Undiagnosed Autoimmune Disease - No one will listen to me

I have had several symptoms that are all consistent with an Autoimmune Disease, but no doctor will ever give me a diagnosis or do further testing to determine one. I have been to emergency care, undergone several tests for indicators, and seen several specialists, but for some reason they are all clueless despite their proficiency in medicine.

I have bad joint pain, sudden bouts of severe itchiness, occasional numbing in my left arm (which isn't common but not unheard of), severe fatigue, swelling in my joints (specifically in my fingers), and the swelling of my lymph nodes. I know this is immune related because taking an antihistamine like Benadryl normally clears it up for a short time. My symptoms started almost immediately after I got COVID for the first time a couple months ago. The most likely causes are Lyme Disease, Rheumatoid Arthritis, Lupus, Sarcoidosis, or another autoimmune disease. (I say Lyme Disease because I was bit by a tick a few weeks later but my symptoms were pre-existing that.)

I feel like this is important, but no one is taking me seriously. I go in, get tests done, my results are fine, and they send me home saying not to worry about it. I am told I don't have any of the usual markers or indicators, and that I'm young and healthy, but how can I not worry when my knees buckle with random joint pain, or I'm trying not to sleep the day away because I'm so tired and can't get out of bed?

I don't know what to do right now honestly. If anyone with similar or the same symptoms could give input on their own diagnoses that would be great. I could really use some advice or ideas on how to get a diagnosis so I can be treated. I have a bad feeling this will only become worse as I start doing more activity.

Thank you for taking the time to read this.

Sounds nearly identical to my issues. It started for me when I hit 40. I had been having low back pain for years or early 2003 and had numerous lumbar epidurals. I switched to a standing desk by 2005. I had always been a gym rat/runner. I wake up early. I'm overly ambitious and eager to get to the office. By 42 I had trigger points in my lft hip. I visited a "World Renowned" clinic in 2011 near my home and they gave me some trigger point injections and I was fine for a few weeks before coming back for the same injections. They told me I should try PT and that would get me back on track. Within 3 weeks I was dragging my left leg. I was in so much pain I couldn't sit, walk, eat, sleep or stand without crutches. Doctor set up MRI for low back and reveled a crushed disc on the right side of my spine but all the pain was in my left hip. They essentially told me there was nothing they could do. I literally went across the street to another ORTHO and they scheduled me for the left hip MRI and was finally diagnosed with sacroiliitis of the left SI-Joint. At least I had some type of diagnosis or so I thought but it would only get worse from that point. My rheumatologist also said I had A.S. After multiple trips to the hospital for nerve blocks, ortho doctors and rheumatologist I was still unable to walk and was ready to just cut that left leg off! Ihad gone from a ripped 190lbs to 160 lbs in just a few months. My sed/CPK levels would always be off the chart and so high it was unbelievable. I did find a spine specialist and after what felt like "stakes" being driven into my hip I could walk but I would still need a higher dose of narcotics that I was trying to avoid buy honestly nothing else that any doctor could do. I was so allergic to biologics that I broke out with psoriasis from head to toe and lost every hair on my entire body. Kidney stones are constantly reoccurring and I found out that was hereditary on my mothers side of the family. All my aunts male children would also have kidney stones. I wish I had something optimistic to say but it doesn't get any better. Each day is "what's going to be painful today? Will it be the lowback, knees, heels elbows or even worse my sternum and right cage pain or possibly costochondritis. It's a purely clinical diagnosis. No imaging or test can across diagnose that disease. Lord forbid I sneeze as it feels my ribcage is going to explode at times. The brain fog and memory loss is terrible. I've researched for years and feel like I'm VP of webMD. I was diagnosed with EPI recently so I've got that going for me as well. I've gone through various diets and eliminated nearly everything that is processed. I had researched peptide therapy and I get a little relief from hydration infusions with Glutathione and toradol. I can no longer take NSAIDS by mouth because they kill my left kidney. A retired doctor that I work with told me I had E.O.R- early onset rigamortus. Funny but true and as time passes I realize this is not a sustainable way of trying to live. Yes the pain medication helps but even with that I might be a 6 or 7 on the 1-10,scale with 10 being eaten by a shark. I know I have to live with pain at this point. I go to my PCP doctor that I've seen for 2 decades so he's really my only saving grace at this point. Too all those suffering in pain I suggest you drink lots of water with a little fresh lemon. Avoid sugar, gluten, lactose and try to eat raw and fresh whenever possible. I eat oatmeal and fresh eggs every single day for breakfast. It's not a cure but it does help. I'll be praying that everyone here can find some answers 🙏

