On being untouchable and the torment of PUPPPs: a (plaintive) rant
December 15, 2014
Once, I thought, this pregnancy thing is tough!
Once, I thought, it’s so frustrating that I can’t get up without help, eat normally, see my feet or tie my shoes, lie down without getting heartburn or short of breath, or getting the crap kicked out of me by an (always) amped up LB.
Now, I know better. That’s all nothing next the cursed PUPPs. Every centimeter of my skin, from neck to toe, is covered. I am become a walking mass of lumps, bumps and rashes. I feel like a disgusting reptilian leper.
All the formal literature seems to be clear on what we know about PUPPPs, a misleadingly cuddly acronym for basically a skin plague (Pruritic urticarial papules and plaques of pregnancy):
It “usually” strikes women in their first pregnancies, in the 35th week, 70% of cases are in women carrying boys or multiples, the cause is unknown and generally won’t go away until delivery. It’s not supposed to be contagious, and shouldn’t affect the mother or baby long-term or after birth. I guess the fact that PiC hasn’t caught it is evidence that it’s not contagious.
Basically, it’s nearly all completely useless information. I’m glad it’s not contagious of course and even more importantly that it shouldn’t hurt LB but otherwise, who the hell cares if it normally strikes people carrying multiples if you get it and you’ve got a singlet? Or if it normally starts at 35 weeks and you get it much earlier? The more pressing thing is that which we have no answer for: what causes it and how to deal with it!
The very cynical part of me says there’s no formal research on this because it only affects women and has no mortality rate. Never you mind this occurs in 1 of 20 women and has driven those with severe cases to actually induce as early as is safe to seek relief, it’s not warranted a single published study that I could find.
So I’m left digging out forum after forum of anecdotal experiences which tell me that women are experiencing it when they carry girls, that some are afflicted as early as at 12 weeks all the way up to the “usual” 35 weeks, when they’re on their second, third, or fourth pregnancies, that it goes away after a week or two for some people and doesn’t until delivery for others. For still others, horrifyingly, it doesn’t go away for weeks after delivery and even more horrifyingly, some people are getting it after delivery and living with it for MONTHS.
I guess that last one mostly academically horrifies me because I’ve got it now. But as awful as this is now, my imagination is more than up to the task of envisiong being the one for whom delivery doesn’t clear it up and then add a helpless newborn to the mix when I myself am the next thing to useless.
Not so silent suffering
The itching is far more intense than chicken pox. I clearly recall being seven, left lying on the bed during the summer covered in lotion, and being sternly told NOT TO SCRATCH. I did NOT scratch. It was very uncomfortable but the lotion did help the itching, so of my “things that sucked” memories, it was just a crappy experience.
This has reached the level of Utter Despair. It’s comparable to those moments in my late teens where I was trying to get through college and working 100 hours a week. That in itself was crappy but it was the crippling pain in my hands that truly made it Hell.
For years, back then, I only slept a few hours a night because the pain prevented me from falling asleep or woke me from fitful sleeps. For an otherwise anti-emotion teen, more nights than I care to admit were watered by hot, angry tears, arms suspended above my head on ice packs in a futile effort to dull the pain.
At a mere 3, 4, and 5 days into the itch and pain dominated sleep deprivation, I found myself spiraling down that pit again.
ARGH.
My skin has became so sensitive that even air currents are uncomfortable. Most fabrics trigger the urge to scratch on contact, only the softest of cottons were tolerable, and skin to skin contact is the worst trigger of all so lathering the special soap and applying lotion is a special kind of teeth-gritting, do-it-anyway, torment.
Where there’s any skin to skin contact or pressure, say from natural weight from lying down, basically any place that starts to build up warmth at all, the rash flares up angrily. Basically sleep was out for a week while I figured out how to cope. One night, I resorted to standing outside during the storm trying to chill my entire body so that my skin would calm down.
Where LB’s weight presses down on my legs, those happy bumps have merged into MegaZord-sized masses that moved past itching to plain old pain. Minor consolation: it’s so bad that I’m not even tempted to scratch them.
I honestly look like I taunted a few hives of killer bees and hung around for their justice.
I’ve tried everything that the doctor recommended and everything eczema-experienced friends recommended; 3 kinds of antihistamines, 4 kinds of lotions, oatmeal baths, hydrocortisone, 3 showers a day using the anecdotally recommended pine tar soap. Even drinking V8 juice which I don’t like one bit because I don’t even know why that’s supposed to help.
None have brought actual relief, only the oatmeal lotion and Sensitive Skin Aveda lotion seem to keep the burning itch from getting worse. The hydrocortisone occasionally calms the worst on my hands, but can only be used sparingly and where my skin stays cool because it stays greasy and seems to conduct heat, exacerbating the discomfort. It also gets on everything since it doesn’t absorb. Because when everything up to my fingertips are affected, I really want to do a few extra loads of laundry!
