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Old 03-08-2010, 07:45 PM #1
bnemecek bnemecek is offline
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Default Sensory neuropathy after onset of pityriasis rosea?

Hello everyone. I hope you are all doing well as I feel your pain and understand how debilitating it can be. This is my first post, I have been reading the forums for a few months now, and decided it couldn't hurt to post my story.

I have suffered from what I believe is sensory neuropathy for the last three years and am looking for some answers. Here is my story.

I am a 23 year old male who graduated from college a little less than 2 years ago and developed my condition (I think) while attending the afore-mentioned college.

I was 20 years old at the time and living with a bunch of college friends when I suddenly broke out with a full body rash. Thinking nothing of it (because I have had some weird rashes in the past) I went to my school's doctor (oh no, a school doctor!) and she diagnosed me with pityriasis rosea, however, she wasn't entirely sure because she couldn't find the 'herald patch.' She basically said there wasn't much I could do and it would go away on its own. I think this rash may have developed from some type of parasite I was exposed to after sleeping on a mattress that had been sitting in our basement for a while.

So after about three months of excruciating pain (I mean worst pain I have ever experienced) the rash finally went away. I thought, cool, it's gone, I'm finally rid of this thing. So I went about my life as usual.

Turns out, I continued experiencing the symptoms I had when I had the rash, however to a lesser extent (but not so much of a lesser extent that I could just forget about them). The symptoms include creepy crawlies, really sharp stings, general skin irritation and the like. I'm like, man, I can not continue living like this, because it was really driving me crazy. This went on for about a year before I said, ok, enough is enough, I really need to do something about this.

So I went to my doctor at the time and he basically told me to use Eucerin cream and use bar soap instead of body wash. Simple enough, I thought. So I did as instructed and found it didn't help in the least.

So I went back to him and he told me the symptoms were in my head and there wasn't anything he could do about it. Great, I thought, this guy thinks I'm nuts, just what I need to hear. So I tried living life like normal again but I could not ignore what I was feeling.

About another year or so later I went to an allergist to see if I was having an allergic reaction to something. Turns out, the only allergy I suffered from was that of dust mites, a very common allergy, so I was told. He tried a few different drugs on me: hydroxyzine, claritin, and gabapentin. The gabapentin seemed to quell the symptoms to some extent so I decided to stay on that.

Fast forward a few months and I'm still suffering these same symptoms only slightly diminished. This wasn't good enough for me so I decided to see a dermatologist. She prescribed some anti-histamines and some topical solutions (tea tree oil and pramoxine) which had little to no effect.

Great, this is getting harder to deal with by the minute and no one seems to have answers. So I decided to try a different doctor. We came to the conclusion that it might be a form of sensory neuropathy. I had my blood tested and everything came back normal. My vitamin D was a little low but not out of normal range. So he put me on Lyrica to see if it had any effect. I was only on it for about two weeks but the positives didn't seem to be outweighing the negatives (I was really tired all the time) so I went back to the Gabapentin.

Meanwhile, about 6 months ago I developed a couple 'trigger points' in my body. One between my left shoulder blade and spine and one right in the middle of my right hamstring. I am not sure if this is related to my skin irritation or not. The pain I am experiencing from these points is different from the constant skin irritation. It feels more like a ball of nerves is wound up and radiating like a deep muscle pain. The point in my back seemed to cause an increase in tingling/numbness in my arms, while the point in my leg seemed to radiate down my leg into my toes. I have been seeing a chiropractor and an acupuncturist for these spots, neither of which are really doing too much good. I am going to see a physical therapist in the next couple weeks to see if he can help.

So basically, right now I am dealing with these two 'trigger points,' but more importantly, this all-over skin irritation that is driving my absolutely crazy. I feel better when I am not wearing any clothes, as anything that touches it just sets it off. It feels the worst when the slightest thing, like a hair, brushes up against it. I can REALLY irritate my skin by lightly brushing my stubble on my face up against it.

I have recently noticed that smoking does quell the symptoms to some extent. I have never been a smoker and do not wish to start so I would like to find some better answers to this problem.

So my question to all of you is have any of you experienced anything like this? Where your skin became super irritable after a full body rash. It seems as if most of you started with tingling/numbness in the feet, which developed into additional symptoms, whereas my symptoms took a hold of my skin first.

