First steps to getting a long covid diagnosis?

Posted by da69 @da69, Aug 2, 2022

Hello..New here.
I had covid in January of this yr and may have had it before i was able to get vaccinated (March of 2021)...I have suffered from mild depression and took zoloft for 20+ years without any problems and about a yr and a half ago
it quit working...And since then i have been on numerous meds for worsening depression and now have anxiety attacks (Which i never had in my life)...I have cronic fatigue...If i do anything physical i get terribly sore for the next couple days afterwards..I get feelings of pins and needles in my shoulders and feet sometimes.
when i lay down i can feel my heart pounding...Sometimes i have trouble remembering things and feel foggy.
Currently i am in the middle of TMS therapy for treatment resistant
depression.
But i can help but wonder if my worsening depression and anxiety along with the other symptoms could be related to Long Covid?
I have no idea where to start?...Do i see my primary care doctor first?
I cant find any resources in my area or covid clinics etc etc.
Not sure what to do?
Thank you

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

da69 | @da69 | Aug 9, 2022

In reply to @baseballmom33 "Hi I was wondering if Tms is working for you and how many treatments have you..." + (show)

I am on treatment 19 of 36 treatments...The only thing so far is my sleep has improved.
I think right now i am going through whats called the TMS dip...Where some people have their symptoms get worse.

ericy210 | @ericy210 | Sep 1, 2022

I went to urgent care when my breathing became labored. He gave me a steroid and diagnosed long Covid.
A huge blood screen from a university long Covid study showed immune system and cardiac irregularities. They also diagnosed long Covid. A second university hospital did too.
In my opinion, it was important to get a formal diagnosis for insurance coverage, potential medical leave, or even disability. It’s a real thing.

tlichtlin2 | @tlichtlin2 | Sep 12, 2022

In reply to @sueinmn "I fear the answer is not so much that there is not much help, but rather..." + (show)

@sueinmn

I fear the answer is not so much that there is not much help, but rather that the demand for treatment of the lingering effects of long Covid are overwhelming our medical systems. I truly believe we are seeing far more aftereffects than anyone anticipated, and they are more varied, long lasting and resistant to easy fixes than anyone predicted. The latest report is that getting repeated Covid infections increases the possibility of lingering effects.

Current estimates are that anywhere from 10-25% of Covid survivors are feeling noticeable symptoms - many for over a year. With over 100 million cases since 2020, that means 10 to 25 million people suffering new health issues. If just a fraction are affected severely enough to seek help, that is millions of new patients.

Keep in mind that many of these symptoms defy diagnosis, or don't respond to typical treatments, or even just are hard to pinpoint or describe clearly to providers. Every week and month, the dedicated people treating all of you struggling survivors are finding new techniques and treatments, but there are still many unanswered questions and a shortage of people with the time & resources to pursue research.

And with all of this going on, people still need to be treated for the usual conditions and diseases like high blood pressure, diabetes, pregnancy, cancer, injuries....and the providers are burning out from the hours and stress. My primary provider was recently "allowed" to cut her work week to 50 hours because her own health is precarious. Everyone is waiting record times - measured in weeks or months - for their health care now. You need only read post in some of the other discussion groups on Connect to see how widespread this problem is today.

I am writing this not to minimize what long Covid sufferers experience - my formerly healthy, active 40 something daughter has been suffering for over 2 years, and we are just noticing in the past month or so that she is beginning to regain some of her stamina, but she is still unable to multitask, or to go back to college for her next degree. Just pointing out that, while it seems we have been at this forever, Covid has been in the US less than 3 years - an optimistic time to research, test, report and implement medical care for a newly identified condition or disease is 5 years. The fact that treatments are already being formulated, and that any post Covid clinical care is available is pretty remarkable. Now we just need more health care practitioners to do it.

I truly sympathize with each of you who is experiencing these awful and seemingly endless symptoms. I would love to wave a magic wand and heal everyone, but I lost it about 50 years ago. Please hang in there, continue looking for help from your primary, and from each other here on Connect. Whenever I find something promising, I try to post it in the appropriate discussion.
Sue

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This gave me some hope.
Thank you.

bba3 | @bba3 | Sep 13, 2022

In reply to @tlichtlin2 "This gave me some hope. Thank you." + (show)

Dear tlichtlin2,
I want to thank you for your extensive and compassionate response.
I also want to extend my well wishes for your daughter who is still experiencing symptoms; I hope she continues to see progress. My daughter is currently trying to recover from her 3rd (possibly 4th infection (she has low immunity due to chronic pain from a brain injury when she was a teen; she is also in her 40s).
My heart goes out to all those who are dealing with this illness.
I am so grateful for this on-line community.
Loving wishes to all.

jennifergillan03 | @jennifergillan03 | Sep 14, 2022

Lol.. but not kidding. It’s ruling out everything else… Because COVID mimics many other illnesses. Depending on where you live there are COVID resources. To meet the criteria symptom have to last longer than 3-6 months. Make every appointment and then cancel then if you feel you have recovered. Every specialist prior to COVID was difficult to get a new patient appointment. My top three neurologist cardiologist and pulmonologist. Be patient. No one is going to give you a diagnosis you have to work for or fight for it…. The struggle is real. Mayo is the best you can trust them…. They were my first real treatment option. I post everything in #covidrecoverymama on Instagram and Facebook. I will post some links soon.

redhatter54 | @redhatter54 | Sep 14, 2022

@redhatter @da69
I would start with your Primary Care Dr. Tell him/her everything that you just wrote down here. I was diagnosed with Long Haul COVID by my Primary Dr. I can relate to you because I have a lot of the same symptoms and more. I too suffer from Depression, but I was on a different medication which continued to work through all of this. The tingling and pins @ needles that you feel could be a sign of neuropathy. I ha neuropathy in both my feet and legs up to my knees only. I had it before I came down with COVID-19. My husband and I were vaccinated and we both caught COVID-19. It was at the end of the 6 months. We caught it when we went to a funeral out of state. My husband’s lasted about 10-14 days and mine lasted 3 months. Make that appointment with your Primary Dr. so they can figure out what is going on and what tests to run. Good Luck

jennifergillan03 | @jennifergillan03 | Sep 14, 2022

In reply to @jennifergillan03 "Lol.. but not kidding. It’s ruling out everything else… Because COVID mimics many other illnesses. Depending..." + (show)

https://www.survivorcorps.com/

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