some people who will chalk up pretty much anything to PTSD, which is in itself a bit dodgy, but I'm talking about in patients who don't actually have a PTSD diagnosis or any reason to think they have PTSD. There have been problems with people running quack "treatments" for ME/CFS where they tell every patient that they are ill due to unremembered trauma, in some cases telling people in perfectly healthy marriages that they are being abused, whether they know it or not. I believe it's going on for other medical conditions as well. I hope you've not run across one of these, as it's a thoroughly unprofessional way for anyone to behave. In answer to your question, yes, I have PTSD, and I think it's exacerbated my physical symptoms a certain amount. But it doesn't coincide with the start of the ME/CFS (16 years ago), it started a few years later. As for POTS, I'm still trying to sort out getting diagnosed, so I'm not 100% sure I had it or when it started. The POTS-type symptoms got markedly worse after I had surgery a year ago, which I understand is common. The PTSD is mostly residual by now, it flares up now and again.

By the way, isn't the 30bpm rise meant to be from lying to standing? The 90 to 116 rise that showed up on the test was from sitting to standing. I'm composing the email to the specialist. Apart from briefly outlining what my numbers tend to be, and mentioning the symptoms I get after eating or standing up, what sort of things are relevant to stress? I've got so many symptoms going on every day that I don't know where to begin!