Ahoy Fellow Fathomers, I’ve decided to use my blog not only to writing, music, and other facets of entertainment, but, also to share my journey. I found out on June 19, 2013 the reason for many of my ongoing health problems is because I have systemic lupus, also known as SLE.
Thank you for listening, each week I will have a new installment chronicling my journey. Please, please feel free to comment, write, share. I hope to use this forum as a help to all of us, no matter what pain you are experiencing. You may also send stories to me via finlessbook at gmail dot com. I will respect your privacy and maintain your anonymity, if you so desire.
Hugs for today …
A few posts ago I talked about this horrific sunburn itch that wreaked havoc with my body for a few days. I thought nothing could top that incredibly debilitating sensation. Until this past week…when I developed this mind ripping itch from taking a shower.
What? Am I allergic to water now? This is nuts.
Before all you problem solvers offer solutions, and I’m all for anything that works for someone else, I will tell you that I’ve not changed soaps, shampoos, laundry soap, water filtration systems, yadda yadda yadda. With all things remaining the same, every time I’ve showered for a week now, I develop this itch unrelated to a visible rash or other skin disorder. It lasts at least an hour and this most recent time, I’m still itching several hours afterward. It makes me want to scrape my skin off with a power washer. It’s intense. Have any of you taken pain medicine such as morphine and experienced the dreaded morphine itch? That’s what I’m dealing with, but even more painful.
With the help of the internet I began my usual research. It seems that along with a diagnosis of #SLE, there may come many unusual side effects that may or may not be medication related. My favorite place to start comes from the many chat forums, especially in the medical community. Almost right out of the gate I found the phenomena Aquagenic Pruitis. From the sometimes accurate Wikipedia it states- Aquagenic pruritus is a skin condition characterized by the development of severe, intense, prickling-like epidermal itching that is without observable skin lesions and that is evoked by contact with water.
I’m not making this up- The name is derived from Latin: Aquagenic, meaning water-induced, and Pruritus, meaning itch.
Several websites supported the use of anti-malarials, such as Plaquenil, may cause this condition. Which concerned me because finally, after four months, my body actually feels better and I’ve returned to a more progressive workout schedule. I’m finally feeling more normal and would hate to go back down the road I’ve already traveled- and I fear that would happen if I have to stop Plaquenil.
Today, I sit scratching my scalp, arms, and the occasional fire-ant-feeling ping in random places over my skin. I keep going back to the internet, trying to figure this out. The further I dig (no pun intended), the more specific some symptoms seem to be, indicating other origins of the itch symptom. One that particularly caught my eye- this incessant itch of my female skin areas. You know, the external nether regions where no woman wants problems. Several years ago I had a similar problem and actually had surgery, a partial vulvectomy to be exact. After surgery, my doctor determined I had a pre-cancerous condition but, after he excised part of the tissue, the margins were free and he removed any cancerous skin.
Thank goodness! But, could it be coming back? Why am I so itchy once again down there? Could this all over body itch be some type of blood disorder?
Well…of course when taking a shower I wash all of me, but I can’t have some itch reaction that lasts for days just because I shower or bathe. From further reading, this even creates a shower “phobia” that keeps people from washing regularly. That can’t be me either.
Some forums describe taking a warm bath and it prevents this itch, others swear by cool water shower, some say the hotter the better. Some folks swear by a menthol cream, or something like Gold Bond, but, prescription strength. From everything I’ve read, I didn’t find just one answer to solve anything. Some of this could just come with lupus territory, and that fills me with dread. This itch could really drive me insane, it’s THAT ghastly. It’s affecting my concentration and last night I slept by doubling up on Benadryl, and I can’t do that daily and be a sharp-functioning individual.
I have an appointment tomorrow with a new –gist…this time a hematologist. Maybe I’ll get some answers.
Have any of you experienced this? Maybe if you have Sjogren’s, SLE, other autoimmune disorders, or health conditions you have firsthand knowledge? I could really use some help here before I invest in that power washer or bring my electric sander to work with me.