1 Year Post Glandular Fever - Fatigue Still There

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    I had Glandular Fever at the end of August 2015, and was incredibly fatigued after.
    I missed a lot of school, my attendance was between 30-40% and whilst I still did A Levels, I only got BCD and am now resitting them at tech/college (and doing an extra one)

    I've been in and out of doctors, originally I was told post viral fatigue, and all my blood tests came back fine. Second opinion I was sent to a cardiologist who seemed to dismiss me and say I was fine and nothing was wrong, just post viral.

    It's over a year later, I'm seeing a different GP who has retested me and has said nothing in bloods. I seem to now be lactose intolerant, and the new GP is waiting until I've seen the mental health team so he can rule out side effects of my ADD meds as the cause for my symptoms, and then he will refer me with the possibility of looking into other areas - I think fibromyalgia was mentioned? but he hopes it won't come to that.

    I know what CFS/ME is but in Northern Ireland there isn't a specialist or anyone with any knowledge who could diagnose me!

    On good days, at the end of the day I feel like I'm tired after having a busy day even if I haven't. On bad days, I struggle to get out of bed, walking even small distances seems to drain me and I feel lethargic and like my legs are heavy and everything is a lot of effort.
    On inbetween days, I can cope, but it is feeling like I'm doing everything on 4/5 hours sleep.
    When I push myself too much, I can get extremely painful migraines which can last 2/3 days, I have one atm which came on Tuesday night and I was at the point I was so tired I wasn't sure where I was at times, my fingers went numb/fell asleep and my eyes wouldn't focus. I've not had a migraine so bad in a long time.
    My feet and hands are always cold, my feet especially will go blue even with thick socks when it's very cold.
    I want to be in tech/college, I want to get my A Levels finally and get into a good uni of my choice, I want to be able to see my friends and not feel drained.
    I currently am not getting any treatment for symptoms or fatigue, I've tried changing my diet but when things are bad I crave sugar or something to give me some energy. I have a horse, and have had to find sharers so I only see him 3 days a week, and it can go from being easy and enjoyable to a chore because I feel so exhausted and worn out doing simple tasks with him. I also seem to ache all over for no reason, my skin will break out horrendously when I'm tired.

    It is frustrating. Mentally, I am frustrated rather than depressed and I'm not avoiding college because I don't want to go, but because physically I feel like I can't despite mentally wanting to be there. I want to be sporty and doing things, but I can't always do it. It is so, so frustrating, especially as I seem to be getting nowhere with doctors or any help. College can only do so much because there is no diagnosis!
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    Oh, Northern Ireland's NHS is rubbish, isn't it? :console:

    When I first read this, I thought perhaps anemia might be an answer, but if your bloods are coming back fine, then that could be ruled out. It is possible your ADD meds could be doing it, although I think your GP is right to let your mh team assess that.

    Have you been sent for any scans/xrays?
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    (Original post by remarius)
    I had Glandular Fever at the end of August 2015, and was incredibly fatigued after.
    I missed a lot of school, my attendance was between 30-40% and whilst I still did A Levels, I only got BCD and am now resitting them at tech/college (and doing an extra one)

    I've been in and out of doctors, originally I was told post viral fatigue, and all my blood tests came back fine. Second opinion I was sent to a cardiologist who seemed to dismiss me and say I was fine and nothing was wrong, just post viral.

    It's over a year later, I'm seeing a different GP who has retested me and has said nothing in bloods. I seem to now be lactose intolerant, and the new GP is waiting until I've seen the mental health team so he can rule out side effects of my ADD meds as the cause for my symptoms, and then he will refer me with the possibility of looking into other areas - I think fibromyalgia was mentioned? but he hopes it won't come to that.

    I know what CFS/ME is but in Northern Ireland there isn't a specialist or anyone with any knowledge who could diagnose me!