I am typically the type of guy to grin and bear it, but this is honestly too much for me to handle. And, God willing I live a long life, I will not be able to take it for another 40 or 50 years; I don't even think I can take it another three years to be honest.

So if anyone has any sort of advice that could help, please do not hesitate to post it here. I am struggling badly with this and will do anything necessary to make these symptoms stop.

tl;dr I developed a full body rash three years ago which was diagnosed as pityriasis rosea. I believe this rash came about by sleeping on a mattress that had been in our basement for some time and perhaps had a parasite on it (bedbugs?). The rash cleared up but I was left with hyper-sensitive skin, creepy crawlies, sharp stings all over my body. Have tried various things to cure symptoms with no luck.

If anyone has any suggestions or answers I will be forever indebted to you!

Thank you for reading and God Bless.
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Old 03-09-2010, 06:52 AM #2
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Default I'm certainly not a doctor--

--but this sounds suspicously like a bad attack of shingles followed by post-herpetic neuralgia . . .

Admittedly, most doctors don't look for this in young people--they associate with immune-compromised older adults--but anyone who has had chicken pox at some point in their lives can get it, as the herpes zoster (varicella) virus gets immortalized in the nerves, particularly the dorsal root ganglia, and can "reactivate" or break out under conditionos of stress or other infection:

http://neuromuscular.wustl.edu/nother/infect.htm#hz

You really need a much more thorough work-up and investigation with a doctor who's willing to dig a little deeper, and do much more testing.

Last edited by glenntaj; 03-10-2010 at 06:31 AM.
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Old 03-09-2010, 09:30 AM #3
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I think maybe the original diagnosis may be wrong.

Bed bugs give big red welts... not a rash.

But scabies...now this can be contracted from an old (infected) mattress. The main lesions can be lost in a global body rash that is quite itchy and sometimes painful. (I have seen it in some patients who get it all over themselves).

There are viral exanthems that can cover the whole body in response to a viral illness. If you type "viral exanthem picture" into Google you can find these. My husband had one while he was in the army and came home with it, for a leave. However, he claimed that it did not hurt or itch.

I would make sure you are eating enough foods high in EFAs, like flax oil and salmon (omega-3s). These are the main oils that repair the skin. Also in males, it is common to be zinc deficient. If you do not eat seafood or much chicken or meats, you could be low in zinc. Skin issues often happen in zinc deficient patients. This can be tested for by a blood test called the zinc/copper ratio.
There are vitamins with mixtures of things to improve skin.
One is called ACES with zinc. (by Carlson). But these can only do so much if you do not provide the essential fats for them to work on.
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Old 03-09-2010, 02:23 PM #4
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I would question the first diagnosis. Also, if possible, get an ANA and ENA done. Autoimmune disease is not as prevalent in males, but it DOES happen. Also, other infectious disease should be ruled out.
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Old 03-09-2010, 08:35 PM #5
bnemecek bnemecek is offline
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Thank you guys so much for the quick responses. I will contact my doctor tomorrow with the information you have provided me to see if I can make any progress. I will keep you posted. Thanks again!
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Old 03-11-2010, 04:32 PM #6
bnemecek bnemecek is offline
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Ok, just got back from the doctors. He ruled out shingles because the rash covered my entire body and he said shingles only appears on one side of your body. He also ruled out any auto-immune diseases because I had blood work done about a month or so ago testing for all the basic stuff (thyroid, diabetes, white blood cell count, vitamin deficiencies, etc) and everything came back normal.

He was open to the idea of my rash being a viral exanthem. I just had blood work done testing my zinc/copper ratio. I will keep you guys posted on the results!
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Old 07-01-2010, 08:02 PM #7
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Default very similar experience after PR

Hi, I'm very relieved that I found your post. I am a 40 year old woman and I had a bought of PR in March 2010. It was pretty much a text book presentation and cleared up in about a month. However, in mid-April I began to experience all sorts of strange itching/tingling/burning/biting sensations all over my body, with no rash and very much like what you describe though not as severe. I've had all sorts of blood work done and an ultrasound -- all results were normal. The sensations come and go and the doctors I've seen aren't sure what's causing them. Antihistamines take the edge off but don't do much else. My gut instincts tell me that this is all somehow related to the PR virus since it basically followed directly from that. Doctors don't seem to be interested in this theory. I know my experience doesn't offer much in the way of consolation but at least we both know that we are not the only ones this has happened to.
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