Looking to connect and not feel so alone..

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Hi everyone, hope I'm posting this in the right section. My name is lexi, 27y/o. When I was 16 and doing my gcse's I would regularly get so so exhausted and only be able to attend the lessons that were essential & commonly slept for long periods. This carried on periodically however mum put it down to being a teenager as did I, also having a learning difficulty ment i was mentally shattered also. At 19 I contracted Swine Flu and was hospitalized. The tiredness continued but still very periodically and infrequently. During my Alevels and collage I had a part time job in retail and also worked In several bars in town on the weekend whilst loving and going to the gym regularly. 3 years ago I started full time work in a bank/administration and it was around this time that almost monthly I would become wiped out, only for a few days where I'd be unable to concentrate, have what I call 'brain fog', become very emotional and be exhausted. I'd also get a deep itching also like my bones were itchy however itching would not satisfy this. Blood tests revealed I have neutropenia (low white blood cell count) and thus the checking for any and every disease possible began to find the cause. No cause has been found, I am under active monitoring however have been for a year and they have concluded it's ideopathic (no known cause, it's just how it is)

Hematology don't believe that this would cause me the symptoms I was/am experiencing(concentration issues, tiredness ect.) which prompted the blood tests. I then tried a contraceptive to try & even out how I felt as this symptom pattern seemingly monthly I thought may have been hormone related. I have seen a gynecologist with no explanation or diagnosis and I've also seen an endocrinologist again with every test coming back as normal. About 7 weeks ago I started hitting a wall of tiredness daily in work where Id be physically unable to concentrate also with neck pain and back aches and this almost painful exhaustion

I'd have to somehow make it home then go straight to bed at 6pm to be able to get up for 7am. My attendance dropped as I'd be too tired to get up. On the weekend I'd sleep from Friday thro till Sunday to be ready for another week. 3 weeks ago I had to go to the DR as I couldn't cope with how I was feeling, I have been signed off initially with depression and have been on citalopram however the Dr has recognised that depression is a result of my fatigue and loss of brain capacity and the ability to do anything. I tried to go back to work yesterday, was in 4 hours and I couldn't concentrate or remember how to do my job and was shattered. Today I am shattered and can't concentrate for too long on anything. I have had to take breaks writing this. I find it hard to find the right words sometimes or explain what I mean.

I wanted to share my story because I feel really alone at times and like my life is doomed. I have been avoiding and putting off even entertaining the idea of ME for so long as I've WISHED it's anything but, but there's nothing. There's no other explanation or test result that shows anything. My Dr yesterday gave me a booklet of CFS. I'd welcome any comments from anyone please. I feel massively bad I'm not in work and just a general let down :////

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  • Posted

    In the months leading up to the last 7 weeks I'd also wake up feeling absolutely shattered and like I'd had no sleep at all sometimes and this would be accompanied by the neck ache mainly. I've been offered CBT and my work is being so understanding but I've just got so depressed as I used to be so so active (gym 4 days a week/rep for colleague work group/nights out with friends)

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  • Posted

    I had to comment on your post as so much of what you wrote rings true to me too. I think it's so easy to feel lonely and isolated with CFS. I really struggle to maintain my very small friendship group and often find myself going along to things that have been arranged, knowing fine well that I don't have the energy for it, just to try and keep up some sort of social contact. I'll then pay for it for a week or 2 afterwards. It's like you can never win! I think that's when online contact can be good. It's not the same but it's definitely better than nothing and can help you to feel connected, which is so important.

    For the past 3.5 years that I've been struggling with CFS (although I've only recently accepted that this as a label), I've tried to maintain my life the way it was. This meant that all of my energy was spent trying to maintain my job. I have a professional career that is very stressful and emotionally demanding and I would spend all of my free time recovering from my time at work. Looking back, I wish I'd prioritised my health because now that's what I'm having to do and I think I've made things a lot worse by trying to keep going. I'm now signed off sick too. I'm in the middle of trying to decide what I'll do. I know I'm going to leave my profession but I'm trying to work out how to do this. It's going to be a financial disaster for me but I've come to realise I need to prioritise my health and my life.

    Through all of my experiences with my health, I've become quite spiritual (not religious but I've started to find meaning in things) and I've come to believe that my illness does have meaning, it's like a little messenger, teaching me something I needed to learn. It's taught me that my needs have never been a priority; they weren't when I was a child (awful parents) and I've just taken that as the way it should be, so I've always looked after others before myself. I've made a whole career out of it! This has just worn me out completely. I'm now learning how to really look after myself and I've still got a while to go. It definitely does not come naturally to me. Even when I'm doing all the self care things, like yoga, meditating or even having a bath, my thoughts are not mind and gentle, they're pushing me to do things because I 'should' do them, it's good for me, it will help me get better, rather than just being kind and caring towards myself.

