Not officially diagnosed, desperate & new here
Posted , 8 users are following.
Hello. Thank in advance for this support group.
I know without doubt that I have 1 autoimmune issue, Hashimotos. I was diagnosed with Fibromyalgia, but anyone here who has it knows, you can have an autoimmune disease with Fibromyalgia, or be diagnosed with Fibromyalgia when they can’t figure out what the heck is going on, or you just have Fibromyalgia. I have been tested quite a few times over the years for all sorts of auto immune, always negative, except hashimoto. I was diagnosed with Psoriasis , not by biopsy, but visual inspection & symptoms of my elbow rashes.
Most recently I had a flare up with my eyes, dry eye syndrome. It was so bad I could not read at all & had to leave work. The eye doc said I had dry patches all over corneas. He asked if I was tested for Sjogrens, t which I said yes but it was neg to which he said, well regardless, what you have auto immune related dry eye. He said I can tell your skin is also dry, your lips. He asked if anything else was dry. I said, yes, my nasal passages so much so, they lightly bleed, and sometimes my throat/mouth has no saliva when I am sleeping. During the day, my mouth isn’t that dry, and over the past few years, I have been battling painful severe vagina dryness. I had a biopsy if my vagina tissue and all it showed was inflammation.
Right now I am so dry, eyes and vaginal area, that I am miserable. Blinking my eyes and walking hurts.
Systemically I take fish oil. For eyes using steroid eye drop, re-wetting drops, trying to get Xiidra. They put temp punctalplugs in. For the Vaginal area, I use Vagifem (estrogen tab) 1 x week. I also tried Vytone cream, but it didn’t do much. For my sinuses –I use nasal spray-which feels nice, temporarily. For my mouth, I tried biotene, but it did nothing.
The other issue I have been having is sinus drip and the feeling of getting a cold. I do have acid reflux which I know can cause these issues, but wonder since it is so dry in my sinus & throat, it creates the perfect environment to pick up viruses.
I really don’t care about “official diagnosis” anymore. I know something isn’t right in my body-this is not normal dryness. Is there anything else out there? I would rather natural trmt, but would be interested to know of on and off label prescription treatments.
0 likes, 4 replies
Megheart michellemtsh
Posted
Just lost my message to you. Will start again!
So sorry to hear that you are suffering so much. Whilst getting appropriate treatment for your individual symptoms is paramount, to have a confirmed diagnosis, provides the objectivity which doctors crave.
Sjögren's Syndrome is renowned for hiding its true identity sometimes for years, from a testing point of view. That is the frustration of it! The 2016 ACR/EULAR guidelines for diagnosis, require objective results such as positive anti Ro or positive salivary gland biopsy which may not happen for some time even if the eyes show grossly positive Schirmers test and there are other extraorganic symptoms.
I've found a big difference since 2015 when finally my ANA's and anti Ro's finally showed up. It was patently obvious that SS was what I had for the preceeding seven years but without these 'proof' markers appearing I was dismissed as having Fibromyalgia - no further treatment available!!
It's so frustrating! So all I can exhort you to do is get the best treatment possible for your dry eyes, for your dry vaginal symptoms and anything else and simply wait it out. At least by doing this life will become more tolerable.
A word of caution. Do treat those dry eyes with huge respect. Very frequent eye gels during the day (not just once or twice a day - half hourly if necessary) and a well lubricating eye ointment at night. I've recently learnt a hard lesson on this score.
Gotta go now but hope things improve for you very soon.
michellemtsh Megheart
Posted
margaret22116 michellemtsh
Posted
So much sympathy for your suffering. My sister has just been diagnosed with Sicca Syndrome which I understand to be Sjogren's. The specialist she saw is looking for the antibodies in her bloodwork. She has similar symptoms. I have Behcet's a similar disorder and have the dryness in the nasal passages.
I have found some releif in hydroxychloroquine. It was prescribed for pain in my feet but it is an anti inflammatory and it has eased the infkammation in my nose and sinuses. It is often prescribed for Sjogren's and could be wirth trying if it could be prescribed.
It is very frustrating that sometimes Sjogren's ...like other auto immune disorders ...does not show up in bloodwork.
michellemtsh margaret22116
Posted