    On good days, at the end of the day I feel like I'm tired after having a busy day even if I haven't. On bad days, I struggle to get out of bed, walking even small distances seems to drain me and I feel lethargic and like my legs are heavy and everything is a lot of effort.
    On inbetween days, I can cope, but it is feeling like I'm doing everything on 4/5 hours sleep.
    When I push myself too much, I can get extremely painful migraines which can last 2/3 days, I have one atm which came on Tuesday night and I was at the point I was so tired I wasn't sure where I was at times, my fingers went numb/fell asleep and my eyes wouldn't focus. I've not had a migraine so bad in a long time.
    My feet and hands are always cold, my feet especially will go blue even with thick socks when it's very cold.
    I want to be in tech/college, I want to get my A Levels finally and get into a good uni of my choice, I want to be able to see my friends and not feel drained.
    I currently am not getting any treatment for symptoms or fatigue, I've tried changing my diet but when things are bad I crave sugar or something to give me some energy. I have a horse, and have had to find sharers so I only see him 3 days a week, and it can go from being easy and enjoyable to a chore because I feel so exhausted and worn out doing simple tasks with him. I also seem to ache all over for no reason, my skin will break out horrendously when I'm tired.

    It is frustrating. Mentally, I am frustrated rather than depressed and I'm not avoiding college because I don't want to go, but because physically I feel like I can't despite mentally wanting to be there. I want to be sporty and doing things, but I can't always do it. It is so, so frustrating, especially as I seem to be getting nowhere with doctors or any help. College can only do so much because there is no diagnosis!
    Try to push for an MRI scan - likely to be more helpful than a cardiologist!

    My mum had glandular fever in her 20's - said she never felt the same after that and was eventually diagnosed with MS in later life.

    Don't be fobbed off - keep pushing till someone takes you seriously and sorts this out for you.

    Good luck
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    (Original post by Airmed)
    Oh, Northern Ireland's NHS is rubbish, isn't it? :console:

    When I first read this, I thought perhaps anemia might be an answer, but if your bloods are coming back fine, then that could be ruled out. It is possible your ADD meds could be doing it, although I think your GP is right to let your mh team assess that.

    Have you been sent for any scans/xrays?
    don't start me - I could go on a rant about it all day, and generally it's not the GPs and the nurses who have helped me that's the problem, it's all been the 'big fish' so to speak

    my bloods are all fine, iron count is really good and thyroid has actually improved over the past year.

    I've been on the same meds for years, and never had any problems. They have increased, but I don't find it believable that if I'm taking these meds every day, fatigue isn't there to the same extent every day - I've also never had a problem with them causing fatigue or anything close to the symptoms I am having now. I may have to change them anyway as I think there's lactose in the coating, and whilst I've not been diagnosed as lactose intolerant, doctors have told me to continue on an exclusion diet as I've found I'm not as bloated and don't have as bad an upset stomach when I have little-no dairy in my diet (I think I actually have IBS rather than lactose intolerance - but it's all developed in the past year)

    Not been sent for any scans at all. The most recent I've had is for an old/recurring knee injury which the x-ray came back as fine, saw a private specialist consultant as I couldn't walk properly and couldn't wait for weeks who suspected a torn meniscus, then after the MRI it came back that my knee was fine and there was wear and tear and some cartilage deterioration, but no tear or anything worrying. It doesn't help with being active as it can be excruciatingly painful, and whilst I am seeing a physio and it's not as sore, it still clicks, pops and when I don't see my physio every week I end up in agony. Consultant did say that the deterioration could sometimes be a sign of anaemia, but my bloods had been done a week earlier and results said that my iron levels were very good and anaemia has been definitely ruled out.
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    (Original post by remarius)
    don't start me - I could go on a rant about it all day, and generally it's not the GPs and the nurses who have helped me that's the problem, it's all been the 'big fish' so to speak

    my bloods are all fine, iron count is really good and thyroid has actually improved over the past year.

    I've been on the same meds for years, and never had any problems. They have increased, but I don't find it believable that if I'm taking these meds every day, fatigue isn't there to the same extent every day - I've also never had a problem with them causing fatigue or anything close to the symptoms I am having now. I may have to change them anyway as I think there's lactose in the coating, and whilst I've not been diagnosed as lactose intolerant, doctors have told me to continue on an exclusion diet as I've found I'm not as bloated and don't have as bad an upset stomach when I have little-no dairy in my diet (I think I actually have IBS rather than lactose intolerance - but it's all developed in the past year)

