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Glandular fever

114 replies

SunshineCake · 18/09/2021 09:43

I'm about ten days on from diagnosis. Been in bed a week since home from hospital. Got up briefly yesterday. Feeling mentally worse than physically. I want to get up, strip dds bed and put a wash on. Dh is gone for the day dropping off dd at uni. The boys are going out. No one to walk the dog. I won't risk walking her but I'm worried about the risk to my physical health doing too much too soon, doctor said no running for six weeks but I didn't get any other advice, but mentally I'm in a rubbish place and running and getting the house clean would be my usual go to.I'm definitely not run until I'm allowed.

If you've had GF can you tell me your experiences so I can make a judgement please. Thank you.

OP posts:
SunshineCake1 · 14/10/2021 12:35

Thanks everyone.

Just phoned for blood tests. Been prescribed Vitamin D, FHS implies menopause. Cholesterol is 5.2.

I'll go back to staying in bed more Sad but I am accepting you are right. I'm still getting organ discomfort so no choice really.

Replace the word 'exercise' with 'movement'. You are aiming to repeat the same amount of 'movement' each day, without triggering any symptoms. I Have not had this. Always tires me out and or gives me pain. Even folding up six bits of clothes while sat on the floor. I'll read the link.

SunshineCake1 · 14/10/2021 12:49

The second poster said exercise is important even if exhausted Confused

I'm now tucked up in bed.

CloudsOfCeonothus · 14/10/2021 13:12

Good. Keep pushing for regular bloods. Sometimes something crops up, that you can treat to make some gains.

Yeah, she's talking bollocks I'm afraid.

He was so ill and ended up off work for 4 months. Then for a good few years he got every bug and virus going.

Sounds like their pushing on exercising even through exhaustion went well Hmm

You don't just have exhaustion either. You have organ pain. When you get to the mildly tired stage, maybe try a little exercise again.

SunshineCake1 · 14/10/2021 15:29

I feel asleep for half an hour. The other day I arranged to meet a friend on Monday or Tuesday. I really want to so will stay in bed until then but if I'm not at least a little bit better I won't go.

TattoedLady · 14/10/2021 17:17

Hi @SunshineCake1, I saw your comment on the other post (young boy age 9 with post viral fatigue). I just wanted to pop by and say hi and maybe share my experience, offer some support.

Firstly though, just reading through your posts - GF can cause your spleen to become enlarged/rupture. If your abdominal pain is in the left part of your abdomen behind your lower ribs maybe get it checked out. You might even feel referred pain into your left shoulder and feel breathless if your spleen is acting up.

I think the key thing in the immediate aftermath of being diagnosed with GF is to rest. Complete rest. GF can progress to ME/CFS and you don't need that in your life. So don't 'push through'. I was bed bound for 6 weeks, completely. After that I could only walk with help. Then after about 4 months I could manage by myself if I took things very easy and started to see progress in my recovery.

I found that in order to protect my mental health and my physical health I had to take control. I mean, really take control of my recovery. I'm not in the UK but if the NHS is like the HSE, then they can't guide you and neither can your GP. It's such an unknown illness. You can take control by accepting that you are ill [for now]. And you can take control by giving yourself permission to rest, and setting a limit on how much activity you engage in (sitting up reading MumsNet counts as an activity!). Maybe that's 20mins a day, maybe it's 1 hour - only you know the volume of activity that is within your energy reserve or causes you to crash. You need to limit the crashes though, because each time you crash your nervous system is switched on and it goes into 'danger mode' for want of a better description. The more often the switch is flicked on, the more difficult it can become to switch it off again (ultra basic description there of what's happening to your nervous system!).

When I had enough energy to be 'active' again (sit up for a couple hours, make tea throughout the day and watch some tv) then I started making a recovery plan. I educated myself as much as I could on this illness and worked out my baseline. It's important to identify your baseline because once you understand your baseline, you can start to incorporate some activity and how it needs to be balanced with recovery - maybe you start doing some light stretching for 3mins a day; maybe you prioritise your mental health by listening to a mindful podcast each day for 5mins; maybe you get up and sit in the living room for 15mins. Maybe that progresses to going for a swim (I really mean float!) or a 5min walk or 20mins sitting in the garden. Maybe you can do more than that, only you can know though, so listen to your body.

