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Topic: Glandular Fever.

21 posts, 0 answered
  1. Johnny_
    Johnny_ avatar
    28 posts
    19 December 2019

    Hello everyone,

    Firstly I’d like to say thankyou for the stories you have all shared on this site which have helped so many people get through the days, weeks, months and years.

    Recently i too have read your stories as I too didn’t know where to turn.

    I am a fit an active person who is always on the go and have lived a healthy lifestyle.

    About 12 weeks ago, I had a ear/throat infection that cleared up within two weeks while taking antibiotics. About 6 weeks ago, I suddenly felt tired during a gym workout.

    I went home and rested for the remainder of the day thinking I was just tired however I woke up in the morning exhausted and with a little to no appetite. I had muscle aches and was just fatigued.

    I rested the next day too and since I was not getting better I went to the doctor the following day.

    After numerous tests (bloods/ecg/xrays) blood tests showed I recently had glandular fever. (Possibly about 12 weeks ago when I was sick) and was advised to rest rest rest.

    Since then I have very slowly had a little bit of energy to do the normal domestic duties around home and walk for 20min twice a day.

    In the last week I managed to return to work on light duties however today I crashed...like I am back to square one! I just want to cry and it feels like I am not getting better.

    i look at the changes in my body and it just upsets me...the weight I’ve lost is shocking and I don’t know what to do.

    over this time I’ve experienced anxiety which was scary and relied on your stories to get me through and advise me on how to cope...and .it worked so I saythankyou.

    i guess if anyone has a glandular fever success story, it be great to hear it.

    I’m hoping this isn’t chronic fatigue syndrome as I’m scared it is as I don’t know how I’d financially support myself. I’d like to go back to work as I enjoy it.

    thankyou for reading my post.

  2. Flowertop
    Flowertop avatar
    41 posts
    19 December 2019 in reply to Johnny_

    Hi Johnny

    This sounds really hard for you, understandably and especially since you were so active, so you must be missing that as well

    I guess you just have to listen to your body and do as much as you can. I hope you have someone looking after you or people that will do things for you so you don’t have to over exert as I know that makes things work.

    Hang in there and I hope you get well soon.

  3. Johnny_
    Johnny_ avatar
    28 posts
    19 December 2019 in reply to Flowertop

    Hi Flowertop,

    thankyou for your message. yes it’s been terrible...I’d give anything just to be normal again or just to be able to work.

    I don’t really have anyone helping around home but I am doing things in an smart way to only use small amounts of energy.

    again, thankyou I’m holding in there:)

  4. Matchy69
    blueVoices member
    • A member of beyondblue's blueVoices community
    Matchy69 avatar
    2347 posts
    19 December 2019

    I to had Glandular fever,i was about 18 y.o and it really knocked me back,i was like you with no energy really struggled to do anything even stopped seeing my friends.I was still living at home and had my parents support.I dropped out of TAFE and just stayed at home for months.It would be a couple of years later i would get a job as a builders labourer but still strughled with that.I am 50 now and still feel the effect of having glandular fever.I am a carer for my special needs kids and they wear me out.

    Hang in there and hope things improve for you.

  5. Johnny_
    Johnny_ avatar
    28 posts
    20 December 2019 in reply to Matchy69

    Hi Match69,

    thankyou for your reply and sharing your story with me. You have certainly been through a tuff time yourself.

    Its so debilitating far more than I thought it would be and progress is so slow too if any at all right now.

    thanks again

  6. Flowertop
    Flowertop avatar
    41 posts
    20 December 2019 in reply to Johnny_

    Hey Johnny

    Just wondering if you woke up feeling rested at all, if you haven’t just go with it. It is awful that impeding feeling of doom when you know you want to get up and do things but you just can’t. We take our activity and jobs for granted.
    Have you tried anything to make you at least feel relaxed like those meditation apps, won’t make you more energetic but could relieve the angst that goes with it.
    I have known a few people that have gone through what you have and I think there would be thousands in the same situation. It is pretty silent because it makes you isolated. I don’t think people really understand what it is like.

    Is your weightloss because you have no appetite or it is too much effort/exhausting to shop, prepare food and eat.
    Are you able to reach out to friends/family for support with household stuff. I just know that rest and nutrition will aid your recovery.

    It was good that you managed to get to the point to trail back at work. Hopefully you will get to that point again soon.

  7. Johnny_
    Johnny_ avatar
    28 posts
    20 December 2019 in reply to Flowertop

    Hi Flowertop,

    I appreciate you reaching out to check on me. Thankyou:)

    I had 7 hrs uninterrupted sleep which is my norm but woke up much the same, still very fatigued. I am doing meditation though and that seams to help so I do that at various times of the day as it settles me.

