November 29, 2014 at 5:09 pm #748
Hi I’m wondering if any one has any suggestions. I have eds type 3 and pots. Over the years I had random hives but nothing major. More recently I have been having chronic itching episodes lasting a month or so then disappearing and coming back. Getting worse each time. It’s not all true itching some if it is prickly highly sensitive skin where the slightest touch is really exaggerated. This current episode is waking me from my sleep with itchy crawly skin. No rash or lumps. No dermatographism. Antihistamines even on double dose do not help. I have intermittent burning mouth lips and gums, inflammation in my oesophagus, stomach duodenum and vagina. I’m starting the low histamine diet but I can’t tell what foods are troublesome as I wake up like it. Any suggestions would be gratefully received.November 29, 2014 at 10:17 pm #5122Dr. DianaKeymaster
Hi and welcome to the forum! You know, your reaction doesn’t sound allergic at first blush (which is probably why antihistamines don’t help — and likely, a low histamine diet may not help, either). Some non-allergic inflammation will respond to steroids, though. I wonder if your doctor checked your inflammatory markers? CRP? SED rate, etc? Did anyone biopsy your inflammation (which can give answers, but the biopsy itself can increase the inflammation — a lousy situation). Do you have any other symptoms you would link to your infammation? Hang in… It seems that many of us have LOTS of funky inflammation 🙂November 30, 2014 at 5:48 am #5123
Thanks for your response, I did have my internal inflammation biopsied and they just said it was mild chronic inflammation caused by reflux. But I’m on 80mg of pantoprazole. As for the inflammation in my mouth and down below my gp said it must be thrush despite my thrush levels coming back normal. They gave me a week of flucozanole and I feel worse than ever. They tested my blood for inflammation markers and it was normal hence my frustration and not knowing how to treat myself.November 30, 2014 at 12:39 pm #5124Dr. DianaKeymaster
So many things can cause itching and inflammation, I know you’re not expecting a diagnosis, but some ideas, right? I’m sure your doctors will want to rule out all of the “regular stuff” (even kidney problems can cause itching!), but steroids are usually something most doctors are willing to try for nonspecific inflammation, certainly if all else fails. Many of us have chronic candida, and a culture ‘down south’ may be a good idea to get a clear diagnosis (vulvodynia is worth ruling out). If it is thrush, there are other options for treatment besides fluconazole. Some of us had to go to extraordinary lengths to calm down candida. Steroids can make that worse, so it’s important to get a firm diagnosis. Yes, I know you must feel like you are chasing lots of dead ends! We have all been there (for example, treating “GERD” with proton pump inhibitors, only to find out it’s not *really* reflux. Ugh. I hope some other patients chime in for you, too! 😉November 30, 2014 at 12:43 pm #5125
Some ideas would be great. I have had several cultures down below and all came back normal. I did the candida diet for 3 months just in case and I ended going through this flare up.
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