Managing your ME/CFS

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  Guidelines for medical advice / discussion
  • EmergeAustralia  

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  Cooking. Yikes!
  short answer • • Dot  

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  @Kristy4Coffee Wow what brilliant cooking hacks to make life easier (I say smugly because I do quite a few of them myself ). So excited to read how helpful you find Alexa! I'm seeing my daughter today who has a google mini hidden somewhere in their (just moved into) apartment, and now the littlies are starting back at school and kinder (hooray for lockdown easing!) she might be able to find it for me. Lovely to have you here!
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  Help - overexertion
  • Rainbow Zebra  

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  @Rainbow-Zebra I'm just so glad they have identified the Vitamin D deficiency and hooray for getting some energy back! Fingers crossed the puppy behaves himself!
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  Amino acid supplementation
  • river  

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  @river I’ll be interested to hear how it goes as after reading Cort’s latest, and previous mentions of amino acid depletion, I was going to look into them. Thanks for the reminder!
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  Exploring the Gut Microbiome
  • Katt  

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  We definitely do @iris.
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  First proper ‘crash’ since official diagnosis
  • Bee  

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  Thank you all, your support really buoyed me up!
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  Low-dose naltrexone (LDN) for ME/CFS
  • Daffy_Dave  

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  @coco You're spelling it the same as my prescription, so I reckon you're on the money. As far as I know it's not knocking me around - I had a bit of a 'bump' every time I upped my dose until I got up to 4mg, but long-term functionality (particularly cognitive performance) with LDN higher, and no noticed reduction. That being said, I'm just one person, and people with ME/CFS tend to be more sensitive to things their bodies disagree with, and all our bodies are different. @Glimmer I'm afraid I didn't notice any significant improvement in quality of sleep with LDN. I don't get 'insomnia' per se, but I get ridiculously interrupted sleep, and the extent of the interruptions didn't seem to change that much. That said, if you do try it, I hope it helps!
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  Wheelchairs
  • Rainbow Zebra  

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  @crashdummy It sounds a bit like a frilled neck lizard with it's frill down... I don't know much about other state's lizards though, there are a few that climb trees. I've been bitten by a pretty good range of animals, I used to volunteer at a wildlife shelter. Parrot bites are the worst, though emu bites are surprisingly harmless. I don't volunteer there anymore though. Between the fatigue and the rumours of wildlife trafficking (!) it wasn't really worth it.
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  Dysautonomia corner
  • river  

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  @JustChilling Hi! Thanks for your advise and interest. I think I’ve developed another syndrome, called Doctor’s Reluctance Syndrome. (My idea for its name, sorry). After so long with CFS I think I’ve reached a point where I don’t want to even discuss it with my GP. I would actually feel uncomfortable about it. And she never asks. I can just see me asking my GP for the OI test and her giving me a strange look, and asking why etc. yes I know I could change my GP but I haven’t the energy to start again. And the idea of starting a new medication is a no go zone. I’m just sitting back waiting for the researchers to finally give us the answer, hopefully in my lifetime.
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  Managing sleep dysfunction
  • river  

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  @Kalinda What an ordeal ... yes, you would think the process would be a lot easier and the equipment more user friendly, especially with todays' technologies. I had a similar saga with a heart monitor halter and I think I was given a well used out of date version.... I got better results from my fitbit watch! .... The process also involved pick up and drop off ... such a chore when we all know that there are better ways to do this ... One would think that PEM would mean such exhaustion that sleep would be deep and refreshing but for me it is the opposite . I either fall unconscious from extreme PEM and end up in hospital or I spend the entire PEM period unable to achieve any regular sleep pattern. Getting a block of sleep of 4hrs is usually the first indication that I am moving out of PEM and into a more stable functioning level. I do believe that I am better being the master of my own sleep process and management. I am aware that some people may need machines for other disorders such as sleep apnea and I don't know what I would do If I suffered this as well ... just another example of the broadness of trying to manage sleep whilst living with ME/CFS ... At least you went through the process to help you get some clarification and explored it even if it was under such duress.
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  Managing the change of seasons
  • Simone_Em_Aus  

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  @davoid Hi davoid, I first came here about 30 yrs ago from a 4 seasoned Adelaide. I loved the Queenslander homes built on stilts and the stunning red glow of the Canefeilds burning. They no longer burn the fields and many of the Queenslander homes have also gone. It's 21 degrees now at 9 pm our most beautiful time of the year. As we approach The end of the year and the first few months into the next the heat and humidity is really something else, many far southerners find it a bit too much here in Far North Qld. I suggest you do your homework on that one...Regards, Kalinda...
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  Iron deficiency and ME/CFS
  • river  

