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ME/CFS and Beating the Clock
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Newbie needing help

Discussion in 'General ME/CFS Discussion' started by Fogbuster, Oct 14, 2013.

  1. Fogbuster

    Fogbuster Senior Member

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    Hi everyone,

    Im very new to this forum, have been diagnosed with CFS/ME officially about 3 months ago and have been suffering with with this condition for about 3 years. I am in a bit of a rut at the moment as I have no idea what to do to help me take positive steps forward.

    I have had to move back home with my parents. Any opportunity I have to speak to them about "making a plan of action" is met with dread, confusion and arguments, which is counterproductive and creates a toxic atmosphere. What makes any planning, and conversations about taking steps forward nigh on impossible is the ghastly brain fog which completely incapacitates me to such an unbelievable extent.

    I've realised it would make sense to gain advice and guidance from the very people who've experienced the very trials and tribulations I'm currently going through. I need help with getting my feet off the ground basically and need YOUR help! I have a basic idea of what to do but not entirely sure about what to start with and what to focus on really. I know I need a recovery plan, someone to talk to who understands and things to get my mind off the illness, but as I've said I don't know where to start. Im just constantly in a fog. If anyone has any useful bits of advice, tips or techniques on how they got themselves moving forward I would be unbelievably grateful.

    Best Wishes
    Jamie
  2. Ema

    Ema Senior Member

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    Hi Jamie -
    Welcome to the forum! Sorry to hear that you are struggling but hopefully you will get lots of help here.

    It would be helpful if we could have a bit more information...what kinds of testing did you have for example? And what are your worst symptoms? Are you currently taking any meds/supplements?

    It would also be helpful to know what part of the world you are coming from since treatment options vary a bit by country.

    Ema
  3. lansbergen

    lansbergen Senior Member

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    If you have ME it is important not to overdo. Stay within your limits.

    You have an idea but do not say what that is. Brainfog or do you want us to guess?
    MeSci and Valentijn like this.
  4. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    I"m sorry you are struggling. Are you in the UK? There are lots of people on here from there who can guide you about doctors to see and how to work with the healthcare system.

    Do your parents not believe you are sick? Can you give them some literature to read? Have them look around this forum

    I can't imagine how frustrated you must be. When you have clear moments, write down your action plan and ask for their help. If they can't/won't, look for ways to accomplish it on your own.

    Minks
    Fogbuster likes this.
  5. taniaaust1

    taniaaust1 Senior Member

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    Are you trying to treat your symptoms? If not, what are your worst ones?

    What abnormalities have been found in your tests? Do not trust drs to tell you if there was any abnormalities, too often they do not mention them. If you havent seen or got copies of all your tests you've had done, first plan of action would be to get copies of them from your doctor(s). Try to get all the tests which seem to be relevent to your case done.

    Second action plan would be to treat your symptoms (yes this isnt getting to the bottom of things but this can help you to feel more comfortable). Focus on getting the top couple of symptoms which bothers you the most treated first. Something like being able to get a goods night sleep is important. This action plan includes finding the right specialists for you!! Keep seeking till you can find those who help or do more tests you need.

    Third plan of action would to formulate a plan to work on your overall health and improve it and hopefully help other things which are affecting you and your ME/CFS eg things like methylation protocol, 23andME and then running your raw data into genetic genie to look for methylation issues etc ... can be quite useful. or just experimenting with one of the methylation protocols (thou one can tailor things better if you know what areas you have issues in).

    Do not over do things and make yourself worst.
    aimossy likes this.
  6. overtrain

    overtrain Medical Mafia needs to die via this virus.


    Jamie, welcome. I can relate to not quite knowing what to do, & the brainfog. The thing that finally helped me feel on track, at least somewhat, was to notice the times I felt less bad. I tried to be aware of what made me feel better in any way, whether physically, emotionally, whatever. Then I'd try to bring more of that in.

    For a while it was dark chocolate. For a long time it was just saying no to socializing, no to any kind of stress. Often it was last-minute cancellation of appointments. It was going to Goodwill as my main in-person connection to the world. For long stretches it was no to doing yet more research on CFS/ME and yes to watching trashy youtube flicks.

    I notice you mention "toxic atmosphere" and wonder, as for many of us, there may be a way to ward off or lessen immediate stress. Part of that for me was refusing to engage in conversations with people about my illness unless they knew what they were talking about. We all have that right, whether with relatives, doctors, strangers.

    Good luck. There is hope. :)
    greebo likes this.
  7. Fogbuster

    Fogbuster Senior Member

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    Thanks so much for the responses :) . Not quite sure how to respond to everyone all at once but shall do my best.

