Managing your ME/CFS

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  Guidelines for medical advice / discussion
  • EmergeAustralia  

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  Low-dose naltrexone (LDN) for ME/CFS
  • Daffy_Dave  

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  Aye, I think it's important to recognise that, for whatever reasons, some people diagnosed with ME/CFS do not get benefits from LDN (or get side effects so strong that it's not feasible to take) and that this in no way invalidates their diagnosis or experience. It's great news that for some people with ME/CFS that the research and support for LDN is firming up (and it may be that further research into it helps those whom LDN isn't currently useful for) but there's still a ways to go yet. But we're heading down the path, and at an ever-accelerating rate
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  Aripiprazole
  • Looch  

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  @iris Thank you
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  Physiotherapy for severe ME/CFS
  physiotherapy allied health massage bedbound severe mecfs • • Fee  

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  Hi @salty - we don't name health providers on the forums - too much of a legal quagmire in terms of the potential for it to be seen as recommended by (or criticised by, depending no the type of reference, but that's clearly not relevant to your post ) Emerge. I've removed the name from your post, but strongly encourage you to PM Fee with their name
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  PEM recovery tips
  • river  

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  Microdose abilify has by far been the most effective treatment for speeding up my PEM. What used to take me 48 to 72hrs to recover from only takes 12hrs or no PEM from that activity. I still get bad PEM but it takes a lot more activity now to trigger it. Before abilify I would rapidly fatigue from speaking or laughter and would sometimes need to text or whisper during crashes. Strangely and awesomely I can talk normally during crashes now. (Please be aware that therapeutic (normal) dose abilify is associated with serious side effects and hasn't been studied yet.)
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  Cooking. Yikes!
  short answer • • Dot  

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  @Dot It is a relief...
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  Spirinolactone
  • Aur  

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  Thanks @Terry I really appreciate your taking the time and effort to reply. I am one of those people who responds well to higher dose antivirals. The only one I have access to is acyclovir and I tend to hoard it, to use when I need to think or function more normally. link text When I developed shingles a few years ago - it was bloody awful that pain - but after a few days of the prescribed dose of acyclovir, so many of my ME symptoms seemed to vanish. I was a bit shocked but I have known people who take the higher dose antivirals for their ME, so I don't know why I was so surprised. These same people, though, tell me that they have to go off these antivirals now and then to preserve their organ function. They crash of course. So I avoid any medication as much as possible, because I enjoy staying alive and having my organs functioning well. I do respect whatever people choose to do, however, because quality of life is so important. I guess I'll see what my GP has to say about spironlactone when I see her next.
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  Meal substitutes/replacements
  • river  

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  Hi @River, on the days that I struggle to eat because of nausea and extreme fatigue I drink a plant protein from Botanika Blends. It's organic, dairy, gluten and refined sugar free, and has no artificial flavours or colours. It contains prebiotics, probiotics and digestive enzymes. They have a huge range of flavours and on the occasion Aldi sell it at a very reduced price. So far, I've had no stomach problems from drinking it. I can highly recommend the Mint Cacoa, Golden Chai Latte and Oh My Apple Pie flavours. Take care of yourself.
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  Euthyroid sick syndrome
  • river  

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  @river said in Euthyroid sick syndrome: @Tess I haven't had those antibodies checked as far as I know. My most recent thyroid tests came back normal but they didn't test all the thyroid hormones. You need an open minded doc to test rt3 as it's not one of the standard tests and rarely done. I noticed after posting this that the Wikipedia article for ESS actually mentions chronic fatigue syndrome as one of the conditions linked to it. Might be worth checking out the references on that Thank you @river. I to noticed a link also to CFS in an article I read. I struggled to look into much... I will check with my doc about the rT3 she is great to approach about anything. It would be interesting to see what your thyroid antibodies are? I know some docs do not think it’s anything to much, having huge thyroid antibody levels, which I find amazing as of course it’s doing something! The doc I seen for ME/CFS stuff said it absolutely is .... he said I had Hashimotos which unfortunately also then turned into hypothyroidism down the track and to taking the thyroid meds. It appears the thyroid is capable of making a lot of people unwell.... Good luck if you get your antibodies tested I hope they come back good.
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  Microwave Ovens. What do you use your microwave for? Any good hacks?
  microwave • • Dot  

