Post Covid weird symptoms

Thankyou for resonding.I am so sorry that you are going through this as well.When this all started I had a few panic attacks.I have never had a panic attack in my life.I also could not swallow which I believe was because of vagus nerve damage.My Primary thought to put me on steroids which gave me the ability to eat again.I could not cough,yawn or sneeze for months.It is finally coming back,but it is still not normal because of the nerve damage.I have lost strength in my face to smile,laugh,talk,etc.I can barely walk because of the lack of strength in the trunk of my body especially my diaphram/sternum and pelvis.Even my hair changed.I use to have long nice hair and I had to cut it because it basically fused together.Now my hair looks like I stuck my finger in an electric socket.It has not grown in over two years and goes out instead of down.It is almost like my DNA was changed.I have had every test and every disease looked into.I was checked for Myasthenia Gravis and a bunch of other Neurological diseases as well as autoimmune and nothing.Brain clear,GI fine,Spine normal wear and tear for my age.High Epstein Barr titters at the beginning of this probably because covid reactivated that.The only thing found in my blood tests are low carbon dioxide in blood,low deha sulfate and low testosterone.I did have the anemia from heavy periods and was going through perimenopause.I was still very healthy and in my 40s.Exercised everyday and did not smoke or drink.The only medicine I have ever taken is synthroid and only 50 mg.The endricinologist raised it to 75 mg because my thryroud was a tiny bit off.At the beginning of this I was so skinny I really thought I was going to die.I am 5'11 and was barely 100 pounds and just could not eat.Now I have gained a massive amount of weight.I believe covid messed up my adrenal function.I got tested for Cushings and it was negative.I know low Deha can mean addisons disease,but you would lose a ton of weight with that.I have huge upper arms and legs.I wish I could find a long covid clinic that would just take me without proof.I know this has to be part of long covid.The Doctors are just not finding anything after 2 1/2 years,but it feels like I am slowly dying.It is just awful.I just told my mom that I can't even believe I am alive with the way I feel.Nothing is functioning like it should in my body.I am basically like a human vegetable,but all my tests are showing as normal.That is why it is impossible to get any help because the damage from covid must hide from conventional tests.It is so Frustrating.

First and foremost I am sorry that you are experiencing this. I have had covid twice. The first time I got it I don't with long covid for over a year I was in the hospital five times, I am making a very very long story short. The second time I got covid about 6 months ago, somehow it kicked out that long covid. Since the first time I had covid I get those electrical shock feelings in my temple in my head. Always the left side. I have gone to the doctors for it, my doctor told me to go to the eye doctor. I tried to explain it to my eye doctor, unfortunately I did not have my regular doctor that day, she tried to tell me it was shingles, I told her it most certainly was not shingles but it's not a sensation feeling it's a pain in my head. I still get these, sometimes it scares me cuz it reminds me of what an aneurysm may feel like. But I have had to accept them I don't know what they are I don't know how to get rid of them and I'm sick of being afraid that I'm going to drop whenever I feel that pain. I understand that electrical shock feeling. I hope at some point they will get to the bottom of all these crazy symptoms that we get after covid and during. Take care of yourself and hang in there.

I had nerve pain in my facial nerves as well, moving around and strong pain. It all but disappeared after four months and only flares up when I relapse into an episode of PEM. I'd like to know what it is - has the nerve healed? If that works for the nerve in the face (trigeminus) does that also work for the vagus nerve the inflammation/irritation of which seems to be central to fatigue, CFS, GI-issues, kidney problems, brain etc...

Hello,

I don't have a positive COVID test. I had it before there were tests. I had it in December 2019 into early January. It went around my department. I work at a University. I go to Johns Hopkins. I had to be referred there by another physician. The first appointment I had was telemed where they asked me a bunch of questions then asked what the top 3 issues I wanted help with. As I have POTS causing extreme dizziness and blacking out, this was the top priority. I have extreme pain which was number 2 and then the eating/GI issues. Johns Hopkins wanted people who had a positive test but I could not produce one based on the timing of my having it. I have not had it since. I live about 2 hours away from Johns Hopkins so it is not convenient but can be a day trip. Good luck!

Thankyou so much for replying!I am in Maryland so I was wondering about John's Hopkins.I am pretty desperate because no specialist that I have seen in over 2 years has been able to help me.I have extreme pain all over with muscle twitches,along with GI and many more symptoms.Maybe someone there can help me.

That is so awful.I sometimes feel like these Doctors just make up diagnoses that work for them and don't really listen.I guess they don't understand because some of these symptoms brought on by Covid are hard to diagnose.I hear what you are saying about being afraid your going to drop.I feel like that evernight I go to bed with all my weird symptoms.I am in amazement every morning I wake up.

In order to live my life in peace I had to get to the point where I decided whatever was meant to be will be. Believe it or not I have a lot more peace with that mind frame. I'm so sorry that you're going through this I feel for you and I completely understand. Reach out anytime. You will get through this hang in there.

I’ve experienced many of the symptoms described above.
I’ve been to every specialist, had every test, bloodwork, scan of every inch of me and all testing comes back negative. I was dxd with long Covid 2 years ago re: clinical presentation, but PT for 8 months, and I’m still experiencing fatigue, body pain that keeps me from sleeping, rumbling noises and vibrations in my head, headache and vice-like sensation as well. At this point I figure it will be a chronic problem and I just deal with it.
I am taking LDN now but a third infection in February was a major setback and seems to be winning.
Best to all of you. Peace.

May I ask what the test tests for in Long Covid? I lost my taste and smell in December of 2022. Does this mean I am positive for Long Covid?

My story is similar. I was improving but then got Covid again and it all came roaring back. My main symptoms are body aches and chills and fatigue and major sleep disruption, but also palpitations, vibrations, abdominal pain and cramping, etc etc.