Reply To: Screaming pain

January 13, 2013 at 11:29 pm

Took me 3 tries to log in…geez.

I wanted to know if you were in current treatment for your CIDP?? Having IVIG regularly ?? Steroids? For me having IVIG 4 times a month helped control the nerve pain (demyelination). If you are not getting treatment for CIDP then why not?? I wear the 72 hour Fentanyl Pain Patch 100 mc. It helps with 24  hr pain control and I take Vicodin for break thru pain.

Before I was correctly diagnosed with CIDP  (semi-bedridden) and started aggressive IVIG my nerve pain was so horrid I would go to my back bedroom and scream till I no longer could. My best friend  said my pain was the bad she would understand if I chose to no longer life. The awful non stop pain noise that wouldn’t go away. I’ve been where you are. It made me afraid of returning pain of any kind.

I have found most pain docs don’t get CIDP…they just don’t understand the intensity of our nerve pain. Since you  are running out of pain meds by the end of the month this is a big indicator you need more pain control. Your pain doc needs to help you handle your pain because you deserve it. If she can’t or won’t you need to find someone who will.

Please take your wife with you to your next pain doc appointment and please please let your doctor know what you just wrote?? OK?? I am so sorry you are in  this kind of pain. You do deserve to have a quality of life without pain.