Seeking Help for Unknown Medical Issue

@ajidzior I am so sorry that you’re having these problems; i honestly don’t know what to tell you. Have you been to a major medical center or a university medical center? They are more used to difficult problems.
You mentioned that you reached out to Mayo Clinic—-have you contacted the hospitals ‘care network’?
https://mayoclinic.org/about-mayo-clinic/care-network/members
This is a group of hospitals that work closely with the Mayo Clinic.
Please don’t give up. Other members here, and myself, will try to help as much as we can.

Thank you so much! I will look into that. I appreciate the support.

Hi Amy @ajidzior, I would like to add my welcome to Connect along with Becky @becsbuddy. You mentioned being physically and mentally tired and I was wondering if your symptoms sound similar to those in this discussion -- Chronic Illnesses of Millions of Women Left Untreated: https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

@ajidzior Me three for adding my welcome to Mayo Clinic Connect.

What a mess to be in, and have no answers. That certainly doesn't make your daily life any easier on you, does it?
If you haven't kept a journal of your symptoms, doctor visits, proposed diagnoses, medications, now is a good time to do that. Do you see a pattern? Are symptoms worse given a day of the week, or activities?

Have you considered any of the following:
-Did you move or change work location in the the time period since August 2019? Is it possible there is a causant factor in a new environment? Thinking about mold toxicity or asbestos or lead poisoning here.
-Do you camp or get out into the woods? Have you been tested for Lyme disease?
-Have you considered the services of a environmental or functional medicine doctor, to look at all the things that may be contributing to your symptoms?

These thoughts are what came to mind as i read your post. There are so many people here on Connect, someone may have a similar situation and will jump in to support you, also. Good luck and please post if we can help further, or when you get further along in your investigation!
Ginger

@ajidzior Hi Amy - I am so sorry for all that you’re going through. I can’t offer much help, only virtual support, but I have a couple thoughts/questions.
1. Have you seen a neurologist?
2. Have they considered autonomic dysfunction? Or POTS?
3. Have they tested for Sjögren’s syndrome?
Many autoimmune diseases are very difficult to uncover. If you haven’t seen a neurologist yet, you may consider that. I have some similar symptoms but definitely some differences and after years of being undiagnosed, I finally went to a neurologist and got answers. I have POTS, autonomic dysfunction and small fibers neuropathy (idiopathic). I’ve heard that illnesses such as mono and COVID can cause some of these conditions.
I’m sorry I can’t offer much help but I am here to support as are many others in this forum. Please continue to reach out. You’re doing all the right things by being an advocate for your own health. I hope you find answers soon.
Wishing you well,
Robyn

Have you looked into a mast cell activation issue?? This guide can help you rule in or rule out a mast cell issue. It is written by some of the top doctors in the us on the subject. Once I tested and found a mast cell issues, I began treatment, mostly over the counter meds and supplements, I am much better. I believe my mast cell issues started after 2 very serious infections! Btw, Mayo will not treat mast cell activation syndrome, only to most serious version of mast cell cancers.
https://www.ehlers-danlos.com/wp-content/uploads/MCAS-Primer-for-the-Gastroenterologist.pdf

Hi Amy. I am not a mentor, but my heart goes out to you! It appears that your immune system got overwhelmed with 2 huge back to back viruses. Your body is fighting off the ongoing covid fallout after having your infection fighting spleen abilities reduced from the mono. There are long covid programs being created at various medical/research institutions. You clearly need a comprehensive approach. Maybe the mentors could direct you to one close by. Covid attacks every system of the body, so a program which is set up to recognize this might be a good choice. Your body needs rest, but that includes mild movement. As a runner, you likely have a tendency to push yourself hard. This would be the time to carefully titrate your excursion, and build in lots of rest and nutrition; maybe consider smaller increments, smaller goals. Dont go for where you left off. This is all new..... even for the treating physicians. I hope you can find resolution and freedom from the pain and fatigue...... both emotionally and physically.
UP Artist

Same symptoms. Just minus Covid and add PMR and GCA. But all the rest is me. Blood pressure uncontrolled even on beta blockers. If you find an answer let me know. Sorry I cannot be of any help.
Marilyn.

Amy -
UP Artist is correct about the breadth of damage Covid can cause. Particularly since Covid has been identified as being a cause of Vasculitis - swelling of the bodies vascular system that can damage any organ.
Also the comment about approaching any lingering post infection problems from a multi-faceted point of view. A long covid treatment program is a good start if available in your area.
But, if not there are diagnostic areas that you and your Doctor might want to explore to help give you a medical frame of reference. Basically, it is the old ‘measure to manage’ approach.
There are several tests that can begin to define that framework: CRP test is a gauge of overall inflammation; a B12 test because B vitamins help reduce inflammation and nutrient utilization; Adrenal function test since Cortisol is the body’s primary anti-inflammation mechanism, and a DAO test measures the gut’s ability to create the body’s natural anti-histamine.
This type of testing won’t solve any medical issues you have, but it is a start for defining what and how your body is functioning.
And finally, the comment about resting more and limiting physical stress it very good advice. Pre Covid, you may have been very focused on physical fitness, but your post covid reality is that your body needs to repair itself and the energy that you have used in your fitness activity could be better utilized in getting better first before you return to your fitness efforts.
Chris47 -
PS - I am not an MD. But have been managing my Celiac Disease for the last 30 years and CD symptoms are very similar to many of the symptoms associated with long Covid - particularly since both cause major immune system responses!

The timeline indicates the precipitating factor for your illness could have been the vaccines. The symptoms and etiology of vaccine long-haulers resemble those of Covid long-haulers. I agree with the recommendation to see a neurologist. In addition to the symptoms that suggest autonomic dysfunction, the tight tendons in your feet could be neurological. The first symptom of my vaccine injury was tightness in my feet and calves and muscle spasms in my feet These were later confirmed to be neurological. You can learn more about vaccine injuries by joining the Neuro V Long-Haulers Facebook group.