1. < Autoimmune Diseases

looking for diagnosis, or anything to look into/test

Posted by winston137 @winston137, 3 days ago

Have had reoccurring chest pain along with joint pain and general malaise. Pain worsens with exercise but does not go away with rest. Swelling in hands and feet with exercise and lightheadedness/ vision going in and out. Constant lymph node pain but not enlarged.
Blood work and imaging have all been normal. Antibiotics have been attempted twice, first time all symptoms gradually went away for three months then slowly returned. A lighter dose was then taken again and symptoms got better but didn't go away in entirety and returned completely after a month. General pain meds and steroids have no effect on pain/ other symptoms. looking for absolutely any ideas, doctors tend to dismiss based on being a young women and tests being unremarkable. This has lasted for over a year and looking for any ideas.
Thank you to anyone with any ideas!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

windyshores | @windyshores | 3 days ago

Sounds like Lyme could be a possibility since antibiotics affect symptoms and the symptoms match. The Elisa Lyme test has some false negatives so you need a Western Blot. Then you need to research the "Lyme specific" bands and then see a doctor who is "Lyme literate." See lymenet.org for referrals.

There are other possibilities of course but good to check this and either treat or eliminate it as a factor.

REPLY
gently | @gently | 3 days ago

winston137, welcome to Connect. We want more clues. Do you know why antibiotics were prescribed. Twice. Which antibiotics. At first glance, I'd want a cardiac stress test, because you have chest pain with exercise.
How young, how long after and during expercise do you have the pain, light headedness. Describe the vision--complete loss, blurry. Are you feeling pain in lymph nodes when you put pressure on them can you be sure that it is the nodes.
Antibiotics working and then not could mean the wrong antibiotic. Do you have reason to think you have an infection. Did you have relief from chest pain with exercise during the three month remission.
Do you have any guesses yourself?

REPLY
winston137 | @winston137 | 3 days ago

Azithromycin was prescribed based on an original diagnosis of rheumatic fever, an infectious disease doctor disagreed with this because i didn’t fit with the criteria and the original rheumatologist accepted this. My guess of antibiotic working first time but only a partially second time was the second time it was lower dosage for shorter time period. Low grade fever and lymph node pain was reason for thought of infection I believe. Chest pain resided during 3 months(lymph node pain was the same) had a stress test and it was clear. Pain increases gradually with exercise and normally goes back to typical baseline level after about an hour. Lightheadedness /vision is normally about 30 mins into an easy workout or only a couple seconds into a race (track) after warming up. It is partially blurry and the outsides go dark/supper blurry, I’d compare it to similar as when having a bad migraine. Lightheadedness starts around 30 mins into exercise and goes away about 30 mins after. The lymph node pain is when pressed on. While I sometimes feel an aching pain in a similar spot but not sure it’s exactly the lymph nodes. I say the pain is from the lymph nodes because doctor felt them and told me that’s what they were, have had a few become enlarged then go back to normal size. Hopefully that answers your questions.
Some other things that might related but could not be… have had small lumps at the sides of throat (tonsils were removed when I was little), after a hard race/ exerting myself completely all of legs feel as though they are cramping, pain in my ribs hurt to the touch(not sure I mentioned that originally), have had some blood work come back with low blood sugar so they had me monitor it for a while, lows were around 50/60 mostly during afternoon but because they were normal when fasted so wasn’t cause for concern
My only idea(mostly only a worry) one of my parents had similar symptoms and he was diagnosed with non Hodgkins lymphoma of the bone that didn’t show up on bloodwork but did on a ct (mine was clear )

REPLY
2 replies
winston137 | @winston137 | 3 days ago
In reply to @winston137 "Azithromycin was prescribed based on an original diagnosis of rheumatic fever, an infectious disease doctor disagreed..." + (show)
@winston137

