Undiagnosed Autoimmune Disease - No one will listen to me

@anniebrook - My experience is probably totally different from yours, but I gave birth to my second child in April 1983. Turns out I damaged my right shoulder pushing the baby out! It’s still a problem.
About the same time I was diagnosed with 2 disintegrated cervical discs that causes right arm weakness.
I hope your upcoming MRI will give you some answers that will lead to pain relief.
My daughter lives in Sweden with a similar health system as Canada. She has spent years trying to get help for chronic pain and exhaustion- so far nothing.

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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.

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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.

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Hi,
Has anyone mentioned psoriatic arthritis as a possible diagnosis for you? Your symptoms are similar to mine. At age 68 when a bug bite turned into psoriasis, I recognized it since my dad had it and my brother and son have it. My son also has PsA, affecting his feet, back and sternum. It’s not too uncommon for PsA to be present without the appearance of psoriasis, and looking back, I think I had it before the skin issues appeared.
PsA is unpredictable; it comes and goes, affecting tendons, ligaments and joints in a random manner. And fatigue can be a major issue, too.
Initially, and out of the blue, I had experienced ankle pain which moved down into the sole of my foot and I couldn’t walk on it. Would you believe, a nurse practitioner diagnosed “circulation problems” by looking at my normally thick ankles. No ex-rays taken, just prescribed lasix, and told to wear sturdy shoes. My other son who’s an RN advised me not to take the lasix since I had no pitting edema or other signs of fluid retention. After a couple of weeks the pain was gone, which is typical of PsA flares. When I later experienced different foot pain (after developing the pso)and saw a podiatrist, he diagnosed Morton’s neuroma and PsA, and shortly thereafter I developed dactylitis (sausage toes—one on each foot), another symptom of PsA.
But it was after 3 bouts of debilitating hip pain that I went to my son’s rheumatologist who also diagnosed PsA and ankylosing spondylitis, which affects my SI joints. A lot of my pain has come from enthesitis which is inflammation of the tendons and ligaments. Swelling of the joints, not so much. I’m on a biologic which has given me clear skin and saved me from flares. I still deal with morning stiffness, fatigue and lack of stamina. My son does well on methotrexate.
Unlike OA which is helped by rest, PsA gets better with activity. I’ve found this to be true; after sitting or reclining for any length of time, standing and taking the first steps are difficult, but if I keep moving it gets better. The only problem is I tire so easily. Walking any distance feels like I’m wading through water with lead weights around my hips; it’s exhausting. How I miss the days when I could walk for miles effortlessly!
Wishing you success in soon finding answers!

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Did u get tested for Lyme disease? Or gout?

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Hi,
Has anyone mentioned psoriatic arthritis as a possible diagnosis for you? Your symptoms are similar to mine. At age 68 when a bug bite turned into psoriasis, I recognized it since my dad had it and my brother and son have it. My son also has PsA, affecting his feet, back and sternum. It’s not too uncommon for PsA to be present without the appearance of psoriasis, and looking back, I think I had it before the skin issues appeared.
PsA is unpredictable; it comes and goes, affecting tendons, ligaments and joints in a random manner. And fatigue can be a major issue, too.
Initially, and out of the blue, I had experienced ankle pain which moved down into the sole of my foot and I couldn’t walk on it. Would you believe, a nurse practitioner diagnosed “circulation problems” by looking at my normally thick ankles. No ex-rays taken, just prescribed lasix, and told to wear sturdy shoes. My other son who’s an RN advised me not to take the lasix since I had no pitting edema or other signs of fluid retention. After a couple of weeks the pain was gone, which is typical of PsA flares. When I later experienced different foot pain (after developing the pso)and saw a podiatrist, he diagnosed Morton’s neuroma and PsA, and shortly thereafter I developed dactylitis (sausage toes—one on each foot), another symptom of PsA.
But it was after 3 bouts of debilitating hip pain that I went to my son’s rheumatologist who also diagnosed PsA and ankylosing spondylitis, which affects my SI joints. A lot of my pain has come from enthesitis which is inflammation of the tendons and ligaments. Swelling of the joints, not so much. I’m on a biologic which has given me clear skin and saved me from flares. I still deal with morning stiffness, fatigue and lack of stamina. My son does well on methotrexate.
Unlike OA which is helped by rest, PsA gets better with activity. I’ve found this to be true; after sitting or reclining for any length of time, standing and taking the first steps are difficult, but if I keep moving it gets better. The only problem is I tire so easily. Walking any distance feels like I’m wading through water with lead weights around my hips; it’s exhausting. How I miss the days when I could walk for miles effortlessly!
Wishing you success in soon finding answers!

Jump to this post

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.

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If left untreated- Lyme can turn into immobility for some.....and painful arthritis.Also did you get tested for Lupus.Both Lyme or Lupus comes with a rash usually!

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Hello! I have never commented in the past 2 yrs since I’ve found this site, so I apologize for the lengthy comment - but have used the Mayo Clinic Connect as an amazing “Real-People in My Shoes” resource as I went on my own journey the past couple years (NON-COVID or VAC related; so many people’s symptoms became noticeable with those 2 scenarios). My lab tech where I’ve had my numerous blood tests drawn has become another valuable resource in my journey, she told me about a website - https://www.ultalabtests.com/ - when I was running into closed doors everywhere as well. I have since created a wonderful medical team of Rheumatologist & ARNP at the practice, PCP, Dermatologist, Optometrist, Psychologist/Therapist (YES - one of the most valuable team members since more than my body has been affected & my mental health has taken one of the biggest tolls!) and today after a much anticipated 5-month wait, I’m seeing the Neurologist for the remaining symptoms that no one can determine the cause!

The website I included above does not go through your insurance or a need to be seen physician to order tests! It gives a fair price as well as often there are sales (99% of the time, a test is going to be on sale, so wait for it and sign-up on the site as it’s free to become a member). I had always wondered my blood type & started with that one, they give you an order to bring to lab for draw & all results go directly to you! They have every single blood test imaginable from what I can tell and their support agents are very helpful in answering questions. For example, I may soon no longer have insurance, therefore, I will be using this site to order my tests that my physicians order since it will be much cheaper than going through the lab directly w/ my doctor’s blood order.

My best advice to you is DO NOT STOP RESEARCHING - be knowledgeable about your symptoms, organized with your thoughts or questions and make good use of that 12 min you’re going to get when you’re alone w/ the doctor. You have to be your own advocate (so many people say that) but if I was not persistent through this process, I wouldn’t have a diagnosis at all, I wouldn’t have medications prescribed to help minimize the symptoms at least a little bit and I wouldn’t have found a team that I felt was as dedicated to restore my quality of life to the best of their ability as I was.

Don’t be afraid to look elsewhere for a new PCP - this was the key to my journey. I fired my previous one since they did not see the sense of urgency I did since I was declining so rapidly with no answers. My new PCP was able to send referrals to the multiple specialists needed to keep digging until we find all the answers for everything. My first visit with him, I was distraught, frustrated, exhausted, in pain, confused, angry, sad - everything you can imagine and essentially wept explaining what I was going through day after day. When I apologized for breaking down, he simply grabbed the tissues and said “You don’t have to apologize. You cry as many tears as you’d like. I can’t imagine what you’re going through but I’m not stopping until we get it figured out.” I knew I had found THE one!!! When you have a doctor that says “Stop googling! I am your google. Send me a message and ask me anything on your mind” - and you actually believe them - then you’re on the right path!!!

My dx: MCTD (Mixed Connective Tissue Disease), Hashimoto’s, Dysthymia (Persistent Depressive Disorder) & Fibromyalgia

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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.

Jump to this post