Thanks a ton for everyone’s help, input, and interest. I rec’d a message asking for an update and I realized I’ve been remiss in not posting the latest–sorry! Here’s the latest…as I stated in my last post, I had discontinued the Fluorinef and had to resume it, and I felt much better after restarting it for the 2nd time…Since then I’ve become stronger and felt well enough to attempt to stop the Fluorinef again. I’m ELATED to say it’s been 4 weeks and I’m Fluorinef free and so far so good!! I think the magic piece of the puzzle has been my morning “cocktail” I’ve discovered–1 tsp. of salt diluted in a glass of water. Not especially pleasant but it seems to be very effective. This is followed up with 2 additional salt tablets during the day (1 mg. each). I just saw my family Dr. last week and she said my blood pressure is strikingly low for all that salt consumption (110/80). This indicated to her that without the extra salt my bp would likely be too low thus reinforcing the idea of neurocardiogenic syncope in her opinion…She further added that if I have 2 bad days in a row then I really need to get back on the Fluorinef, assuring me with a high degree of certainty that there is nothing more sinister going on since I’ve been tested for everything at this point…
Other things I’ve learned include that I do indeed have mild sleep apnea following an overnight sleep study (even though I don’t fit the “typical” profile for a sleep apnea patient) due to chronic obstruction, which is presumed to be allergy-related. The Dr. was going to recommend that I see an ENT but after she learned of our intended move to a more allergy-friendly environment, she felt this alone would remedy the sleep apnea problem.
As for Sjogren’s, I did see a rheumatologist who did blood testing for Sjogren’s and, although I know the test isn’t 100% accurate, there was no indication of Sjogren’s, lupus, or rheumatoid arthritis. That’s good news; however, the BIG question lingers, why in the heck did my body fall apart from March through July and how do I prevent this from happening again??
My family Dr. also offered her 2 cents on this subject. She described eloquently (which I cannot do justice) that people with allergies sometimes contract a virus and the combination of the 2 in the body can cause all sorts of unpredictable reactions in the body. She described at least 2 other examples of patients she cares for who developed orthostatic hypotension/neurocardiogenic syncope following contraction of a virus, which both resulted in low blood pressure and the need to take meds. to increase bp & beef up the blood volume. She told me that the salt is essentially doing what the Fluorinef would be, hence the need to resume the med. if I find the salt is no longer doing the job. She is unable to determine whether this will be a life-long condition or not, but did believe the possibility exists that I will “outgrow” it (even though I’m 40 🙂 Regardless, she did feel more or less that I should be out of the woods with the acute phase of the condition, and I should be relatively stable now that I have a steady regimen that seems to be working (salt, vitamins, etc.)
I have days in which I feel tired but NOTHING like the debilitating fatigue of months past. What I feel now is normal fatigue after a long day, not the inability to hold my head up or keep my eyes open like before. I haven’t had ANY dizziness or severe weakness. I haven’t had the opportunity to get back to the specialist to have the follow-up testing completed for Addison’s and, quite frankly, I’m not sure that it’s even necessary at this point…However, it’s still in the mix of possible diagnoses and something that has neither been completely ruled in or ruled out. I am still pondering on whether to take off work and have the testing done.
I have been faithfully doing the exercises for fibromyalgia I learned at Mayo, and I have to say I’m pleasantly surprised that they really do seem to help with the general aches & pains. So I can either interpret this as my having fibro. on top of the other stuff hence the exercises are helping or the exercises are beneficial for many conditions, not just fibro., and they’re simply benefiting me regardless of the underlying problem(s). Either way, I’m happy with the results and intend to continue them–it’s primarily stretching each major muscle group, and I can tell a difference when I wake up in the morning if I skipped doing them the night before.
One last random thing, I recently had plugs put back into my eyes (I had another set about 10 years ago) in order to stop the moisture from draining off my eyes and it has helped immensely. I’ve been on Restasis for years but it hasn’t completely taken care of my dry eyes. I have to say that the plugs in conjunction with the Restasis has helped a ton. The eye Dr. could tell a measurable and observable improvement on both eyes a month after putting the plugs in the tear ducts.
Thanks again to everyone for the comments and input, and I hope this update will help others who may be suffering from similar issues. I don’t feel like the mystery of my condition will ever be solved, but if I can consistently be back to my normal life, that’s enough for me–that’s like a dream come true compared to the ordeal of the last few months. 🙂