Batik

I've been using a nature sounds generator instead, one of the rain settings. I'm not so good at listening to music while doing something else, especially if it's music I've played (around half that CD!). If I want music, I'll go and sit down at the piano. You're right about the sleep, it might be sleeping tablet time tonight. The problem isn't getting to sleep, though, it's the sleep I currently need in the morning. I'm on 11 hours or so at the moment, and sleeping tablets are designed around 8 hours. Plus I can only take temazepam for 3 days running, and that construction work has been going for months and will likely continue for months. It took the Council 5 hours to respond to the call, as they forgot to pass on the first two messages, and by that time the work had finished for the day anyway. Anyway, I'm already on two antihistamines, and I produce plenty of melatonin as I use darkness therapy. But you're right about sleep being crucial.

Monday, hah. They're there today, which isn't allowed. I reported it to the local council a couple of hours ago, but no joy yet. Damnit, I needed the sleep.

Valerian sounds like a good compromise, I might try that on Monday. I coped today by putting on masking noise, one of those nature sounds things, but it wasn't ideal.

I'm using a mix of half sea salt (nothing fancy, though) and half low-sodium salt. This way I get a fair amount of potassium too. Sometimes I add a little bicarb of soda if I feel I need it. I don't think I need extra sugar, I already get carbs in my diet. Remember that Pedialyte isn't marketed at people with POTS, it's for dehydration caused by severe diarrhoea and/or vomiting, and we have different medical needs to that.

There's construction work going on near my bedroom window, 6 days a week, starting horribly early - and I'm sleeping a lot at the moment, until 11 or 12. At least, I'm trying to. Anyway, right now it's horrendous, some sort of heavy duty hammer drill noise, and it's doing my head in. I remember someone on an ME forum saying that a low dose of diazepam (Valium) could help with sensory overload. Is it worth trying here? And howndoes it work? I won't be able to use it every day, too addictive, bit it could at least get me through the worst days.

Our relationship with food is very complicated in the world we live in today, and I think it's normal to find that physical problems with eating start having psychological repercussions. From what you say below, it sounds like you're having problems with both. Here are a few suggestions: 1) Have a discussion, here or elsewhere, about foods which are useful for when you're not hungry or feeling nauseous, e.g. bland foods or foods with a high water content. 2) Talk to your doctor about meds, both the ones which may cause you to lose your appetite, and anti-nausea medication. 3) Talk to someone about the psychological side of things. This could be a counsellor, an eating disorders forum or helpline, a good friend. I'm not saying it's necessarily a full-blown eating disorder, but it's something in that area even if it's a milder version, and they are likely to have good advice on how to get your head around it. I have a cousin who got into this situation. She was having physical problems with eating, due to pain and GI issues, and was generally very ill and I think depressed due to her quality of life, and she ended up going off food as well. The family used to nag her to eat, which didn't help at all. I get nausea and so forth, but not too badly. I occasionally go off my food if I'm under exceptional stress. I've had to make myself eat at regular hours, though, as otherwise I can forget to eat all day and end up tired and dizzy as a result, or accidentally eat too much without realising. I'm far too ill to be able to afford to skip meals.

The push to get more people on Vitamin D is happening over here in the UK, too. Articles pop up in the press, and they particularly note it for Scotland (where I live) as we're further north, get less sunlight, and have higher rates of MS, SAD and so forth. I think that's separate from the current fashion for vitamin megadoses. Doctors in the UK aren't putting people on 50,000iu for Vitamin D deficiency, they're putting them on 400iu. Apart from a few private doctors, who tend to be controversial - it's the sort of thing Dr Sarah Myhill would do, for instance, and she's massively controversial. I agree that a lot of people, including some doctors, think "oh, it's just a vitamin, it can't hurt," especially if it's something you can buy OTC rather than a prescription drug. Some vitamins seem unlikely to do anything if consumed in megadoses, but others can definitely be harmful, and those of us on this forum are a more sensitive bunch than the general public. So it's definitely worth being aware of the current medical recommendations and various opinions on the subject, and doing your research, rather than hearing someone say, "Hey, I've heard that 50,000iu Vitamin D is good," and giving it a try without looking into it further. It doesn't make it any easier that vitamin doses are also highly controversial, that the recommended dosages and recommended limits vary over time and between countries, and that there are a lot of people making a wild variety of claims both for and against. According to this page. the FDA's recommended upper limit for Vit D is 2,000iu daily for adults. It sounds rather worrying that you know people whose doctors are going against that, and to such an extent.

It's worth noting that 10,000iu is way above the recommended upper limit for Vitamin D. To quote this source, In July 2012, the European Food Safety Authority (EFSA) recommended that the European Union raise the Tolerable Upper Limits (UL) for vitamin D in adults and children over 11 to 4,000 IU or 100 micrograms per day26. The Tolerable Upper Limit is a dose that is unlikely to produce toxicity but is also likely to result in an excess intake of the vitamin. I used to take 400iu daily in prescription form, which also included calcium. I now have more money coming in and have switched to a vegan form of Vitamin D3 (algae or something, I can't remember offhand but it's called Vitashine, and it's definitely D3 rather than D2). I'm taking one supplement which has 200iu daily, and another which has 5,000iu once a week. I am now vaguely considering increasing that, although looking at the recommended limits for Vitamin D is giving me pause. Those limits are higher than they used to be, as well. But then there are some studies using 10,000iu or even 14,000iu, and that's just from that page about Vitamin D in MS. I'd be very wary of taking 50,000iu, though, as that's really, really high. Certainly not one to do without consulting a reliable doctor.

