reply to post by zazz82
I'm absolutely blown away by your post...thank you so much. You're new here, right? Welcome to ATS, and thank you so so much for confirming all the
links that have been forming in my own head lately. I've been posting here occasionally, and the Alternative EQ Prediction thread quite a lot, and
even in the fibromyalgia thread, but what you've written has made sense of *everything*, and I would hug you if I could.
My first worry is that you sound really unhappy however, and I wish I could help shift your mood. You've been incredibly tenacious in your effort to
work all this out, and congratulations on finding a doc who really really gets what's going on. I have very similar problems, although not as bad as
yours or as long standing, and I know how hard it can be to get the conventional medical world to take us seriously. Please take some comfort that
you've helped at least one person already today (me!) and I'm sure many other people will appreciate you sharing your experience.
Kind of on my own, I had come to a very similar conclusion to you and your holistic doctor. I'm not medically trained, but come from a family of
medical people (no help what-so-ever...take a pill and go to bed is their mantra) so I understand that it's an uphill trek to get what we're feeling
taken seriously. I've had all the tests for everything, had my cardiac function checked, everything they could possibly test me for was done, and all
they could suggest at the end of it was counselling (for the anxiety), and anti-depressants for the pain, even though I've never been depressed. I
said yes to the counselling, which has been helpful with the panic attacks I will admit, and no to the drugs, and my doc's parting comment the last
time I saw her was "Well if you think it's fibromyalgia, then that's what it is." Excellent.
What you've said about your epilepsy affecting how sensitive your nervous system is makes perfect sense to me. I'm not epileptic, thank god, but I
believe that fibromyalgia, and syndromes like it can be triggered by physical or emotional trauma, especially if the latter is sustained. I feel that
this might have had the same effect on me as your epilepsy has had on you. I had meningitis at age 12 and still have flashback like moments of severe
headaches, nausea, dizziness and light sensitivity sometimes. I've learned to control it with diet pretty much though, and can feel it coming a long
way off. I also have a neck injury I sustained in a car crash about 5 years ago, and I think that's when my problems really started. There has also
been a long period of sustained emotional trauma...I won't bore you with the details and it sounds unbelievable anyway..lol! ....so yeah...possibly
this has all resulted in a very overworked and extremely sensitive nervous system, and perhaps some of us are just born wired a little differently,
which need not be a bad thing.
It's very interesting that you are so extremely sensitive to sun activity. Do you feel earth changes too? I've been trying to work out what triggers
my pain and other issues more precisely, and have had some success with earthquakes, but the recent sun flares have matched my pain levels so exactly,
I can't help but wonder. It doesn't seem to be a terrestrial trigger...it's not even that cold here at all just now, a lovely sunny day in fact,
but I can barely move without being sore.
I wish I could be more help to you. I do wonder too about how the rest of my life will be and if I will ever get rid of the pain, and if my ever
patient other half will one day get fed up with it all and leave me to it. I try not to let it stop me doing anything, but some days I feel like I
weigh 600lbs (I don't!
), and every tiny movement hurts. Perhaps there is some issue with diet, or a herbal remedy that might help, and we just
haven't accessed it yet. Maybe even something like acupuncture, I don't know. It could be something very simple. I also have a minor problem with
PSOC, and have found that drinking spearmint tea twice a day makes an enormous difference. Not drugs or surgery...just tea. It could be that simple.
I've also found that finding a creative outlet is extremely helpful in managing my state of mind. Use that hypersensitivity to create something
beautiful...paint, write, draw, sing, build furniture, ...anything that helps you express it. Meanwhile, just thank you again, and if you need to
talk, we're here. Blessings on you and your doctor.