Im at a loss for words

Posted by bruced @bruced, May 18, 2023

i want to say something that might sound weird but thank you all
im here after another sleepless night and finally i came across a group of people that understand the trials and struggles i am just starting to have
i feel your pains and i am scared
i was diagnosed with covid at the end of february
i was bedridden for about two weeks before i dragged myself to urgent care
they said i had bronchitis and gave me antibiotics steroids and an inhaler
i didnt feel better
i made an appointment with my new doctor
she told me i had long covid
i have been struggling with this and the worst part is no one believed me
i sit and cough and hack up phlegm for an hour that seems to never stop and is so thick i can barely cough it up
test results are always normal
the doctors just want to push antidepressants and are referring me to psych because they havent dealt with longers
i feel so scatterbrained most of the time and can finally make it through grocery shopping without feeling like im going to pass out
i have hot flashes and break out sweating and get so fatigued
i dont have muscle pain just some joint pain, severe thirst, insomnia, the hot flashes, confusion, forgetfulness, fogginess, i misplace almost everything, im short of breath all the time and other things like dry mouth, irritability, sadness, and time seems to pass so fast
i will lie down and try to think and what feels like 30 minutes turns into 3 hours
you have given me hope and reassurance that im not crazy and im not alone in my symptoms
i read some of your stories until i couldnt understand things anymore
i am losing thought now so thank you again

Interested in more discussions like this? Go to the Post-COVID Recovery & COVID-19 Support Group.

prancer20 | @prancer20 | May 20, 2023

In reply to @okradurham "All my friends and family are struggling with where I have disappeared to as am I..." + (show)

I hear you! I have had to limit my performing activities to almost none since Long Covid! It is just awful! I still have hope that things will eventually get better!

bruced | @bruced | May 20, 2023

In reply to @awa63 "Hi. I've been dealing with Long Covid symptoms since early last July. At first my doctors..." + (show)

@awa63

Hi. I've been dealing with Long Covid symptoms since early last July. At first my doctors did not speak of long covid but rather tried manipulating my various medicines to make sure they weren't contributing to my symptoms. For various reasons, I knew it wasn't my medicines, but I suffered and humored my doctors. Eventually, it was apparent that my medicines were not the cause of my growing list of weird symptoms. I felt embarrassed to speak of some of what I was experiencing and had difficulty accepting any of it as "an illness". Eventually, in reading more and more about long covid, it became apparent to me that each of the goofy symptoms I was experiencing could be ascribed to the Long Covid Syndrome. My doctors accepted that this is what was happening, but had no real experience in dealing with it. I was given various meds to help with the SOB/Breathlessnes, Palpitations, and dry mouth. Some of them helped. Eventually I was seen in a Long Covid Clinic at a nearby University. They helped me not feel so crazy and reassured me that all of the things I was experiencing could be related to the Long Covid and had been seen before - that was very validating. So I understand how you have felt and hope that you continue to feel reassured and supported! One piece of advice regarding the fatigue which may help. I am struggling with it too and it is like a battery, I have only so much energy and as I use it up, there is no recharge. Once on empty, that's it, I'm useless. Also, I was told initially to avoid all activity that caused increased heart rate (working out, tennis, pickleball, running etc). The reason being that such exertion can use up our reserves and they're also finding that with long covid, we may not be able to draw on our anaerobic reserves to sustain our energy as we use to (the system has been "damaged"). Therefore, pay attention and try to limit anything exertion. Be attentive to your activities and degree of engagement and try to take breaks before you "overdo"it. Sometimes, you might be doing a bit better and do more only to fade and pay a price for it later that same day or up to 72 hours later so even if you're managing, try to be cognizant of this and structured in how you manage your energy/activities throughout the day/evening/night. I'm sure having children makes it more difficult to follow any structured program, but do the best you can and if you can't, don't get down on yourself. Remember, this is not something you created or have control over so be kind to yourself a find a way to accept it. Do the best that you can, that's all you can do. Ideally, your family will understand and respect what you're going thru and support you as well. Have them read some of the entries on this blog or any of the numerous on-line descriptions of Long Covid or a chronic illness similar to it lie CF/ME so that they may better understand what you're experiencing and see that it's "not in your mind" but something real that many people are going thru and dealing with! I hope that this doesn't sound preachy, not intended to, just trying to share some of what I've learned - I hope it makes sense, if not, I can be more descriptive if desired. The bottom-line, you're not alone, I'm not alone, we're all in this together and these crazy and difficult to live with symptoms are not in our head, but happening to us!