    I’ll admit, the aches and tingling are not as intense as yesterday since using a cold pack across my forehead so I’m doing that on and off too.

    the people you know that went through it, do you know if they relapsed at all? and did they get past it in a few months? just curious. I am concerned it’s something else but my blood tests clearly say I had it recently so that what I tell myself too.

    initially the weight loss was because I had no appetite at all so I was force feeding 3 normal meals a day. I did expect to loss some weight as I ate a lot due to my gym training. Atm since this relapse my appetite is mostly still there so I’m managing to eat throughout the day but it tires me a little so a cook in bulk.

    No family nearby but I have friends who will help out if I ask. They are not around the corner but will come if I need them. Atm I’ve just been ordering coles delivery and eating loads of vegetables too.

    I hope to return soon too. Thankyou again for replying.

  8. Flowertop
    Flowertop avatar
    41 posts
    20 December 2019 in reply to Johnny_

    Hi Johnny

    I guess everyone’s experience of this is different. The people that I know all tried different things but I think it’s important you have a good GP who you see regularly or refers you to a doctor that has a real interest in this and can monitor and guide you.
    What I do know is low mood is part of it and it’s like what comes first the chicken or the egg.
    You sound very motivated to do whatever it takes and great you are eating properly.
    The aches and tingles sound relentless but good you have found ice packs give you some relief. Relieving the pain surely helps your body rest and recover.
    It is a good thing that you were able to sleep last night.
    You will get through this.

  9. Johnny_
    Johnny_ avatar
    28 posts
    20 December 2019 in reply to Flowertop

    Hi Flowertop,

    Thankyou again for replying to my message, I appreciate it:)

    My GP actually just went on holidays a couple of days before my relapse otherwise I would have seen her as she is great! I am still following her advice even with this set back as it worked before.

    The low mood is frustrating, crying for no reason multiple times today was just weird but I know I was very physically fatigued at the time so I just went with it and felt a little better after.

    Its crazy how everyone experiences this so differently but in a sense the same in regards to it unpredictability of physical and mental changes.

    i like what you said there, “relieving the pain surely helps the body rest and recover” I honestly never really thought about that and it’s so obvious too. I think this can apply to anyone experiencing these kind of symptoms, thankyou for that.

    I’ll admit, this evening, I feel much better then yesterday and my mood is much better too even though I have a long way to go, it nice to feel better then I did 24hrs ago .

    Thankyou..when I make small amounts of progress it gives me confidence that I will too:)

  10. Flowertop
    Flowertop avatar
    41 posts
    21 December 2019 in reply to Johnny_

    Morning Johnny

    How was your night? Today is another day. It is so hard over Christmas with all the services like GP etc, taking a break. It’s like this with everything over this period. Warning: don’t get a tooth ache on Christmas Eve because there is no help out there for days as a friend of mine learnt a couple of years ago.

    I know sometimes with health, it is 2 steps forward and one step back. It seems cruel especially when you are living it and it can feel that it is more backwards than forward at times.

    You said that you had friends and I believe that connecting with them even for short periods can at least lift your mood. That can be hard especially if you have always run around after them when they come over, but you need to let your friends know that you can’t do that at the moment but company for a short time may be good for you. I don’t know what your family situation is like but we had a friend a few years ago who went through a similar thing and occasionally he would come and stay with us for a few days and I would cook for him and just being around people seemed to make a difference. He mainly rested but when he was up for it we would play cards(nothing too heavy). Just a thought.

    You said you have no control over crying on and off yesterday and you are right just to go with it. That is really hard when you are use to having a lot of control. You have to remember that it is just the illness.
    Hope your day is bearable today and you are at the least comfortable.

    Take care.

  11. Johnny_
    Johnny_ avatar
    28 posts
    22 December 2019 in reply to Flowertop

    Hi Flowertop

    thankyou for replying again:)

    My night was ok as I good a lot of sleep but woke up struggling. I ended up reaching out to my uncle who lives nearby. He’s the only family I have in my city. He came around after lunch and stay for the remainder of the day/evening. It helped a lot. He to finds what I’m experiencing difficult to understand but is here for and will come around again I’m sure.

    you are right, it’s the worst time of year requiring any kinda of medical treatment as everyone is closed it’s also hard as everyone else is enjoying the festivities.

    i have a small bunch of close friends who call and check on me. It would be nice to see them however it’s difficult with their work/family commitments this time of year which I understand.

    its not easy to allow myself to cry and get emotional but I’m not strong enough to fight it but I find it passes quickly. I’m that person who is emotional when I’m really fatigued and tired otherwise I’m ok.

