Severe Itching

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
elephants27
Posts: 22
Joined: Fri Feb 25, 2011 12:04 am
Location: Maryland

Severe Itching

Post by elephants27 »

I have been having severe itching and breaking out in a small rash around my groin area, and on the back of my tailbone. I have seen 2 determologiests, and an allergist. And thought i was allergic to dairy, so i gave it up. I have been dairy free for 2 months, and I am already a vegetarian for 20 years. I have had a cold now for the past couple days, and all i am eating is cabbage,carrot soup, and hot tea, and I'm still itching! My question is, does anyone have itching due to nerve pain? An Allergist told me that nerves can be linked to itching, instead of pain, don't get me wrong, i have pn and it is no fun, and I have been on morphine for 5 1/2 years for it, before, i was a guine pig for medicine.

I already go to accupunture, & have been for 8 years now, and I also see a physical therapist for my pn and pelvic pain.

But this is truly driving me crazy!!! I have been itching since November of last year, and its weird, cause laying down, and now sitting up, i can feel numbness in those nerves, right before it itches! And I am getting tired of having to take rx benedryl everytime i itch.Which doesn't seem to work for very long. I have not disclosed this with my doctor yet, i was just curios if anyone else out there is going through the same thing?. If anyone has experienced anything like this, please post! And it would be great to figure this out asap, since it has almost been a year. Thanks all! BEst wishes to all!
beverley
Posts: 107
Joined: Sun Jan 29, 2012 7:24 pm

Re: Severe Itching

Post by beverley »

Have you been tested for Lichens Sclerosis? Many Doctors miss this.
prolonged sitting summer -- Vulvar Burning, Vulvadynia, Urinary Frequency, Lower Back Pain, Numbness in Foot, Pain when sitting, Hip Pain
1/12 90% Better after Pelvic Floor PT and 10 mg of Elavil
3/12 Potter MRI
4/12 MRI showed Labral Tears in both hips
4/12 Hip Injection with Dr Jordon -- some improvement
7/12 FAI and Labral repair Hip Surgery, Dr Coleman, HSS, 10/12-3/13 99% better!
3/13 Flared - present,
7/14 Ilioinguinal nerve block positive
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Severe Itching

Post by calluna »

If the itching is in the area of the vulva then I would strongly recommend that you see a vulval dermatologist with some urgency, especially as this has been going on for so long. There are several conditions that need to be ruled out, lichen sclerosus is one of them, and none of them should be ignored.

But anyway, taking benadryl and not telling your doctor is not the way to deal with this. Please go and see your doctor as soon as possible and tell them what is going on.
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Violet M
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Re: Severe Itching

Post by Violet M »

I had severe itching with PN but no rash. Heat or ice helped. Sometimes lidocaine helped but often the only way I could get to sleep was to apply capsaicin (I used the soothenol brand). It burned and was painful but once the burn subsided there was a short time where there was no itching and I could get to sleep. Hermajesty recommended in another thread to use diluted capsaicin. With the rash though, I'm not sure how this would work. You wouldn't want to use it if the skin is broken. I agree with the other gals about having other diagnoses ruled out.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
HerMajesty
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Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Severe Itching

Post by HerMajesty »

I had severe neuropathic itch with PN - it is indistinguishable from pain on neuroconductive studies, but your brain somehow processes the nerve damage differently. However, the only skin rash I had was due to trying to make the itch stop through scratching and rubbing. Two steps to determine if it is neurologic: 1. try to recall which came 1st, the rash or the itch. That can be difficult because a lot of times you will start to scratch or rub at the area unconsciously or even in your sleep before it comes to your conscious attention. But if you are certain you broke out in a rash before or simultaneous to the itching, it is probably not neuropathic. 2. Get a neuroconductive study, such as the PNMLT, to determine objectively if you have any delay in nerve conduction.
Scratching or rubbing an itchy area can cause secondary infection, so you might have both. Make sure you get the kind of culture that grows out for a significant period of time, and / or a punch biopsy of the area; because fungal infections can be slow growing and hence are often missed when a simple swab culture is done and your results come back in a few days. Also if you are irritating the skin due to scratching, STOP. You will get more relief with no injury by using topical menthol and / or topical capsaicin. A good source of menthol is Tiger Balm. I used to use Capsazin-HP (a capsaicin cream found in the arthritis section) as a topical form of capsaicin, but then I figured out there was sorbitol in it, which is a sugar and hence can promote yeast or fungal growth. So now I buy "Pure Cap" on Amazon which is just pure capsaicin in an oil base (vs. actual pure capsaicin crystals, which are VERY pricey)...No matter what form you use, for genital use and especially on broken skin, these products MUST be diluted in vaseline or another neutral base such as diaper rash ointment. Otherwise they will cause SERIOUS PAIN. your body acclimates to topical use over time so that you will have to dilute the product less. But start with a small container (such as an empty makeup jar) filled almost entirely with vaseline, and add just a tiny bit of capsaicin at a time, stir thoroughly, apply, wait a full minute, and then add more if the intensity is not great enough to stop the itch. You need to reach a balance between the "good burn" that stops itch and the "bad burn" that will make you dance around cursing the day you read this post :lol:
Also try organic, dye-free cotton underwear and organic cotton maxi pads; and if you get relief from that then you need an extended allergy panel which explores the various additives and dyes used in fabrics.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
elephants27
Posts: 22
Joined: Fri Feb 25, 2011 12:04 am
Location: Maryland

