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What am I actually supposed to be doing to get better?
Post-COVID Recovery & COVID-19 | Last Active: Apr 16 1:14pm | Replies (52)Comment receiving replies
I am also very interested in reactions to Athena's question and feel as lost, four months into LC. LC-clinic neurologist told me last week that you need to avoid crashing and worsening your symptoms at all costs and to plan your day/activities accordingly.
For me, this is currently (since early March) lying down and only leaving the house to see doctors. I am as concerned as Athena that this will only weaken/decondition me further. I do have the odd "better" day but find it impossible to say whether it is getting better overall. How do you know that it would be better to get active and/or how long is this likely to take?
Replies to "I am also very interested in reactions to Athena's question and feel as lost, four months..."
Hi everyone,
This will be my fourth year of having long covid (I’ve had it 11 times).
It was really hard in the first 2 years for me because nobody understood how I was feeling, not even my own go.
The best thing that ever happened to me was being referred to The long covid clinic.
My first initial appointment was with the long covid doctor.
After going through what had happened and all my ailments. He instantly knew what I had and diagnosed me.
Look up MCAS, in short your body is attacking itself triggered by covid. So your immune system is producing to much cortisone which which makes you feel very weak, tired.
I they prescribed me two strong antihistamines , one in the morning and one at night.
Also look up about POTS.
Their is a lot more other symptoms I have including nausea, joint pain, chronic lower back pain, brain fog and covid bowel.
The advice I have been given from Long covid doctors,matron,o/t,physio
Is to make everyone one aware of what is happening to you.
That you might have to cancel meeting up with family/friends/hair appointments ect.
Listen to your body and if you need to lie down and you can do, do it.
When your having a good day don’t try to do everything and use up all your energy because you might end up in bed for the next two days.
When I was asked by the physio to do a diary of what activity I did and how it affected me.
I was really shocked that doing an online food shop affected me more than when I did a physical one.
Because covid has basically invaded our bodies our immune system is doing it’s best to fight and keep our bodily functions going.
I was told every day to lie on my bed with pillows under my knees. No phone,music or tv and close your eyes and just concentrate on your breathing from your stomach for 10 minutes a day. By doing this your immune system can solely concentrate on healing.
I’ll try and add some of the helpful documents that they gave me.
Sorry my punctuation is awful and a bit disjointed.
Kind regards Claire
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I have been struggling with LC for two years. A couple of months ago I started taking LDN, low dose naltrexone, 3 mg, and my neurological symptoms appear to be lessening. Headaches are better, horrible head noises have diminished greatly, and fatigue has lessened. LDN is touted for helping with these kinds of symptoms and I do believe it is working.
There are no side effects and I have to recommend you give it a try. I get mine from a pharmacy in Florida as my doc feels they have the best product. It is by prescription only. Hope this helps. Best to you all.