    Atm the constant fatigue is tiring. I also have a tingling sensation on my forearms and face which worries me that this could be something more serious but I try not to think that way, I hope to recover from this.

    thankyou again for your support and kind words. I am trying:)

  12. Flowertop
    Flowertop avatar
    41 posts
    22 December 2019 in reply to Johnny_

    Hey Johnny

    Thank goodness you were able to reach out to your uncle. I know though what you mean about him having difficulty understanding. Years ago my friends sister had something similar and her mother had to help shower her because she was so fatigued and couldn’t do anything. She would of been about 18, I’m guessing. She also lost a lot of weight. My friend would get annoyed with her because she didn’t understand. A current friend of mine who has recently gone through something similar husband also would get frustrated with her. Very unfair. She ended up going and staying with her mother for a few weeks just for some care and she had a young child and her husband worked. I think it can be the same as someone with back pain or any type of chronic pain, I don’t think people understand that either unless you have it. I don’t have either btw, ‘touch wood’. Your uncle sounds like he is trying and great he was there for you.
    My best friend who leaves a plane trip away now to be closer to her grown up daughter, has fibromyalgia. I had not heard of that before her diagnosis and I use to get frustrated with her when we would make plans and she’d back out. This was wrong of me, but I didn’t get how she could be good some days and not functional on others. She has it all worked out now is able to work and function.
    When you said you are one of those people that get emotional when you are tired anyway, I thought, holy moly, this is all you need. My daughter is 20 and is emotional when she gets fatigued as well.
    I think it is ok to reach out to your friends, I know everyone gets caught up in the business of life but you might be surprised. That’s why I think this illness is a silent thing because people just withdraw. I think that is the good thing about social media for some it helps to stay connected.
    You know even if your GP is away you could always go see another in the interim. We also have dial-a doctor where I live and I have heard they are good. The tingling sounds awful, especially if it is constant. They’ll at least be able to check it outs d may be able to give you something or advise how to relieve the symptoms.

    I hope today is bearable and you find some relief. I watched ‘Elf’, last night and that made me laugh.
    Keep going, you are doing great doing what you are doing to get through this.

  13. Johnny_
    Johnny_ avatar
    28 posts
    22 December 2019 in reply to Flowertop

    Hi Flowertop,

    Again I appreciate you replying to my messages:)

    I am a very independent person so as hard as it was, I’m glad I reached out to him. I know he will come over and check on me too.

    i can imagine it would be very difficult for someone to understand looking on the outside in especially if they have never been exposed to anything like that before. Some of these things can be so debilitating.

    I hope your friends sister and your friend have recovered from their situations and are onto a better life now. No doubt you have helped them out just as you have helped me.

    i think I’ve always been this way, it’s just that I’m so tired atm I can stop it as much which it sounds like you can relate as your daughter is the same.

    my close friends know the extent of what’s going on. Initially I didn’t say much thinking I’ll get through it on my own but after this set back I need the support now so I have reached out. I really do hope I get past this, I’m having doubts it’s glandular fever so I’ll see a doctor tomorrow or tuesday. I will look into dial a doctor in my area too.

    the tingling feeling is like anxiety but I’ve never had anxiety before just normal anxious moments..ie first date/public speaking etc but they pass.

    Elf is a funny movie...always makes me laugh. I try to not watch sad movies etc and only happy comedies to help through the days.

    Thankyou! Im doing my best..it’s the hardest thing I’ve been through but I’m trying, thank you :)

  14. Flowertop
    Flowertop avatar
    41 posts
    27 December 2019 in reply to Johnny_

    Hey Johnny

    How have you been and have there been any changes with you health?
    I hope you have been getting some alleviation from the symptoms and were able to enjoy some Christmas quality.
    Sending you positive thoughts.

  15. Johnny_
    Johnny_ avatar
    28 posts
    27 December 2019 in reply to Flowertop

    Hi Flowertop,

    Its great to hear from you:)

    I hope you had a great Christmas and were able to relax and enjoy time with family and friends.

    I’m pleased to say I am doing a lot better then I was before Christmas, i have a bit to go but feeling much better.

    Christmas was quiet but I managed to have dinner at a mates place with his family so it was nice.

    i appreciate the positive thoughts and feel a little more confident that I’m moving forward.

    thankyou :)

    The symptoms are all still there but are no where near as strong and my emotions have settled too.