Re: Severe Itching

Post by elephants27 »

Thank you all for your posts, i don't think it is ls, its not in my vulva area, its around the groin where when you bend your legs, I thought i was allergic to the elastic in my underware but i am not. Her magesty. it was the itching that came first, and when it did it was really bad. i can feel it now sitting here, it is nerves that make me itch for some reason, and it is only in a certin spot. My other pn pain, comes out as pain! Does a PNMLT hurt? I had a emg along time ago for something else, and i had a truly bad reaction, i was still twiching for 2 days after the test. But this is truly driving me crazy!! I am waiting to hopefully get my own TENS unit, so hopefully that will help some. It works with the pain in my butt and in my pelvis. THnak you for all the recommendations, i will go see my doctor asap, and see if i can't get one of those done to make this horrible crap go away. I didn't think after 6 years of dealing with this, i would feel it a different way already with the same pain i am having with it. Are there any home remedies, or herbal rememdies i can do at hope to help other than the itch cream. Which i do vasaline everynight. And use it again, when it wakes me from my sleep. Thanks again!!
HerMajesty
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Location: North Las Vegas, Nevada

Re: Severe Itching

Post by HerMajesty »

I feel for you, IMO having had both itch and pain, I think the itch is worse, it just drives you nuts.
If it's neuropathic, benadryl and other itch creams will do virtually nothing. the capsaicin recipe I gave is probably the best immediate natural remedy for temporary relief. There is also an RX cream called Zonalon, which is a topical version of the antidepressant doxepin. For me it was wonderful for neuropathic itch but unusable, because I tend to absorb external meds internally and it caused me to sleep all day. But my dermatologist said that only a small percentage of people who use it topically have systemic effects, so it might work out well for you. Also changing my wardrobe helped a lot - neuropathic itch can be a form of allodynia, or discomfort with any kind of contact. I started wearing men's cotton boxers under skirts, or loose cotton PJ type pants (as soft on the outside as on the inside - men's Merona brand PJ pants from Target work great) with no underwear and a long blouse which makes them looks like slacks. The lack of clothing contact lessened the neuropathic itch on my skin to the point where I was not scratching and the rash cleared up.
The PNMLT was not particularly painful, just very humiliating, but I think I lost all my dignity a long time ago. It was a very quick test.
My concern is that you totally rule out infection and allergy as well. Have you for any reason had to be on long term and / or broad spectrum antibiotics? Due to my neuro condition, I was unable to empty my bladder fully...That problem is now in the past thanks to surgery, but while it was going on I got frequent bladder infections and had to take antibiotics regularly for about 2 years. As a result I killed off my "good bacteria" and wound up colonized with yeast and fungi, which also itch like mad. So depending on what treatments you have undergone, you might have some kind of infectious process too and need to rule that out.
You should also google "morphine itching" - I do not know a lot about it, but I know itch can be a morphine side effect. So there is really a lot to rule out.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
jimmy325
Posts: 1
Joined: Thu Nov 28, 2013 11:18 am

Re: Severe Itching

Post by jimmy325 »

Also if you are irritating the skin due to scratching, STOP. You will get more relief with no injury by using topical menthol and / or topical capsaicin. A good source of menthol is Tiger Balm.



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Last edited by jimmy325 on Mon Aug 18, 2014 7:06 am, edited 3 times in total.
elephants27
Posts: 22
Joined: Fri Feb 25, 2011 12:04 am
Location: Maryland

Re: Severe Itching

Post by elephants27 »

Thank you for all of your posts! so sorry it has taken me this long to get back to you. But i first discovered that i am allergic to dairy, whey and casin. That was casuing me to itch everywhere! And i know that one of you said stop itching, that is infact very hard to do! i am taking 25 mg of hydroxyzine, and i have now realized it is just not a food allergy since it is still happening, and now it is running down the backs of my legs. My doctor wants me to get another emg, i am not sure if i want to put myself though that torture again. I still have to wait another month until i can see the neurologist. to see what he thinks. but i will only put myself through this again, if there is something that they can do for it after the test. Has anyone else been in this position? I finally switched my insurance so therefore, i can finally see the doctor for this condition, i was getting tired of kaiser permanente telling me no. but i am still in the process of gettting all of the paperwork together to see him. THanks again for all you hel[p and your posts. This is just driving me crazy! it has been a year and a half just dealing with the itching, the pn pain has been here for 7 years, and nerve blocks do not work on me. feel better everyone!
Positivepoppy
Posts: 174
Joined: Mon Feb 24, 2014 2:49 am
Location: uk

Re: Severe Itching

Post by Positivepoppy »

Hi not sure if helpful or relevant but I find tramadol makes me itch when I take it for pain relief especially in the night. I find a wArm bath helps me?
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