South eastern Florida. Palm beach county. Inland fresh water canal. 2 large adults with a large fry ball.
I see lots of them regularly as this canal is in my yard and I’m always told they’re not snakehead. That snakehead are rare in PBC. I have a hard time seeing the anal fin without catching them and they do not seem to go after lures while breeding.
I’m not looking for a diagnosis. Just an options and maybe similar experiences and definitely an outside perspective. I’ll try to summarize as best I can but it’s going to be long. Sorry.
2019/early 2020 - prolonged joint pain and difficulty breathing. After some testing I was diagnosed with sudden onset severe asthma and seronegative RA. I was also concerned about my thyroid as I have a strong family History of thyroid issues on my dad side and some of my sisters. But my gp became dismissive of my requests to monitor my thyroid. I found meds and a new routine that worked well for me. I started to feel better and my bloodwork started to reflect less inflammation. I maintained that for about two years. My rheum was happy with my numbers and I felt good. Was able to get back to running and the gym and lifting and overall felt a ton better.
Summer of 2021- I get covid. I did not get horribly sick but I did have symptoms and they lingered. Horrible body aches. Brain fog. Mild fever. Those all lasted for over a month and I was actively testing positive the entire Time. I also lost my taste and smell almost immediately. Even as my other symptoms started to subside my taste and smell did not return at all.
fall of 2022- i took my first vacation since COVID started. Spent the week in Chicago enjoying the cold weather and walking around downtown which is something we’ve done many times in the years before Covid. Well I head home, wake up the morning after I get off the plane and I have a high fever and feel AWFUL. Test positive for Covid again. Same story as before. Symptoms last over a month and I actively test positive the entire time. My smell and taste still had not returned from the first bout so that was ongoing. December I try to get myself back to a normal work schedule and life but I am struggling. In my opinion this is the beginning of everything going really downhill.
All my lifelong quirks and annoyances are now very suddenly unmanageable. My terrible but previously managed sleep issues are now out of control. Sleep specialist did multiple sleep studies and testing and I am then diagnosed with type 1 narcolepsy with insomnia. It takes some trial and error and due to insurance delays but I finally get on a medicine regimen that works very well for my daytime sleepiness and is really helping my brain fog. But in general I’m still feeling overall awful.
My environmental allergies I’ve had most of my life have ramped up exponentially. So I up all the stuff I do to help. Filters. Cleaning. Etc. But I’m not able to take antihistamines as I do not respond well to them. I have tried for years.
I have also had stomach issues most of my life. Typically it’s just been lots of stomach pain and consistent acid reflux. But I found ways to manage it for the list part. But now it’s ramped up majorly. I head to a new gastro as I’m in pretty severe pain every time I eat now. And have reflux basically 20 hours a day almost every day. She agrees to do an endo and runs some tests. She gives me the results as “chronic unexplained inflammation” and just says take Pepcid twice a day for forever. No real diagnosis. And refuses to investigate any further. So I continue to manage as best I can.
Cut to 2023- Im still feeling worse overall. I still don’t have any real answers. But strange and what seems like random symptoms start popping up. I start getting cold hives and my eczema flares badly. I’m scratching my skin so badly at night I’m covered in large bruises when I wake up. My skin starts becoming overall painful. I head back to the allergist. They run another allergy panel and tell me I’m still really allergic to a lot of environmental things. But offer no real insight into my other symptoms I bring up. I put the allergist on the back burner because they want to discuss trying shots again and I just didn’t have the capacity to coordinate that and I had more pressing issues coming up.
I moved and started seeing a new gp and thankfully she actually listened. She ran a bunch of tests for my stomach pain that the gastro refused to do. Including h pylori, salmonella and shigella, ova and parasites, giardia, and calprotectin. They all came back negative. She found out I was low in vitamin b12 and vitamin d. So I started working on that. She ran an allergy panel for food allergies which the allergist wouldn’t do. She found out im allergic to wheat. So I removed it from my diet. But I’m still feeling like crap even after working on all that stuff. So I talk to her about my thyroid. She runs a basic panel and does not like what she sees. I have really high antibodies which my previous gp said didn’t mean anything at all. Current gp refers me to an endocrinologist.
Endo diagnoses me with Hashimoto’s and sub clinical hypothyroidism. My tsh start going crazy up and down. Low. Then high. Then normal. Then high again. So I start on selenium, synthroid, and a few other supplements. It’s helping my tsh regulate but it’s still a work in progress.