    Not been sent for any scans at all. The most recent I've had is for an old/recurring knee injury which the x-ray came back as fine, saw a private specialist consultant as I couldn't walk properly and couldn't wait for weeks who suspected a torn meniscus, then after the MRI it came back that my knee was fine and there was wear and tear and some cartilage deterioration, but no tear or anything worrying. It doesn't help with being active as it can be excruciatingly painful, and whilst I am seeing a physio and it's not as sore, it still clicks, pops and when I don't see my physio every week I end up in agony. Consultant did say that the deterioration could sometimes be a sign of anaemia, but my bloods had been done a week earlier and results said that my iron levels were very good and anaemia has been definitely ruled out.
    Yeah, it is pretty rubbish, I know from experience

    Definitely see if you can get an official diagnosis for the intolerance/IBS, and then ask to be referred for scans and another MRI. Tbh, it sounds ridiculous. Sooner you get on waiting lists, the better, especially for N.Ireland
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    (Original post by Anonymous)
    Try to push for an MRI scan - likely to be more helpful than a cardiologist!

    My mum had glandular fever in her 20's - said she never felt the same after that and was eventually diagnosed with MS in later life.

    Don't be fobbed off - keep pushing till someone takes you seriously and sorts this out for you.

    Good luck
    I'm hoping that the GP I'm now seeing will take it more seriously, as he's already mentioned Fibromyalgia (I think??) which sounds more down the right track for ME/CFS which I know is linked with Glandular Fever and PVFS. He won't do anything until my psychologist who is also crap and has seen me twice in 2 years, despite being on meds that need to be monitored every 3-6 months and doesn't believe in adult ADD, has said that it's not side effects though. If psychologist takes me off my meds I think I'm going to complain, because I was diagnosed with ADD aged 16 and have never received any help with how to cope with it, or the social anxiety thats come with it, and my keyworker dismissed me over summer as she hadn't really been able to do much. When I was with child and adolescent services they seemed to be 10x more on the ball. I honestly don't think it's my meds as when I run out or take a weekend off them as they can make me nauseous/low appetite which is normal for them, I don't suddenly seem to have no energy and be my old self and I think I actually end up more tired. But I guess it has to be ruled out so the GP can then also push harder by saying he has ruled everything else out.

    The cardiologist was absolutely crap, why I was sent to him for a second opinion when all he did was take bloods and refer me back to the doctor for results, and say there was no need for him to look further and fatigue was normal, I have no idea. Found out later he was a cardiologist, and what was more worrying was he completely dismissed the fact my feet and fingers go blue and told me it was normal and nothing to worry about!
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    (Original post by Airmed)
    Yeah, it is pretty rubbish, I know from experience

    Definitely see if you can get an official diagnosis for the intolerance/IBS, and then ask to be referred for scans and another MRI. Tbh, it sounds ridiculous. Sooner you get on waiting lists, the better, especially for N.Ireland
    The doctor has basically said due to how it's diagnosed, he can't really 'test' for it but coeliac tests came back fine, and all he can really recommend atm is an exclusion diet. I think his focus is on the fatigue and other problems I'm having at least, and I think he suspects they're all linked which I wouldn't be surprised with too.

    I don't even know what they would be doing another MRI for, we went private for the knee scans and I think I have something like my kneecap moves out of place and thats where the pain comes from. Essentially, it's not broken enough for them to fix it, but I can't run or do too much on it because it causes it to really flair up. I was going through the revolving doors at tech the other day and something went pop and I couldn't put any weight on my knee, and now it's swollen and achy. My goal is to at least try and break it so it'll be fixed atm, because as it is it looks like I'm going to have to live with a knee that doesn't work. I'm an active person, I want to start playing women's rugby and exercise is meant to help with fatigue conditions, but I can't. I've been able to start horse riding again, but I'm really limited in what I can do because riding in shorter stirrups for a long period of time (and I feel more comfortable/ride better shorter) aggravates it. Horse has been helping me try and break it and has thrown me onto my bad knee twice and stood on it about 9 weeks ago, lol, but all that's happened is I still have a huge, grey bruise and it was actually x-rayed when I went to minor injuries as a precaution but there was nothing wrong, it was just a big bright purple hoof shaped bruise. It sounds stupid and backwards that that's what I have to do, but I've been told exploratory surgery isn't advisable and MRI's are so accurate that unless it was obvious, it's a waste of money to try another MRI on my knee. But then that's off track from the fatigue.