    Ema - Thanks for spreading positive vibes. I am from the UK and have had various tests; I'll highlight the most important results. I've had a gut fermentation profile and a comprehensive stool analysis which showed both SIBO and Candida overgrowth. High Uric acid levels and high levels of Lysozyme (inflammatory enzymes) and lastly various nutritional deficiencies.

    My worst symptoms are brain fog, fatigue, orthostatic intolerance and this constant wired, buzzing full body tingling feeling accompanied with flashy vision, which I have constantly. Its a feeling of being constantly uncomfortable and out of balance. What aggravates this feeling is caffeine, dehydration, gluten, smoking (by far the worst!!), high amounts of sugar. What helps this feeling decrease a little bit is EFT, grounding and chamomile tea and a little stroll in nature.

    All I am taking is supplements for digestion; both enzymes and HCI. I was taking Fluoxetine which I found ineffective.

    Lansbergen - Thanks for the advice. I have a vague idea of my limits, a greater understanding will come with experience.

    Minkeygirl - Thanks for your helpful and kind response. I am based in the UK. Who would be able to best advise me on what doctors to see and how to work with the healthcare system?

    My parents only believed I was sick (to an extent) when I got the diagnosis, so a long time was spent without their support. Its difficult to describe there level of ignorance and stubbornness in words, but unless what their reading comes from a doctor they won't believe it, even if its scientific literature! Nevertheless there's no harm in keeping on trying! Where would I be able to find info for them to read?

    taniaaust1 - I believe the orthostatic intolerance is causing most of the symptoms I experience, which is brain fog, fatigue and this constant wired, buzzing full body tingling feeling accompanied with flashy vision. Apparently, there were no abnormalities in my blood work for liver function etc etc done by my GP, apparently Im a healthy boy! HA!

    Are you suggesting I ask my doctor to print out all my test results so I can show them to a more qualified ME/CFS specialist?

    My most troubling symptoms are orthostatic intolerance and brain fog. I have only just recently attempted to treat my orthostatic intolerance symptoms which have improved quite a bit, just by increasing my salt and water intake. So positive news! I attempted for well over a year to get rid of my brain fog by continuously attempting a diet called the GAPS diet to improve my gut dysbiosis. I couldn't get past the first stages and essentially got know where. I put this down to orthostatic intolerance and my autonomic nervous system putting my body in a constant sympathetic nervous system state, thus affecting my enteric nervous system, being the gut, preventing any form of healing from occurring. So, I believe the brain fog won't be gone until I am able to get rid of the dysbiosis and fully manage my orthostatic intolerance.

    overtrain - I completely agree with you. I have done this and its been quite effective in helping me recognise what could help me and give me that much needed lift when i'm in my most foggiest of days. Dark chocolate was one of them for me too! The problems for me is I cant really engage in conversations with people, which is DEEPLY frustrating and something which hurts me to my very core. This is because I have a pretty good knowledge of health and just want to explain to my friends and family in an easy to understand way about how to help me but also help them understand why I feel the way I do. So as a result we'd all be reading from the same crib sheet so theres some cohesion in understanding; so for example when I asked to be referred to joe bloggs or whatever they dont look at me like some hypercondriac.

    That didnt take long to write....:lol:

    Best wishes
    Jamie
    peggy-sue likes this.
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Fogbuster

    Tagging people, as I did for you above, is a good way to reply to people as each person you tag will get a notification.

    Best wishes,
    Sushi
    Last edited by a moderator: Jul 31, 2014
    Fogbuster likes this.
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Hi, Jamie,

    You seem to have some good ideas already: treating the gut and avoiding over-exertion and stress.

    I'm sure there must be a shortish piece somewhere written by a knowledgeable doctor (who are few and far between) (Dr Myhill's site, perhaps?) that you could print to give your parents, but in the meantime there is this non-medical leaflet that provides a good summary.

    There are supplements that some people find helpful but others don't, e.g l-glutamine, N-acetylcysteine, Co-enzyme Q10, carnitine and alpha lipoic acid.

    Vitamin and mineral supplements are a good idea. If you have malabsorption from the gut, you can take some supplements in different ways, e.g.sprays. There is lots of info on this site; maybe someone else can point you to a good place to look.

    I know that some people swear by HCl, but others, like myself, believe that their guts are actually too acidic, and I take sodium bicarbonate to try to neutralise the lactic acid that we overproduce from exertion and mental overactivity. Impossible to be sure that it helps, but when I tried reducing my dosage my symptoms got worse.

    I know how frustrating it is when you get brain fog and can't explain it, so I produced a little info sheet to give to people. The text is below, and people are welcome to modify it any way they want:



    rosie26 likes this.
  10. SOC

    SOC Moderator and Senior Member

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    Fogbuster~
    Just tossing this out because you are in the UK where "CFS/ME" diagnoses are given for all kinds of conditions that are not the ME/CFS most of us recognize....
    Are you sure you have ME/CFS as defined by the CCC or ICC? You don't mention PEM (aka PENE), which most experts and patients consider a hallmark symptom of the ME/CFS. PEM/PENE is not simply fatigue, but a post-exertional exacerbation of many symptoms including flu-like symptoms and exhaustion.