But I still overall feel like crap. When I moved I also had to switch to a new rheumatologist which was terrible. The new one completely dismissed me and continued to tell me nothing was wrong with me. That I’m fine. She keeps cutting my medication dosage and says I’m fine. Even when I’m complaining of joint pain and fatigue. Then suddenly My ankles start swelling. She doesn’t even lift my Pant leg to look at them or palpate them. She tells me it’s an RA flare and gives me steroids. Even though the appointment right before that she told me I didn’t even have RA. So I take the steroids and the swelling and stiffness gets better. But she’s still not willing to discuss anything with me and I still feel like crap
2024- it was a blur of a new job. Being laid off from said new job. Lots of pain. Weird symptoms still coming and going. Fighting with the rheumatologist and trying to do lots of my own reading to be able to ask questions and help me get some answers.
2025- I still don’t have my taste or smell back. It’s been 4 plus years. I still have phantom smells. When I eat something my brain can tell me what I’m eating even with my eyes closed but I don’t taste it. It doesn’t make sense. I know. It’s weird and odd and my drs all dismiss it totally. the new rheumatologist ends up moving to another office that’s too far from me so I get switched to a different Dr in the same practice. I start going over my complaints with him that his colleague was dismissing/ told me it’s all my Hashimoto’s. He says he doesn’t think I’m crazy and wants to run some different tests. So I get hopeful.
In the meantime I also started having carpal tunnel symptoms again. I was diagnosed with it back in 2018 but was able to manage and alter the way I did certain things that the symptoms dissipated and the nerve pain was gone. Well I tried those same things now in 2025 and my symptoms only got worse. So I did bilateral closed carpal tunnel release. There was only about 2 weeks between the two procedures last summer. Initially surgery went well. Immediate relief of the nerve pain and numbness. But Not long after the second surgery my body totally freaks out and my ankles swell again. Badly. My first surgical site develops a huge lumpy scar literally overnight and my hand goes completely numb. I end up in months of pt and scar therapy. PT helps but the scar tissue keeps coming back. It has resulted in too much scarring suddenly forming over the surgical site and I’m right back where I started. My nerve is completely compressed again. Nerve pain nightly. Hand is numb and getting weaker. This has been ongoing for the last 12 months. I am now currently scheduled for another round of surgery to try and repair it for good and hopefully minimize more scarring.
After that second surgery everything flared again badly. My heart palpitations were AWFUL. I constantly felt like I was going to pass out. Shortness of breath. Plus all the other symptoms. And to add to it I start having what seemed to be allergic Reactions to food I’m not allergic to. Lip swelling. Throat tightening. Flushing. Pain. And awful stomach issues. But it’s not consistent with the same foods everytime. It’s random and stressful and giving me weird food anxiety. I’m already wheat and gluten free. But I never know what’s going to cause a weird reaction now.
2026- So I try another new allergist who is supposed to also be an immunologist, as my old one left the other practice so I had to find a new one regardless. New one mentions things like it could possibly be mcas, mctd, mastocytosis, etc. she runs a few blood panels. All my food allergies come back clear except wheat. She says your tryptase is fine. You don’t have mcas or mastocytosis. The celiac panel was negative. But I told her I haven’t eaten gluten in over two years and the lab said it would affect the results. She said no they’re wrong. I’m negative so I don’t have celiac. So She says she doesn’t think anything I’m going through is allergy/immune related. I push back like I do with every other Dr and it seems to annoy her. She offers no real answers except to push a monthly biologic injection on me and says “we don’t always know the cause of things. Something things just happen. So let’s just treat your symptoms and move on.” She then proceeds to move all my future appts to the np in the office and doesn’t even tell me. I declined the biologic without further information on what’s actually happening with my body chick she didn’t seem to like.
So my next appt the np wants to do a food allergy panel skin prick. I say fine. The test doesn’t go well. I react to every single allergen tested and my entire arm swells up before the test even really gets going. She tells me the test is now considered invalid and inconclusive. I push back again. It may not be the typical expected result but it’s still a result. My body is clearly having an issue with something that is causing an overall reaction. She doesn’t agree. So I just leave and cancel all future appts. She did agree however to write me a script for an epi pen just in case since im now having throat issues and breathing issues.
Gp refers me to cardiologist for severe heart plantations and shortness of breathe. My father passed away suddenly from a heart attack so I’m always worried about heart issues. I do an almost month long holter study and an echo. He says my heart looks perfect. He doesn’t see any issues. And he dismisses the palpitations completely.
Next appt with new rheum and he it’s time to run those new tests. He does a repeat advise panel. I had one done the year prior with the dismissive dr. And he also wants to do a QEeg. Avise panel comes back negative for everything except thyroid issues. He changes my diagnosis from RA to fibromyalgia and POTS. but the qeeg says I’m fine except the all encompassing diagnosis of “anxiety.” That made me so mad. I told him I don’t have anxiety that’s causing all these symptoms. All these symptoms are starting to give me anxiety because I can’t figure them out and they’re feeling unpredictable and continue to get worse and no one wants to help. He kind of dismissed that thought and said well the test says you have anxiety. He did start me on low dose naltrexone for fibromyalgia and took me off hydroxycholoquine since he doesn’t think I have RA. The LDN has helped something’s. But in general I still feel like crap.