    I think I'm maybe rambling but what I'm trying to say is that focusing on you is most likely exactly what you need to do. I truly believe that deep down we all know what we need but sometimes it's hard to stop and listen. And sometimes we don't like what we hear! Once I stopped and listened, I heard that I needed to just STOP and I needed to have space and time to process my childhood experiences and express all my repressed emotions. I knew this meant leaving my job. I heard all of that about 2 years ago but thought I couldn't do it, I didn't have time, I needed to keep my job, I needed to keep myself together, I couldn't stop working because I needed the money. I thought, I'll do it when I retire (about 30 years away!) It took me 2 years and so much more things to go wrong to finally realise that this wasn't a choice! I NEEDED to do this. So that's what I'm in the midst of just now.

    I'm not saying this is the same for you but what I am encouraging you to do is to do what you need to and really look after you. And if you think it's not possible, it is, you're maybe just stuck in your thinking.

    Good luck! X

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    • Posted

      Thank you for your reply. I've had alot of stressful events happen in my life and have always pushed and fought and dealt with them, when I finally got my full time job and started off really well (awarded a business award, various nominations) I finally felt able to leave my past behind and push on with a career and then I was hit with all the periodic symptoms I'd had over the years almost all at once and I just couldn't fight anymore and it's mentally destroyed me at the moment.

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    • Posted

      Yes I will often turn down social events and activities and have done in the past as I've felt I'd just get too tired and when I get tired I can't construct sentances properly and find the words and this in turn makes me feel stupid and embarrassed as people who knew me before knew me as a professional young female who had aspirations and goals and was bright and clever.

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    • Posted

      I feel I have been somewhat the same as when I was younger and my parents split, I became the emotional support for my mum and brother without me realising, and absorbed alot emotionally from them. I've also always put others before myself and been overly susceptible as to how they are feeling which has been demanding on me too. Sometimes I question myself and ask is this all in my head am I actually just going mad because I can't accept this is what I have and I guess I'm still in denial about alot of it because I don't want it to be reality I just want it to go away.

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    • Posted

      You're definitely not going mad! You've just reached your threshold, which by the sounds of it, it's way more that what many could cope with. Are you like me in that you're a classic over achiever and always trying to prove that you are worthy?

      This just leaves you having to choose with more and more. Sometimes being able to cope with a lot is worse because it just mounts up. Could you afford therapy? I've been working through all this sort of stuff with a therapist and it's really helping me to make sense of it, work through all my old feelings and stop the endless cycle that's breaking me. I can't actually afford it really but I'm just seeing it as a necessity.

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    • Posted

      yes yes and yes!!!!!

      Constantly wanting to achieve and prove and show im worthy. my family are all high achievers whereas I have an LD which makes it really hard for me and i didnt achieve the grades they and all my frr=iends did, didnt go to uni like they all did so have constantly felt like im runnning from behind to make everyone proud of me and be accepted which is why i think i ignored my symptoms for so long and just pushed through them until actually i was doing harm to myself. I don't know where I'd start if I spoke to someone, I feel I've sorted it all out in my head mentally, however I wonder if in me being stubborn and not accepting i may have needed that (in order to appear 'fine' and like everyone else around me), it has actually make me physically unwell.

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  • Posted

    Hey,

    May i start by saying i hate the term CFS. Myalgic Encephalomyelitis (ME) is much more accurate in my books and in conversation is often received differently than "Fatigue Syndrome" because people don't often understand the severity of the condition.

    I got diagnosed as i finished school. I am very lucky to live next to one of the best medical research facilities in the world down here in melbourne Australia and have a very supportive CFS/ME specialist. I believe it came to me from me chronically exhausting myself. I was training hard in Jeet Kune Do and do an accelerated learning program in senior school, whilst also playing video games. I often starved my self of sleep and didnt allow myself relaxation time apart from video games. It all caught up and just hit me like a truck one day.

    My CFS/ME was accompanied by severe IBS, i suddenly become Fructose and Lactose intolerant and had chronic diarrhea and GERD for close to 6 months, which still comes back in spells. My doctor explained that ME/CFS is a neurological inflammatory disease which can impact upon the communications between the body, IBS being typically the body not communicating with the colons correctly. I also have many others symptoms such as Arthritis, Muscular Pain and obviously debilitating fatigue.

    I kind of lost my self through all this, i couldn't do a single thing i enjoyed. So i made an effort, i applied for a special circumstances online university course and achieved my degree in herpetology. I currently breed Australian Reptiles out my home as my active income and practice Jeet Kune Do water exercises as pretty much my only form of exercise.

    Recovery is slow but happening after 5 years, i think being hopefully is a key too it.

