at my wits end

[StayHappy447]

following on from seeing a rheumatologist yesterday, I am struggling to now know what to do for the best as I am in a lot of daily pain and I seem to be getting more frequent flares. The only things that have been found test wise is I have a positive AMA antibody along with small fibre and autonomic, neuropathy/disorder dysautonomia I also have been diagnosed with having dry eyes by the shimmler test. I suffer with pain, stiffness and bouts of terrible fatigue. I have sun sensitivity that causes a malar rash and also have livedo rectularis rash down both thighs.

as I don’t have antibodies for sjogrens nor was the salivary gland biopsy positive yet I match all other symptoms for sjogrens : uctd I feel stuck. Any suggestions what to do as I am at my wits end with this and feel I am getting nowhere

[OldTed60]

What did your rheumatologist think was causing your symptoms given no specific antibody or positive lip biopsy? Would they be willing to treat you regardless given symptoms and your positive ANA? Sometimes a trial of Hydroxichloraquine is offered and a diagnosis of UCTD is given but even then many rheumatologists can be quite dismissive. Hang in there and see your GP about pain relief for small fibre neuropathy/SFN. Sometimes our pain can be heightened by small fibre neuropathy I’ve found, meaning that our symptoms don’t always match our signs. Menthol creams can be very soothing I have found and also some find magnesium sprays and creams helpful. After many years of seronegative Sjogren’s (my lip biopsy was very positive though) I have become used to the pain and rarely feel it as pain I can’t handle now. I wouldn’t say it’s less severe because I’ve lost sensation in some parts but I would say that my pain receptors are no longer on heightened alert so I have learnt how to live with the pain. Breathing exercises have really helped in my case as I can’t tolerate any of the pain meds used for SFN or NSAIDs.

[StayHappy447 in reply to OldTed60]

Hello and thank you for your reply. Yes I have been on hydroxychloroquine since 2018 and I found it to be a game changer in terms of being really helpful. The specialist who I am under the care of which includes a rheumatologist, a neurologist and a hepatologist as well as a autonomic nervous system disorder clinic in London all agree with the exception of the Rheumatology so I’ve seen very recently that this is likely a Sjogrens syndrome conditions/and differentiated connective tissue disease problem. Like yourself I have found the sensory and autonomic nervous system problems to be perhaps the most troubling day-to-day do my best to manage them.

[FlowerWoman]

hello, I’m sorry to hear your situation, it’s all too familiar for Sjögrens patients I’m afraid. One site I’ve found really useful is Sjögrensadvocate.com. The creator has worked really hard to collect together information and references that can help to make a case for the disease. It’s a slippery customer this disease. Good luck

[StayHappy447 in reply to FlowerWoman]

Thank you for your kind words. I will have. Look at the site you suggested now x

[LateSjo]

I was diagnosed with UCTD in 2017. My symptoms were hair loss and rashes. My ANA was 1:1280. I was immediately prescribed hydroxychloroquine and it sounds like you should be too. After taking HCQ the rashes eventually stopped and the hair on my head grew back. I had no symptoms after that for seversl years until dry mouth ramped up earlier this year. A lip biopsy confirmed Sjogrens after I suggedted it to my rheumatologist. It's possible I had Sjögren's all along and it just needed to show it's hand. Autoimmune diseases produce different symptoms and manifestations between all of us. Doctors don't have uniform diagnostic criteria. Be your own advocate!

[StayHappy447 in reply to LateSjo]

Hello I’m on hydroxychloroquine and have found it enormously helpful.