I found vitamins (I was never a believer previously) to be hugely helpful - CoQ10, B6, B12, Magnesium, Ashwaghanda. I take these every day. I used to take a sugar called D-Ribose but I find it hard to get now. For gut health I take Super8s and eat fermented foods. I also use CBD for the pain and for sleep at night (it doesn't make you high and CBD with mint is probably the easiest to stomach!) and I use a CBD rub for my muscles. I think heat helps as does a snack before bed.

I understand your frustration with not being able to run - I was a five mornings a week cross-fitter who loved olympic weightlifting! Needless to say I'm not back at it yet but I will get there and so will you. In the meantime time the best advice I can give is to adopt an attitude of slow gentle recovery. Keep your chin up.

SunshineCake1 · 14/10/2021 18:04

Thank you @TattoedLady.

Firstly though, just reading through your posts - GF can cause your spleen to become enlarged/rupture. If your abdominal pain is in the left part of your abdomen behind your lower ribs maybe get it checked out. You might even feel referred pain into your left shoulder and feel breathless if your spleen is acting up.. This is definitely happening. When I lie certain ways I'm really aware of my spleen and liver and have to move.

I have noticed I can't read for ages like I used to be able to but then I just lie down. I fell asleep watching tv today after not being able to concentrate.

I'm finding it hard working out what I can do. I feel okay as been in bed so I get up and do something small then need to lie down again. I just can't make my brain compute how to know when I can do more if I need to rest because even small things tire me out.

TattoedLady · 14/10/2021 19:36

OP I think if you're in pain you should see your GP.

On what you can do, well, I think you've actually worked out what you can do. For the time being you get up, do some limited activity and then back to bed with you again. Start small, like really small. And don't try to make yourself do more, pushing through is harmful.

Btw - reading is an activity, as is logging onto Mums Net, as is watching TV! These are things that before GF you might have considered 'doing nothing' but they take mental effort, and for someone with fatigue both mental and physical effort zaps energy.

If you can manage it, write down what you do each day - how you feel, where you feel pain, any brain fog etc. It will help you see patterns of good and bad habits/activities. I found when I did that I could identify what needed to get cut, where I'd overdone it (if I had a crappy day, I'd look back over the previous couple of days to see what I'd done that exceeded my baseline), and what was helping. It will also help you see progress.

This might help you:

SunshineCake1 · 14/10/2021 20:23

I'm going to ring the GP in the morning. I did tell him last week I was still in pain with the spleen and liver and he didn't seem worried. He did say I could be tired for six months though.

SunshineCake1 · 14/10/2021 20:33

I've watched part of it, thank you. I'll watch the rest tomorrow.

SunshineCake1 · 15/10/2021 10:12

I woke up in discomfort but since dh tells me it can take eight weeks for it to be back to normal size I haven't rung the doctor. I'm staying in bed. Will take painkillers when I need. Thank you.

SunshineCake1 · 15/10/2021 15:30

@TattoedLady I am getting checked out shortly. The discomfort and short sharp episodes of pain were worrying me. Thank you for all your advice.

SunshineCake1 · 17/10/2021 17:58

Back home. Still fed up. Been resting but goodness me emotionally this is so hard. Doctor said someone would come and talk to me about GF and what I could do but no one did.

WhiteWhiteWhite · 18/10/2021 14:06

It's a very lonely isolating situation Sunshine. At least you have your GP on your side which many of us didn't.

I'm sorry I don't have much energy to chat with you.

If you feel the need for connection & support, Facebook groups can be brilliant for listening + advice. As long as you avoid the negative people.

You're doing great. Just remember you're going in the right direction. Smile

SunshineCake1 · 18/10/2021 14:12

Hi @WhiteWhiteWhite I so appreciate you taking the time to post. I felt I had annoyed everyone with my moaning. I've been feeling fed up as I have put weight on and have worked hard these past two years to lose around three stone. I hadn't got to where I wanted to be and so have extra plus what I wanted to lose now.

Hospital consultant said no running for six weeks. Tomorrow is six weeks. I still won't be running! Trying to rest all of today in the hope dh can give me a lift to the cafe tomorrow to see a friend.

I don't feel much better than when I left hospital and in some ways feel worse so it is hard.

I can't do Facebook but I really appreciate you and everyone else who has, messaging me.

Take care.

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