The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Figuring out this crash

Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Calathea, May 11, 2015.

  1. Calathea

    Calathea Senior Member

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    I am trying to work out what's behind this current crash. My pacing is pretty good, and I haven't been overdoing it lately. There are three possible culprits that I can think of. Actually, make that four.

    1. My partner has been away for two weeks (back tomorrow, hurray!). To be honest, I don't think this has made a difference. I've had support workers in every day, and I'm not really engaging in my pouncing duties with the cat (my current main form of exercise) any more than usual. I am definitely getting lots of cuddles from her, she turns into Velcro Kitty whenever he's away.

    2. I had a snazzy new walk-in bath put in just as he was leaving. Showering is so much easier now, and bathing is absolute bliss. We live in different flats in the same building, so it was pretty straightforward, I just camped out in his flat while the plumbers were in, though I had to go up and down the two flights of stairs between our flats a bit more than usual, and I have memories of standing talking to plumbers and realising I had to sit down because my heart rate was in the 90s. Anyway, the main culprit I'm eyeing up is my lovely new padded shower stool. It is smelly, in a new-vinyl sort of way. It's been ten days and it is still smelly. Also there is a new shower curtain. I honestly can't tell if the shower curtain smells or not, since the seat is so pungent, but I don't recall having problems when I replaced shower curtains in the past (mind you, I could have just not noticed). Might this be an outgassing thing? I haven't experienced that in, ooh, the last incident I can remember is a landlord painting the flat around me eighteen years ago, and having to flee to a friend's and still being too ill to sit my exams. I don't have the option to put the shower stool outside to air, unfortunately. I don't spend all that much time in the bathroom, which has no window but does have an extractor fan. Could it be what's set me off?

    3. I've been on this pain flare for weeks, so who knows, maybe having to take tramadol and diazepam every day is making the ME worse? I don't think it ever has in the past. Normally I end up taking them a few days a week. I'm experimenting with cold packs for pain, also a TENS machine as of the last few days, but I can't see those causing a crash.

    4. New supplements. I've recently added in carnitine fumarate, the Dr's Best one, which I titrated up over a few days to a whole capsule. Then I added Thorne's Vitamin K2 (MK4) drops, titrated up to 8 drops, and have rather nervously gone down to 5 in case it's that. Also Vitamin A, 5000iu retinyl palmitate, which I'm thinking of changing to every other day. (This is me finally looking at what nutrients I am probably short of due to being vegan, on top of the ones I take already like Vitamin D and high dose B12. My teeth are already feeling and smelling better.) Could any of those be the problem? If it's one of those "healing crisis, gets worse before it gets better" things, I'm prepared to wait it out, but I don't want to simply be making things worse. I don't generally have huge reactions to supplements, and it's rare for me to get a really bad reaction. What is more common is that I take them for ages and eventually realise they made no difference whatsoever. Anyway, I am trying to work out whether I should back off on the supplements at all. I'm seeing the dentist next month, so I'm particularly keen on improving the state of my teeth. Undergoing lots of dental work would definitely not be good for me.

    The main crash symptom is just fatigue and sleepiness. I've been napping most days. My sleep quality noticeably improved when I added i the carnitine (that Fitbit is really useful), but isn't quite as good more recently.
     
  2. taniaaust1

    taniaaust1

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    I'd personally too think it was probably that.. it could even be the combo of both new things together which would out gas even more.

    Take care that it doesn't cause you to develop a new bad sensitivity. (If it was me I'd be removing them from the house to see if that helps things).
     
  3. Calathea

    Calathea Senior Member

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    Hello, Tania, nice to see you! How are things going?

    I really do need the shower seat, though, and the padding is much appreciated. Showering was a nightmare before I had this setup. Is there any way I can clean it that will reduce the outgassing, or do I just have to wait it out?
     
  4. Gondwanaland

    Gondwanaland Senior Member

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    I can't stand the pain from taking K2-MK4. I reported about it at the K2 thread.
     
  5. Calathea

    Calathea Senior Member

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    Sorry to hear that. There's quite a lot of discussion about K2, could you link me to your post or just tell me quickly what happened to you with pain?
     
  6. Gondwanaland

    Gondwanaland Senior Member

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    I started describing my experience in this post.
    I took it only once and the pain took about 3 weeks to dissipate.
     
