Autoimmune symptoms continuing for 12 months post Covid - no answers

God Bless You & I am praying for you right now! Sounds like we are in the same boat. I am older than you, but, have fibromyalgia, both thyroid diseases and osteoarthritis almost all over. I just went to a rheumatologist and was diagnosed with borderline lupus yesterday via a phone message. I have so much pain, stiffness & fatigue that I can't function a lot of days. My faith is what keeps me going. I am awaiting a call back from the nurse today. It is very frustrating when doctors do not listen. Covid ramped up the inflammation in my body (last August I had a significant case) and I am trusting the Lord to get answers. I empathize. Keep trying. Don't give up my friend. Hugs & Prayers....

Jump to this post

Lupus is an auto immune disorder.
It is still very hard to diagnose because so many other disorders have the same symptoms. You either have it or you don't. There is no borderline lupus. I've been monitored for it and have several friends with it.

Jump to this post

I have had Mixed Connective Tissue Disease for over 20 years. Many people with these diseases, including Lupus, etc. spend years until diagnosis--often asymptomatic as labs + subjective observations are the deal. Change your diet to non-processed/anti-inflammatory and start with daily walks in the morning. For severe joint pain, I ask the Dr to get images and a referral to PT. Go to a manual PT who is more of a sole proprietor. Mine had movements that were from yoga, pilates and isometrics. I worked until retirement and most of the time, it was possible to tough it out. Resting due to pain is not the thing to do: you will feel better with movement--

Jump to this post

I agree. Have you tried dry needling? That is an option on the table for me as well when I start PT. God Bless!

Jump to this post

Have you had a positive ANA?

It totally sounds like you are having autoimmune-y symptoms. And it sounds like your bout of COVID was a definite trigger for it.

Some questions to chew on, then:
1) Is this long COVID that could eventually resolve in time, or will the immune system dysfunction continue? Literally no one can answer that one, sorry.
2) Here’s a question I have grappled with for the past 2.5 years since I first had a positive ANA and increased symptoms- would having a name for this (some overarching condition that ties it all together) actually improve my daily experience? What I had to realize for myself was that I was so focused on a diagnosis because I thought it would give me some sort of permission to feel yucky. Eventually (eventually eventually) I managed to convince myself that I had permission to feel bad or have bad days even without having a diagnosis. Then I was able to shift my thinking to the next question.
3) What is it that I want from the rheumatologist? Eventually my symptoms were frequent enough that my answer went from “validation that my symptoms are real” to “validation my symptoms are real AND some help managing my symptoms”.
4) Are there symptoms that can be improved with medical therapies? You and some health care provider (possibly a new one since you aren’t having your needs met with your current one?) would have to work through this question together. From what I’ve read (and read and read), fatigue is really quite difficult to help with current therapies. Trust me, if there was a magic “give me back my old level of energy” pill, I would have found it and tried it! Regular exercise has been shown in research studies to be the most effective at improving fatigue (I know, I know, how do you muster the energy to exercise in the first place?!).

OK- so now that I’ve laid out some food for thought, here’s my action plan based on my own action plan from last year:
1) start tracking your symptoms regularly- what’s new, what’s different, what might have brought it on, anything you think might be useful to be able to look back over. I keep mine on a Note on my iPhone and just plunk in anything that seems relevant. I do try to also include positives too like “finally got a good night’s sleep last night and don’t feel like something scraped off the side of the road”.
2) Get an appointment with your primary care provider. If you don’t have one, it’s time for that too.
3) Before your appointment- figure out what the top 2 things are that you want to talk about. Is it a recommendation and referral to a different rheum? Is it managing your joint pain? Is it figuring out where you are losing blood (AKA the cause of your anemia)?
4) then, make another appointment to talk about the next 2 things, etc.
5) Don’t underestimate the psychological toll immune symptoms have on a person- it might be time to see a mental health provider too for help as well. I know that adjusting depression meds and getting back in therapy were a big part of me starting to feel better. I mean, the fatigue can still hit me like a ton of bricks, but my mental and emotional capacity to deal with the day to day is soooo much better than before.
6) And this one should probably be right up at the top with symptom tracking! Figure out what you have control over (like going out for a walk everyday or planning meals with more veggies) and also figure out small, achievable steps to get there. I feel like “lifestyle changes” feels so huge!! But, like, taking my dog for a walk each day seemed reasonable for me.

