First steps to getting a long covid diagnosis?

I did finally see my primary doctor. She was skeptical, but did order blood labs and referred ne to Neurologist (3 month wait for new patient appt! October 28th) My labs all normal. You HAVE to start somewhere, right?

Yep...its no joke and people are struggling with it and not much help out there.

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

These are helpful statistics - none of us wish to be impacted in our ability to return to life as we knew it. Whether working, pursuing a degree, or even daily functionality. I’ve learned it takes time and we need to be patient. Thank you for your information!

Hi @da69, welcome to the group, and I'm so sorry to hear about your post-COVID symptoms. If you're local to a Mayo Clinic location, you may consider exploring our Post COVID Care Clinic (PCCC). You can read more about it here: https://connect.mayoclinic.org/blog/post-covid-recovery/tab/next-steps/

@colleenyoung shared some more information in a discussion started by @cathusa about long COVID post-vaccination that you may find helpful:
-COVID test negative: How can I be sure my symptoms are long COVID? - https://connect.mayoclinic.org/discussion/long-covid-after-vaccination/

You may find some support from others like @julesmango and @robinholly, who are also dealing with long-haul COVID symptoms.

You mentioned TMS therapy in your post - have you spoken with your provider about whether or not there may be a connection between your depression and anxiety and long COVID?

Thank You....I am in the middle of TMS...Half way there to my 36 treatments.
My sleep has improved ...After my TMS is done i will be seeing my primary doc if things dont improve...Personally i think with all my symptoms...Fatigue..Soreness after any physical activity..
worsening depression...shortness of breath... anxiety (Which i never had before covid) all point to possible long covid... which i recently just heard about and got me to thinking that may be what i have.

Hi I was wondering if Tms is working for you and how many treatments have you done? Also so u think if you may had covid before. could it caused your antidepressant to stop working? Reason I ask is after I had covid the dr said that Zol stopped working for me and I had been on it 22 years. My anxiety got worse and brought on the depression. little different there but I did TMS also. I hope it helps you. But I wasn't a lucky one

Having symptoms get worse instead of better over time is incredibly challenging. I think it's worth exploring long COVID and sharing these issues with your doctors. There may be some interim solutions to help you get through the next period of time until you can hopefully find a longer term solution.

Do you have an established primary care doctor who you'd feel comfortable speaking with, or access to another doctor who you could ask?

Yes i have a long time primary care doc who is my age.
I really cant see him until my tms treatments are done which are every day and i leave work 2 hrs early every day and drive 45 min to them.
Today was treatment 18 and i think i am experiencing a tms dip which they say is normal as your brain is rewiring itself.
On the positive side my sleep is a lot better.
Work is difficult and i am wiped out after work.
Right now i am basically getting by ...I do what i absolutely have to do and spend time resting.
Any physical activity and im sore for 2 or 3 days.
Fatigue is the worse and anxiety which showed up about a yr and a half ago along with worsening depression.

Hi! I finally found a Long Covid Clinic near me after having lingering effects for 16 months. Most of mine are like most of you have....brain fog, fatigue, taste and smell problems, shortness of breath on exertion, joint inflammation, hair loss and I forgot to mention at my clinic visit, sleep problems. The nurse practioner I saw was great. she explained in a way easy to understand what was going on. She explained it like an infection. The body will get rid of the "trash" through pus of other ways. With Covid, the "trash" is staying in the body much longer causing all these problems. For the brain fog, she suggested doing word games or puzzles, even going back to children's games if need be. For the fatigue, she suggested exercise or movement followed by rest periods. I have 33 acres I have to take care of. Most of the time I have to force myself to get outside and do something. Last year I call my "lost year" because I did very little work. The place looks like it, but I just have to try to do what I can. She also told me that physical therapy has helped some people get their strength back to where it was before Covid. She put in the orders for PT for me. I think that might be a good idea for me. Suggestions for taste and smell, she suggested taste/smell therapy. I had done some of that on my own, but it wasn't working well for me. I'm glad I found the clinic, not only for getting things documented, but also getting ideas for help with symptoms. Hopefully our bodies will eventually get rid of the " trash" and we'll all feel better. Let's keep the faith even though it is difficult at times. Bless you all my friends.