Sounds nearly identical to my issues. It started for me when I hit 40. I had been having low back pain for years or early 2003 and had numerous lumbar epidurals. I switched to a standing desk by 2005. I had always been a gym rat/runner. I wake up early. I'm overly ambitious and eager to get to the office. By 42 I had trigger points in my lft hip. I visited a "World Renowned" clinic in 2011 near my home and they gave me some trigger point injections and I was fine for a few weeks before coming back for the same injections. They told me I should try PT and that would get me back on track. Within 3 weeks I was dragging my left leg. I was in so much pain I couldn't sit, walk, eat, sleep or stand without crutches. Doctor set up MRI for low back and reveled a crushed disc on the right side of my spine but all the pain was in my left hip. They essentially told me there was nothing they could do. I literally went across the street to another ORTHO and they scheduled me for the left hip MRI and was finally diagnosed with sacroiliitis of the left SI-Joint. At least I had some type of diagnosis or so I thought but it would only get worse from that point. My rheumatologist also said I had A.S. After multiple trips to the hospital for nerve blocks, ortho doctors and rheumatologist I was still unable to walk and was ready to just cut that left leg off! Ihad gone from a ripped 190lbs to 160 lbs in just a few months. My sed/CPK levels would always be off the chart and so high it was unbelievable. I did find a spine specialist and after what felt like "stakes" being driven into my hip I could walk but I would still need a higher dose of narcotics that I was trying to avoid buy honestly nothing else that any doctor could do. I was so allergic to biologics that I broke out with psoriasis from head to toe and lost every hair on my entire body. Kidney stones are constantly reoccurring and I found out that was hereditary on my mothers side of the family. All my aunts male children would also have kidney stones. I wish I had something optimistic to say but it doesn't get any better. Each day is "what's going to be painful today? Will it be the lowback, knees, heels elbows or even worse my sternum and right cage pain or possibly costochondritis. It's a purely clinical diagnosis. No imaging or test can across diagnose that disease. Lord forbid I sneeze as it feels my ribcage is going to explode at times. The brain fog and memory loss is terrible. I've researched for years and feel like I'm VP of webMD. I was diagnosed with EPI recently so I've got that going for me as well. I've gone through various diets and eliminated nearly everything that is processed. I had researched peptide therapy and I get a little relief from hydration infusions with Glutathione and toradol. I can no longer take NSAIDS by mouth because they kill my left kidney. A retired doctor that I work with told me I had E.O.R- early onset rigamortus. Funny but true and as time passes I realize this is not a sustainable way of trying to live. Yes the pain medication helps but even with that I might be a 6 or 7 on the 1-10,scale with 10 being eaten by a shark. I know I have to live with pain at this point. I go to my PCP doctor that I've seen for 2 decades so he's really my only saving grace at this point. Too all those suffering in pain I suggest you drink lots of water with a little fresh lemon. Avoid sugar, gluten, lactose and try to eat raw and fresh whenever possible. I eat oatmeal and fresh eggs every single day for breakfast. It's not a cure but it does help. I'll be praying that everyone here can find some answers 🙏

Sounds nearly identical to my issues. It started for me when I hit 40. I had been having low back pain for years or early 2003 and had numerous lumbar epidurals. I switched to a standing desk by 2005. I had always been a gym rat/runner. I wake up early. I'm overly ambitious and eager to get to the office. By 42 I had trigger points in my lft hip. I visited a "World Renowned" clinic in 2011 near my home and they gave me some trigger point injections and I was fine for a few weeks before coming back for the same injections. They told me I should try PT and that would get me back on track. Within 3 weeks I was dragging my left leg. I was in so much pain I couldn't sit, walk, eat, sleep or stand without crutches. Doctor set up MRI for low back and reveled a crushed disc on the right side of my spine but all the pain was in my left hip. They essentially told me there was nothing they could do. I literally went across the street to another ORTHO and they scheduled me for the left hip MRI and was finally diagnosed with sacroiliitis of the left SI-Joint. At least I had some type of diagnosis or so I thought but it would only get worse from that point. My rheumatologist also said I had A.S. After multiple trips to the hospital for nerve blocks, ortho doctors and rheumatologist I was still unable to walk and was ready to just cut that left leg off! Ihad gone from a ripped 190lbs to 160 lbs in just a few months. My sed/CPK levels would always be off the chart and so high it was unbelievable. I did find a spine specialist and after what felt like "stakes" being driven into my hip I could walk but I would still need a higher dose of narcotics that I was trying to avoid buy honestly nothing else that any doctor could do. I was so allergic to biologics that I broke out with psoriasis from head to toe and lost every hair on my entire body. Kidney stones are constantly reoccurring and I found out that was hereditary on my mothers side of the family. All my aunts male children would also have kidney stones. I wish I had something optimistic to say but it doesn't get any better. Each day is "what's going to be painful today? Will it be the lowback, knees, heels elbows or even worse my sternum and right cage pain or possibly costochondritis. It's a purely clinical diagnosis. No imaging or test can across diagnose that disease. Lord forbid I sneeze as it feels my ribcage is going to explode at times. The brain fog and memory loss is terrible. I've researched for years and feel like I'm VP of webMD. I was diagnosed with EPI recently so I've got that going for me as well. I've gone through various diets and eliminated nearly everything that is processed. I had researched peptide therapy and I get a little relief from hydration infusions with Glutathione and toradol. I can no longer take NSAIDS by mouth because they kill my left kidney. A retired doctor that I work with told me I had E.O.R- early onset rigamortus. Funny but true and as time passes I realize this is not a sustainable way of trying to live. Yes the pain medication helps but even with that I might be a 6 or 7 on the 1-10,scale with 10 being eaten by a shark. I know I have to live with pain at this point. I go to my PCP doctor that I've seen for 2 decades so he's really my only saving grace at this point. Too all those suffering in pain I suggest you drink lots of water with a little fresh lemon. Avoid sugar, gluten, lactose and try to eat raw and fresh whenever possible. I eat oatmeal and fresh eggs every single day for breakfast. It's not a cure but it does help. I'll be praying that everyone here can find some answers 🙏

Have they looked into it being EBV?
A lot of your symptoms match mine.

Have they looked into it being EBV?
A lot of your symptoms match mine.

My heart goes out to you and hardly know what to say. I did see something in your "list" that did ring a bell of sorts. You report being over-ambitious. This can really trip you up doing PT. You over do it so fast and it stays with you. (Been there, done that.) I hope that you find answers, too. In the meantime, my thoughts are with you.