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  Hi My Iron levels are always low, but recently dropped way down, not quite anaemic but close. I have been struggling with increased fatigue and tiredness for well over 6 months and it sort of coincided with the drop in iron levels. I take an iron supplement but due to MCAS I can only tolerate small amount,s so I received Iron via an IV. Wow, the next day I noticed a difference and within 3 my tiredness had disappeared but no real change to fatigue. I work with my GP and she checks my bloods for all supliments that I take as I’ve had issues with Kidney’s in the past.
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  The next phase
  • sez  

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  @davoid I have tried Magnesium Citrate, Chloride (liquid form - yuk), and Glycinate. These were the only 3 I could find at local health food shops and other such places. I'd be interested to try Malate. Can you suggest where I could find it or brands I could look up?
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  Aids and other helpful things!
  • river  

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  I would recommend having a clothes dryer. People are often reluctant to use them as they can use a lot of energy, but here's how I use mine: Most dryers have two heat settings: Hot or Warm. My dryer is a Hoover from the 1970s, so not as efficient as the newer models, and I've measured it's energy use as: Hot = 2200 Watts Warm = 1150 Watts So I only use it on 'Warm', and I only use for socks, underwear, and tea towels. All the little fiddly items basically. This saves having to hang up or peg every little item, which often is the longest part of the drying process. I find that 45-50 mins. will dry the above items. Sometimes the cotton socks are a little damp, so I hang those on the clotheshorse. As long as the dryer isn't overly full, the warm setting will dry clothes pretty well, and the less heat is better for the longevity of the clothes as well. 45-50 mins. at 1150 Watts @ 22 Cents per kiloWatt/hour = 25 cents. That is not a lot of money. Well worth the convenience. I only do a wash every 14-16 days, so that 25 cents per wash equals about $5.70-$6.50 per year.
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  Microwave Ovens. What do you use your microwave for? Any good hacks?
  microwave • • Dot  

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  @Dot Yes, they are very handy. Much quicker than other methods. When you have ME/CFS you need to conserve any energy you have.
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  PEM recovery tips
  • river  

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  Hey Glimmer, yeah everyone is different, so it's good to know what works for someone in case it matches up somehow and can help.
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  Infrared saunas
  • hayden  

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  @hayden said in Infrared saunas: I know of someone who recovered from CFS after being housebound/bed bound for a couple of years. They believe infrared saunas might have helped. Has anyone here had any experiences they could share? I haven't tried them yet myself, been meaning to for a while, but I tend to burn up when I'm at my worst, so I'm not sure they will be great. I've tried normal saunas but they leave me feeling drained. Hey Hayden and People, it depends a bit on each person. Some people are cold, some are normal, some are hot. If you found a dry sauna draining then an infrared sauna is in the same category, but it would be more controllable in your own home than in a public pool setting, so it could be OK. I used to go daily to the local leisure centre and use both saunas, but I'm a very cold person and like humidity more so I preferred the wet sauna more, but if I had the choice between no sauna and a dry or infrared one, I'd take the sauna. So many benefits as far as core temperature, muscles, joints, stress relief etc. but for POTS people not recommended. Saunas are not usually meant for long sessions (over 15-20 mins.) generally as they can be dangerous as far dehydration etc. Some people find alternating the sauna with a cool or cold water bath/shower to really 'revive' them and get the heart going, but it can be too much for ME/CFS people. I remember walking home in the dark and it sometimes felt like I was 'walking in sand', but I was warm and relaxed, so it was a trade-off. The warming of the core temperature, circulation etc. helps with digestion too, so it's helpful in many ways.
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  Post Anaesthetic Recovery
  • gretch  

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  Thanks for sharing that @Glimmer so tough on the body to have surgeries so close to together even without M.E. and totally understand the reluctance. I need to do a bit more research but quite interested in the articles that talk about adjusting hydration/electrolyte levels before and after sedation for people with M.E. Feel like that might be at least an easier option to advocate for.
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  Fasting and Gut function
  • Darryl  

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  From the Moderators: While we're always glad to hear of people experiencing improvement, please take care when investigating fasting. While some people with ME/CFS have reported benefits from fasting, others have reported that it didn't help and triggered difficulties of its own. We recommend exercising caution when investigating fasting, and only undertaking it in consultation with appropriate medical support (eg, a GP or dietician).
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  Aripiprazole
  • Looch  

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  @iris Thank you