1. < Chronic Pain

Having Difficulty Getting Diagnosis

Posted by austin132 @austin132, Sep 10, 2021

Hello everyone, I am a 22 year old male that has been dealing with various different types of chronic pain throughout my body. I have seen my primary care physician 6 times and all times he has said that nothing looks to be wrong with me. He has run all the standard blood tests and all have come back perfectly normal.

The pain started 3 days after receiving vaccination but to this day I am still unsure if it is because of that. Only reason I bring it up in this thread is because I was a perfectly healthy athlete before hand. My heart is palpitating constantly, my head feels foggy and constantly hurts, my body feels fatigued even after getting 7-8 hours of sleep at night, and my upper and lower left parts of my abdomen constantly are in pain. My anxiety is spiking but I can’t take medicine for it due to bad reactions to SSRI’s. I have also had trouble holding in urine for long periods of time. If I drink any liquids, about 15-20 minutes later I have to use the restroom. The pain gets worse and worse each day but nothing has come up as the culprit. I don’t really know where to go from here as I was denied from being seen at the Rochester Mayo Clinic. I just need an answer as to how I can manage the fatigue and pain I am feeling. I slowly feel as if I am slipping away and I won’t know what is wrong with me until it’s to late. Anyone know of a direction I can take to get this sorted out?

Thank you!!

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jenatsky | @jenatsky | Sep 23, 2021

I read your post over again and I suggest you check out the Covid Neuropathy Section too. I believe you’ll find great similarity in symptoms here. My wife also suggested acupuncture which has shown benefit too.

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kenc | @kenc | Sep 24, 2021

Could be that you have new strain of the virus. You may want to report your symptoms, which may be from the vaccine to the FDA.

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Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 24, 2021

Hey @austin132. How are you doing? Have you made any progress with your symptoms?

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bsrice | @bsrice | Oct 25, 2021

@austin132, I read through your post and saw similarities. After my second Moderna shot April 9, 2021, I had the normal 3 day not feeling well, on the 4th day I started with body pain, cyclical vomiting, migraine headache, light sensitivity, kept hydrated, had diarrhea. After 2 weeks of that I went to see my Primary. A neurologist, rheumatologist, $4k in bloodwork, 3 MRIs, 3 CTs and an ER visit, still no one can tell me what's going on. I have a migraine headache 24/7, it is like a vice on my head like where a headband would sit. There was a point were I was ready to give up, my husband help me off that cliff. My neurologist sent my files to UF Shands, UAB and Mayo Jacksonville, all have extensive waiting lists. I feel they are not looking at the side affects or publishing anything because they want everyone vaccinated. And I get that, but they need to follow those with adverse reactions as well. One big note where we are similar, I was perfectly fine April 8th, I walked 3 miles a day, did yoga every morning and water aerobics. Now I can beardly walk from my bed to the bathroom. I started doing some exercised in PT and yoga at night to relax. Keep your spirits up, I know it is hard, but try to enjoy the little things.

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jackieo67 | @jackieo67 | Oct 29, 2021
In reply to @austin132 "Thank you for the response. I am going to see a GI specialist this week to..." + (show)
@austin132

Thank you for the response. I am going to see a GI specialist this week to see if I can get any sort of help with my abdominal issues. I have not had any MRI's or CT scans as my GP doesn't want me to be exposed to radiation unless need be. The blood work checked my TSH levels, thyroid levels, blood counts, hepatitis check, as well as autoimmune activation and a c-reactive protein to check for inflammation. Other tests I have had include a chest x-ray to look for PE, or lung abnormalities, an ultrasound on my gallbladder to look for gallstones or other issues with it, as well as an upper endoscopy with biopsies of my esophagus, stomach and duodenum to look for any upper digestive problems. I also had a urinalyses to see if my kidneys could concentrate urine properly. Lastly I have had an EKG and Echocardiogram on my heart to see if I had sustained heart damage due to my problems. All tests have come back negative for anything other than slight inflammation of my stomach (pretty sure that's nothing new though). I've spent thousands of dollars on all of these tests to get no answers. I also have an appointment with urology in the beginning of October but that can't come soon enough. I am also scheduled to see a cardiologist but that is not until the first week of November. This whole situation has made me a wreck and is spiking my anxiety due to not having any sort of end in sight. I appreciate you taking the time to look at my post.