This post has gotten so long and rambling! Yes, you have something real. Yes, you can start to feel better than your worst. Yes, it is a process and that process can feel slow sometimes. I wish you all the luck!!!

Jump to this post

Read your blog. I too am having issues fatigue is real I’m 63 was good up to about 58. Now hands wrist legs and back is a real struggle. Very stiff legs are weak can barely get up off of the floor. But my killer is I run low grade fever. Started at about 6 pm. Last for 3 hours. Fever comes and goes. Do u have fever? I’m seeing a rheumatologist. My 2nd one first one was a joke no help. I get very quiet and kinda zone out during fever. Mine has gotten worse since Covid I had it twice. Didn’t take the shot? Do u have fever? Thanks

Jump to this post

Have you had a positive ANA?

It totally sounds like you are having autoimmune-y symptoms. And it sounds like your bout of COVID was a definite trigger for it.

Some questions to chew on, then:
1) Is this long COVID that could eventually resolve in time, or will the immune system dysfunction continue? Literally no one can answer that one, sorry.
2) Here’s a question I have grappled with for the past 2.5 years since I first had a positive ANA and increased symptoms- would having a name for this (some overarching condition that ties it all together) actually improve my daily experience? What I had to realize for myself was that I was so focused on a diagnosis because I thought it would give me some sort of permission to feel yucky. Eventually (eventually eventually) I managed to convince myself that I had permission to feel bad or have bad days even without having a diagnosis. Then I was able to shift my thinking to the next question.
3) What is it that I want from the rheumatologist? Eventually my symptoms were frequent enough that my answer went from “validation that my symptoms are real” to “validation my symptoms are real AND some help managing my symptoms”.
4) Are there symptoms that can be improved with medical therapies? You and some health care provider (possibly a new one since you aren’t having your needs met with your current one?) would have to work through this question together. From what I’ve read (and read and read), fatigue is really quite difficult to help with current therapies. Trust me, if there was a magic “give me back my old level of energy” pill, I would have found it and tried it! Regular exercise has been shown in research studies to be the most effective at improving fatigue (I know, I know, how do you muster the energy to exercise in the first place?!).

OK- so now that I’ve laid out some food for thought, here’s my action plan based on my own action plan from last year:
1) start tracking your symptoms regularly- what’s new, what’s different, what might have brought it on, anything you think might be useful to be able to look back over. I keep mine on a Note on my iPhone and just plunk in anything that seems relevant. I do try to also include positives too like “finally got a good night’s sleep last night and don’t feel like something scraped off the side of the road”.
2) Get an appointment with your primary care provider. If you don’t have one, it’s time for that too.
3) Before your appointment- figure out what the top 2 things are that you want to talk about. Is it a recommendation and referral to a different rheum? Is it managing your joint pain? Is it figuring out where you are losing blood (AKA the cause of your anemia)?
4) then, make another appointment to talk about the next 2 things, etc.
5) Don’t underestimate the psychological toll immune symptoms have on a person- it might be time to see a mental health provider too for help as well. I know that adjusting depression meds and getting back in therapy were a big part of me starting to feel better. I mean, the fatigue can still hit me like a ton of bricks, but my mental and emotional capacity to deal with the day to day is soooo much better than before.
6) And this one should probably be right up at the top with symptom tracking! Figure out what you have control over (like going out for a walk everyday or planning meals with more veggies) and also figure out small, achievable steps to get there. I feel like “lifestyle changes” feels so huge!! But, like, taking my dog for a walk each day seemed reasonable for me.

This post has gotten so long and rambling! Yes, you have something real. Yes, you can start to feel better than your worst. Yes, it is a process and that process can feel slow sometimes. I wish you all the luck!!!

Jump to this post