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Help- I’m alone confused and in pain

Hello, I am a 38-year-old male living with daily excruciating joint pain. I have not been properly diagnosed and I’m turning to this community to see their opinion.

I have joint pain that mostly occurs bilaterally in my body. My hands my feet my knees and my entire spinal column are always in pain. The pain often comes in flareups and at the beginning my hands used to get very swollen and sore at night time.

As things progressed I’ve noticed that almost all of my joints have started clicking or making popping noises the worst of which is my spinal column. I had a slipped disc recently that the MRI radiologist believes is a result of facet deterioration.

I have constant headaches due to the pain originating in my cervical spine area. I have a difficult time walking now because of foot pain.

With all of this I have been bombarded with many bloodwork tests but everything comes back negative. I have no indications of inflammatory markers nor do I have any of the blood markers for autoimmune disease.

Does anyone have any insight? Is there any other disease besides autoimmune I could have?

I’ve been tested for gout, lyme too.

  1. I know it can be frustrating, the long road to finding the right diagnosis. It took me over 2 years to finally settle on a the RA diagnosis and they weren't even 100% sure at the time but they just wanted to start treating it somehow. All I can say is that I totally understand, we all do, and you are not alone. If one doctor isn't able to help you then try to find another and see what they say. If you are in pain and hurting then it's only natural you want to find someone to help give you some relief. There are so many autoimmune diseases - fibromyalgia, Ehlers-Danlos, Reynauds - the list goes on a on. Don't give up, I know it's hard but we will do whatever we can from here and you can always come to vent, share, or just be with people who know what it's like to be in pain. Keep us updated. Keep on keepin' on, DPM

    1. I wish you were not in so much pain, . Have you seen a rheumatologist or have you not gotten a referral yet? Many primary care doctors and even some rheumatologists are unaware that people can have autoimmune arthritis with normal blood tests results. Here is an article about seronegative RA that might interest you: https://rheumatoidarthritis.net/seronegative-diagnosis. Here is an article from our sister site, Psoriatic-Arthritis.com, about diagnostic blood tests and what they mean: https://psoriatic-arthritis.com/clinical/bloodwork-for-psa-results. If your doctor refuses to refer you to a rheumatologist, you might want to find a new primary care physician. If your rheumatologist has no answer, I would get a second opinion and maybe even a third and a fourth. Unfortunately, many people with autoimmune arthritis go for years without a diagnosis because doctors overlook the signs. Self-advocacy is critical. I hope this helps and that you get answers and relief. Wishing you the best. - Lori (Team Member)

      1. , I feel your pain and frustration, long with being confused. I am a seronegative RA & PsA patient as Lori Foster mentioned in her reply. It took time for a proper diagnosis by one did finally come along. To understand all that you are going through and the doctors are not finding anything, is mind boggling to say the least, hang tough, you can do this. Follow the advice already given about seeking out medical care. In the mean time, talk to your doctor about over the counter medicines for pain and inflammation you might be able to use. If you have not already, try heat and or ice on those aching areas. Check out your diet, goggle for foods that help with inflammation and those that can cause inflammation, try to adjust the diet a little if you can, eat healthy. Keep a journal on what is happening and when. Was there something you did that might have caused the new pain or such.. What treatments have you tried or doc has prescribed that has worked or did not work, from Icing the aches and pains to what meds the doc might have prescribed. Documenting will help not only those trying to help you, but could help you in helping yourself. I was diagnosed when I was 32 yrs old, now 59 yrs old and still keeping that journal for the same reasons. You can do this! We are all here if you need some advise or support. Good Luck

        1. What great tips you've shared here! We love seeing community members support each other and share. That you so much for contributing to the conversation and sharing. -- Warmly, Christine (Team Member)

      2. Thanks for the kind words. I am trying my hardest... I keep getting new referrals. I also obtained prednisone to try to help with symptoms.


        My spine has begun hurting every morning. It cracks and pops all day then in the morning it is swollen. And I’m not talking about a part of my spine I’m talking about the entire thing from neck to butt.


        I’m scared I’m going to end up in a wheel chair In a few months.


        I have a two and six year old kid and they are the only thing keeping me going through the misery of pain from the moment i wake up 🙁


        I am waiting to see a rheumatologist in 2 months. I had to talk to about 5 doctors to get that referral cause I have 0 blood markers.

        1. great point! I'm linking an article here with more information about seronegative RA https://rheumatoidarthritis.net/seronegative-diagnosis. It certainly doesn't hurt for Santacruz05 to mention it to the doctor. -- Warmly, Christine (Team Member)

        2. Hi . Let me echo in saying it is great that you have an appointment with a rheumatologist. You may want to contact the office to ask if they have a cancelation list to possibly get in earlier. In this case, you would be called to see if you were available on short notice if they have an unexpected opening. I know others in the community have had luck with these lists. Wishing you the best and please feel free, if you like, to keep us posted on how you are doing. Richard (RheumatoidArthritis.net Team)

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