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Please help :(

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cath_62662
cath_62662

Hi 

I’m new to this forum and I’m looking for advice or maybe some sort of reassurance !

After having pleurisy a few months ago I was told I had post viral chronic fatigue . Prior to this 

I had an episode where I instantly felt faint , I couldn’t walk , my speech was slurred and I was severely disoriented. I was taken to a&e which  initially was thought I’d have a mini stroke . After numerous trips to the doctor I was told it was post viral chronic fatigue but all my symptoms seem to be getting worse by the day .

I feel so spaced out and disoriented 24/7 and constantly feel faint . Im exhausted every single second of the day and I’m not coping very well with this feeling .

Before the pleurisy I was extremely active and exercised anywhere between. 3/6 times a week as well as taken part in half marathons . But now I can barely manage a short class at the gym .

Does anyone else experience this god awful dream like / surreal feeling ? 

I’ve suffered with anxiety and depression through most of my life and these symptoms aren’t helping my mental health .

It literally feels like im on another planet and I’m struggling to live a normal life .

Any advice would be extremely grateful as I am feeling so so so depressed .

Thanks Cath 

0 likes, 32 replies

32 Replies

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  • Guava
    Guava cath_62662

    Posted

    Hi Cath ,,What supports do you have? <3 Guava

    • cath_62662
      cath_62662 Guava

      Posted

      Hi Guava 

      I have a very supportive family but even with them I’m really struggling . I hate leaving the house as I feel so disoriented when people start taking to me or are within close proximity to me . 

      Is this particular symptom typical of CFS ? 

      Today I’m very faint and unsteady on my feet . 

    • Guava
      Guava cath_62662

      Posted

      Hi Cath , Yes i remember that ,, and still have some fear and focus stuff,, what im about to say will seem controversial , cfs has its spiritual roots in fear it is said . you can google this also. There is a huge awakening happening on earth right now ,, if you are interested ,,google kundalini awakening,, its all about being reborn in spirit. And its a journey in its own right , everything we  think,,every action must be accounted for. <3 Guava

    • Guava
      Guava cath_62662

      Posted

      Dear Cath ,Im glad you have loving support. you will prob need to give up the gym, for recovery, but you will know how you feel after sessions. finding a balance between compassion and moving forward for yourself will be struck eventually ,honestly im still very much working at it all. Take good care smile

       

    • cath_62662
      cath_62662 Guava

      Posted

      Will definitely look that up ! Thanks so much 
  • Innersmile
    Innersmile cath_62662

    Edited

    Hi Cath, i just had to reply to you because this is exactly what i experienced and still experience from time to time. I want you to know that you are not alone right now! The way you described what happened to you i thought you were talking about me! I have chronic fatigue but what causes these strange attacks is called autonomic dysfunction aka dysautonomia.

    Last year out of the blue i started having episodes like you describe. I was having random panic attacks, feeling faint, slurred speech, laboured breathing, noise sensitivity and constantly felt like i was in a dream state. I can tell you, it was a very scary time and i know how you must be feeling right now. I thought i was having mini strokes too and went to a&e a few times but all tests were coming back fine. Doctors were telling me it was just anxiety but i knew that something wasn't right. I wasn't feeling 'normal' anymore and couldn't function like i used to be able to.

    After a year of being in an out of hospital and countless tests i finally saw a chronic fatigue specialist who told me that i had autonomic dysfunction. She explained that my autonomic functions such as heart rate and breathing aren't working as they should because my nervous system is not working in sync with my body. This is often seen in chronic fatigue. For example when we are in danger our nervous system kicks in and releases lots of adrenaline causing us to have a fight or flight response, panic, anxiety, fast heart rate, foggy head, and racing thoughts. When we have these episodes that feel like a mini stroke it's the nervous system that has slowed down our functions down too much which makes it difficult to speak, walk and carry out any tasks and causes us to feel faint.

    I'm not a doctor and i'm not saying you have this but with what you explained it sounds just like it.

    Doctors unfortunately arn't great, they made me feel a lot worse because they were dismissing how terrible i felt, they will tell you it's just anxiety but i believe what you are going through right now isn't just anxiety. Build up a support network online, especially here and we will support you through this while you fight to get a diagnosis. Many doctors aren't very well informed about dysautonomia but it might be worth printing off the symptoms off an official website, highlighting the symptoms you are experiencing and giving it to your doctor. If you have no luck with that try and push to see a CFS specialist.