  7. Calathea

    Calathea Senior Member

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    Thanks, and yikes. No, I haven't experienced anything like that, indeed I've never had that profound a response to a supplement. (Prescription meds for pain, on the other hand...) The only thing I can say for sure that the K2 is doing is that my teeth are smoother. I'm hoping it will help get the calcium back where it should be, since I've had calcific tendinitis in my shoulders and that is no joke.

    I noticed that you mentioned problems due to being on warfarin. My partner had a DVT a year and a half ago, aged 32, and will be on warfarin for life. I've been wondering what the effects of that could be. I can't get to the bottom of how the different types of Vitamin K interact with it, though. His tolerance for alcohol has plummeted, in an unhelpfully inconsistent way. The other week he had ONE bottle of beer, quite a bit of chocolate, and quite a bit of kale with supper after not having any greens for a bit, and he had the worst migraine I've ever seen the next day.
     
  8. Gondwanaland

    Gondwanaland Senior Member

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    I can say that warfarin underlies my health decline. I am glad I don't need it anymore. I took it for 1.5 years, then took vitamin E for another 1.5 years with no undesired side effects, and now I take vit E 1x or 2x weekely. Still need that darned vit K though. Trying to figure a way to take it without it causing pain though.
     
  9. Calathea

    Calathea Senior Member

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    Well, he doesn't have ME. I hope it doesn't cause him any problems long term. His sister's on it for life too, she's had two DVTs, also in her thirties. They think it's a genetic thing, as they don't have any risk factors. I'm sorry to hear you had such a bad time with it. Did they switch you to another med, or just decide you didn't need it any more?

    And yes, we know about the Vitamin K intake thing, although we've also heard that it's OK as long as it's consistent from week to week. It's easier said than done, though, and sometimes we slip up.
     
  10. Gondwanaland

    Gondwanaland Senior Member

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    I am only +/- for a few genetic factors, so in my case it was environmental. I hurt my shoulder, got on board of a plane for a long flight and had 3 blood clots to patch up the hurt shoulder veins. I also had 20+ years on the pill.

    I actually took the warfarin longer than needed, for safety. I saw 4 drs, some thought I should be on it for life, but my 1st dr., which turned out to be the best one, said I wouldn't need it any longer. But there is a hormonal cascade effect from the K antagonizing action that I haven't uncovered yet. Warfarin made me intolerant to gluten, and to any food that has an estrogenic or anti-testosterone effect.
     
  11. Lacey

    Lacey

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    I did a quick google for you and found this:

    Instructions
      • 1
        Place the item outdoors in the shade on a dry, windy day to help dissipate the strong odor as much as possible. Leave the item outside for several hours. If you are attempting to remove the vinyl smell from the inside of your car, leave the windows open for several hours on a warm, windy day to air the car out.

      • 2
        Mix thoroughly 1/4 cup baking soda and 1 quart of warm water.

      • 3
        Dampen a sponge in the baking soda solution and wipe down the vinyl product. The solution will clean the vinyl as well as deodorize.

      • 4
        Allow the vinyl product to air-dry. If the item still smells, wipe it down again with the baking soda solution until the smell no longer remains.
     
  12. Calathea

    Calathea Senior Member

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    Thank you, it was obvious to Google but I hadn't thought of it! Right, I've put a kilo of baking soda in my Amazon order, and will go and look up what a quart is. Do you think you are meant to do the baking soda thing while it's outside? Before it sits airing out? Afterwards? Repeatedly?

    I don't exactly have a garden. There's a communal area out the back, two floors down since it goes down to basement level (I'm on the first floor, my partner's on the third, and one of these years I will have a lovely ground floor flat with my own garden). Gravel and some municipal shrubbery, really, although I've sat out there many a time, often on a yoga mat. Last time I was there with a friend we were perhaps a couple of hours, moving the yoga mat to catch the sunbeams every half hour (it's very, very overlooked). It's a complete echo chamber, so neighbours were looking out once they heard us, presumably to make sure we weren't the people who'd been shooting up in the stairwell. I've a nasty feeling they could hear our conversation, and we do tend to talk about, erm, well, neither of us is particularly reserved, shall we say. And they probably got quite a good education in transitioning for non-binary people. Anyway, will that be OK, or should we crawl out to the nearby park and get some proper sunbeams? I've not been out since this crash started, apart from once when I somehow ended up going to my ex-girlfriend's gig because we were lending her my partner's keyboard (they provided a Comfy Chair), and I am looking longingly out at the gorgeous spring weather.

