I was very pleased because I had finally found out I was not going crazy and there really was something that caused all these weird symptoms:
- eyes that felt gritty
- a burning tongue
- hoarseness
- constant sore throat
- loss of taste and hearing
- many dental cavities
- painful intercourse
- itchy skin
- constipation
- light-sensitive eyes
- fatigue
- joint pain and stiffness
- muscle pain and nerve pain
- increased sensitivity to cold.
I was pleased because I'd had these symptoms for many years with no relief. As far as strange sounding diseases I knew that many diseases had strange names and I was soon to learn that this one was named after a Swedish doctor named Henrik Sjögren.
Thank you for your site. I'm experiencing many of these symptoms. I had colon cancer 5 years and believed these problems were residual issues. Now, I'm sure this is what is going on with me. I appreciate your candid discussions. kathryn
ReplyDeleteI was 49 when my health tsunami hit.
ReplyDeleteI had had Mono before and asked for a titer test to see if it was active again. A brilliant ARNP realized I had Cat Scratch Fever ("Uncommon for our area" said both my Veterinarian & Dr). I was eating candy from halloween at work; I was not able to take multi vitamins (my Great Aunt and I are both allergic to vitamin C; I remember my stress for the good (Mother of the Groom that month) & stress for the bad (my dog got a hernieated disc from the groomers 2 weeks before the wedding-*a dog Chiropractor got him walking in one visit-no operation); I was burning both ends of the candle staying up with my Australian Son then getting up to prep breakfast (I live in Pacific Standard Time zone), I had just quit smoking (again); and was working fulltime at a face paced job that had stress from scheduling management over the wedding plans.
Thus evolved the perfect storm that I have since read about in a Sjogrens book...Stress, Bacterial infection, lack of necessary minerals/vitamins, lack of sleep.
Then frantic fatigue hit me daily about a month later.
Pet scan showed Swollen Lymph nodes throughout my body. 2 non cancerous lymph node biopsies later...
I was SOOO disappointed when I found out that it was autoimmune (with reactive hypoglycemia and not cancer ( which would be something I could try to fight and win thus getting my life back)! :( My Dr and Mom were surprised at my disappointment. A friend who I took with me "got" what I was going through and said words that were balm to my devestated spirit.
2 moths after that, my Amazing Rheumy added SLE Lupus.
If it wasnt for this daily "slow fainting dropping fatigue" I would be back to work and not applying for disability.
I miss not just working, which I enjoyed. I miss pursueing my passions; Volunteering, Hiking, Traveling to see my Sons; going to Australia for my Son's wedding to be; visiting with friends that is endless and doesnt require a couch....
A core enjoyment I still do have. It's trying to make someone else's day by acknowledging THEM, over the phone, fb, face to face (Dr offices, Pharmacy, Grocery store, Friends).
The Spoon Theory Poem saved most of my Friendships of those that "get it".
Karma is coming back to me in positive ways, Thankfully! & may it continue ♡
Karen