Sjogren's Syndrome?

I too have experienced the whole body pain phenomenon!
Unfortunately, pain meds was the treatment. Along with all modalities that gave relief. Ice, heat, massage, water therapy, hot or cold old, topicals, etc.. Whatever gives relief at the time. My inflammatory markers are always all over the board. I have all the symptoms of Srogrens, but test Seronegative. I had JRA as a child, but my RA factor is negative. The consistent positive is HLA-B27. Even with that, my symptoms are consistent with numerous autoimmune diseases. Most recently I had a severe flare that required the ER and more pain medication that I could ever imagine. My neurosurgeon felt something autoimmune was attacking my cord and said I need to find a good neurologist. I have seen several and they are all good but, they can’t figure it out. The other problem is they all know each other and then the new ones will not see me because I have been seen by others in the same system. My PCP will personally call and explain my situation and the neurologist still will not see me.
That really limits my options.

I do not think you need to have both antibodies, just the A. I am not sure what the B signifies but I know it is less important for diagnosis of Sjogrens.

Were you tested for RA? There is a specific lab for that.

I thought CRP was inflammation due to infection? ESR is the inflammation marker to keep an eye on for Sjogrens.

@danarosef
I had another thought based on my past experience. This is JUST a theory!

Theory: You have Sjogrens. This taxes all systems! Then when you get any sort of infection (even a cold) your body, which is already in overdrive, goes a bit bonkers causing the pain for a week.

This has happened to me as well. If it passes it might be a flare but caused by an external bacteria or virus. It just feels different and worse than it used to.

@gypsyblue

Did you have these blood tests done: Axonal Neuropathy Profile, Autoimmune Neurology/Comprehensive Paraneoplastic Profile, CIDP? These tests are ordered by neurology.

@danarosef

I also have many symptoms of Sjogrens (dry mouth, fatigue, joint and muscle aches). However, I tested negative in the past. They found me positive for scleroderma. I think multiple conditions may occur in the same person.

If you do not mind sharing, how did your Sjogrens start? For how long did you have it? What kind of treatments worked for you?

Thank you

I am not sure when it started but I was diagnosed a little over a year ago.

I do have dry eyes and just started Tryptr eye drops for that. In addition I use a heated eye mask 3-4 times a week and regular OTC eyedrops a few times a day as needed.

My mouth dryness is not bad but I am dehydrated easily so I drink about 80-100 oz of infused waters every day.

I am taking magnesium glycinate for better sleep and nerve health, which helps with the fatigue.

I take Advil when my joint pain is bad but that is often weather dependent.

Hope that helps.

My nerologist swears by Low Dose Naltrexone for all over pain. I have Sjogren's neuropathy and have little pain. I also take IvIg every 3 weeks. Read up on LDN. I take 2mg daily and have for 8 years.

Hello. You are definitely inflamed, with high CRP and ESR, so something's going on. You say you are positive for SSA, but did they show both components? It consists of Ro60 and Ro52. Ro60 is more suggestive of Sjogren's or Lupus than Ro52, but it is not definitive alone. Clinical signs, or symptoms figure in to diagnosis. Some people have only one Ro marker, some have both. Some people have positive SSB as well but sometimes it takes time for it to show up. You may be able to get the answer about which Ro marker you are positive for as I believe this testing is done more often now but some labs just show the generic "positive for SSA" as a result. If you have Ro52 alone, it points to other possible autoimmune conditions.

@altabiznet, I honestly don’t remember those specific labs. Can you tell me what they look for specifically?
I just had another large immunity panel completed. All negative except the HLA-B27. My rheumatologist and PCP order autoimmune panels frequently. It’s always hit or miss other than the consistent positive HLA-B27. Last week I found out that I have the MTHFR mutation. I’m not sure where that fits in the mix.
I can ask for the labs you mentioned. My PCP will help any way he can.

@gypsyblue

Neuropathy is common with Sjogren's. The tests I am referring to are ordered by neurologist to diagnose autoimmune peripheral neuropathy (muscle aches, tingling, pins and needles), nerve demyelinating conditions (shooting pain), or dysautonomia, which is a cluster of neurological symptoms: dizziness, arrhythmias, feeling off-balance, light and sound sensitivity, difficulty walking and talking. CIDP stands for Chronic Inflammatory Demyelinating Polyneuropathy which can be confirmed by blood test. If you have neuropathy and pain, you need to see a neurologist. He will order neurological autoimmune tests to properly diagnose which condition you may have. You can request these panels: Axonal Neuropathy Profile, Autoimmune Neurology/Comprehensive Paraneoplastic Profile, CIDP test.
https://my.clevelandclinic.org/health/diseases/cidp-chronic-inflammatory-demyelinating-polyneuropathy
CIDP stands for Chronic Inflammatory Demyelinating Polyneuropathy, a rare autoimmune disorder affecting peripheral nerves.
Definition and Overview: CIDP is a long-term neurological condition in which the body’s immune system mistakenly attacks the myelin sheath, the protective covering of peripheral nerves, leading to impaired nerve signal transmission and progressive muscle weakness. It is considered the chronic counterpart of Guillain–Barré syndrome (GBS), but unlike GBS, CIDP develops gradually over at least eight weeks and can persist or relapse over months or years.
clevelandclinic.org
Symptoms: Common symptoms include symmetric muscle weakness, numbness, tingling (paresthesia), fatigue, and impaired coordination. Weakness often affects both legs and arms, making activities like walking, climbing stairs, or gripping objects difficult. Some patients may experience muscle atrophy or clumsiness, and sensory deficits such as loss of proprioception or abnormal sensations.

Causes and Risk Factors: CIDP is an autoimmune disorder, meaning the immune system attacks the body’s own tissues.