    Hmm, I wonder if my partner would mind taking it out with him when he goes busking. Probably not very practical.

    And just to be certain, is everyone fairly sure that the vinyl is the most likely cause of the flare, then?

    I'll take a photo of the new bathroom at some point. It is so snazzy. I got this bath, with the lights (gorgeous, and on a practical note, mean I can shower after 9.30pm, as I practice darkness therapy and avoid blue light after that time) and the airspa (rather weird, and smells of burnt rubber when it's on). I also bought this bath step, but I don't think that's smelling. It's a sort of thin foam layer on top of a plastic base.
     
  13. Lacey

    Lacey

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    I would mix up the baking soda, apply it while somewhere you feel comfortable (if that's indoors then apply it indoors), then take it back outside (somewhere breezy but under cover).

    I think the only time you really need to leave it outside (but under cover, not in the sun) is at the start (before applying the baking soda solution), I guess to speed up the de-gassing (through heat and airflow). The baking soda solution step just needs a little air to flow over the item, so indoors would probably be okay (if it still smells then definitely take it outside, under cover, for that step too). Just keep doing it till the smell has gone.

    All I know is the smell won't be helping and getting rid of the smell will help.
     
    Last edited: May 11, 2015
  14. Calathea

    Calathea Senior Member

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    Erm, would you mind writing that out as a numbered list? I got a bit lost with the order!
     
  15. Lacey

    Lacey

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    Haha :3

    The very first post I made has a numbered list of what to do...but here goes :hug:

    1) Pick up the stool, take it outside on a warm, dry, windy day. Leave the stool outside for several hours - somewhere in the shade where the breeze will get it.

    2) NOW make the baking soda mix, and apply it with a damp sponge all over the stool.

    3) Put stool anywhere you like where it can air dry. Outside again would be my pick because of the smell.

    4) If stool is still smelling bad go to step 2) again. If stool smells okay bring it back to the shower bath thingy and enjoy!

    Hope that made it easier :angel:
     
  16. Dr.Patient

    Dr.Patient There is no kinship like the one we share!

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    I think it is the showers. Have you taken more than your usual number this month vs prior month?
     
  17. Calathea

    Calathea Senior Member

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    Nope, same as ever. And they are now easier because I am not climbing over the side of the bath, not to mention have a comfortable seat, and have had two weeks away from my partner's shower which is little easier than it was with the old bath. But there has been the whole outgassing thing from the shower stool and the curtain.
     
    Last edited: May 12, 2015
  18. Calathea

    Calathea Senior Member

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    Lacey - thank you for catering to my total lack of brain, I appreciate it! We may end up doing these in the wrong order, though, since my support worker has time to have a go with the bicarb today but not to put the stuff out to air.

    I skipped the carnitine and Vitamin A yesterday, and my sleep was noticeably worse, so those are going back in. I'm tempted to try more carnitine but I don't think my bowels want that much, shall we say, encouragement.
     
  19. Calathea

    Calathea Senior Member

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    Another question: is it worth heating up the vinyl in any other way to speed up the process? I've been reading a thread where Dreambirdie was stuck next to a newly-tarred road and it took her five weeks before she started to recover. As well as hydrating well and eating lots of fresh fruit and veg, which I do anyway, Vitamin C and NAC were suggested.

    With Vitamin C, will using Ester-C avoid the diarrhoea problem? I only take 500mg of ordinary Vitamin C right now because of that, my bowel tolerance is very low for that. What about liposomal Vitamin C?

    As for NAC, could someone tell me more about that, how it works, if it's worth trying as a new supplement, what the side effects might be, and how to take it? 600mg is the amount I'm seeing in capsules.
     
    Last edited: May 12, 2015
  20. Lacey

    Lacey

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    np :) I often have difficulty following instructions too...in fact I had to re-read that fix I posted and had to edit my post several times when I first tried to explain it to you until it actually read as they said to do :cat:

    ...and still managed to make it more confusing :whistle:

    I suggest you try to follow exactly what they say to do, just so it works. Also don't put the stool in direct heat (under the sun, by a heater) in case you make the vinyl crack.
     
    Calathea likes this.

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