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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. carer51

    Queensland Government: Gold Coast researchers make chronic fatigue breakthrough

    Thank you, phoenix rising, for being a place I can come and check the facts when something like this pops up! At least this looks like something that a GP might actually take relatively seriously if anyone tries to suggest James' illness is psychosomatic again, although it does seem less...
  2. carer51

    Anyone had good results from Lyrica without terrible side effects..?

    I was actually googling about it recently because I have an old stash and was wondering if it might be alright as long as I wasn't also on an SSRI (I came off it as I was trying to eliminate the sources of fatigue). I used to take quite a big dose of my stash when my (mystery) back pain was...
  3. carer51

    Could the microwave soup in which we all live now partly explain the upsurge in 'CFS'?

    not his 'cup of tea' :s not flippant or anything...
  4. carer51

    Could the microwave soup in which we all live now partly explain the upsurge in 'CFS'?

    Slight tangent, but as a teenager I was briefly prescribed some low dose antipsychotics for anxiety. My counsellor gave me a copy of the sales leaflet normally issued to the prescribing professional. It had a hokey stock photograph of a man hiding in a house with everything covered in tin foil...
  5. carer51

    Anyone had good results from Lyrica without terrible side effects..?

    It's odd that it makes you feel jittery - I have taken it in the past for generalised anxiety disorder. I wonder if the different dosages have different effects. I also immediately thought though that these seem like they may be start-up effects as your body gets used to it. For me I felt a bit...
  6. carer51

    Could the microwave soup in which we all live now partly explain the upsurge in 'CFS'?

    I am not a scientist in any way. But it kind of makes some sort of sense to me if the problem with CFS is at a cellular/mitochondrial level. It sounds completely insane. But when things sound completely insane sometimes you have to wonder where all those negative associations come from and why...
  7. carer51

    What proboiotic do you take?

    Thank you Plum that's really helpful - yes I think moderate might be the way to go for us. I myself feel pretty good on a low carb diet but it's a lot of effort etc so not something i do a lot, and im not sure my partner would respond the same way.
  8. carer51

    What proboiotic do you take?

    Bearing in mind we only have an NHS diagnosis of IBS and ME to go on and general, I guess, sluggish bowels.
  9. carer51

    What proboiotic do you take?

    James eats 3 bananas a day as he says it's the only way to stay 'regular'. However he's had worse issues for some time now - diarrhoea/constipation/wind - such that I can't remember how long it's been. Maybe it's always been the same but it seems worse lately. I've been reading that a low...
  10. carer51

    Completely eliminated my severe anxiety symptoms with three supplements!

    I am susceptible to sinusitis - I don't know if that is the same - whenevrer i get a cold. And bronchitis. and I do get a horrible cramping in my neck at times and general stiffness. It's worth a try, I've ordered some. And perhaps anxiety from external factors can trigger inflammation and a...
  11. carer51

    Completely eliminated my severe anxiety symptoms with three supplements!

    I'm a bit wary of MDMA for this because of the way it burns out serotonin. A comedown can bring on the worst depression you've ever felt. Maybe microdosing would be different. I've also read a lot recently about psilocybin and microdosing and done some practical research. Results vary but it...
  12. carer51

    Completely eliminated my severe anxiety symptoms with three supplements!

    I am searching for something to help my GAD (possibly with some CPTSD features/causes from childhood). I've been through many SSRIS and an SNRI, pregabalin, quetiapine, mirtazapine, and recently I read about buspirone and I sounded great - my doctor was an arse so i sourced i myself - but it...
  13. carer51

    Endocannabinoid system role in ME/CFS

    He had a bad day today feeling quite tired and dizzy. Could have overdone it on the days he had relief from the pain possibly! Found him lying sideways acroas the bed like a torpedo! Gah! Bastard disease! Hopefully tomorrow will be better, and lord knows what other reasons there could be (I've...
  14. carer51

    Mental Health gone worse?

    Hi SmokinJoe. Unfortunately any ill health can worsen mental health symptoms. Even a cold can send me off into shame and depression, I feel like I'm not doing enough so I feel useless or things feel too overwhelming, so I feel worthless. And if you're trying to look at the cause you will have...
  15. carer51

    Endocannabinoid system role in ME/CFS

    Hope you can find some use in them Cheesus.
  16. carer51

    Endocannabinoid system role in ME/CFS

    Great! I hope you continue to feel better. Love is...making homemade suppositories for your OH?! Or, trusting your OH to do that?! o_O
  17. carer51

    Endocannabinoid system role in ME/CFS

    Craft project is go, made a suppository, james tried it before bed last night so he'd be lying down. And didn't take one of the capsules he normally takes orally in the day. I came back from a meeting an hour ago and asked how he was and he said 'not too bad' in a relatively upbeat tone. Can't...
  18. carer51

    blood count etc

  19. carer51

    blood count etc

    Thank you - I can post it, but I didn't want to sort of burden anyone to doctor/diagnose more than necessary, was a bit torn! We supplement b12, iron is one I never thought to. Crap. Maybe because iron supplements mske me feel sick personally!
  20. carer51

    blood count etc

    Doctor ordered a full blood count for james plus a couple of other things though I get the impression this isn't generally massively helpful. And he last had one 2-3 years ago I think but I don't think we got to see the results. Some things are high and some low, only just within the boundaries...
  21. carer51

    Comment by 'carer51' in 'When Will We Get Enough Research?'

    'I think depression is a huge kludge of category mistakes all mashed together.' Completely agree, as a lifelong 'sufferer' of depression, I'm increasingly uncomfortable with the way it is presented as 'just a chemical imbalance like diabetes!'. I know that sentiment means well, but it suggests...
    • carer51
    • Blog entry comment
  22. carer51

    Endocannabinoid system role in ME/CFS

    A nice little DIY craft project :p
  23. carer51

    UK thoughts please

    I've just ordered an Epson pulsense 100 for James after reading this thread, he often feels distressed wondering why he feels so bad, wondering what he did earlier, yesterday, the day before...I think this might help him to know how much he is actually doing. He will try to do exercises like...
  24. carer51

    UK thoughts please

    That is horrifying.
  25. carer51

    CAPITA - PIP INVESTIGATION: Assessment reports show widespread dishonesty by nurses Healthcare pr

    'Wilfully misunderstood' is something I've come across often.
  26. carer51

    Endocannabinoid system role in ME/CFS

    I am now actually considering making suppositories by emptying the capsules we have and using coconut oil and a mould...ha....
  27. carer51

    Endocannabinoid system role in ME/CFS

    Thank you Erin, I will look into that!
  28. carer51

    CAPITA - PIP INVESTIGATION: Assessment reports show widespread dishonesty by nurses Healthcare pr

    Important, the idea that the assessors themselves as well as the 'decision makers' may be colluding in the dishonesty we know is happening.
  29. carer51

    Endocannabinoid system role in ME/CFS

    I did initially buy a bottle of the Endoca (oral) capsules but realised on receipt that the listed 300mg dosage actually related to the dosage of the entire bottle, rather than an individual capsule. We currently buy 100mg capsules from cbd brothers. James takes 2 a day as this is what we can...
  30. carer51

    Plase help me to understand

    I should clarify that I myself don't have CFS, I care for my partner who does - however I did have a few years of CFS-like symptoms, mainly fairly intense fatigue. I think some of this, to begin with a few years ago, was from overtraining (roller derby, gym and weight training whilst trying to...