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Avatar universal

Months of mysterious pains & no explanations *frustrated*

Backstory: 26 Female. I am a previous smoker (stopped 2014) and used to be a pretty heavy drinker but currently only drink very rarely and in moderation.
In 2013 I had a parathyroidectomy in hopes to lower high calcium levels doctors were finding in my blood. Unfortunately, the surgery did not help so I went to see a specialist at the same hospital who diagnosed me with familial hypocalciuric hypercalcemia which is a benign genetic condition that causes high calcium levels. As well, I had an MRI done late last year because I was having very strange week-long headaches tied with neurological problems. They found something with the pituitary gland and my doctor said it could be because I moved slightly during the MRI. I have yet to go get a second MRI with contrast. In January of this year, I had an ultrasound of my heart which came back normal. I was having some chest pains along with shortness of breath that doctors said was probably just costochondritis. Other than that, I have no history of any medical problems. I rarely ever get sick besides minor colds and consider myself to be a pretty healthy, happy individual, up until this point...

This is going to be a long post, but any advice or tips would be greatly appreciated!

Mid-February I came down with a really bad flu (Influenza A per nasal swab to be exact). I haven't gotten the flu since I was a child, but I understand it was a pretty bad flu season. A few weeks after this, I started getting a very dry cough (started 3/16 and this is when the whole coronavirus situation started so of course I was a bit worried). The cough started out as barely a cough and more of an irritating itch in the back of my throat. By the end of the week the cough was more persistent, although it was still dry, and no phlegm was ever produced. That Sunday, I started getting severe shortness of breath on a daily basis to where I was telling my boyfriend he might have to call a paramedic. Very hard to breathe, lying on the floor trying to catch my breath bad, along with feeling lightheaded. During this time, I had absolutely no appetite and would barely eat. I ended up being fine but decided to get myself to the ER on 3/30. Chest x-ray and labs were done and normal and the doctor diagnosed me with bronchitis. (And yes, my boyfriend and I had quarantined ourselves during all of this just in case it was Covid.) I had periods that lasted 2-3 days where I wasn't coughing at all and then the cough would return.
April 7-April 11 I started getting a mild headache that would come and go throughout the day. I didn't think much of it until the night of April 12 the headache suddenly became very severe and debilitating. I was in tears from the pain. I went to sleep with the headache and I woke up with the headache. It lasted all day, unrelenting. No medication helped. And once again, during this time I had no appetite and went days without hardly eating. I lost about 10 pounds during this time. The pain was all over my head along with a pressure or tight band feeling wrapping around the front and top. The pain would navigate all over different areas of my head and my neck was tight and hurt to move. I deal with frequent headaches but never in my life have I experienced this. At times it felt like someone was hitting my head with a hammer. I talked to my doctor on 4/14 who said it was most likely a tension-migraine combo but ordered me another MRI for reassurance. The night after I talked to my doctor I was in bed when I get a sudden sharp pain running along the curve of my neck and down into my shoulder blade. The pain was bad, but it subsided after a while. I went to sleep and woke up with a dull, achy pain in my arm that is still with me today, coming and going at random times. I had the MRI done a week after talking to my doctor (still had the horrible headache) and it came back normal except for some inflammation in my sinuses. The headache slowly subsided days after I had the MRI.

Going back to the pain in my right arm that started on 4/14….The pain is daily but never constant. It’s a very dull pain and feels deep. Sometimes it radiates into my elbow, wrist, neck, shoulder, and shoulder blade, but much of the pain is in my elbow and top of forearm. I also started noticing that my left arm would hurt sometimes as well just not nearly as bad and less frequently. On 4/25 I started having a very slight pain in my legs that would come and go, similar to the arm pain. It felt like an aching in my knees, right above my knees, and my front lower legs.  On 4/27 I took myself to urgent care because I started having chest pain on the left side along with this mysterious arm and leg pain. The doctor did an ekg which was normal and sent me home. The doctor didn't have any explanation for my arm pain. The chest pain went away later that day....
The next day 4/28, I woke up with extreme soreness in my legs that I shrugged off to the fact that my boyfriend and I had gone on a walk the evening before and I haven't been as active so my muscles are probably not as strong. The tendons in my ankles and foot hurt and I could barely walk. My calves were hurting as well. That was not that concerning to me, because I thought the pain would get better with rest. The soreness did get better but I’m still having the aching feeling and it’s gotten worse since the day I went to urgent care. The pain is now in my knee, behind my knee, my calf, back and front of thigh and down the front lower half of my leg, sometimes my foot and ankle, and sometimes radiating into my hip. I have gone on multiple walks thinking if I exercise it will help but my right calf always starts cramping up almost like it's going to turn into a charlie horse, and the pain does not improve when I rest (pain is in both legs but much more so in my Right). I have shed tears because the pain in my legs is so bad, and at times I can barely flex my toes because it hurts to do so. I’ve also been having tremors in my hands, not sure if it’s related to the pain I’m experiencing. I decided to once again take myself to a different urgent care on 4/30. The doctor reassured me it couldn’t be a blood clot due to the fact I’m having pains in both of my legs (even though I told her there is more pain in my right). She did some blood work and I went home to wait for the results. The pain was tolerable during that weekend but Sunday night I started getting chest pains in the left side again. I tried sleeping it off, but I could barely sleep from the pain. I was freaking out thinking if there’s pain in my leg it could be a blood clot and now it’s made its way into my lung. Not wanting to go but also not wanting to be sorry, I took myself to the Emergency Room on 5/4. They did ekg, blood and urine tests, chest x-ray and ultrasound of my legs to make sure I have no blood clots or heart problems. And everything came back NORMAL. Although I am greatly relieved there are no clots, I’m left stumped as to why I am having all this pain throughout my body. I’m still having reoccurring chest pain that is sharp, as well as the leg pain. I was looking at the blood results from the 5/4 ER visit, and my WBC is 5 points higher than when I went to the ER back in March, although it’s in normal range. Does this mean anything? My neutrophils were also abnormally high and my lymphocyte count was abnormally low. Could this just be an indication of the URI I had back in March or could it be that my body is fighting off a different infection currently…  There was also a small trace of blood in my urine but I’m assuming this isn’t a cause for concern since the doctor didn’t mention this.
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Avatar universal
Wow, so sorry to hear you’re going thru all this, sounds absolutely horrible. I’m not a Dr., but I’m gonna stick my neck out & say I do NOT think this is COVID. You haven’t mentioned having a fever, which I believe nearly 100% of COVID patients have.

