The pain caused from my Chiari seems to be never ending. I have it as soon as I wake up in the morning until I go to bed at night. Sometimes I wake in the middle of the night with unbearable pain that just won't go away in my head and neck. I have begun to notice that all of this pain has changed me, I used to be always smiling, always outgoing and making people laugh; now I find myself being short with my family members, unhappy that I cannot participate in activities with others, and when I smile it is usually fake because I am covering up my pain. I do have good days where the pain isn't as bad and I take advantage of those days, but those only happen once a week (if that).
I don't want to be this person. I don't want to be that child, sister, or fiancee who lashes out or can't take advantage of the better things in life. Does anybody have an suggests on coping mechanisms for chronic pain like this so I am not a terrible person? I feel like a cranky old lady, and I am only 23. Any words of wisdom or advice is welcomed.
New B, hang in there. I’m sorry and I can relate. What Em said…magnesium, arnica, and vitamin D3 is super important! These things can make a marked difference in pain. Also trying the cervical collar is a great idea. A question…does your family know how much pain you are in? Does your fiancé? It’s one thing to be in tremendous pain and be: surrounded by supportive people who are trying to show their care and love, or surrounded by people who behave as though they are unawares of how bad you are feeling, like your condition is being ignored. Do the people in your life need to know how bad it is? They need to know so they can at least have the opportunity to be supportive. Speaking for myself, when I’m in a lot of pain and my husband behaves like there’s nothing wrong and never has been I get more irritable than usual- I get frustrated and feel lonely.
Jenn
I have seen a NS, a year ago and he said he did not want to do anything because I wasn't falling all over myself or choking. But I feel like something has to be done because I cannot keep living this way. My Chiari is only at a 4mm, but one side hangs down further than the other so I have the pressure from both of them hanging down, as well as the longer one putting excess pressure on the shorter one.
My neurologist is fighting for me and is trying to get me into someone who will do the surgery, but it is tough. I live in Canada in the poorest province in the country and wait lists are long and my condition is not common knowledge among many the doctors in my city and province, so hings move slowly.
Thank you for the suggestions, I think I am going to try some of them. I did ask my doctor about a cervical collar and he wasn't sure it was a good idea, but at this point I am ready to try anything.
Emmaline said:
I'm so sorry it's come to this...You wonder how you're going to make another day? Have you seen a NS yet? Maybe now would be the time to refocus and take the bull by the horns to get some help.
Educate yourself as much as you can so you can ask the right questions to streamline your care. It's so important to know as much as you can, to get screened for other lurking illnesses (EDS) to get the best care.
As for coping mechanisms, have you tried ice packs, Arnica gel, chelated magnesium supplements? Finding out about you and your needs, like maybe a cervical collar? Hope you find something, you will certainly learn to be grateful for the little things after going through an illness like this. Hang in there...and we're here for when you need to vent!
Thank you for the prompt feed back, it is much appreciated!
I have tried B3, as per a suggestion from my neurologist, but I just found it made me unable to sleep so I was advised to stop taking it. I do think I will try some of the other suggestions.
As for people knowing I am in pain, my family does know I am in pain, my mother in particular is sympathetic as she has been a nurse for 28 years. My father on the other hand is less sympathetic because he was in a motorcycle accident 3 years ago (a week before I was diagnosed with Chiari) and he completely shattered his shoulder so he is in a lot of pain and he just tells me to suck it up. It makes me feel like I can't express my pain to my family when he is around so I keep it to myself. My fiancé knows I am in pain and he is sympathetic, but he also get frustrated and angry that they are not doing more to help me.
I do agree, it is more frustrating when you have to pretend like it isn't there or other people pretend like there is nothing wrong. It is so nice to know I am not the only one, I should have joined this group so much sooner. Thank you so much!!
jcdemar said:
New B, hang in there. I'm sorry and I can relate. What Em said...magnesium, arnica, and vitamin D3 is super important! These things can make a marked difference in pain. Also trying the cervical collar is a great idea. A question...does your family know how much pain you are in? Does your fiancé? It's one thing to be in tremendous pain and be: surrounded by supportive people who are trying to show their care and love, or surrounded by people who behave as though they are unawares of how bad you are feeling, like your condition is being ignored. Do the people in your life need to know how bad it is? They need to know so they can at least have the opportunity to be supportive. Speaking for myself, when I'm in a lot of pain and my husband behaves like there's nothing wrong and never has been I get more irritable than usual- I get frustrated and feel lonely.
Jenn
You can order a collar online- just make sure it is tall enough to match the length of your neck, and try vitamin D, if you haven’t already- the D I think makes the biggest difference of the supplements.
I’m glad you have support from your mom. And btw id take a broken shoulder over Chiari any day of the year. It can take time for people to understand, but you are strong- don’t ever underestimate how strong you are. 