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Unable to receive a dx, don't know where to turn next.
Hello!
My name is Gabby and I am a 22 yo female. Recently this past November 2023 I started to receive extreme episodes of chest pain that come and go. I have made 2 ER trips in the beginning of my journey due to believing I was having a heart attack or PE. The episodes felt like crushing, squeezing left sided chest pain with SOB. The ER visits proved unhelpful, my labs. ECG, Chest Xray, and D Dimer came back normal as well as any cardiac labs. December 2023 I was sent to a cardiologist for a follow up with a dx of pericarditis.
I have had multiple cardiologist tests (ECG, Echo-Cardiogram, Stress test, Holter Monitor) and visits over the past two years due to unspecified cardiac issues. There was no conclusion or dx, I was told I am simply too young to worry about cardiac issues. This most recent visit proved relatively similar which is understandable.
My CBCs and Metabolic Panels and Inflammatory markers for Pericarditis have all come back completely normal with the exception of my ANA labs. I have a positive ANA with an ANA titer of 1:2560 speckled. After the ANA labs I had ENA labs ran which all came back negative, along with hand x-rays for RA and c3 and c4 components in normal range.
My Lymph nodes in my neck and armpits have remained enlarged almost every other day.
Since November I am still having episodes although the pain in my chest does not go away. I am in a constant state of chest pain ranging from sharp to dull aches at all times of the day. The pain radiates from left to right and at some points I feel chest pain bilaterally all day. Accompanying these sx is extreme fatigue starting mid 2023 that has progressively gotten worse to the point where I need to sleep 12 hours and am unable to do normal household tasks without having to lay down. No matter how much caffeine or how much sleep or rest I get I cannot seem to regain any energy.
I have been prescribed NSAIDS and gabapentin, but it does not seem to do anything.
My husband and I are completely lost on where to turn next as my sx seem to just progressively get worse. I have seen a cardiologist and a rheumatologist but have received no help or anywhere closer to a dx.
There was a suspicion of Lupus but that proved negative so far. I’ve also looked into Intercostal Neuralgia and the symptoms are pretty parallel. Just confused!
If anyone has any insight on what may be going on or where to go from here I would so greatly appreciate it. I'm only 22 and feel like my quality of life should not be this way and need answers!!
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This might not pertain to you but I will mention it just incase is any of your meds causing it. December of 22 I went to the ER 3 times in 8 days with chest pains , palpitations, fluttering and was told everything was good. I have taken Flomax at night before with no problems, this time I was told to take it in the morning after 3rd ER visit I stopped the Flomax and chest pains went away. A couple days later I took another one and chest pains started again. But I don’t know anything, at least this Plumber got rid of the chest pains the doctors couldn’t
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1 Reaction@pb50 Flexeril or clobenzaprine was not discontinued but its use has severely decreased due to its drug classification as benzodiazepine.
I was led to believe when I specifically asked the surgeon for Flexoril that the brand drug is no longer available but a generic formulation - cyclobenzadrine - is. So that’s what I received. And it is a great drug for those who don’t have addictive physiology and/or personality. And not so much for those who do. And you can’t tell beforehand who has what tendencies. But since I took it after back surgery in the 80’s, we both felt comfortable with me taking it.
I am wondering what made the cardiologist think you had pericarditis. If echocardiogram and inflammation markers were normal, did he hear a friction rub when listening to your heart Sign of inflamed pericardium) or see abnormalities on EKG? With an ANA of 1:1250, lupus should certainly be considered even if all other tests were negative at this point. That is a high titer and clinically significant. Pericarditis is sometimes the presenting symptom of lupus. Pleurisy is also very common in lupus and causes chest pain, usually sharp, worsened with a deep breath. It doesn’t always show up on xrays. The fatigue you describe is severe and should not be in a 22 year old. I would get copies of all your test results, look for high and low flags on lab tests, and make sure you get follow up with a rheumatologist. You may need to see a new one. It can take awhile to get a diagnosis and some Drs are very reluctant to diagnose anyone with lupus or similar autoimmune diseases. Look at a list of lupus symptoms and see if you have any other symptoms like sun sensitivity, malar rash, hair loss etc. Also make sure a urinalysis has been done and is normal. You deserve a thorough evaluation by someone who truly cares about how your quality of life is suffering. I have lupus and it took 10 years for me to be diagnosed. I don’t want ANYONE to go through that, and you have to be persistent and advocate for yourself,I wish you better luck going forward and will follow your threads to see if I can help out.
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5 ReactionsJust in case this info might be helpful:
US News Publishes their list of the best hospitals, nationally, in case this info may help.
US News Hospital Rankings
https://health.usnews.com/best-hospitals/rankings
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Best Hospitals for Cardiology, Heart & Vascular Surgery
https://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery
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The thought there might be that the very best cardiac doctors in the country, might have another insight?
I don't know....
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2 ReactionsYou might want to take a deeper dive into Chronic Fatigue. See if you can find a physician who works specifically on Chronic Fatigue. And, you also might want to join with a chronic fatigue support group and ask them about your conditions, see if they know of folks with similar issues.
M.E. Action:
https://www.meaction.net/
and, might want to do the same with all the major chronic illnesses: Lupus, Lyme, Fibro, more...
Also things like MS...
Sometimes solving a medical mystery can take a concerted effort.
And here are a couple of clinics that engage with some more unusual illnesses:
Environmental Health Center in Dallas
(does a lot of work with chemical injury, like from Ground Zero)
https://www.ehcd.com/
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Parent organization:
American Academy of Environmental Medicine
https://www.aaemonline.org/
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Clymer Clinic
https://clymerhealingcenter.com/
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Never hurts to have your home and workplace assessed for potential environmental issues: Mold, Radon, other radiation, chemical pollution, CO, gas leaks, freon leaks...etc. etc. etc.
Development of profound allergies ---- food allergies, allergies to detergents (making all sheets and clothes an allergic experience)
Well, that's what I have for now.
I am very very sorry about the problems.
Take care..
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2 ReactionsHey, I understand how frustrating it can be when dealing with a chronic pain issue with no definitive diagnosis related to the symptoms, especially in someone so young. I also take Cyclobenzaprine for muscle spasms in my neck and it is helpful. If I may...just a slight, but important, distinction about "addictive personality", which is actually a common misnomer and is, more accurately, an addictive tendency, often genetic, and not part of our personality. I wish you well in your pursuit of comfort and treatment.
One more thing I wanted to mention is tetany. It's another thing I deal with. It is these constant muscular cramping issues.
I used to get about 2 - 3 Charlie Horses a week. Now it is up to maybe 10 a week. And I also get cramping that is not quite at the level of a Charlie Horse.
I get the typical ones in my calves...but I also get them in my feet...and I do sometimes get them in my chest (I assume it is the diaphragm that is cramping). And sometimes it grips me and does feel like chest pain.
And you get that fear that it is cardiac.
Once again, sorry about the problems.
Take care now.
Thanks for that clarification! I monitored a graduate psych course long ago and one of the observations on an MMPI was whether an addictive personality was in play. We all gave them to each other 🙂 I’m sure they have updated their terminology and seems I need to as well. Thanks for keeping me literate.