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Wow! I am suffering the exact same as you! I've even had urologist rule out any bladder or kidney issues....I have lost 80 lbs,veins throb,severe groin pain,faint,low heart rate,on n on. Had fecal impact twice requiring ambulatory. Every specialist passes me on to another...with differing of diagnosis w 2nd consults..I need a new direction to try..if anyone can offer

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 30, 2021
In reply to @jackieo67 "Wow! I am suffering the exact same as you! I've even had urologist rule out any..." + (show)
@jackieo67

Wow! I am suffering the exact same as you! I've even had urologist rule out any bladder or kidney issues....I have lost 80 lbs,veins throb,severe groin pain,faint,low heart rate,on n on. Had fecal impact twice requiring ambulatory. Every specialist passes me on to another...with differing of diagnosis w 2nd consults..I need a new direction to try..if anyone can offer

Jump to this post

Hello @jackieo67, Welcome to Connect. I know it must be frustrating to have seen many specialists and not have a diagnosis or treatment plan that helps. You mentioned in your first post that you also were told you have a redundant colon after a second colonoscopy and also mentioned severe groin pain, veins throb and more symptoms. I'm sure you have shared all of your symptoms with the different specialists and each has passed you on to other specialists.

I'm not sure where you have been seen by specialists, but if it's an option, are you able to seek help at a major teaching hospital or health facility like Mayo Clinic that offers multidisciplinary teamwork in healthcare? --- Mayo Clinic: multidisciplinary teamwork, physician-led governance, and patient-centered culture drive world-class health care: https://collections.nlm.nih.gov/catalog/nlm:nlmuid-101537958-pdf

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1 reply
jackieo67 | @jackieo67 | Oct 30, 2021
In reply to @johnbishop "Hello @jackieo67, Welcome to Connect. I know it must be frustrating to have seen many specialists..." + (show)
@johnbishop

Hello @jackieo67, Welcome to Connect. I know it must be frustrating to have seen many specialists and not have a diagnosis or treatment plan that helps. You mentioned in your first post that you also were told you have a redundant colon after a second colonoscopy and also mentioned severe groin pain, veins throb and more symptoms. I'm sure you have shared all of your symptoms with the different specialists and each has passed you on to other specialists.

I'm not sure where you have been seen by specialists, but if it's an option, are you able to seek help at a major teaching hospital or health facility like Mayo Clinic that offers multidisciplinary teamwork in healthcare? --- Mayo Clinic: multidisciplinary teamwork, physician-led governance, and patient-centered culture drive world-class health care: https://collections.nlm.nih.gov/catalog/nlm:nlmuid-101537958-pdf

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Hi, I appreciate ur reply... I've no idea about what u mentioned.. I'm going btwn 2 different hospitals...one is suggesting pelvic congestive,the other seems to wave it off.ive also digestive issues now...after being told Barrett's w metaplasia.i was told to take ppi...tried all,made me very sick.now I was told by general surgeon to consult vascular again...

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 30, 2021
In reply to @jackieo67 "Hi, I appreciate ur reply... I've no idea about what u mentioned.. I'm going btwn 2..." + (show)
@jackieo67

Hi, I appreciate ur reply... I've no idea about what u mentioned.. I'm going btwn 2 different hospitals...one is suggesting pelvic congestive,the other seems to wave it off.ive also digestive issues now...after being told Barrett's w metaplasia.i was told to take ppi...tried all,made me very sick.now I was told by general surgeon to consult vascular again...

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Have the doctors at the two hospitals working together to help you? If not, that is an example of not using the multidisciplinary teamwork approach. I have no medical training or background but I have been lucky enough to have doctors that coordinate well between the different health areas and different specialists to diagnose and treat my different conditions.

Do you think your general surgeon or their assistant might help you consult with a vascular specialist to bring them up to speed and hopefully a better outcome from the appointment?

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1 reply
jackieo67 | @jackieo67 | Oct 30, 2021
In reply to @johnbishop "Have the doctors at the two hospitals working together to help you? If not, that is..." + (show)
@johnbishop

Have the doctors at the two hospitals working together to help you? If not, that is an example of not using the multidisciplinary teamwork approach. I have no medical training or background but I have been lucky enough to have doctors that coordinate well between the different health areas and different specialists to diagnose and treat my different conditions.

Do you think your general surgeon or their assistant might help you consult with a vascular specialist to bring them up to speed and hopefully a better outcome from the appointment?

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Hmm...I will try that suggestion.only thing,it seems as if these specialists are either too many cases,or maybe non caring of government insurance...I barely get callbacks even! I've been going thru this since may 2020...every physician notes"patient appears very ill" I don't understand why I can't get an answer

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Oct 30, 2021
In reply to @jackieo67 "Hmm...I will try that suggestion.only thing,it seems as if these specialists are either too many cases,or..." + (show)
@jackieo67

Hmm...I will try that suggestion.only thing,it seems as if these specialists are either too many cases,or maybe non caring of government insurance...I barely get callbacks even! I've been going thru this since may 2020...every physician notes"patient appears very ill" I don't understand why I can't get an answer

Jump to this post

There is a website - The Patient Revolution: https://patientrevolution.org/ that has some really good information that you might find helpful when you have upcoming appointments. Here are some topics on the site that I think are really good:

-- Tools For the Visit: https://patientrevolution.org/visit-tools
-- Communication Barriers: https://patientrevolution.org/barriers
-- Let's Talk About $: https://patientrevolution.org/cost

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