I'm not just going to be positive, not toda

Sometimes I am bound to this monster. The pain is so intense. My foot is so hard to walk on. I feel like I have no feeling in my muscles and skin, so when I walk I feel like I’m walking on my bones. The “tingling” is not just tingling it feels like tiny poisonous catipillars that are walking on my leg and arm leaving acid corroding my skin as the crawl around. I still can’t understand, I stare at my limbs and wonder why they appear to be “normal” they should be burning and melting
My hand feels like I’m wearing a glove that fits 2 sizes to small and I can’t bend them or move them. Once the burning grows to my face all hell breaks lose. I smoke a cigarette outside and really wish I looked like I felt. Like Scar face from Batman so others could actually see how I felt rather than just frowning for a moment and forgetting mins later and bumping into my arm or stepping on my toes or even turning up the ac to 65. Scar face, normal on one side and severely damaged on the other. I question my faith in God. I’m angry at my Husband for telling me not to get cry and get more anxious it only makes it worse and be positive. I say how the f*** do you expect me Not to cry it f***ing burns and how am I not going to get anxious?! If u got shot or broke your leg or were on fire wouldn’t you get anxious! And be “positive”? Really?! of course I’m anxious ;…( of course I’m going to cry it hurts so bad and I’m depressed bc this is what I will live with for the rest of my life. Forever! :frowning: All the medicines in the world can try to temporarily dull the pain for a moment(but even then it is still hurting and discomforting) but I will consistently live bound to the sound of this loud depressing alarm to remind me it’s time for yet another dosage of 8 pills All doses are 6 hrs in between and I don’t even need the alarm bc the siren inside reminds me with burning and clawing like 30 mins before). I know I should be grateful that I am alive and can most times “function” (even its hard to with these chains) but it’s hard to be grateful when I feel like this hurting bc I’m depressed that I’m hurting. I cant even be sad or cry bc it flares up my side more. Maybe I’m selfish for not wanting to continue but aren’t others selfish to want me to continue this way? I lost my child. I stare at my ultra sound and I just think I had her so close to me now I will never get the joy of seeing her face, and I traded that for this… This monster that will haunt me forever.

I wrote this in my journal at 3am while sitting outside smoking and I posted this bc I really dont want to feel alone in this anymore. Now others can understand me my physical and emotional pain. bc they do live in my shoes and I’m not alone in this anymore. I never wanted to join these sites bc I didn’t want to see other s in their 50s and 60s still tortured by this. Then it made it real. Real that this is really my future.
But atleast now I can share my experiences and help another not feel alone in their pain. And help others stay a float and see their worth, and in turn try to take my own advice.
What ever your faith, I ask you to be blessed. God bless us all with tranquility.
“So do not fear for I am with you. Do not dismay for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand” Isaiah 41:10

Hang in there Tiffany. You will be in my thoughts and prayers that things will get better.

It is so hard to be positive when you are in physical pain. I like to think that your unborn child is your Guardian Angel now. I have seen so many medical advancements since I had my AVM bleed. I believe at some point medical technology will catch up with your condition. In the meantime, I will be praying for you.

I’m sorry you are in pain. I find that it helps to repeat the phrase “I am getting better and better each and every day in every way”. Repeat every day until you actually believe your own words. Don’t give up. You are in my prayers.

Thank you for your kind words of encouragement. Although I get very low when it is that bad I do have hope and a desire to not let it consume every breath I take. I pray for strength and to just “let God be God” and if my future is not to be healed as I’d like it to be to at least be at peace and strong enough to be an example for other sufferers. Thank you again and God bless.

Hey Tiffany,
Thalamic pain, also known as Central Pain Syndrome, CPS is a vicious, 24/7 monster that affects many neuro pts. to various degrees & is indescribable.
The best of the best physicians will tell you it's one of the most complex and poorly understood pains, & presently there is no 'cure,' however there are various meds that help some pts. find relief.
Since developing CPS, I've had to change my 'wardrobe,' including shoes. The denim jeans I used to love to wear I have replaced w/soft sweatpants (winter) & soft, cotton blend shorts or capris (summer). My left foot 'thinks' I'm walking on marbles, so I either go barefoot @ home or wear archless shoes. My left knee feels like everything is 'torn,' yet an ortho dr. says everything looks ok & is probably coming from thalamic pain. :0
We are not alone here in our community & I find great comfort & strength in this! :)
During the daytime, keeping busy as possible & within limits helps me cope. In the p.m. when wanting to relax is when the CPS monster likes to remind me of its presence. :(
For myself, keeping as positive attitude as possible ;), avoiding stressors, getting rest & keeping a sense of humor helps me cope, as well as having a wonderful & supportive spouse.
I stay in correspondence w/ a medical-teaching university neurologist for any new modalities on the horizons & remain hopeful the brilliant minds of neurosciences will one day find a cure.
In the meantime, take care & never give up hope my friend!