Not Diagnosed but having Sjogrens like Symptoms

[Northernelf]

Hi....I'm five years into joint pain and fatigue. It all started with some hand pain progressed to wide spread joint pain, add in a few pneumonias and here I am.

Usually winter is my bad time cold, more weather fluctuations, I don't know, it's just worse. This has been the worse summer yet. To add to the joint pain I have swollen salivary glands under my chin, along my jaw, and either sinuses or more glands. I just finished a two week broad spectrum antibiotic and saw my GP yesterday now I am on another one (doxcycline), and acid blocker for 10 days & a prednisone taper. I have also been on amitriptyline for awhile for sleep (huh !) and nerve issues.

The glandular pain is nothing new - I have had it off and on, just assumed I was fighting sickness and my plasma injections weren't keeping up. This time however, the pain and mild swelling has stayed around for almost a month. My GP says my lymph nodes are also a bit swollen.

Anyway, my GP thinks I have some resistant infection, hence the antibiotics. He thinks the joint pain and tendonitis in my thumbs will respond to prednisone. He gave me a 50 mg dose Thursday to kick it off, 40 today for a week, and taper on down. I have muscle pain too. One rheumie told me I had fibromyalgia, one said MS (proved otherwise afterwards), and one nothing. Oh, and my GP said I would already start feeling better right away I feel still pretty sore & bad this morning. Just had my coffee and the glands under my chin/side of jaw are on fire.

I go to see my hematologist in a couple of weeks annual visit (low IgG doc). I intend to ask him about testing Autoimmune disease in people like us who have other folks blood components in us. Any other things I oughta ask ?

I wanted a lip biopsy from my GP to test for Sjogrens but he dissed it and said my lip was fine. I was sorta overwhelmed at this point. The salivary gland testing is not about lip swelling or whatever! I do have dry eyes to some degree, lips, mouth/throat (drink a lot of water) and Sjorgrens does have a link to low IgG (hypogammaglobulinemia). I also have Reynauds.

I am beyond frustrated trying to live my life in pain, worried I might be damaging myself because I'm not getting diagnosed properly (I live in a northern city of 12000 we don't always get the best docs up here it's a 6 hour drive to my hematologist, to the nearest specialists, so I am concerned I am falling through the cracks).

Any input is greatly appreciated !

[Joe S.]

Welcome to our forum. Dry eyes, nose, mouth skin,  and @$$. are the typical symptoms we face. There are other complications that can arise (lymph, lung, heart. liver, balance, neuropathy) . Often the lip biopsy will not show any issues and it is painful for most. On average it takes 7 years to get a diagnosis. You can live a long life with this disease...It is not a death sentence. I try to find things I can enjoy.

I suggest that your read "Spoon Theory" on the web. It will explain good days and bad days. We all experience Flares from time to time. Prednisone tapers are usually used to get us through these periods.

Before you take any supplement or medication I suggest that you check the web for counter indications, side effects, or drug interactions. You can look at our signatures to see what some of us are taking. Amitriptyline is also an antidepressant.

Good luck on your Journey.