Mast Cell Disorders Forum - Creepy Crawly Skin

Joan

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Creepy Crawly Skin
07/15/12 at 13:16:53

Does anyone get creepy-crawly feelings on their skin when they lie down? A friend with a mast cell flare is having that, but only when lying down, so she's having to sleep in a recliner.

I've looked on Google to see what I could find, and nothing helpful turned up. It seems like it's probably a mast cell symptom but am wondering if anyone else has talked with a doctor about this. Could it be a medication side effect from any of the antihistamines?

If anyone's had this, what do you do for it?

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Joan

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Lisa FORUM MODERATOR/ADVISOR Offline I am not a doctor. Posts: 1499 Volta Redonda, RJ Brazil	Re: Creepy Crawly Skin Reply #1 - 07/15/12 at 14:51:44 Well Joanie, I don´t know what it is, but if it doesn´t respond to antihistamines, then it´s most likely not masto related. That´s the only clue I could give you. Lisa
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PJP123

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Re: Creepy Crawly Skin
Reply #2 - 07/15/12 at 17:07:14

Joan,

I've used the word squirrely to describe the feeling I have gotten (when lying down only) when I was 1st sick. It may have been the Singulair, or high blood pressure (I am now on meds) or infection from periodontal disease (had 2 molars pulled in last 5 weeks or so. I don't have the feeling anymore. So if your friend is on Singulair at night that could be the culprit.

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Starflower

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Re: Creepy Crawly Skin
Reply #3 - 07/15/12 at 17:16:04

I get a feeling like that when I take tramadol... and it's only when I'm laying down. I suspect that's because when I'm vertical I'm distracting myself with other things Wink

It's not a hive-y itch that goes away with more antihistamines (I've tried). It's more like a "Do I have something crawling under my skin?!" kind of feeling. It's caused by some effect involving the nerves (I forget what, exactly... late night reading on the Internet). I'm just in the weird minority that gets that symptom. I haven't discussed it with my doctors. It doesn't seem to be life-threatening and there are so few medications I can take for pain! I hate to rock the boat when it works fine for me otherwise.

Heather

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Doozlygirl Mentor Offline Posts: 262 Wisconsin	Re: Creepy Crawly Skin Reply #4 - 07/15/12 at 18:06:56 Joan, I've read about zyrtec withdrawl causing severe itching skin. Has your friend recently (within the past month or two) tried decreasing cetirizine? I ran across a bunch of forums/websites on the itching back in December, but don't recall anything about when laying down. Maybe there is something on one of those sites?? Lyn
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Anaphylaxing

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Re: Creepy Crawly Skin
Reply #5 - 07/15/12 at 18:26:54

I haven't read this whole thread just Lyn's post but when I halved my cetirizine I had itching and mild throat swelling for 2 days that subsided and I went back to my normal baseline. Just considered it my body readjusting. If it hadn't settled after a few days or was progressive, I would've gone back up on my dose.

Makes sense to me that our bodies would get used to it and maybe a bit lazy when actually able to kick in and reduce the symptoms. Guesswork though because sometimes it's too much for the body to cope with and the med is needed

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Joan

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Re: Creepy Crawly Skin
Reply #6 - 07/16/12 at 11:56:05

Thanks to all of you for the suggestions. I found some things that mentioned antihistamine side effects and also it being part of restless leg syndrome, esp. in people with fibromyalgia. I know she did cut out Zyrtec, but I'm pretty sure it started a few weeks before that. Lyn, do you have a link to any of the sites? Did it say whether people improved and how long it took?

Heather, that sounds just like what she's having. I don't think she's taking any tramadol or pain meds at all, but it could be another medicine side effect. There are so many undocumented side effects!

It's probably one of those things that we'll never know or will resolve on its own or as she reduces meds.

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Joan

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Doozlygirl Mentor Offline Posts: 262 Wisconsin	Re: Creepy Crawly Skin Reply #7 - 07/16/12 at 12:04:40 Sorry Joan, I don't have a link for you. Lost my computer HD a few months later and didn't have my favs backed up at that time. I remember searching zyrtec withdrawal and finding all sorts of foums discussing it. Lyn
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Anaphylaxing

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Re: Creepy Crawly Skin
Reply #8 - 07/16/12 at 13:00:16

Not sure if we came across it in the same place Lyn, for me it was the IA yahoo support group discussing a posted physician discussion on LinkedIn about this observation. I have not found that, but did find this patient discussion when I was interested in people's experience with it before I reduced my dose

http://www.peoplespharmacy.com/2000/04/01/cetirizine/

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Doozlygirl Mentor Offline Posts: 262 Wisconsin	Re: Creepy Crawly Skin Reply #9 - 07/16/12 at 17:34:06 Ana, Thanks for sharing that link. It is one of the sites I recall reading last winter. This should give Joan a place to start. Lyn
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Joan FORUM ADVISOR Offline Posts: 1502 Colorado	Re: Creepy Crawly Skin Reply #10 - 07/16/12 at 20:26:18 What I wondered about the comments on that site is the "chicken and egg" problem. Did most of those people have withdrawal symptoms from the Zyrtec, or did they stop the antihistamine and start having symptoms because their mast cells still degranulating and no blocker was in their bloodstreams.
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kimtg68

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Re: Creepy Crawly Skin
Reply #11 - 07/18/12 at 15:03:50

I get a sensation (not like the itchy feeling) like small insects might be on my skin. Sometimes, not always, that sensation increases into what feels like a mosquito or ant bites. It happens for me during the day when I am alert, sitting standing moving. The crawling sensation I have become used to for the most part. But the biting feeling will make me slap at it like you would to slap a mosquito biting you. When I see no insect remains and no inflammation from a bite but I keep feeling it (and it will move around) then I deem myself nutso! LOL

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