To add to everything above I’m now having horrible hives from going out in sun. My Eye lids swell. My lips swell. My throat tightens. My legs have also started swelling. I ended up at urgent care one weekend worried about blood clots because my Legs were swelling so badly. Ultrasound didn’t find any blood clots but my legs are constantly in pain and swelling. Anything that slightly pushes on my legs causes dents and skin pain. I wear compression socks which do help but I do have to take breaks from them as my skin starts to hurt.
When I asked why there was such a discrepancy between the avise panel and all my other bloodwork he says avise is just more thorough and that all my other positives from other labs were false positives. Now I have been having panels run for years with differing labs showing issues multiple times with positive Ana’s. Elevated rnp. Elevated crp. Elevated hs crp. Elevated ige. Elevated eosinophils. Low igm. Low gamma globulin. And I constantly have elevated rbc, hemoglobin, and hematocrit. Plus more. I bring all this up to all my specialists. They’re usually dismissive of it saying well it’s just outside of normal or “we don’t really worry about things like that” or that it’s an issue that’s outside of their scope. No one ever has real answers. But it doesn’t make sense to me that all other labs were wrong and gave false positives for years. But avise says I’m totally fine sans thyroid antibodies.
I’m at my wits end. I’m not trying to dr shop. I just want some answers and I want to feel better. I used to be a runner. I would run 4-5 days a week 3-5 miles a day. I would spend most of my time out of the house and outside enjoying fishing, boating, watching tons of outdoor sports, and traveling. I can’t do any of it anymore. I have no tolerance for exercise. I can’t go out in the heat or sun. I can’t go out in cold weather. I can’t even take warm showers anymore. I can’t put ice or heat on my painful joints because I swell up and have horrible hives. I can’t even handle long car rides without feeling totally awful and my heart going insane. My eyes lids are just endlessly painful. My skin hurts all the time. The fatigue is awful. Running a single errand or two and I feel completely wiped out. The stomach issues and reflux are worse than ever. When they flare up at their worst I am sick after every single meal and in almost constant pain. The random allergic reactions to food makes me not want to eat at all. But if I wait too long in between meals I get horrible heart palpitations. If I eat a single large meal once a day I get horrible heart palpitations and chest pain. If I don’t wear my compression socks at my desk my legs swell and hurt and I can barely move my ankles. My muscles are in constant pain and at the same time are completely fatigued.
Avise panel ruled out lupus, RA, and sjogrens. Sjogrens in very strong in my family. Maternal grandmother and grandfather both had it. Mother was diagnosed with it years ago as well. So it’s always in the back of my Mind. But avise Said I had a negative Ana. Negative rnp. Crp was normal. Everything came back negative and normal except thyroid. So now new rheumatologist also pushes the blame all on my thyroid. when I tell him my thyroid numbers are improving but I’m feeling worse and symptoms are getting worse he says speak to your endo about it. Which I do. She does not feel the majority of my active symptoms are related to my thyroid issues. I’m tired of feeling like crap and the symptoms are just continuing to worsen. The rheumatologist must not have liked my pushing back because he has now also moved my next appt from him to the in office np.
I guess my biggest question is should I keep pushing? If my endo doesn’t think it’s solely related to my thyroid to me that means something else is going on. But I haven’t been able to find an allergist or rheumatologist who will agree to investigate any further. My gp says she does think it’s more than my Hashimoto’s but she has run out of recommendations of drs to try.
My current list of active symptoms are:
joint pain
Fatigue
Brain fog/short term memory issues
Temperature intolerance
Exercise intolerance
Heart palpitations
Dizziness
Shortness of breathe
Cold hives
Heat/sun related hives
Facial flushing
Discoloration around the eyes
Eczema flare ups
Lower extremity swelling
Severe headaches
Low and high bp
Body aches
Food reactions
Facial swelling
Lip swelling
Throat tightness/difficulty swallowing
Pain and pressure in my legs especially when active
Bouts of heavy bruising
Sporadic Over reactions to bug bites/minor scratches
Horrible reflux
Pain when eating
Nausea
Diarrhea/constipation
Muscle pain
Muscle fatigue
Eye pain
Difficulty with my vision/blurry vision
Eye pressure/sinus pressure
And I know im forgetting some.
And the list of drs I’ve seen to find answers include:
general practitioner (x2)
Pulmonologist
Rheumatologist (x3)
Allergist (x4)
Cardiologist
Neurologist
Sleep specialist
Gastroenterologist
Orthopedic
Physical therapist
Endocrinologist (x2)
Opthomologist
Plus random urgent care visits when needed
So it’s not like I’m just trying to use Dr Google or avoid doctors. I’m just getting dismissed when the tests don’t make sense or align with what they thought it would be.