    Diagnosis was what really turned things around for me. When a doctor explained what was happening to me and i knew they were right it gave me great relief. I do have these episodes you describe still but now i don't panic as much when i have them. If i start feeling any of the symptoms coming on i now i know that it's really important i find a place where i can lay down until it passes. It is still unsettling but when you know how to deal with the episodes it really does help.

    When my nervous system is in overdrive i take a beta blocker to try calm it down. When my nervous system isn't working well enough which causes me to feel faint, breathless and difficulty with speech i know that i need to lay down and make sure i drink plenty of water and wait until it passes. Usually the episodes last around 30minutes and i feel very drained and foggy afterwards.

    There is also a condtition called POTS, have a look up for that on the internet, this also goes hand in hand with dysautonomia. I think i have POTS too but not been diagnosed with it. The CFS doctor advised that i lay flat when i feel faint and i drink 2L of salt water throughout the day preferably celtic or himalayan salt. I can't drink plain salt water so i mix it with apple cider vinegar or you could add lemon or lime. Drinking this throughout the day has really helped to keep my blood volume up and although my symptoms are still there i seem to have more manageable days.

    As i am though i cannot work and some days daily tasks are a struggle but everyday is different. It's about learning to take each day as it comes and preparing for these episodes to happen, listen to your body. If you are not feeling right or feeling really spaced out or faint take extra time to take it easy, lay down if you can, drink plenty of water and eat right.

    Sometimes accepting how bad you feel is the hardest thing to do. Over time acceptance has become easier so stay strong and in the mean time find hobbies and interests that you can manage with your limitations to keep your spirits up.

    Are you working at the moment?

    • cath_62662
      cath_62662 Innersmile

      Posted

      Thank you so much for taking the time to reply to me . I’m in floods of tears knowing that I’m not alone ! I did start to question my sanity at one point as I thought I was going mad .

      Since I had that first episode this disoriented/ surreal feeling lingered but I’d only feel it for a few seconds then it would disappear but as the weeks went by the longer it would last. Now I’m stuck with this awful feeling 24/7. 

      I’ll definelty look into autonomic dysfunction . Hopefully that’ll reassure me even more after reading your reply ! 

      I’m currently not working and I honestly can’t see myself working whilst being in this state . 

      I have an MRI scan booked for next week but feel doctors aren’t helping me as they could so I’m feeling a bit lost . 

      Thank you so so much for replying . I really do appreciate it

      Cath 

    • cath_62662
      cath_62662

      Posted

      Unfortunately this isn’t my only symptom but is the one I’m struggling with the most

    • mary_beth87713
      mary_beth87713 Innersmile

      Posted

      That was the most informative response to that symptom of ME/CFS, that I have ever read. Wish I had seen it a year and a half ago. 😉 Bravo to you for not only explaining, but also helping with a solution. Laying down was the only place to feel safe, yet would feel some guilt of doing so, in the beginning. You rock !!

    • cath_62662
      cath_62662 mary_beth87713

      Posted

      So glad I joined this forum today. Was beginning to feel so isolated. I’m glad I’m not the only one who’s feeling like this .

      Does anyone have any tips or suggestion to ease CFS symptoms ? 

      Thanks so much everyone 

    • Innersmile
      Innersmile cath_62662

      Posted

      Let us know how your MRI goes.

      I understand where you are coming from with not being good enough to work. It's not even easy doing simple tasks around the home is it.

      If you could list all your symptoms what would they be?

    • Guava
      Guava Innersmile

      Posted

      Dear Innersmile, what is your view on this being a spiritual overhaul? <3 Guava. Certainly the ego in many ways is deconstructed!

    • cath_62662
      cath_62662 Innersmile

      Edited

      Yeah sure 

      I have a headache . Constantly . 24/7. In my temples and behind my eyes. I also can see my heart beat pulsating my eyeballs .

      Heart palpitations 

      Ringing in my ears 

      My eyes and ears and incredibly sensitivitive so I find loud or bright places hard to be in .