My hands are afflicted with the smallest and most densely packed bumps so I’ve got quarter sized bump-clusters on the backs of my hands, on my fingers, between my fingers. This makes typing a hover-above-the-keyboard affair, exhausting to say the least.
The entire belly, Ground Zero for this nastiness, is of course thoroughly cloaked under bumps of all shapes and sizes, as is my back, so leaning on anything in any direction is strongly contraindicated. My legs flare up the most dramatically when they touch each other and that means always staying fully clothed, top to bottom.
Clothes! Another huge frustration. Everything has to be smooth soft cotton, fit but not tightly so it doesn’t shift but doesn’t constrict, no elastic waistbands since the indents from waistbands just provided new tracks for new rashes. I own exactly two shirts that suit and have been trying every pair of pants and shorts in the house to no great success.
COPING
After ten days of trial and error, amid increasing desperation, I’ve found that I can at least sleep if I keep flipping over to the opposite side every 15-30 minute like a rotisserie chicken and “baste” myself with ice packs, tucking them into the sides that have accumulated warmth since the last flip. It means very short naps rather than actual sleep but it’s still better than sleep madness of working and functioning on 1.5 hours of sleep a day.
During the day, I sit incredibly awkwardly on piles of blankets covered with cotton sheets to protect myself and the furniture and am VERY aware of how long I’ve been sitting because of the pressure issue. It stinks.
And of course the regular pain hasn’t let up so I get this great combination of itching+pain+fibro pain and swelling. If I thought I knew what feeling helpless and useless was like before? Sure didn’t.
PiC has had to help me with the most basic of life functions, not just cooking but sometimes feeding me when the swollen from pain and swollen from rash hands were particularly bad. He’s learned the art of applying lotion evenly and keeps me supplied with fresh icepacks day and night.
Normally, by the time I write up something like this, I’ve achieved some sort of sense of positivity but nope. Not this time. Doing the best we can but mostly just trying to get by and leaning way too much on PiC. Poor guy.
Oh, PUPPPS are the worst. I had a mild case in my 2nd pregnancy- mostly confined to my shins. But the itching! The only lotion I found that helped was Dream Cream from Lush. I have NO idea why it helped, but it did. I hope you can find something that helps you!
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I’m adding that to the list if this other stuff makes no difference! Thanks.
This sounds so miserable – I’m so sorry you have to go through this, and I’m hoping yours is the type that goes away QUICKLY.
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Thank you! When I have the brain to think of anything else but the itching, I get so frustrated that there’s so much left to do that I can’t help with now so I’m really really hoping we can beat this back.
That sounds awful. I have no suggestions or advice, but you have my very sincere and wholehearted sympathy.
Thank you.
Oh lordy. I had the pox at 13 (including on my birthday) and recall all that misery.
Aloe vera? Yeah, I got nothing else. May this pass soon.
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Gaaaahhhh! Pregnancy hives???? That is beyond annoying! I’m so sorry you’re having to enjoy this new moment of character-building joy!
There’s a product called Itch-X. Try that. Comes in a yellow tube. Look for the gel that doesn’t list cortisone as its primary ingredient but instead has as its active ingredients benzyl alcohol and pramoxine HCL. That is the ONLY product that helps my itch…but use sparingly and test in a small spot first.
Another strategy might be the hottest shower you can stand. Okay, I’m SURE this is an old wives’ tale, but when I was living in an Alabama swamp, the home of more biting insects than the entire teeming human population of the planet, someone told me that if you run hot water over an itchy bite it will itch like crazy at first and then the itch will subside for a number of hours. The theory behind this is (don’t look this up on Snopes because it’ll prob’ly just discourage you) that the hot water forces the histamines to the surface (no! don’t ask! we don’t want to know the truth) and so the stuff your body produces that itches is then beaten back for a little while.
Weirdly, this seems to work with insects bites and certain allergic rashes. The effect can last three to six hours. Be careful not to burn yourself, o’course….
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I got nothing but sympathy. I’m really sorry to hear your immune system is playing silly buggers. I hope it pulls it together soon.
Sorry to hear you’re going through this, and I hope you find a better solution. Add this to my list of NOPE, not getting pregnant any time soon!
Wow, that’s so miserable sounding 🙁 I hope you find something to help it.
Soft cotton hugs 🙂
AGH!!! This sounds like a miserable nightmare! The scientific community has failed you. I wish I had a suggestion that would help! I am so, so, so sorry you are going through this. May it pass and be a distant memory soon. Also, make a note to remind LB of what you went through so he(?) is even more grateful and doting. 😉
I saw your tweet about this, but I had to look it up to really understand how horrible it is. Sounds like shingles for pregnant women! How awful!!
Here’s hoping you get through this soon and have no further pregnancy complications. Gestating is hard enough work as it is!
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