Hi All! I am new to the fibro community on Ben's Friends. But not new on Ben's friends entirely as I also belong to the Chiari Malformation community. I have chiari I malformation as well.
I was diagnosed with fibromyalgia long before I learned I had chiari I malformation in Aug of this year. I have a neurosurgeon, and I see a neurologist and I still see my rheumatologist. They all agree that both my fibromyalgia and chiari are two separate illnesses though both of the illnesses will share some of the same symptoms.
I look for a support group of people who can understand my daily struggles and ups and downs because my family and friends just do not get it. One of my best friends has MS and she is the only other living person I know that I can talk to in real life who can understand how hard it is for me. But beyond that, its difficult. I could talk to a wall and hope for a better result.
Through it all, I keep my faith, I stay positive and still try and laugh. I always smile even when my body is at its worst on the inside. I am always willing to bring a smile to someone elses face even if I can't bring a smile to my own. I have a big heart. I am a really down to earth person. And I look forward to getting to know you guys!
Thank you for allowing me to join your group and for a nice welcome from those of you who have welcomed me so far :)
You have come to the right place, everyone on here will understand your struggles. Not sure what the other condition you mention is, will google it later. You have a great attitude, stay positive and laugh. I do try to see the humour in many situations, and I find it helps.
Hi Jenna and welcome. Hope you get lots of support and info from the site. We all understand how hard it is to discuss our symptoms with people who just don’t get it. That’s why support forums are so helpful.
Take care!
I’m new to this support site too, but am excited at what is in store. I too have my faith but sometimes get weary and wonder how much more we are supposed to take. Hang in there. I am willing to be open and honest about anything and will help with whatever I can. I will for sure pray for you Jennabug. We all need that. Just hearing you talk about staying positive and try to bring a smile to someone’s face has helped me look at how I am with others differently. Thanks and ((((hugs)))) to you.
Mary
Auburnm - Jennabug is my nickname that my dad gave me as a little girl. It has just stuck with me all my life. Various family members and even friends call me that. I am glad you like it <3
In response to Chiari Malformation this is what it is:
a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms.
I am still learning about both conditions and even about diabetes. I found out I had diabetes the same year I finally got my fibro diagnosis which was in 2010. What is really funny is having a mother as a nurse who is supportive when it comes to diabetes but when it comes to fibromyalgia or chiari, she does not understand and really pushes me hardcore to be the person I was before I got sick. I feel so alone a lot. I have a lot of friends but they do not understand all but my one best friend. But I don't want to burden her or others with my feelings or what not. I am sure you guys can relate.
I don't want to ask for help around my house because then I get the look of "why can't you do it? You're my mother or you're my wife." My son who is 18 and is still here, god bless him, when he is not working, he will help me out. He understands I don't feel well. He has always been good to me. My youngest daughter makes life hard a lot. She is 15 going on 25 and does not listen to nothing and will not help or even do her chores. I can take away everything and it does not phase her one bit. I am worn out. I am so sorry to put that here. I am just so frustrated. I feel like either sleeping my life away or crying. My pain level is off the hook! I haven't slept right in days. My blood sugar is a mess and so is my blood pressure. :(