That's way higher than the amount of Vit D3 that's prescribed in the UK. Who's prescribing it? My levels of Vit D normalised after being put on prescribed D3, which I think is 400iu daily. How much were you taking before?

A lot of us here have ME/CFS, and that causes exercise intolerance. That will partially explain why some of us do better on exercise and some do worse. If you'd allowed us to tick more than one option for the last question, I would have, as I've encountered various attitudes from medical professionals.

Once I get to that specialist we're trying to refer me to, she should be able to investigate for EDS, she's meant to be good like that. It'll take a while, though. I know someone else who's seeing her, who isn't hypermobile, whom she's having investigated for EDS.

What is actually causing the bleeding? Some doctors are a bit too keen on putting women on hormones to mask the symptoms without bothering to diagnose the cause. Do you have a good gynaecologist?

No, I haven't. How else would it show up? I have a cousin with Ehlers Danlos Syndrome, but I'm not hypermobile or anything like that. I've not been on my feet for longer than usual, and I haven't seen bruising. It's been about ten days now.

Do you need contraception? Mirena decreases bleeding for some people, so it's worth trying. I have a copper IUD myself and love it, as I can't tolerate hormonal contraception.

Yikes. I'm glad she's doing better. Could you get a letter from a medical professional confirming that oral temps are unreliable for her and that tympanic should be used instead, to prevent this happening again? I've had the opposite problem. Oral temps are fine for me, and accurate enough to be used to confirm ovulation. Yet I've known doctors come up with completely inaccurate tympanic temps for me, including saying it was normal when we'd just taken my temp at 34.5 orally (gallstone attack causing hypothermia). So of course, I'm in a place where the hospitals use ear thermometers, and you're in a place where they won't! Sod's law, eh.

Good grief, yes, you should have gone to hospital. Anything resembling a heart attack needs to be checked out.

On second thoughts, don't worry. I've googled it and it's a completely different type of pain. I'm talking about aching rather than tingling or what have you, and deeper than the surface. I should mention that I've had hand and foot pain at the same time before, but not for a while, and this is the first time I've wondered if it might be a dysautonomia thing. Whatever's causing it, I should probably rest, use wrist splints and so forth.

The weather is always changeable in Scotland! Could you link me to the post or article in question? I don't know a thing about small fibre neuropathy, I'll need to start from scratch.

I overdid it the other week, exercise was mostly the cause I think, and ended up getting bad chest pain on Sunday and being taken to A&E to get checked out. The chest pain was probably costochondritis, which is normal in fibromyalgia (which I have) and which is renowned for doing a good impression of a heart attack. And I expected the hospital trip to knock me out, I have severe ME after all. I've been exhausted since then. What I didn't expect was for my hands and feet to hurt for the next week solid. Normally I get hand pain when I've been overdoing it with my hands, either by sewing or typing, and it's been diagnosed as RSI. I hadn't done anything of the sort. The accompanying pain in my feet (heels/ankles) made me think about the other symptom I get markedly in my hands and feet, which is when they get freezing cold. So now I'm wondering whether this could be a dysautonomia thing. I want to be able to sew again, ******, but I don't want to make the pain worse.

Getting as close to horizontal as I can. Food and drink often helps for me. Getting out of the heat is another option, I suppose. Has anyone tried running their wrists under a cold tap, does it actualy help?

It's sad that we live in a world where coming out as disabled/ill is comparable to coming out as gay, and so many people feel that they have to put up with being treated badly. I don't put up with people being nasty about my illness any more than I put up with homophobia, and I'm certainly not staying in the closet. As with being LGBT, most people are fine about it, and the few who are unpleasant are people I don't want in my life anyway. As for how much I tell other people, it's like any other personal issue: it depends on the relationship. If people start playing games with you, telling you they refuse to believe that you have a diagnosed, recognised illness, trying to force you to do things which are dangerous for you, anything like that, please don't think for an instant that they have the right to do this or that you should accept it. I've seen far too much abuse of that nature occur with invisible disabilities, sadly.

What's happening when you sleep? I'm guessing you must be awake to experience that symptom you describe as feeling like there's a sliver in your heart, so how often do you wake up? Have you been checked for sleep disorders?

One health risk with being a nurse is shift work. It really messes with your hormones, starting with melatonin and going on to sex hormones and such. There are some alarming studies on rates of breast cancer and so forth in night shift workers. Also it can be quite a hard job, long hours, exposure to bugs, harder to take time off to rest, and a relatively high chance that you're also raising a family. ME is meant to be particularly prevalent in nurses, teachers and farmers, and ME often overlaps with POTS.

Does processing matter with salt? I mean, I can see why it matters with wholegrains vs. processed white flour etc., but with salt? I've read that the fancy salts are just dirty, that's what gives them the colour, and the additional nutrients are too small in quantity to be significant. Thanks for the food list, that's useful. Tomatoes are nice sprinkled with salt too. Also vegetable broth, including the bouillon powders you can get. I've been known to make a mug of soup with Marigold bouillon, extra salt, and some soup pasta and frozen veg such as peas. I'd never have thought of salting melons. What's vinegar-based sodium?

Why Himalayan salt, could I ask? I'm reading up on it, but so far I'm just coming across a lot of nonsensical ramblings and bad science. For instance, people are saying that you should use speciality salts "because table salt is sodium chloride!" The daftest article I've read is at http://www.quantumbalancing.com/news/sea_salt.htm