Post-Traumatic Stress Disorder (PTSD) Support Group
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My neurologist's appointment today resulted in his telling me to request a referral for a 2nd dermatologist opinion from my kidney doctor. He wants a dermatologist who works with my kidney specialist directly so as to be sure of this kidney failure prurigo nodularis diagnosis I got from a dermatologist this week.
http://www.aocd.org/?page=PrurigoNodularis
The thing is, as this dermatology website about it says: "Treatment is difficult. Due to the intensity of the itch patients often go from doctor to doctor looking for relief." Isn't that what my neurologist today suggested I do? I've already been to a primary care doc, a dermatologist, and a neurologist this week--3 docs in 1 week, not counting my p-doc. No relief. Now to a 4th doc? Really?
But I did ask for that referral to that 4th doc today. Just that it's been 48 days of this now. 48 days of itching stress will drive a person to despair. I've used a tube per night of every prescription and over the counter cream of every type now, for nothing. So my PTSD's all over the place. When I do sleep, I have wild nightmares.
About that: these 48 days of this is truly triggering my PTSD by day, too, now. The constant itching and sleep deprivation is making me short tempered when I teach class. I'm not losing my temper with my students, but I am letting a curse word fly here and there about something else in a lecture. I fear one of my students will report me for being vulgar in class even though I'm not cursing at one of them. Guess what topic I'm teaching on in my psyc class tomorrow, day 49?
The 2nd stage of the 5 stages of grief: anger. How's that for a raging itch with a side of enraging irony?
I went to the description since I have itchiness that has gotten so far out of control that I was hospitalize with IV's because of raw open wounds from scratching and the hive like blisters. Some fed by anxiety, heat and even cold. I seen one of the medications that I have been on for years(atarax, hydroxyzine hcl) which helps with the itch and anxiety, As well as a combo of script strength cortisone cream, that originally was mixed in the Pharmacy with Sarna (OTC) lotion, At the beginning I was put on steroid dose packs to get ahead of the welts(what I call them, but smaller) Even then it took almost a year to get it under control. I stay on meds and prescription cream, for maintenance and periodically take low dose steroids to help. My skin was reactive to the carrying agents in over the counter creams so they actually worsened the conditions, since that was my first thought too. It's been since 1995 since my first bout and I was biopsied twice and have regular checks for lupus, since this skin reaction is also in that wheel house. As far as I know this will be a life condition and if I skip meds or let it start without the lotion and cream follow up, or am overly stressed, I flare. Then it takes weeks to get back under control and heal.
The aterax will hit hard in the first week of usage, but it will knock down the itch and you will sleep if it is added to your regimen, it also has a restriction on too much sun. I have been on them long term now. But I would not want to be here without it, since nothing we tried (not even Benaldryl )helped.
You know I am also diabetic, so when I have to do the steroids, I am also more careful in watching my sugars. Also the site is right, scratching feeds this condition, By that I mean you don't need a welt, just scratch a spot on and off for a bit even lightly and it will trigger the welt response.
If your doctor agrees ask for a steroid shot or a dose pack and get some Sarna, it helps. Then maybe check on the meds suggested in an under the current of the itch maintenance.
My best and my prayers
Jewell