New diagnosis..what now?

[Claremarie83]

Hi, I'm new to this.. I caught covid in 2020, then again a few more times, I was finally diagnosed with long covid and encephalitis yesterday. It's all very daunting, I'm not sure whether I have encephalitis or if I had it and now I'm left with fatigue and pain and what the gp called brain fog and headaches.I'm unable to work, or even study, new information just doesn't stick anymore. I'm receiving universal credit which is really great, I wouldn't be able to survive without it, or look after my two kids but I want to study, to learn new skills, so I can work from home, so I can support my children and I want to move house, to move in with my partner, I want to not be housebound especially!

Sorry for the rant, it's all a bit overwhelming right now. I'm ok in myself, I like being at home to be honest, I just wish I had more energy, less pain and that I didn't feel so brain foggy all the time!

I guess my question is

What helps with fatigue?

With pain?

With brain fog?

Ok that was 3 questions, but any suggestions, anything that has worked for you, gp, specialist etc any info would be awesome

Thankyou for reading

[kitnkaboodle]

Welcome to the club no one wants to join 🥳

Did you have an LP, MRI, etc. to diagnose the encephalitis, or is the doctor only going off similar symptoms between conditions? I’ve heard one study out of Mayo that indicates encephalitis develops in about 3% of COVID cases, so it’s rare but not impossible.

I’ll answer your questions based on my 2.5 years of E/recovery.

What helps with fatigue? Rest, rest, more rest. Not pushing oneself beyond limits. A nice daily walk also helps me.

What reduces pain? Well, which type of pain? I sleep and rest and use medical massage and manual therapies, migraine devices, occasional NSAID (Diclofenac), but… honestly, I’m in pain 24/7. I’ve just learned to live in it and not fight it.

What clears brain fog? More rest and NOT pushing through it.

Ask for help, and know it’s okay to not be okay. You’re not a bad mom or partner or friend when limited. You’re not a burden.

By the way, I’m housebound as well… it’s not entirely a bad thing. It’s “tragic,” but the big, bad world out there hurts me horribly, and it doesn’t miss me anyway 🙃

Ask whatever questions come to mind. We’re happy to try to help!

Kit

[beachy1980]

Hello! I wish a had a magic solution to tell you for all three but the truth is for me that you have to find things to help rather than solve! I am going to be part of a sleep study in a few months and a trial drug to see if it can help my fatigue - I feel really positive about it and will let you know how it goes - it seems that exercise and diet help my fatigue massively but nothing seems to take it away...yet!

Exercise definitely helps with brain fog for me - I am yet to find anything else as yet but will be interested to see what others say about it.

I don't really have pain from encephalitis but I know people that do and take strong pain killers for it.

Hope it helps a tiny bit and hope you are ok x

[HSE_Survivor]

Time is a great healer, Clare . Fatigue is the long term affect for me . The first 18 months were the hardest, as I had to sleep constantly throughout the day . Over the years my energy levels/ memory gradually increased and I even worked mornings for 6 years. Unfortunately fatigue can trigger seizures for me , so I’ve had to stop working , but I am able to get out of the house and I feel independent.

Socialising in the evening remains a problem . The more active I am in the day, the harder it is to stay awake in the evening. Last night I literally fell asleep on the sofa in the middle of a serious conversation with my husband and daughter. They are both very supportive , but I know they find my antisocial sleepiness frustrating at times .

[listener24]

water rest and fresh fruit oh and here’s the hard part don’t over do it !