     

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    • Posted

      Hello, thank you for your reply. I agree very much with that. I would imagine (I say imagine because I havent spoken to many people about this at all, I'm waiting for GP appointment tuesday and a referral - I have come online to connect as I'm very anxious about how i will be perceived as i was previously a completely different person till this impacted me) that in convosation people may pick up on the word 'fatigue' and think of just tiredness when it is so much more.

      Like you I was previously very active. I have had IBS, i also avoid Gluten and processed foods and try t keep sugar down if I can. I previously lived on my own but have been staying with mum for the past month and have been signed off wok. I feel my mental capacity has taken a hit too with my short term memory being dodgy, also my speech is definitely slower than it used to be and i find it hard to find the right words for things sometimes. I am hoping this is temporary!!!!

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  • Posted

    I'm so sorry that you are having such a difficult time, Lexi. CFS/ME can be such a depilating illness and not a lot of people have a good understanding of what we are going through. 

    You're not alone. I completely understand how you are feeling. You life is not doomed. I think you just need to find a way to pace yourself, so that you are not feeling completely overwhelmed and exhausted all the time. When I was first diagnosed, I had a full time teaching job. By the end of the day, I had to drag myself to bed only to go to sleep early and start the day over again. I spent my entire weekend resting up for the following week.

    I finally had to make a change. I ended teaching part-time instead. This allowed me to go home mid day and get the right amount of rest. Part of recovery with CFS/ME is learning how to pace yourself. Think of yourself as having a battery that never fully charges, so you must use the energy you have saved very wisely. Getting the proper type of sleep is also so critical. I take a tricyclic anti-depressant at bedtime to help promote REM sleep. So many of us are exhausted, but can't actually fall asleep. This helps with sleep. 

    I hope that you can find some ways to slow down, regain your health, and accept the "new" you. Hope you feel better and remember you are not alone. Karen

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    • Posted

      Hi Karen, thank you for your reply. 

      I've found this forum really comforting, if thats the right term?!, in the fact that I can now see here are others out there who expeirence similar things to me and that it's not just me and my head. For so long I questioned wether I was just being silly and lazy so would power through and remember going through a stage or drinking 3/4 energy drinks a day to allow me to do things. When your symptoms stop you from doing the things you enjoy you do realise that it's not just in your head however!!

      I am currently on an SSRI anti depressant as got to a point 4 weeks ago where everything hit me at once and all the symptoms ive had over the years all came back and for about 8 weeks before, I wasnt concentrating in work, couldn't keep up my flat work as lived on my own, sleeping every weekend all weekend, losing contact with friends. I've been signed off work since, attempted to go back on Wednesday on phased return, managed 9-12 hen had to sleep for the entire rest of the day and have been in bed pretty much since then. I've never had it this bad before however im slowly accepting that in order to get better, I cannot keep fighting whatever it is and that I have to relax and not worry. 

      Yes i find this with trying to sleep too, i have to move something and it's nomally m foot, i end up tapping it on the bed. I find that i crash in the day, this was happening in work to the point where i used to almost be in physical pain with how tired  was but it's a different type of tired, it's no normal. I now crash in the day however it's for longer and I cannot stay awake, i have to sleep and when it comes its such a deep sleep I struggle to wake up from it, and it's never refreshing anymore, I never feel like I've slept. Also been getting neck tremors, tiny jerks in my neck when I'm laying down at night, trouble organising my thoughts, my speeech is noticably slower and i find it hard to find the right words for what i want to say smetimes, does any of this sound familiar? This is all so new to me and it feels like ive been plunged into this new life i know nothing about and thats why it's 'comforting' to know im unfortunately not the only one ://///

      Lexi x

      Lexi

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  • Posted

    You're welcome, Lexi. I know there is not much we can say or do to relieve your symptoms, but I agree it helps to know this is not in you head. The fatigue is so overwhelming at times that it is painful! I just want to cry sometimes. And it is very sad that we never wake up feeling refreshed as we once did. I long for that so much. I am just thankful  on the days when I wake up without the intense brain fog that I often experience. Hang in there and just keep trying to pace yourself....take in slowly. Hope you begin to feel a bit more in control of your symptoms soon. Karen

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  • Posted

    Hi I havent been here for a while.  I came because I have a relative who has suffered CFS for four years and wanted to find out more.   His recent experience might, I repeat might be helpful for some sufferers.  I realise that this illness seems to have many presentations and symptoms so it may not be helpful to you.   He has started taking a supplement to support his adrenal system after seeing  a doctor who is a specialist in thyroid treatment who suggested this.  So far it has made a positive difference to his condition and the tiredness as subsided.  It upset his stomach quite badly though so he cut down the dose by half.   His stomach is another one of the problems and he sticks to a strict diet - basically NO SUGAR.  He takes pro biotics to help with his stomach too.  Hope this helps you.  
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