I was surprised at your description of cough but no phlegm being diagnosed as bronchitis - normally w/ bronchitis you’d have a LOT of phlegm, so that didn’t make sense to me.

Your bewildering array of symptoms - headaches, pains in the neck & legs, etc. makes me think this could be some  type of neurological issue. Is there any possibility you were ever exposed to some type of neurotoxin? Sometimes an exposure to some chemical agent could cause all kinds of prblms similar to what you’re describing. One reason I say this is, w/ all the tests you’ve had, no one has ever found evidence of any type of infectious agent, like a virus (such as COVID) or bacteria.

I think you’re going to need to see some type of specialist, someone who specializes in unusual cases like yours & prbly someone who’s dealt with neurotoxin exposure. Please understand, this is only a guess, I’m not a Dr., but this just doesn’t sound like smthg that’s going to respond to everyday medical treatment & diagnoses - if it did, I think they’d have found smthg by now. And don’t take that as if I’m saying your symptoms are all in your head - not at all. I believe what you’re saying, I just think you need to go a different direction, since all the usual medical tests & treatments seem to have failed you.

One thing I always tell ppl is, be your own best advocate - do some research on your own, learn as much about other ppl going thru similar issues & see if that leads you somewhere. Don’t give up - continue to stand up for yourself & be your own best medical advocate. I wish you luck in your fight to beat this  thing!
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Avatar universal
I’m suffering exactly like this too and am currently in hospital with a raised blood d-Dimer of 2000+ . Microvascular clotting might be the issue but worth getting checked . Take care .
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Avatar universal
No idea but it sure sounds exactly like covid.  A lot of the tests are quite bad, with a lot of false negatives, but you sure got all the symptoms of a pandemic that is now going on.  You might want to get tested again and maybe get tested for the antibodies -- but you have to get an FDA approved test, there are a lot of bad ones out there.  If you have antibodies, you had covid.  Now, it could obviously be something else or several other things at once, you've had some history there.  You can have the flu and covid at the same time.  It would just be an odd coincidence that you have the exact symptoms of an epidemic and not have it, no?
Helpful - 0
I honestly had no clue that besides the cough, everything else I have are symptoms of covid...the doctor at the hospital also told me that I couldnt get tested for covid unless I was in the ICU
I think it sounds like covid, too. At your ER visit on 5/4, they said you had to be in the ICU? I'd follow up and ask if they think you have it, because if not, you need to continue testing.

I don't know where you live, but where I live, anyone can get tested now. If you're in the US, call your local health department and find out what the testing status is for your state. You at least need to rule this out.

Symptoms of covid -

https://www.cdc.gov/coronavirus/2019-ncov/symptoms-testing/symptoms.html - this is not an all inclusive list, but does have a self-check.



Avatar universal
The doctor from urgent care also called me later that day and said my blood work came back good with no signs of lupus, arthritis, inflammation, or infection. I am questioning what I should do and who I should talk to besides my doctor because I have already spoken to her and she doesn’t seem to take me seriously and thinks it’s just anxiety (asked for an order of full blood work and she didn’t think it was necessary). Could I be delusional and all this pain is just in my head? (It’s not) At this point I am just wondering what’s next? I am trying my best to stay positive but all I want is to feel normal again and it’s really putting me in a bad spot mentally. Could this type of pain be brought on by stress? Could the arm and leg pain be caused by a pinched nerve or spinal issue? I haven’t really had any problems with my back… Could it be possible that the familial hypocalciuric hypercalcemia was a misdiagnosis and the high calcium levels in my blood are starting to cause these problems? My calcium levels are not that much higher than the normal range….
To anyone with advice or someone who has experienced similar issues it would be great to get your input on this…
Thank you
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