    Whilst mum doesn't have enough money for private treatment, my parents are divorced and I think my dad either has a private plan or he just simply can afford it so often for referrals for things like MRI's we'll go private as I've had experiences before where I was told I would need an MRI, and the referral was made only for the MRI people to cancel it without informing me. Last time it happened we found out 12 weeks after we'd been told it was made, and already had gone private because I was in a lot of neck pain with strange nerve sensations, and they'd cancelled it because I wasn't deemed as 'urgent' or someone who actually needed an MRI in their eyes.
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    I have recently (a month ago) been diagnosed with glandular fever, as well as liver dysfunction (hepatitis), enlarged spleen and i just had tonsilitis too. I had just started university and thought it was just 'fresher's flu' but after fighting it for 6 weeks I found myself not eating or moving for a week, and vomiting up anything i did try to eat. i then came home to go straight to hospital and ever since then i've got better. My uni tutors are advising that i restart the year as i have missed the end of this term, but I reaaaaally don't want to wait until next september! I resat year 12 so i really don't want to delay my dream job (teaching) for any longer. can anyone help or have any advice?? either on ways to get back to uni in january or quick ways to recover from this horrible illness! I'm worried i'll relapse again
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    (Original post by Airmed)

    Have you been sent for any scans/xrays?
    scans of what?
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    (Original post by Airmed)
    Yeah, it is pretty rubbish, I know from experience

    Definitely see if you can get an official diagnosis for the intolerance/IBS, and then ask to be referred for scans and another MRI. Tbh, it sounds ridiculous. Sooner you get on waiting lists, the better, especially for N.Ireland
    Scans of what, and why another MRI?
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    (Original post by haprybeingright)
    scans of what?
    I was just asking a general question, to see what kind of tests she's been given. Poor girl sounds to be in a lot of pain.
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    (Original post by haprybeingright)
    Scans of what, and why another MRI?
    I'm fairly sure Airmed was talking about scans and an MRI of my knee.
    I am in a lot of pain due to my knee atm, after my horse stood on me in August and threw me through the wooden jump stand. Given I am now finding walking quite painful, amongst other things, it looks like I'll most likely be getting more scans. My physio has said she'll be surprised nothing is damaged after having a horse stand on my knee.
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    (Original post by lifeguardswimmer)
    I have recently (a month ago) been diagnosed with glandular fever, as well as liver dysfunction (hepatitis), enlarged spleen and i just had tonsilitis too. I had just started university and thought it was just 'fresher's flu' but after fighting it for 6 weeks I found myself not eating or moving for a week, and vomiting up anything i did try to eat. i then came home to go straight to hospital and ever since then i've got better. My uni tutors are advising that i restart the year as i have missed the end of this term, but I reaaaaally don't want to wait until next september! I resat year 12 so i really don't want to delay my dream job (teaching) for any longer. can anyone help or have any advice?? either on ways to get back to uni in january or quick ways to recover from this horrible illness! I'm worried i'll relapse again
    my biggest advice to you is to rest up now. I wish I had rested properly, instead of trying to push myself when I was sick, as I think that's what's led to my fatigue. Taking a year out and restarting is much, much better than the stress, worry and struggle of making yourself even sicker trying to do things whilst you are fatigued and still recovering.

    I resat my GCSEs, and am now resitting A Levels again so I will be 21 when I finally get to uni. It's not a big deal, my health comes first. I have had to drop out of college due to the awful days I had (9-5, with 2 hour classes and no break inbetween, an hour for lunch, and then class for 2 hours 45mins, as well as an hours travel there and back, and having to be in by half 8 every morning) and am now having to teach myself and do it as a private candidate. It's hard, but I am hoping I'll be able to do it.

    Don't push yourself too hard, not everyone who has had glandular fever will have bad fatigue, but your body has been put under a lot of stress and although you may be 'better' in that you're over the illness, you still need time to recover and to be functioning on 100%. my biggest mistake was continuing as normal and trying to function on 100% far too early, when really I was on 40% or 50% and doing far too much.