    There are a some treatable conditions which also have fatigue, OI, and brain fog as symptoms. It would be a serious shame if you had a perfectly treatable condition that was being ignored because someone slapped the CFS label on you too soon.

    It's possible that you have a primary OI for which treatment could eliminate or reduce fatigue, dizziness, brain fog and other symptoms. Of course, SIBO and candida overgrowth must also be causing you problems, but both can be treated.

    What I'm getting at is: I wouldn't accept a "CFS/ME" diagnosis too easily, especially in the UK where it seems to land you in a no-test, no-treatment place in the medical world. At the very least, given your symptoms, I'd fight for testing for forms of OI -- POTS, NMH, etc. Treating the SIBO/candida should be on your treatment list, too, if they're not already.

    To be clear -- I'm not saying you don't have ME/CFS. You very well could, but I sincerely hope you don't because it's a hard life without loads of hope for return to full health. I'm simply suggesting that you follow up on some other possible diagnoses before you let them saddle you with "CFS/ME".

    I'm sure other members can come up with a few other tests that you might be able to get through the NIH that might clarify the situation.

    If I were in your shoes, I'd do my very best to get across the channel and see Dr K De Meirleir in Brussels. He does lots of testing and could rule in or out ME/CFS (as most of us understand it). He's also tops with gut issues (in ME/CFS or otherwise) which might be helpful to you there as well.
    Fogbuster and Ema like this.
  11. Fogbuster

    Fogbuster Senior Member

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    Thanks Mesci, I know my fair share about gut issues but would greatly appreciate if you could point me in the direction of someone (if there is anyone) whose had experience or knows how to treat gut issues whilst having OI, which is very destructive from my experience when trying to heal the gut.

    Thanks also for the info sheet, I shall print it out and use it when in my foggiest of moments! I will also have a look around Dr Myhill's site, but again my parents don't have the intellect to think for themselves even if it is factual information. They have to hear it come from the kind of "conventional" Dr who suggests taking an antidepressant and "pacing yourself" will slowly alleviate you of your ME/CFS symptoms. Sad but this is my reality.

    Thanks for the advice about supplements, I have enough supplements to start my own health food shop!

    May I ask how your doing?

    Best wishes
    Jamie
    peggy-sue likes this.
  12. Fogbuster

    Fogbuster Senior Member

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  13. Fogbuster

    Fogbuster Senior Member

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  14. Fogbuster

    Fogbuster Senior Member

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    Thank you for being so helpful. No, I completely understand about why you have reservations about whether I have ME. I can't be sure whether my diagnosis was made via the CCC or ICC, just by a doctor who has quite alot of experience with CFS/ME. Quite simply I don't experience PEM, unless as a primary result of my OI being exacerbated. I hope this means I won't be treated like an outcast within the forum?! :eek::)

    I concur, I believe the OI could well be the primary cause. I have been solely trying to sort out my gut issues but found no relief of my symptoms after months upon months of restrictive dieting. The worst of my symptoms being le Brain Fog was not relieved at all, except only for extremely short periods of time, being a couple of minutes per month. I've learnt that the autonomic nervous system is connected to the Enteric Nervous system, so I believe my exacerbation of symptoms from my OI (not being managed) could of been the reason I was not making any progress on the GAPS diet.

    Im going to see a cardiologist in about 6 weeks to look at my orthostatic intolerance and how it can be managed.

    FYI I have been tested for rheumatoid arthritis and Lyme disease. What other tests should I try and get on the NHS?

    Best wishes
    Jamie
  15. Fogbuster

    Fogbuster Senior Member

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  16. WillowJ

    WillowJ Senior Member

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    hi Jamie, welcome to the forum

    have you been evaluated for migraine with aura? (not everyone gets a headache with migraine)
  17. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    Fogbuster Maryb is from the UK so maybe send her a PM. I'm not sure offhand who else is from the UK.
  18. Fogbuster

    Fogbuster Senior Member

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    Thanks minkeygirl, just in case you didnt realise I sent you a response as part of my big response!
  19. Fogbuster

    Fogbuster Senior Member

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    Thanks Willow. I actually attribute those symptoms with my OI. Not that Im completely discrediting it, it just doesn't seem likely.

    Best wishes
    Jamie
    WillowJ likes this.
  20. minkeygirl

    minkeygirl Is Jim Jones alive and well on PR?

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    I saw it thanks! I had to use FIND on my computer to get to it. I have problems reading when there is a lot of text.

    It looks like you are on your way.

    Mink

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