Long term consequences of Glandular Fever
Posted , 14 users are following.
I'm a twenty three year old woman. I have been sick with Glandular Fever for almost four months. All symptoms still present with no improvement, sore throat, swollen glands, fatigue and muscle pain. I got a diagnosis quickly as my best friend had Glandular Fever so I knew to ask for the blood test. While she has returned to full health (guess who infected me and made me sick due to her carelessness) I am not getting better. Unlike some people whose stories I've read, I have not been bed bound and have continued working without informing my employers of my illness. However, living with this disease has made my life a daily struggle. Anytime I'm not working I am resting in bed. I hardly ever socialize anymore and spend most my time alone. Even before I became ill, I never drank or smoked, and I ear healthy. However, I am worried about developing Chronic Fatigue or MS as I am not recovering. I am afraid in the long term I will lose my job to this disease if it becomes a chronic illness. I have been to GPs and they can't tell me how long more I'll be sick or if I'll get better. I fear that I missed my only window of recovery because I continued to work and didn't quit my job when I was originally diagnosed. I'm now facing the prospect of being sick for the rest of my life. And the thought of that makes me wish I was dead.
1 like, 142 replies
gee29819 sickanon
Posted
Nooooo. I'm so sorry.
Do you have PEM? That is, do you feel worse after exercise, a day later? Also, how's your sleep?
sickanon2 gee29819
Posted
It's hard for me to comment about PEM. I feel tired all the time, and I suffer aches /pin&needles tingling even when I haven't been physically active (both in the day itself and the days before hand. ) I haven't had any trouble getting to sleep.
craig07920 sickanon2
Posted
Things are going to get better Sick Anon....I still truly believe that for you so don't want you to be hard on yourself or feel like there is no hope today - there is lots of hope still - even if you can't see it from your angle at the moment, I can see it from this angle - there is light at the end of the tunnel just hang in there and take it one day at a time. Thinking of you!
Craig
sickanon2 sickanon
Posted
Thanks again for all the supportive messages. I have been talking with family and friends about yesterday's diagnosis. The general consensus at the moment is "that is one doctor's opinion." I have made an appointment with my own GP for this Friday. (The person who originally diagnosed me with Glandular Fever and has been my family's doctor since I was a child.) I am going to get his opinion, and if he believes that CFS is likely, I will ask him for a referral and see the specialist in Galway. So far, he has described me as having "Post Viral Symptoms" but seemed reasonably confident I would recover. However, thst was around the end of July/early August, so I'm not sure what he'll say in light of all this. As for whether I have improved or not over the months is hard to say. In my head, I have all of my original symptoms, so I would say no. However when I was talking on the phone with my boyfriend about all this, he maintains that I am not as unwell as I was in the beginning. So for now, I'm going to try and hold off from panicking until Friday's appointment. I'll keep you guys posted.
craig07920 sickanon2
Posted
Hey Sick Anon,
I think the doctor who said 'post viral symptoms' is absolutely right, this is the confusion I think between CFS and post viral symptoms - what most people go through with glandular fever is post viral and they do make a full recovery, even though it can seem like it takes such a long time. You're family and friends are right, it's just one doctor's opinion, and I believe many doctors don't fully grasp the difference between post viral and CFS, and just write people off in ignorance without taking the time to consider the circumstances and understand how glandular fever can affect you.
Yes do keep us posted and don't panic, I know it's hard but there is hope!
Craig
40with.gf. sickanon2
Posted
Hi sickanon,
Your family and friends are right, it is only one doctors opinion and by saying to you that it's CFS, that has to be so crushing and really not fair when you feel so rubbish, we need people to believe in us that we are getting better.our mind is a powerful thing and I so believe that can make us better. Tell a child they are naughty all the time and they will believe it and be naughty, tell them they can achieve anything in life and they will, Craig is right when he says you should tell yourself you're going to get better.
I was was reading a website yesterday called the bodymindprogramme who have coached people back to health from fibromyalgia and me/CFS illnesses. Who now live normal lives and are better. It just shows that you can get better.
ive just got back from a swim today and that really helps me, I just feel so normal in the pool, makes me feel so good, must release good endorphins! It was on holiday in August that I went for a swim, I was so nervous but pleased I took the plunge.... It just felt a bit easier than walking the dog!
also, the people around us can probably see us improving better than we can.
Definitely don't panic, because whatever they want to call this virus you will recover. Believe that will happen.