  16. Flowertop
    Flowertop avatar
    41 posts
    29 December 2019 in reply to Johnny_

    Hi Johnny

    Good to hear you were able to hangout with your mate and their family on Christmas night. That would of taken a big effort. I have found connecting with people can help mood. As long as they are people you want to hang out with and there is no drama. There are some people to be honest I would rather not be around when I not traveling well.

    I had a good Christmas with my immediate family. My son works in a bar and made a few cocktails, yum, so I can’t complain and then played a game that I bought called, ‘‘Qwirkle’. I won the first game. It’s always a bonus to be the winner if you ask me. Oh yeah and I guess as long as you have fun! Ha
    Hope you are getting through each day and sleeping ok at night. The nights seem really long if your not sleeping.
    I continue to send you good vibes and hope that things are moving forward.

    This has been life changing for you especially because you sound like such an independent and active person. We all take our health for granted.

    Take care and I look forward to hear your progress.

  17. Cranberry Juice
    Cranberry Juice avatar
    19 posts
    30 December 2019 in reply to Johnny_

    Hi Johnny

    Always believe there is light at the end of the tunnel, hope you are recovering ok

    Take Care.

  18. Johnny_
    Johnny_ avatar
    28 posts
    1 January 2020 in reply to Flowertop

    Hi Flowertop,

    It has been good to just hang out with close friends these last couple of days as like you said it lifts my mood. Yes! Only I am the same, I only speak to people who are positive and helpful when I am unwell.

    thats great to hear you enjoyed your Christmas with family and had a cocktail or two as well, perfect time of year for it. I’ll admit I’ve never heard of that game before but I have been wanting to buy some board games so I might look into that too. I have been playing chess online which has been good.

    Nights have only improved recently which makes a big difference during the day and my emotions too. I had acupuncture which was great and he gave me some Chinese herbs to help me sleep which I think has been doing the trick.

    thankyou for the good vibes, it’s appreciated. I remain confident that I’ll get through this. It’s hard but with the support I have around me including here has helped far more then I could imagined.

    it appears stress is an element in all of this so I’ll add more balance to my life from here on and relax more as like you said, we take out health for granted.

    thankyou again for your support and happy new year to you too :)

  19. Johnny_
    Johnny_ avatar
    28 posts
    1 January 2020 in reply to Cranberry Juice

    HI Cranberry Juice,

    thankyou for your message of support. it’s hard to see at time as progress is a little bit two steps forward, one step back but with the support around me, I can still see the light at the end of the tunnel.

    thank you again:)

  20. StgCrw
    StgCrw avatar
    13 posts
    7 January 2020 in reply to Johnny_

    Oh yeah, glandular fever can be rough.

    I had it when I was in my early 20’s.

    It went basically as you described but it also caused my liver to fail, to the point that I was suffering severe abdominal pain and jaundice.

    It’s common knowledge that when your liver is crook you can get yellowing of the skin, but they don’t tell you about the itching that comes with it. Every square cm of your skin itches like the worst mosquito bite ever, but particularly on the soft bits of skin in between my fingers, back of my knees, around the neck etc. And this went on for weeks, during which time I was in and out of hospital a fair bit.

    it was at least a couple of months before I was able to return to work and the better part of a year before I was back to 100%.

    I guess the point is that you WILL get better from this, even though it may not seem like it at the moment. Just take it in small steps, look after yourself and you’ll get there.

    Its good that you’ve an uncle nearby you can rely on. Having a third party can make all the difference if things take a turn for the worse and you’re not coping. I ended up staying with family for a couple of weeks (reluctantly) during the worst of it and it made all the difference.

    Here’s to a speedy recovery 👍

  21. Johnny_
    Johnny_ avatar
    28 posts
    16 January 2020 in reply to StgCrw

    Hello StgCrw,

    thankyou for sharing your story, I really appreciate it. I’m sorry you went through a tuff time but glad you managed to get through it, great work!

    its crazy what some people’s experience with glandular is. I’m a little over 2 months in with this. Currently the extreme fatigue has settled a bit and my energy is consistent through the day which is good as long as I spread my meals out.

    I still have a long way to go before I can work again. The one thing I struggle with is the tremors in my arms and legs. I’ve ruled out anxiety but not sure if it’s the muscles being fatigued from glandular or not. I do know when I lay still or I’m well rested I can’t feel it.

    ill head to the drs again and see what they say.

    thanks again for your message of support. I’ve been staying with family for the last week or so which has been nice(bad internet thought) but nice :))

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