My real name is Ebonne and I'm also a member of the Chiari group on Ben's Friends. I noticed that there was a fibromyalgia group and have been meaning to sign up to this group for some time. Better late than never, right?
I began experiencing a number of symptoms starting around fall of 2012 after a series of bad events over that summer that left me frazzled, frayed, frustrated and stressed out to the max. After going from doctor to doctor to doctor I was thankfully diagnosed summer of 2013, I'm very thankful that it didn't take me years upon years but sadden that I still encountered so many doctors that thought I was a headcase.
I was diagnosed with chiari malformation, syringomyelia and fibromyalgia. My current fibro routine is this: exercising 3-5 days a week, 50mg a day of Savella, no corn, no gluten, eating mostly anti-inflammatory diet, acupuncture every other week, and lots of prayer/meditation. For stress relief I like to doodle, read, chat with friends, yell at inanimate objects when they don't work (me to microwave: "Didn't I tell you NOT to mess this up!") and having a Netflix night, which also includes yelling (sometimes). Depending on the series/character.
Thanks to all for the warm welcome when I first joined the group, looking forward to interacting with you all.
*gentle e-hugs and virtual high-fives*
Ebonne welcome. You have a great outlook. And I commend you for the 3-5 days of exercise a week. I'm slowly but surely learning to live with Fibro I was diagnosed in February. So in February I acknowledged my Fibro, March I'm working on eating healthier and in April I will add exercise. I also like to yell at inanimate objects that don't work they way I expect. Good stress reliever because when I yell at my kids they don't like it. haha
What a lovely name! I haven't yelled at the microwave yet, but it's worth a shot! I have gone outside and let out a few bloodcurdling screams of frustration and pain! All the farm animals are scared of me! My Rheumatologist assured me that they are surely used to me by now! Not only is he brilliant, he shares my sardonic humor, which makes him a keeper!
You are going to fit in here just fine! We can always use another with humor!
Welcome! Good to have you!
hi . i am not reading too much right now but did want to say hi to you and send you some HUGGGS
Hi Ebonne and welcome! I'm sorry that you've got so many illnesses, that has to stink! I really don't know anything about your other two illnesses, would you be willing to tell a sentence or two about them?
Ha ha, I had to laugh at your dialogues! I do that kind of stuff too, like pretending that the sugar jar's lid is a mouth and it's yammering away at me. I'm glad to finally meet someone else who likes to find their fun in weird little corners.
I am in awe of you, not only do you exercise but you also have a schedule! And not only that but you're disciplined enough to amend your diet. Wow! I am so totally the opposite here. I'd like to join a gym, though and work out on the treadmill.
It's amazing that you were diagnosed so quickly and good for you! You must have a very smart doctor who bothered to listen. It's amazing how many doctors will not listen.
Do you mind sharing how your fibro got started? Most of us got it from working too hard or having some sort of accident.
I'd like to add more but I'm pooped. It's 7 AM and I haven't been to sleep yet!
Take care and please keep coming back!
It took me a while to get back to this point. When I was first diagnosed, I couldn't exercise at the same level I did before I became symptomatic but in my mind I kept saying "mind over body, mind over body" and my body basically retaliated with a "NO" that even grumpy cat would have to applaud. So I had to go all the way back to square one with the basics like walking, stretching and build my way up. Even now, a few months later, I still have to accept that some days all I will be able to do is take a quick walk around the block. But I'm coming to understand that sometimes the smallest victories are the sweetest.
Thank you for the warm welcome!
Yes it is! I just have to be careful not to be too loud and cause the neighbors to worry...or think I'm wackier than I already am. Oh wait, they already think that...ok forget that last part. :)
Hugs right back, suzie =)
Thank you kindly, SK :)
All inanimate objects have felt my wrath! From the pen that magically moved itself across the room (before I realized I moved it there and just forgot) to the earrings that DARE to have lost their earring back (how DARE they). Farm animals?
*automatically starts thinking of Charlotte's Web*
*wonders if the farm animals are more like Charlotte's Web or Animal Farm...*
*hmm...well as long as it's not 'Animal House', right??*
Thanks SK, sometimes all I have to rely on is humor and a good laugh to get through things. It really does help...most of the time. Other times I take a nap =)
Hey there Petunia!
Thank you for the warm welcome and kind words! I'm trying my best and I am blessed to have a good support system going, in person, online and via social networks like this one - so different types but they all provide great support and advice. To answer your questions -
Chiari Malformation is a condition in which brain tissue extends into your spinal canal.
Syringomyelia is when a cyst, called a syrinx, forms in the spinal cord. It's common for people with Chiari Malformation to develop a syrinx.
During one of my many reading periods I found a few items that suggest that chiari and fibromyalgia could have a link of some type, especially since so many people have both, but there's nothing definitive out. I found that interesting.
With my fibro, I really think it got started when I went through a mega stressful point in my life - I didn't have an accident or any physical trauma, well minus the stress which was putting a lot of physical constraints on me. In a short span of time I experienced a death of a friend, a job layoff, car breakdown, almost had a lawsuit among a few other things I'm forgetting right now. That all happened in about a 4-5 month span before my symptoms started to manifest. I really think that period in my life triggered it.
Thanks for welcoming me and rest well =)