Good luck Friday xxx
sickanon2 sickanon
Posted
40with.gf. sickanon2
Posted
Yes, the tingling came on back at the beginning of my illness, it has gone though now. Maybe sometimes if symptoms come back a little or I'm overworked I can feel a tiny bit hummy (only when I'm completely still) but not much at all now.x
Mono_too sickanon2
Posted
I had this for months, it is going away now, I think it felt like an internal shakiness, this feeling began to get lighter and lighter and is now gone for the most part, I had a minor relapse in July and I had it again at that time but not as bad as the first six months.
craig07920 Mono_too
Posted
Hey Sickanon,
Yes I was the same when I went through the virus.....I had lots of strange feelings of tingles and pins and needles - I couldn't understand what was going on at the time but it is clear now that it was part of the symptoms of the virus, and in particular the post viral phase you are going through - so this is nothing to be worried about (although it is unpleasant unfortunately), and it definitely will pass over - it's only temporary.
Craig
sickanon2 sickanon
Posted
Appointment went well. My usual doctor is still adamant I will make a full recovery. Spoke with him, and he also had another doctor in the practice (who is knowledgeable about GF) go through my case with me. They explained what's the most likely cause of the pins and needles (it's related to GF) and believe it will go in time. Doing blood tests next week to make sure that there's nothing else. They said that they'll monitor me over the next few months. I feel a huge sense of relief. Thank you everyone for all your support over the last while!
craig07920 sickanon2
Posted
So pleased that your appointment went well today and that you are feeling relieved about that - hope that it takes a weight off your mind. You definitely ARE going to recover....so hang in there and just take things slowly and each day at the moment. Thinking about you still!
Craig
40with.gf. sickanon2
Posted
Hi sickanon, this sounds silly but that just made me cry! I am so so pleased your doctor has told you that, we need people to believe in us that we are getting better! Mind power helps in recovery too (I believe that)
im having amazing days.... Been swimming, walking and feeling really normal (I do however have a gland up in my neck and a white spot on my tonsil which aren't giving me bother) I'm about two months on from you and I can see I'm getting better!! It's so gradual but I feel much better.
hugs
caroline xx
Mono_too sickanon2
Posted
Hi Sickanon,
?I first became sick at the end of October last year and am just starting to feel better, I actually went on a small boat cruise with my office last night, the first time I have been able to participate in an office activity and feel normal. The last two weeks have been pretty good for the most part. I still take it easy as I don't want to have a relapse but finally progress, it will happen for you too.
craig07920 40with.gf.
Posted
40with.gf. Mono_too
Posted
Hi mono,
thats brilliant, we are getting better!! Can you actually believe it!!?? It's such good news...sickanon, it's only round the corner now for you.
xx
40with.gf. craig07920
Posted
thanks Craig,
i can't quite believe it, it seems just to good to be true! I just pray I keep,going as good as I have been doing. I'm not back at work or had an evening out but I'm sure that's not long away?? I'll take good days for now! X
sickanon2 craig07920
Posted
It definitely takes a huge weight off my shoulders to have that kind of reassurance and support. Thank you and everyone on the forum for your encouragement and advice. This illness can be such a lonely and isolating experience, it makes a big difference being able to talk to others who are/have been going through it. Hopefully, I'll make a steady recovery from here on out!
sickanon2 40with.gf.
Posted
Ahh that's very sweet of you, I felt very emotional myself in the doctor's office this morning. (I nearly started crying too to be honest. ) It's amazing what a big difference a bit of empathy and patience from a doctor makes! I'll keep you all posted. Glad to hear about your improvements, it's very encouraging! Hopefully you and everyone else will feel better again soon!
sickanon2 Mono_too
Posted
That's great news! Good to hear that you're starting to feel more like yourself again. Now that I'm back at home and not working, I'm going to rest and make my health/recovery my number one priority. Hope you and your daughter feel better soon!
40with.gf. sickanon2
Posted
That's brilliant news sickanon - to concentrate on yourself! you are the most important, health is everything. Work will be there when you're ready again. Enjoy being home seeing as that's the way it has to be right now. I have my mum over everyday to help me.
Just go steady. I'm sure it will happen soon.
😀 X
Mono_too sickanon2
Posted
I am sure it will help to be off work, one thing the virus teaches you is how to take good care of yourself, a lesson for all of us. My daughter has worked the whole time and I think that is why her recovery is longer, she has had a few good hours here and there and that is how it starts. I would never have thought I could feel better, but the last week or so I really started to feel better. I still rest though.
Mono_too 40with.gf.
Posted
I cant believe it either, almost one year with this miserable virus! I am so happy to be able to do a few things, I am still resting though.
40with.gf. Mono_too
Posted
Yes, I have to stop and rest and consciously think I need to stop. I'm just waiting for a low, but still being positive and maybe thinking that won't happen again!
x
craig07920 40with.gf.
Posted
Thinking about you all still today....hoping that today can be a good one for us all I know it's been such a hard time for everyone.
Craig