      I often get sore glands in my armpit

      Extreme fatigue

      I find it difficult to talk at times. I’ll forget words or struggle to finish a sentence . 

      I have this god awful disoriented, Space out , dream like feeling 24/7 and with this I get a strange feeling of ‘impending doom’ may sound a little over the top but it’s such a horrible feeling I can’t think how else to describe it .

      I feel faint so many times throughout the day I lose count .

      I never feel like I’ve actually slept through the night . I’d feel exactly the same the following morning whether I’d slept for 10 or 10 minutes .

      Aches and pains.

      Sorry if this is a bit jumbled up . Not having the best day so find it difficult to read and type 

      Thanks 

      Cath 

    • cath_62662
      cath_62662

      Posted

      I also get very dizzy and have been referred to be fitted with a 24 hour heart monitor as I was having palpitations. All the ECG I’ve had done came back normal .
    • cath_62662
      cath_62662

      Posted

      I know I’ve missed a few off that list. My brain won’t let me think too clearly today I’m sorry 
    • Innersmile
      Innersmile Guava

      Posted

      Hi Guava

      I am a spiritual person and believe that chronic fatigue has definitely shaped my being. I don't believe that CFS is brought on by a spiritual crisis though i think it's the other way round

      Getting CFS has taken my spirit out of my body tortured it, killed it and brought it back to life. My body has been detached, spaced out and struggling to function without my spirit bring in contact. Over time my fragmented spirit is making it's way back into my body and I'm still making sense of it.

      You could call it a spiritual crisis, i do believe that chronic illness shapes us in ways we would never expect.

      If anything has come from this awful illness is that i have gained so much understanding and empathy for people with chronic illness and in my spirit I've become a better person but i'm still broken and finding my way

    • tracy47348
      tracy47348 cath_62662

      Posted

      This sounds exactly like me. Have you been tested for Epstein barr virus? And HHV6? Mine came back positive for being exposed to.
    • cath_62662
      cath_62662 tracy47348

      Posted

      Hi Tracy

      No  I haven’t . To be honest the doctors I’ve seen the past (almost) 4 months haven’t been very helpful . One GP suggest I start one type of medication then the next tells me to stop . It’s been a confusing and frustrating time for me .

      Is it worth me suggesting I have those tests ?

      Thanks so much 

      ❤️

    • cath_62662
      cath_62662

      Posted

      What treatment did you receive for these ??

      Thanks again 

    • cath_62662
      cath_62662 tracy47348

      Posted

      What treatment did you receive for these ??

      Thanks again .

      I think my messages are getting a bit lost in this thread . My apologies . Hope you can see the other reply I just posted 

    • Innersmile
      Innersmile cath_62662

      Posted

      Thanks for sharing your symptoms Cathy. I can imagine many of us in this forum experience the same. I can definitely relate to all of those symptoms apart from the sore glands in the armpit.

      I get horrific migraines. The dizziness/feeling faint and spaced out feeling is the worst for me.

      You are definitely not being over the top in your description! The feeling is so intense it's like being pushed off the edge of a cliff!

    • Innersmile
      Innersmile

      Posted

      Sorry i meant Cath not Cathy
    • Guava
      Guava Innersmile

      Posted

      Hi Innersmle,,,, its definetly an interesting topic,, I also belong to a Kundalini Awakening group and a lot experience similar symptoms etc, <3 Guava, We mu st be born again in Spirit

    • cath_62662
      cath_62662 Innersmile

      Edited

      It’s the same intense feeling over and over and over again every single day. It’s completely draining but I’m glad I’m not alone here ! 

      My headache has been so bad today . I’ve maxed out on painkillers . 

      Hoping for a better day tomorrow . Hope everyone does too ! ❤️❤️❤️

    • james72822
      james72822 cath_62662

      Posted

      Hello Cath I am not sure if you are still active, but the symptoms you have described are exactly the same as mine. I am a 21yr old male and it seems I am on the way to being diagnosed with chronic fatigue. How you have described it is one of the best I have found online and I am so eager to hear how you have gotten on from all this time ago. I am so worried what the future holds as my life is now on pause due to this.

      How are you coping now.

      Kind Regards, James

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