Dominique, a woman many of us know through the blogging world has started a great site with the goal of getting stories of M.E. sufferers out there - in order to both give sufferers a voice, and create awareness.
Each month the site features someone's story. This month my story is featured. http://invisibleawareness.org/2011/04/12/march-2011-mecfs-story-gail/
If you haven't found this site yet, check out the other two well written and moving stories from February and March.
Despite being very ill at present, Dominique is still finding ways to advocate for those with M.E., an invisible yet disabling chronic illness. It's inspiring. Thanks Dominique!
You can find her blog, 4 walls and a view here: http://www.4wallsandaview.com/
Great story, upnorth. Glad I could read it and not only be encouraged but learn more about you...
ReplyDeleteThanks Renee :)
ReplyDeleteAre you going to be featured one month?
Hey.
ReplyDeleteToday I went to the doctor because I was having profound chest pain yesterday and woke up with it even worse today. So profound that I couldn't get any deep breaths without searing pain. I suspected it was costochondritis as opposed to a heart attack, but I went just to be sure. Had I not been familiar with the myriad of issues that pop up with fibromyalgia I probably would have went to the ER last night worried that I was having a heart attack, but costo often happens within FM. Anyway, my point- Has anyone ever suggested that perhaps your ongoing chest pain might in fact be related to FM in any way? Or perhaps the chronic form of costochondritis, Tietze's syndrome? I just thought I'd throw that out there because the burning, searing, stabbing and aching pain reminded me of your chest issues.
I'm relieved that it wasn't a heart issue.
jenji
Thanks for thinking of me jenji.
ReplyDeleteI have not been diagnosed with Fibro, because basically, outside of sore throat and lymph nodes, I don't have pain. Still, I do have that very deep chestache pressure that's worse the deeper the breath - very flulike. when I read a description of chostochorditis, it sounded more like a sharp acute type pain, however, maybe I should do a bit more research.
I'm so glad your issue wasn't a heart issue....but still, so sorry about the pain with breathing. Is there anything they could recommend for it? I see my specialist tomorrow and it's on my list, but not at the top and often there's not time to address more than one or two things.
Apparently costo will just work itself out and heal on its own. Could take weeks, could take months. It's already quite a bit better today. I just have to be careful moving and doing anything physical so as to avoid irritating the area. It's so hard to operate in this body because I have an athlete's brain. I'm a physical person. I truly mourn my inability to participate in the sports that I once excelled in. And being an independent spirit, it's never my first inclination to ask for help, so I'll often realize later that I should have maybe asked for help with something so simple, yet physical.
ReplyDeleteAnyway, the doctor gave me some sort of topical Advil, however I have pain pills stronger than that for my other condition so I can take those if I'm miserable enough, I just wanted to be sure that it wasn't a heart issue. Besides, I usually don't take pain pills unless I'm absolutely out of my mind in pain because they exacerbate my exhaustion the day after I use them. Plus, I like operating with a clear mind. I must admit though, the pudendal neuralgia has had me in tears many, many times and I'd rather deal with exhaustion than that pain any day.
I'm happy to hear that you don't have pain! That's fantastic! So, you must really have some sort of wild, infectious agent attacking your system. I'm sure we all do in various ways. And you were tested for Lyme, yes? I'm sorry if I asked this before, but I can't remember if I'd asked before, if so apologies.
Also, I had a pretty bad case of pleurisy about 10 years ago, which left me with chest pressure, pain, low grade fever and difficulty breathing as well. You can get pleurisy from a viral agent. Maybe you should ask about that as well?
Good luck with your visit to the doctor.
best,
jenji
Hi Jenji,
ReplyDeleteGlad the costo. is a bit better. SOunds like you get a lot of pain....so sorry. I think I'm uncommon that way.
You say it's hard to live in your body with an athelete's brain. I know EXACTLY what you mean there. It's just the training to ignore and push through pain. Also, when you main pleasures once came from physical activities, I think it is an extra burden to bare.