The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Discussion in 'Post-Exertional Malaise, Fatigue, and Crashes' started by Catjbro, May 12, 2016.

  1. Catjbro

    Catjbro

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    Hi

    I haven't been diagnosed with Cfs but a specialist told me I have mitochondrial dis function and methylation problems. Anyway I know both of those are Cfs related do thought I must have similar issues as you.

    I do not have the flu like symptoms but I am exhausted - it's like a crushing weight. I've had this for probably 20 years and was told it was adrenal fatigue, which I do also have but could never mend them. I've pushed thru life and run on adrenaline. Now that I know I have to rest the crash is overwhelming physically, emotionally and mentally and spiritually. Someone else is typing this for me. I can't say more than a few words it's so exhausting. My brain is stuck like it just ran out of energy. I have a ton of anxiety and am severely depressed. I can't function but have to because I live in a group home and they think I'm just depressed and make me do things like meals, showers etc. The scary part is the crash is still getting worse I think cause the adrenaline is slowly leaving me body. I feel like I'm dying at times like my organs are shutting down. If I've pushed for 20 years, have I ruined my body past being able to heal it. Anyone else feel like this. I also have this wierd jerking in my solar plexus when I wake in the morning. I have tinnitus and other problems. I can't handle how overwhelming the exhaustion is so I panic and feel a bit better from the adrenaline after. How do I handle this??
     
  2. Catjbro

    Catjbro

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    Sorry I forgot to mention the mental exhaustion and fog are so bad I cannot read, watch tv, do hobbies or crafts or listen to radio. I'm going crazy. What do you do when you are like that? I lay but cannot sleep during the day. It gets scary when all of s sudden it's like the bottom drops out and there is nothing left for energy, may adrenaline leaves or something but I cannot function at all. Again I panic and adrenaline comes on. Any idea suggestions help appreciated.
    Cathy
     
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  3. Catjbro

    Catjbro

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    1 more question. I'm exhausted yet I can't rest. I keep needing to get up then I realize I can't stand and lay back down but so restless to do something. It's all overwhelming. Part of me is telling myself to relax and another part is frantically looking for answers. And I know I should try and meditate or do relaxation but there is this huge resistance to it for some reason.
    I'm looking for any suggestions or ideas or thoughts.
     
  4. rosie26

    rosie26 Senior Member

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    Yes there is a lot of resistance. I find listening to music with head phones on helpful. Because things are so loud in your head with over active thoughts, you need some noise that will compete with it and calm your mind down slowly. Make sure you are drinking plenty of fluids throughout the day.

    I'm sorry you are experiencing all this.
     
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  5. Catjbro

    Catjbro

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    Thanks Rosie26

    Where do I start when even thinking is pushing?? I really need help cause I have no idea what to do. I would appreciate hearing from others that have crashed after years of pushing. And how they started the road to healing. To be honest I want to die this feels so horrific and continues getting worse.
     
    Last edited: May 12, 2016
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think many of us have felt that and then, with some good treatment, discovered that we can heal--maybe not fully, but enough to have a livable life.
    I know I have had this experience a lot. It is much better now, but I still get it occasionally. Yes, it is scary, feels like dying, but somehow we don't die and most of us get over each episode.
    I know it may sound like an oxymoron, but I think you need good medical help. You have medical problems and the right doctor (or combo of them) could help you start healing. I doubt if I or anyone else could point you to this doctor or that because what works for one, doesn't work for everyone or even most.

    But we can send you our good wishes and encourage you not to give up, to keep looking, and looking. You will find help.
     
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  7. Catjbro

    Catjbro

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    Thanks for that. The dr I saw has started me in some supplements for mitochondria but says can take a year to start working. I need to know what to do with myself in the meantime. Even thinking or moving my toes is exhausting. How do u get energy when everything you do takes energy??
     
    Last edited: May 12, 2016
  8. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    From what I have read and experienced, that may not be deep enough, comprehensive enough treatment. Firstly I'd think you need some thorough testing to see what is going on.
     
  9. Catjbro

    Catjbro

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    Can you be more specific? I've had all blood work done. Everything normal. I do have referrals to cardio and endo but here in Canada that can be st least a year wait. I know from a DNA test I have a GSTT1 deletion so he put me on glutathione. I've had adrenals tested again and still low cortisol but nothing seems to work and they won't put me on HC. Anything else I should be pushing for?? I'm open to any suggestions. I'm very overwhelmed. I wanted to get the testing done they Dr Myhill but she's not taking any new patients or interpreting lab results.Thx again.
     
  10. Catjbro

    Catjbro

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    You know the dr did only run the routine tests and cortisol, etc. Is there any specific blood work I should be asking for? I can't get in to see the CFS specialist because I need s referral from my family GP and she won't give me one so I'm working with an integrative medicine GP. Thx again.
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    That is often the problem. We have normal results for the usual blood tests a doctor would run, but we may have quite abnormal results when less common tests are run. I see an ME/CFS specialist who does in depth testing. Here is a link to a document created by @Hip--it might be a helpful guide.
    Chronic Fatigue Syndrome A Roadmap for Testing and Treatment
    I didn't realize that you were in Canada. I think most of us who see ME/CFS specialists pay out of pocket and generally they don't require a referral. From what I've heard (Canadians chime in please!) finding a good ME/CFS in Canada is just about impossible. A number of Canadians on this forum have had to see doctors outside the country. This, of course, can be a financial difficulty.
    Have a look at the roadmap--one thing to take note of there is the extensive pathogen testing. Immune and gut testing can also be important--by gut I mean microbiome as many/most of us have problems there.

    But, thorough testing is also important to eliminate other possible diagnoses.
     
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  12. Catjbro

    Catjbro

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    Yes, while we have free healthcare, accessing what you think you need is sometimes impossible. Thanks again for your help.
     
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  13. Skippa

    Skippa Senior Member

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    Hi, I have been there many times.

    Feeling trapped between hyper and hypo, not being able to rest, not being able to do activity.

    I can give you a glimmer of hope... Things can and will change. Hopefully you'll fluctuate out of the current rut at some point, that's all I can say, others around here are better at the treatment kinds of things.

    Re the solar plexus thing you mention, it's just a hypnogogic jerk. Nothing to worry about. The bodily link between sleep and awake causes it. It's scary and uncomfortable, but not harmful so you can stop worrying about that one. In my opinion. Of course I'm not a doc.
     
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  14. Catjbro

    Catjbro

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    Is your jerk in a.m. Or when you are falling asleep? I googled hypnogogic jerk and it says it's when you are falling asleep. Mine is when I'm waking up and I also do this wierd thing for a couple hours in the morning where I dream bizarre stuff while I'm awake and jerk.
     

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