I could cry if that helps. I feel so bad.
IF any dokter reads this message and thinks you could help me, please send me a message!! Please do!! I tested positive 9 weeks ago. then 3th week I was completely fine! I walked 10k steps everyday for more than 10 days. Suddenly (around 4/5th week) I had very painful upper legs and barely able to walk. Like lots of needles were stabbing me just above my knee. When I lie down, it got less. I took full bed rest for 3 days. Then 3 days later I had neurological issues; could not watch with my eyes to peoples face, if I did, it was very pain full inside of my head!
I went that day to the ER. Basic blood tests and a CT scan showed nothing.
Then the coming 3 weeks after this date, it slowly got worse to the point that I am now not able to tolerate:
- Lights, my eyes feel so painfull even with the slight amount of light.
- Ears; I cannot listen to people when they talk to me, then my head goes crazy / painfull.
- Talking; if I start talking, after 10 seconds it hurts very much in my head, if I continue, I just am not able to talk at all
- Walk; my legs slowly got worse, first I could walk in the house freely. Now I am not able to walk for more than 8 seconds before my legs stop working
If I try to forse myself to talk or listen, my tongue gets white (see picture below). My GP thinks this is stress related and wants to wait. Even that during these 3 weeks it is slowly getting worse. I am not even able to talk to the GP anymore as I cannot talk for more than 10 seconds. Also during sleep, I have sudden headaches right before I fall asleep. They are the most painfully headache I had my life, they last around 10 minutes each time.
Please note! After covid (1th and 2th week), i was fine for 10 days! All the issues started around 4th week.
I cried a lot how less care there is for if you have any possible post covid issues. C-support has a waiting cue of more than 6 weeks. The GP does not see any need to further investigate as this is probably covid related. I am now lying down in home. around 16 hours a day lying down, while I am not tired, I am also not possible to do any thing else. I feel like I am in a prison. My mind is working perfectly, but my ears, eyes and mount are not able to expose myself. I feel trapped.
I was so far with this project. Everything was getting ready to deliver. I really hope this can get fixed somehow. For that time, sorry everyone that I did not manage to deliver the system quicker.
Lots of love to everyone.
If you think you can help me in any way or now a better option for care. Please do contact me below. I will be forever gratefull.
Get well soon !
Are you planning to finish your LG Therma V controller? Do you already have any price ideas for it?
Andreas
Heel veel sterkte Mouse!
Hopelijk gaat het snel toch weer de beterende kant uit.
Hoi Mouse,
welkom bij de club zou je haast zeggen.
Mijn vriendin is 4x postifief getest en is inmiddels ruim 3 jaar thuis. passende zorg is er nagenoeg niet, wat erg frustrerend is. Vrijwilligerswerk van 2x 3 uur is net te doen, naast de andere verantwoordelijkheden (huishoudelijke dingen, revalidatie, solliciteren etc) en dan nog is de energie sneller op dan er bijgeladen kan worden.
Ergotherapie is een goede waar je terecht kan. Vanuit de huisarts kan je een verwijzing krijgen zodat het vanuit de basisverzekering vergoed wordt. evt doorverwijzing naar de sportgeneeskunde om te kijken hoe je met de beperking om kan gaan zou nog wat kunnen doen.
Op mijn werk (AmsterdamUMC) hebben ze onderzoek gedaan naar reguliere therapie en cognitief gedragstherapie. Dat schijnt in sommige gevallen ook goed te kunnen helpen.
In ieder geval NIET teveel doen! de stappen terug zijn zwaarder dan de stappen vooruit.
In ieder geval heel veel beterschap!
Veel sterkte! Hopelijk voel je je snel weer beter
shiit man
Try to post in as many communities as possible (like reddit).
I find it hard to believe that you are the only one with that problem
This is the weirdest side effect of covid i have read
Hope you get better. Please keep us informed.
Hi,
One of my friends had long covid and he started using NMN showing very promising recovery. You can try that https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3581388
Thanks for mentioning this, I will look into this!
Make sure you buy the real NMN (there are fake ones around), brand DoNotAge is a good reliable company.
Hey Mouse, hoe gaat het ondertussen?
Hopelijk heb je een beetje een ritme kunnen vinden om het rustig aan te doen.
Sterkte nog iig!