Once again another seemingly pointless trip to the ER, although this ER was amazing! Two weeks and two ER trips have made me start questioning myself. Last week I thought I was having a heart attack and yesterday my left arm went numb - sitting at my desk. Tingling, cold, sharp pain running from the elbow down, but the whole left arm was heavy. I was able to still use it and the strength was there, it just felt weak. I didn't bump it, I wasn't even using it when it started. I waited a few hours and then went to get it checked out at the NS hospital. I figured a PCP was rather pointless at this point if a connection to Chiari was there. I am meeting a NS on Monday for the first time, in the hopes of answers but I am scared. Has anoyone had these arm issues before? It was a duller sensation this morning and I slept through the WHOLE night for the first time in weeks (hallelujah!) but I am so tired that I could go home and go back to sleep for the rest of the day and the sensation is returning even though its in a sling.
I can't put my kids to bed and I am not the wife or mother I was or want to be. And now I have a new job that is suffering for it. I am already on anti depressants but I am fighting big time within myself. I have just started clueing my family in to just how scared and symptomatic I am daily. Should I be as scared as I feel or do I really need to just calm down and breathe? Thanks for listening.
Thank you so much. I am feeling SO incredibly negative today and its not me at all. I'm a silver lining, probably annoyingly at times' type of person. So thank you. Being not alone is such a relief to hear. My husband said to me yesterday, "It's tough to get old honey". I'm 31! I would have started living a lot wilder if I knew old was so close to the beginning for me!
Emmaline said:
Amanda, these things are very common for us. What used to be stuff that would freak me out, are now considered normal for us Chiarians...
We are made to feel like we are mental when a new symptom presents and we go to the ER...when it's just Chiari rearing it's ugly head. My arms used to fall asleep during the night until I got my wedge pillow. For some reason taking the weight off my regular pillow won't pinch the nerve as much. Chiari affects the nerves running down your neck, arms and shoulders.
This is not life threatening...just very unsettling while you get used to all the new stuff. You are not alone, you're not crazy, this is Chiari. Hang in there...we're here.
Another realted question - how does everyone keep working with these symptoms? I really like this job and I feel awful when I'm out for this or that, but as the symptoms keep worsening, at what point do we just say no. I hate to say it but right now my desk is so much quieter than being a Stay at home mom. But function wise its exhausting just being awke and dealing with the dizziness and constant head ache. I'm guessing one of the next steps will be pain management and I pray to God that it helps drastically.