    I've been going back and forward to GP, who is treating it as CFS/ME now it seems, but as exercise is one of the biggest parts, my knee is now holding me back.
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    (Original post by lifeguardswimmer)
    I have recently (a month ago) been diagnosed with glandular fever, as well as liver dysfunction (hepatitis), enlarged spleen and i just had tonsilitis too. I had just started university and thought it was just 'fresher's flu' but after fighting it for 6 weeks I found myself not eating or moving for a week, and vomiting up anything i did try to eat. i then came home to go straight to hospital and ever since then i've got better. My uni tutors are advising that i restart the year as i have missed the end of this term, but I reaaaaally don't want to wait until next september! I resat year 12 so i really don't want to delay my dream job (teaching) for any longer. can anyone help or have any advice?? either on ways to get back to uni in january or quick ways to recover from this horrible illness! I'm worried i'll relapse again
    I'm in an almost identical situation!! started uni the last week of September this year and 2 weeks later I had serious freshers flu which made me miss a few days of uni.. I recovered from this then about a week later I came down again with what seemed like freshers flu... GP gave me antibiotics for tonsilitis and told me to curl up under a duvet for a few days... my throat got so bad I couldn't eat or drink atall or swallow the antibiotics so 2 days later I was taken into A&E where they took bloods and gave me IV fluids, steroids and antibiotics and admitted me overnight for obs as apparently I was tachycardic when I went in... got the results back the next day which showed Glandular Fever! never ever been so ill in my entire life... literally the worst I've ever felt.. my bloods showed that I had the whole enlarged liver and spleen thing aswell so I haven't been allowed to drink or do sport for 8 weeks! It's been 5 weeks now and my attendance at uni has plummetted to about 30%... I feel exhausted most of the time and seem to be getting every cold going. Some days I'll wake up and feel okay and I'll head in for my lecture then I'll end up feeling totally exhausted from walking to uni and everything that it'll take me a solid 3 days to recover... other days I just dont have the energy to leave my room atall.. I've been back to my GP once since with cold symptoms and feeling constantly tired and she basically said theres nothing they can do, I just need to completely rest... i can cope with having a mild cold but any other advice on how to get over the constant tiredness? I really don't want to fall too far behind on my course and my social life at uni has completely vanished
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    oh my god! that's terrible! i stayed at home for 5/6 weeks just recovering and doing nothing. now having to catch up with that work over the holidays but i'm so determined to go back! i would recommend getting sooooo much rest - to the point of boredom - or it'll come back to haunt you. even if you feel fine, go back to bed. vitamins have really helped me so make sure you're taking tonnes of vitamin c and any others! i hope you're better soon x
    (Original post by Espero247)
    I'm in an almost identical situation!! started uni the last week of September this year and 2 weeks later I had serious freshers flu which made me miss a few days of uni.. I recovered from this then about a week later I came down again with what seemed like freshers flu... GP gave me antibiotics for tonsilitis and told me to curl up under a duvet for a few days... my throat got so bad I couldn't eat or drink atall or swallow the antibiotics so 2 days later I was taken into A&E where they took bloods and gave me IV fluids, steroids and antibiotics and admitted me overnight for obs as apparently I was tachycardic when I went in... got the results back the next day which showed Glandular Fever! never ever been so ill in my entire life... literally the worst I've ever felt.. my bloods showed that I had the whole enlarged liver and spleen thing aswell so I haven't been allowed to drink or do sport for 8 weeks! It's been 5 weeks now and my attendance at uni has plummetted to about 30%... I feel exhausted most of the time and seem to be getting every cold going. Some days I'll wake up and feel okay and I'll head in for my lecture then I'll end up feeling totally exhausted from walking to uni and everything that it'll take me a solid 3 days to recover... other days I just dont have the energy to leave my room atall.. I've been back to my GP once since with cold symptoms and feeling constantly tired and she basically said theres nothing they can do, I just need to completely rest... i can cope with having a mild cold but any other advice on how to get over the constant tiredness? I really don't want to fall too far behind on my course and my social life at uni has completely vanished
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    (Original post by annabelsmith12)
    oh my god! that's terrible! i stayed at home for 5/6 weeks just recovering and doing nothing. now having to catch up with that work over the holidays but i'm so determined to go back! i would recommend getting sooooo much rest - to the point of boredom - or it'll come back to haunt you. even if you feel fine, go back to bed. vitamins have really helped me so make sure you're taking tonnes of vitamin c and any others! i hope you're better soon x
    Thankyou so much for the advice! I think the whole uni life doesn't help aswell with living in loud uni halls and the typical student diet and everything! I defo regret staying at uni and trying to push myself into atleast one or two lectures a week instead of coming home to just completely rest. Thankyou! Hope you're feeling better too and catch up with all the work! Atleast Glandular Fever is one of those that doesn't cause symptoms again 😁
 
 
 
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