Azithromycin was prescribed based on an original diagnosis of rheumatic fever, an infectious disease doctor disagreed with this because i didn’t fit with the criteria and the original rheumatologist accepted this. My guess of antibiotic working first time but only a partially second time was the second time it was lower dosage for shorter time period. Low grade fever and lymph node pain was reason for thought of infection I believe. Chest pain resided during 3 months(lymph node pain was the same) had a stress test and it was clear. Pain increases gradually with exercise and normally goes back to typical baseline level after about an hour. Lightheadedness /vision is normally about 30 mins into an easy workout or only a couple seconds into a race (track) after warming up. It is partially blurry and the outsides go dark/supper blurry, I’d compare it to similar as when having a bad migraine. Lightheadedness starts around 30 mins into exercise and goes away about 30 mins after. The lymph node pain is when pressed on. While I sometimes feel an aching pain in a similar spot but not sure it’s exactly the lymph nodes. I say the pain is from the lymph nodes because doctor felt them and told me that’s what they were, have had a few become enlarged then go back to normal size. Hopefully that answers your questions.
Some other things that might related but could not be… have had small lumps at the sides of throat (tonsils were removed when I was little), after a hard race/ exerting myself completely all of legs feel as though they are cramping, pain in my ribs hurt to the touch(not sure I mentioned that originally), have had some blood work come back with low blood sugar so they had me monitor it for a while, lows were around 50/60 mostly during afternoon but because they were normal when fasted so wasn’t cause for concern
My only idea(mostly only a worry) one of my parents had similar symptoms and he was diagnosed with non Hodgkins lymphoma of the bone that didn’t show up on bloodwork but did on a ct (mine was clear )

Jump to this post

sorry that was so long

REPLY
moosinee | @moosinee | 2 days ago
In reply to @winston137 "Azithromycin was prescribed based on an original diagnosis of rheumatic fever, an infectious disease doctor disagreed..." + (show)
@winston137

Azithromycin was prescribed based on an original diagnosis of rheumatic fever, an infectious disease doctor disagreed with this because i didn’t fit with the criteria and the original rheumatologist accepted this. My guess of antibiotic working first time but only a partially second time was the second time it was lower dosage for shorter time period. Low grade fever and lymph node pain was reason for thought of infection I believe. Chest pain resided during 3 months(lymph node pain was the same) had a stress test and it was clear. Pain increases gradually with exercise and normally goes back to typical baseline level after about an hour. Lightheadedness /vision is normally about 30 mins into an easy workout or only a couple seconds into a race (track) after warming up. It is partially blurry and the outsides go dark/supper blurry, I’d compare it to similar as when having a bad migraine. Lightheadedness starts around 30 mins into exercise and goes away about 30 mins after. The lymph node pain is when pressed on. While I sometimes feel an aching pain in a similar spot but not sure it’s exactly the lymph nodes. I say the pain is from the lymph nodes because doctor felt them and told me that’s what they were, have had a few become enlarged then go back to normal size. Hopefully that answers your questions.
Some other things that might related but could not be… have had small lumps at the sides of throat (tonsils were removed when I was little), after a hard race/ exerting myself completely all of legs feel as though they are cramping, pain in my ribs hurt to the touch(not sure I mentioned that originally), have had some blood work come back with low blood sugar so they had me monitor it for a while, lows were around 50/60 mostly during afternoon but because they were normal when fasted so wasn’t cause for concern
My only idea(mostly only a worry) one of my parents had similar symptoms and he was diagnosed with non Hodgkins lymphoma of the bone that didn’t show up on bloodwork but did on a ct (mine was clear )

Jump to this post

Allot of the symptoms sound like sarcoidosis. It took me years to get the diagnosis, after a lung and lymph node biopsy. Good luck.

REPLY
Denise | @denisestlouie | 2 days ago

You may need to find a functional or holistic doctor. They will be able to help you reduce and manage inflammation. I had that for over 15 years without any symptoms other than inflammation. it turned out to be asymptomatic Crohns disease that end with a bowel obstruction requiring surgery. its complex and no test to confirm the disease.

REPLY
Please sign in or register to post a reply.