All of these symptoms ebb and flow. Sometimes they are downright awful. Sometimes just noticeable enough to be annoying. But they never fully go away. I haven’t been able to pinpoint a cycle or direct triggers for most of them. And I list the symptoms not for a diagnosis but to show the scope of how much of my body is being affected. It’s not one or two systems. It seems to be every system is having issues.
I can tell you when my sleep is especially bad and my stress levels are high that will always start an especially bad flare up.
I can attribute some of my symptoms to my thyroid, pots, and narcolepsy obviously. I’m not really sure about the fibromyalgia diagnosis in general. He gave me no real info on anything in regards to fibromyalgia so I’ve been doing all my own reading. But I can see where some would tie into that as well from what I’ve read. But I really feel like something is tied into my immune system and overreactions to things. But I can’t get my current rheum and allergist to even discuss things with me. And there are not too many other doctor options left in my area. But I am always looking and asking around for better options. But is that what I should be doing and pushing for?
Am I being dramatic and all of this can be explained between my current diagnosis’? Should I stop pushing for better answers because there are not any better answers? Deep down I feel like there is more going on and that I don’t have the full scope of the picture to be able to find the right path to feeling better. So I’m hoping I can get some insight. Maybe someone has had similar experiences. I don’t know anymore. I’m just over it all.
Because all the while, like most of us, I’m still having to be a responsible adult and work and take care of life. But that is getting to the point of impossible. I’m scheduled for my third wrist surgery next week and I’m honestly worried how my body is going to respond. I have to stop my LDN this week in preparation for surgery so I know my pain level is going to go up just from that. But hopefully I can manage and just keep going with it all. If anyone has any insight or direction I’m all ears. Thanks for reading this ridiculous rant.
Super bummed. I am 14 months out from bilateral closed carpal tunnel release. Did the dominant (left) hand first which went well with no complications. Did the right hand 2.5 weeks later. At pre op for the second surgery my surgeon did another post op check on the left. He said it looked great and it was feeling pretty good considering.
Right hand surgery went very well minus some severe nerve pain the evening of surgery. But it resided by the morning and was just the normal post surgical pain and tenderness.
Two days after the second release my left hand (first surgery) freaked out and I developed a huge lumpy scar overnight and my hand went completely numb with no sensation at all. Headed back to the surgeon. He did steroid injections and sent me off to pt which I did for three months which included ultrasound therapy, scar massage therapy, and pt. My scar basically reduced down to nothing and the feeling slowly worked its way back into my left hand.
Meanwhile my right hand was being difficult to heal but functionally was great. No pain. No numbness. Just slow to and slightly uncooperative to heal. But that can be normal for me.
Suddenly in December my left hand started to go numb again. I did my normal at home stuff and tried to rest and see if it would dissipate. It didn’t. Headed back to the surgeon. Did another steroid injection and he said give it some time to settle. If it’s still painful and numb come back. And it did start to settle. Pain was reducing and the numbness was fading again. But by March it came flooding back very suddenly. So I headed back to the surgeon again. He was concerned it may be something beyond my wrist so he had me do a precautionary cervical mri to rule out any issue with herniated discs etc. most of my cervical discs slightly bulge but nothing is actually touching the nerve at all to cause any compression. So back the neurologist to see what’s happening.
I just had that appointment today. Neurologist was surprised to see me back. Did a followup EMG on the right hand and it was all good. All my results were much improved from prior to the release and right in the middle of a normal response. Then he got to the left hand. And he was kind of take aback. Motor latency was severely delayed and even worse than before the release. And he was unable to get any medial nerve reaction at all. Ugh.
I have several autoimmune conditions so my immune system tends to either completely over react or do absolutely nothing at all. It’s never an in between. So I do not believe it was a surgical issue as I had a good window of immediate improvement. I’m just super bummed to see that it’s worse than before.
I have to schedule a follow up with the surgeon tomorrow to discuss options. Neurologist is suggesting an mri to get a clear picture on what’s happening as he thinks it may be an over growth of scar tissue and not an incomplete release since I went a few months with normal function.
Has anyone had any similar issues like this? My chronic health issues do tend to play a part in my healing. So I’m worried about another potential surgery. And if my immune systems decides to freak out and create even more scar tissue. But I’m being woken up almost every night again with nerve pain. My grip strength is non existent. My hand literally completely cramped up and wouldn’t function this morning at breakfast while I ate a bowl of cereal. And of course it’s my dominant hand. So it’s making most things difficult and painful at best.
Any insight or thoughts would be appreciated.