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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Weird syndrome

Discussion in 'General Symptoms' started by kaffirlime, May 14, 2017.

  1. kaffirlime

    kaffirlime

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    Hello!

    I haven't been here for several years, but felt like coming back. I don't know what my syndrome is all about, it's really weird. I've had lots of different symptoms: neurological symptos, sympathic nerve hyperactivity, too much adrenaline, anxiety & panic attacks, derealization, fibromyalgia-like symptoms (I get pains if I stay still and movement helps), digestive problems and IBS, insomnia, tinnitus, headaches, exhaustion, psychiatric complaints, dysphoria & mood swings & irritability, mild hypothyroidism, circulatory problems, dementia-like symptoms, cognitive deficits... I am trying to figure out what to do next... it's been so many years. I feel my nervous system is messed up in the fight & flight mode. I might have some kind of autoimmune condition, but the big joke is that it can't be seen, and is believed to be of psychiatric origin by the doctors (which ofcourse is an important effect in the whole matrix of life, but also because they cannot diagnose these symptoms with their tests).

    I have tried lots of supplements over the years with little effect... I was taking hydrocortisone some years ago for a long time, now I take lowish dose thyroxine only (was on Armour but it didn't solve my issues). I used to stay at home for years doing nothing but it didn't solve my problems and I got deconditioned. Now I've pushed myself to walk, at least it helps getting things done. I can't see myself getting bedridden again, because it causes it's own problems. I need to take psych meds for my severe insomnia, I wouldn't like to, but I haven't found anything else that would help. Also take an antidepressant, because my affect got extremely labile. Walking keeps me sane, and I need the physical connection.

    I have been experimenting with pentoxifylline and piracetam, I do like them, pentoxifylline has improved circulation a little, so have cold showers improved my heat retention. Have done heaps of vitamins as well, and still do, more or less. Now into reishi, ashwagandha and ginkgo biloba once again.

    I had hs-CRP which was normal, because I was thinking about low-grade inflammation. Maybe it's energy stagnation. But it is also brain problem. I have been very desperate to find some solutions, but the causes and mechanisms are still unknown. Maybe it's a stress-related disorder. I have become very difficult person also because of these symptoms, find it hard to focus with people.

    Thank you for reading !!

    Kaffirlime
     
    mirshine likes this.
  2. Basilico

    Basilico Florida

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    Hi @kaffirlime ! This is a good place to look for suggestions of things to try, directions to take. Many here are in the same boat as you.

    You may have tried these already, but in case you haven't, maybe something worth looking into: selegiline, inositol, a good probiotic protocol (there are many threads here with information on what people have used). Have you ever tried a TENS unit for your fibromyalgic pains? I don't know if it would help, but maybe something that could provide occasional relief. How is your blood glucose control? My husband was getting severe adrenaline attacks that have mostly subsided now, and making some changes to his diet to prevent glucose drops was one factor for him. I wrote about it extensively on this thread: http://forums.phoenixrising.me/index.php?threads/how-to-cope-with-overload-of-adrenalin.50381/ But there are other threads on this topic that might also be helpful.

    I hope that you are able to improve your symptoms and find some relief...it's hard to deal with so many issues at once.

    I also did cold showers (and ice baths) years ago. They didn't help with my health condition, but they did help my temperature regulation. Lately, I've been thinking about trying some kind of infrared heat/sauna treatment. There are many threads about that on here. Have you ever tried that?
     
  3. kaffirlime

    kaffirlime

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    Hello Basilico! Thank you so much for your reply!!

    I haven't tried selegiline, inositol I tried briefly long ago as far as I remember. Probiotics I should take better ones yes. I have made my own probiotic cultures in the past as probiotic juices or yoghurt.

    My glucose seems to be slightly elevated, my HbA1C was 5.8 last time (which is still within the range though, but I feel it's mildly impaired?). I try to eat during the daytime and eat less during the evening hours. But it's still possible that I get hypoglycemic too.

    I get a sweet smell in my armpits when I get stress reactions, kind of smell of sickness?
    Now my tongue color changes have subsided, I used to get tongue changes from stress,
    which I believe had to do with cortisol systems.

    Infrared sauna would be good as well. I have been to Turkish and ordinary sauna though.
    TENS unit and acupuncture pen helps a bit with the pain, thanks for reminding me about it - I should do it more often. Sound frequencies also helped in the past. I am also considering 23andme genetic testing.

    Thank you again for your thoughts!!
     

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