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  Microwave Salted Almonds (Best easy thing to provide for guests nibbles if you are well enough for guests) Mix 200g raw almonds, 2 tsp salt and 2 tbsp water in a microwave safe container. Cook in 2 batches (1 batch needs more stopping and stirring) Cover with lid or cling film. Cook on high 2 mins. Stir. Another 1 minute on high until browning and popping. And extra minute or more if needed. Repeat with second batch. Allow to cool. Shake in sieve to remove excess salt. Yum! This works with other nuts too. I have done it with walnuts, peanuts, cashews. You can also add spices. Recipe comes from Frank Camorra (Mo Vida)'s mum.
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  GET V HIIT
  • Chris  

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  @Chris I would be careful of any activity that raises the heart rate. But that's just me - having suffered relapses. Maybe spend lots of time lying down afterwards.
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  PACING TIP - an alternative to heart rate monitoring
  • river  

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  @lenri said in PACING TIP - an alternative to heart rate monitoring: As well as having no sensory input, as you mention, I also close my eyes when I rest like this. Do you do that as well, or do you allow yourself to be looking around the room? If I'm feeling really unwell, I will go full sensory deprivation with an eye mask and noise cancelling headphones (and maybe open a door to let in some fresh air). Otherwise I allow myself to look around but I try not to have bright lights on. Luckily visual input/light is not anywhere near as much of an issue for me as sound, motion or odours.
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  Cimetidine
  • Daffy_Dave  

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  @river I'm afraid I don't have a link to the study. On the guts being messed up, I actually think it was the other way around (I was getting more heartburn and so on with Cimetidine than Omeprazole) - although my GI tract is a bit funny, so I think there's more going on than 'classic' reflux. Much sympathy that managing your chronic nausea is so tricky - but very impressed by the quality of your thinking
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  Which heart rate monitor do you use?
  • Simone_Em_Aus  

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  @Daffy_Dave I would just like to add that I know the feels! HRM stuff is super overwhelming - OR IS IT JUST MY BRAIN? it has been on my list for a few years now, and for some reason when I look at the Facebook group for it there is so much reading prep that I get overwhelmed, can't make it through, and don't get very far lol. !
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  Iron deficiency and ME/CFS
  • river  

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  Just a quick (and very sorry if this is stating the obvious, but just-in-case, better safer than sorry and all that) mention that iron is one of those things that I'm fairly sure it's possible to have too much of as well (and that the consequences of having too much can be quite serious), so if people are taking iron supplements it might be an idea to make sure they don't overdo it.
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  Infrared saunas
  • hayden  

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  I think anything that heats you up is a no-no if you meet POTS criteria. I can't even handle the bathroom steaming up when I shower, I have to leave all the doors open or I feel like I'm going to suffocate.
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  Exploring the Gut Microbiome
  • Katt  

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  Over the decades I have tried everything and a plethora of medical tests, some to which I have major episodes and once ended up in another ward, from gastroenterologist to neurologist and under the care of now retired Professor Ray Garrick in the 1990s. My gut continues to decline in function. I have also toured the Centre of Digestive Diseases in Five Dock under Prof Borody and immunologist Prof Clancy. Nothing definitive has been found, a bit of this and that. I refused the RPAH and the elimination diet as back then, the 1990s I had two friends go down that road and come out allergic to everything. I am convinced my gut issue began the day I was born and with the dx of hEDS and MCAD and the ageing process, it is a matter of daily management. Two doctors have suggested a poo transplant which could help some things such as a better microbiome but it does not help valves, arteries, sphincters and ducts that malfunction due to hEDS. A ton of money wasted and more suffering endured than I should have in hindsight. A sick gut is IMHO a driver of ME/CFS.
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  Managing the change of seasons
  • Simone_Em_Aus  

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  I live in the tropics and only use fans not aircon . I really like open doors and windows. Here it is either really hot or hotter the humidity is extremely high so I spend my days in my jocks, I live alone by choice so it makes it easy to jump into a cold shower many times a day after I do small things around the place. I cant see me doing that in a workplace...
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  Re: Managing the change of seasons
  • Bill52  

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  Hair Analysis
  • Royal Flash  

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