Jump to this post

thank you so much for your kind reassurance.
i have had all normal results even on my brain scan and its so frustrating dealing with the doctors now. i know what you mean by the battery analogy,
i just wish i had a guage to tell how much i had left. i know also what you mean about pushing too far because today im totally drained and spent.
ive been on albuterol and combivent to start and wondered if anyone has, i call it "turrets like" side effects from the albuterol? i have compulsions to talk to strangers at stores and am even more sarcastic than i used to be. i say things out of the ordinary that i wouldnt normally say and its like i cant help it. i even have a strange "uhmm" that i say also since i started on it like im about to say something. thank you all again for your words and support.

rebshlomo | @rebshlomo | May 21, 2023

I would check your blood sugar levels and insulin sensitivity. They both drive inflammation throughout the body.
A good diet is the best medicine. Don't eat processed foods at all. They contain lots of starch, added sugar and processed oils that drive inflammation. Just eliminating almost everything that says Added sugar, and no change in excersize, I walk about 5 miles per week, I lost 10-12 lbs. I am 78, 5'8" and 189 lbs.

baci | @baci | May 22, 2023

I am happy that you have found this group. So sorry to hear about all you are going through.

I have long covid going on over 2 years- I am 34. This group lifted my spirits and knowing it is here is lifesaving. Things are slowly getting better at times.

You are not crazy- the already struggling healthcare system is failing countless Long Covid patients. My neurologist saved my life- he diagnosed me and has treated me with dignity and respect. We do testing, but mostly our appointments consist of brainstorming considering other patients experiences. He told me - any Dr that tells you they know how to “ cure” LC is lying. The MD community is perplexed and frustrated by the lack of answers and continued questions.
What I have experienced symptom- wise:
Dizziness
Depression
Increased Anxiety
Fear
Legs that collapse
Extreme Fatigue
Foggy Brain
Blurred vision
Cognitive Delay- speech and motor function
The list goes on…

What I have done:
There are days I cry, but there are also days I fight. Dont give up. On days I can fight- I give it everything I have.

I have a great therapist and np that help manage my mental health and medications regularly
I only visit doctors that I am referred to by Doctors that I trust
Visit my neurologist regularly

Added task help items to my house- self folding stools, heated blanket for chest pain and anxiety, body pillow to support sitting up, increased use of my service dog, brushes in the shower that help me to easily clean my back- at times I am unable to stand in the shower, try to increase physical activity more each day( I used to powerwalk 10 miles a day)- this is after a year, spend time sitting outside, do something creative, sleep, give myself permission to do nothing
Cryotherapy as often as possible
Interact- become familiar with store workers/owners
Socialize when I can
Distance myself from people who don’t understand

Dont give up. Sending you hope.

frouke | @frouke | May 23, 2023

Long covid run’s it’s course..some people have worse symptoms than other’s but they are all similar..it may be helpful to see the doctor but I found it a waste of time, they really don’t know what to do so they just try different meds and treatment to try and help you. I mentioned in a previous post that my vitamin D was low and this was the same thing for many who had covid..I doubled my dose and after a few weeks it improved my mood and gave me some appetite and energy, it’s worth a try, you have nothing to lose but bad symptoms.

tenclawz | @tenclawz | May 23, 2023

I have seen some of the folks that have problems after covid and I also have
bad sinus's which I think is because of covid as a Christmas present 2020.
As many folks that are complaining proves the doctors either do not know or
are willing (some of them) to keep knowledge of the truth under wraps.
Now Billy Boy Gates has funded a patch for babies that are only nine months old. I suppose his Bird Flu will be our next big surprise, Or maybe more bat
virus's out of the labs in Colorado.
No end in sight yet, only more of the same. It makes me feel sorry for all that are sick from the money grabbers.

frouke | @frouke | May 23, 2023

It’s like the portals from hell opened when covid came along..it’s almost biblical with all that’s going on including nature, God help everyone

car0 | @car0 | May 23, 2023

I get SO frustrated that medicine’s response to complexity is “it’s YOU!” instead of I don’t know. And a dose of sympathy, which we all could use. Not trying to depress, but I got Covid in 3/20 and am still having “stop the world” flares. Friend sent this to me.
https://thehill.com/opinion/healthcare/4011212-why-is-the-medical-community-still-ignoring-long-covid/

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