My immune issues started in my early twenties with pollen allergies which grew to be severe by my mid 30s. I had no other indications of immune problems until menopause.
When menopause hit I immediately developed Burning Mouth Syndrome, still widely unrecognized but seems pretty clearly related to Sjogrens disease to me. I have noted that many people on the Low Dose Naltrexone Sjogrens FB site have both Burning Mouth and Sjogrens…
I suffered for 7 years with Burning Mouth before getting some help from a Chinese herb called Zhi Bai Qi Huang Wan and Alpha Lipoic Acid. Before these medicines, I would wake up feeling “ok” but by 10 am my tongue would begin to tingle and burn like I had eaten pizza that was too hot, and over the course of the day it would spread to include my lips and a larger section of my tongue. Some evenings I could not speak properly because my tongue was so swollen. Chinese medicine doctors call this a “hot” tongue and believe it is associated with menopause, but they too can’t be sure of the correlation. This condition kept me from being able to socialize at all for most days and so I became isolated, my marriage suffered, and I became depressed. Finding the ALA solution was the first help, and later the Chinese herbal remedy got it under control. I suffer from it mildly now, no where near as badly as before.
Four years ago my OB-GYN remarked that I was too young (55) to have the amount of dryness in my vagina that she saw and she thought I should be investigated for Sjogrens. My primary physician was not convinced and I did not go to see a rheumatologist because the bloodwork they did on me showed negative SSa and SSb and no ANA.
About 8 months later my stepson committed suicide and, of course, we went through a nightmare of a year getting past the worst of that. This may have been the trauma that pushed my Sjogrens into higher gear…That is when my mouth and eyes both became very dry and I went to the rheumy for testing. Still negative. They put me on pilocarpine for my mouth (which helps) and restasis for my eyes (which helps) but the estrogen my OB wanted me to use for the dry vagina made my Burning Mouth horribly bad and so we had to stop that. I remained seronegative for the next two years. Only now, a month ago, did my rheumatologist send my bloodwork to a more precise lab and they turned up a slightly elevated ANA and speckled pattern cells. Still no SSa or SSb antibodies.
Right after I was put on Pilocarpine and Restasis I read about Low Dose Naltrexone and my primary agreed to put me on it. I believe it has helped me lots with the muscle pain, lack of sleep, and slowing the progression of the disease ( I hope) but has not helped the three big symptoms… eyes, mouth and vaginal dryness. I pay for this out-of-pocket as insurance, and many in the medical community, do not think it is a valid treatment ( in spite of many research papers to the contrary).
I am only 59 and very worried that I cannot fully participate as my husband retires this year at 70 and we finally can do what we have saved for all our lives. I can no longer travel by plane for any distance due to pain and tiredness. I take at least 2 days to acclimate to a new place due to disruption of routine which seems to really send my symptoms into overdrive. I am generally very healthy except for this problem, and have been all my life. I cook my own food, eat well and exercise. I am not suffering from any of the big lifestyle diseases.
I have 5 more years until Medicare, which may not exist at that point, and the costs associated with AI are numerous. Autoimmunity seems to be a completely separate issue from lifestyle diseases and needs some really good minds trying to figure it out. The AI community would be so happy to see some advancement in the research for cures.