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At a loss, multiple consultations still no answer...any idea?
Autoimmune Diseases | Last Active: Nov 28, 2023 | Replies (338)Comment receiving replies
Hello i am having pain all over my body and my primary care doctor said they couldn’t do nothing more for me because they can’t fine what is the cause of my pains and they wanted me to see a specialist that’s when I see the first Rheumatolgist and she told me I have Sjögren’s and she just base her diagnoses off the fact that I am having dry mouth and dry eyes. I was giving all these meds that did not help with the pains, I ask her to do these test that will give me a sure answer to say I have Sjögren’s but she refuse to do it so I seek a second opinion and that’s when the next doctor did blood test and it show in his blood work that I don’t have Sjögren’s or lupus but he said I have a lot of inflammation in my body and it could range from a cold to cancer and 300 other things in between and I have been having these pains for about 5 year with no help in site, that’s when My cousin told me to join this group because I can fine people on here that is going through the same thing as me or similar thing.
Replies to "Hello i am having pain all over my body and my primary care doctor said they..."
Sjogrens can be present without a definite positive diagnosis after labs. Sjogrens can present in a multitude of symptoms not just dryness. There are many Facebook forum groups you may join if you want to become more familiar. It’s crazy but most often a formal diagnosis of Sjögren’s takes years to be verified. You could also Google it to see if your symptoms are mentioned. I would also consider a chiropractor or acupuncturist along with or instead of P/T.
You can have Sjogren’s and may not be positive on the blood work. As @helennicola noted there are various tests for Sjogren’s and many systemic symptoms. My Sjogren’s first manifested extraglandular…tremors, peripheral neuropathy in all extremities, and moderate to severe muscle and joint pain.
Hopefully blood labs can rule out what you don’t have. Keep pursuing answers, more labs, tests, and request referrals to different doctors if you’re not satisfied . I’m still searching for a competent rheumatologist who will provide treatment. I do have a good neurologist.
If you’re interested, here’s two excellent websites I’ve found helpful:
https://www.smartpatients.com/
https://www.sjogrensadvocate.com/
Best wishes on finding answers and solutions!
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100% true, you came to right place. I'm sorry to hear you experience pain through your body. I do too, and it wasn't until I Dr. hopped, had extensive testing, took multiple drugs, and drove myself a little crazy that I realized what I was living with were chronic conditions. This in turn messed with my psychological state and brought depression, anxiety, etc... which entices symptoms and round and round we go. All of this became overwhelming until I learned how to manage, accept and plan my course of action. Putting yourself in control instead of Drs is empowering.
How are you currently managing inflammation? Are you eating a healthy diet to help reduce inflammation? How are you managing your mental state? Are you giving yourself grace?