Weird PHN symptoms

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I first got the shingles rash early February of this year, the rash went away mid March but I am experiencing pins and needles and mild burning sensation on the area where the rash was located left buttocks lower back and also on my legs, feet, upper back and arms. These sensations comes and goes. When I walk or do something physical it goes away, weird thing is when I sleep I don’t have any of these sensations. I did take a ten day course of Cipro in March so I don’t know if my neuropathy is shingles related or Cipro related. Any feedback would be much appreciated.  I am having PHN symptoms that come and go in different parts of the body that I did not have the rash.

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  • Posted

    Hi Matt,

    Shingles is limited to certain areas of the skin called dermatomes.  Each dermatome is served by one sensory nerve coming off the spinal cord.  When people develop PHN, it is only in that dermatome, or those dermatomes, affected during the active shingles episode.  To a minor degree, the sensory nerves from one dermatome might overlap into an adjacent dermatome, maybe just an inch or so at most.  So odd sensations far away from the affected dermatome are due to another cause.  A neurologist should be able to help with diagnosis of that condition. 

    In the meantime, I have found that Aspercreme or triamcinolone acetonide cream helps a lot with itching and other odd sensations.  I've also seen patients with neuropathy from other causes get good relief with Aspercreme [and the TA cream mentioned above would probably help them too, but my work with them was before I discovered it]. 

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  • Posted

    I have an acquaintance who gets recurring shingles/pain around her buttock. She takes a Valtrex daily and all the recurring symptoms stopped. You should study on the net so you will know what meds are "protocol" in the management of PHN. Don't let them give you steroids, it doesn't work or help you at this point. The literature doesn't support it.

    OK, meds for PHN pain....#1 Lyrica or gabapentin, #2 amytriptiline or nortriptyline, #3 an opioid for severe pain if needed #4 topical like lidocaine gel/cream 4% or aspercreme.....some people try capcaisin topical but it hurts at first and need to apply 4X a day. See why it's not popular? #5 specific anti-depressants like Effexor XL or Cymbalta......there is a mild opioid called tramadol that some docs like, but it's contra- indicated with these depression meds. You aren't taking it because you're depressed, BTW. It's just these have been studied extensively and found to help PHN pain. Magnesium enhances the effectiveness of Effexor XL and Cymbalta. Good to take at night for restless legs. Keeps you regular, too. Also helpful for nerve healing and protection is Alphalipoic Acid. My Cleveland Clinic neurologist told me to take it. Take 400 to 600mg daily on an empty stomach. Tumeric is very good for PHN pain....an anti-inflammatory and antioxidant. If you don't have a pain specialist, you may consider getting one. I guess your General Practitioner could prescribe these meds for you. The Effexor XL will take 2 to 3 weeks to be fully working. The Alphalipoic Acid takes 2 months. You should be taking a good B complex, too, as well as fish oil. This Omega 3 fatty acid is so good for so many things. It is equipotent with 800mg ibuprofen. I get my fish oil at Costco. 1400mg. But it's like 4 pills. I keep mine in the freezer so I don't get fish burps. These supplements don't work over night. You need to give it all 2 or 3 months and be patient. But you still can start the nortriptyline, Effexor XL, gabapentin or lyrica, and magnesium, and the topical meds right away. If any of the meds are expensive for you, most pharmaceutical companies have a patient assistance program you must quality for to get free meds.

    Of course you know there is accupuncture (some people like). I think you have too big an area covering too many dermatomes to be a candidate for an epidural injection. Latest literature doesn't support it. Didn't work for me.

    Can't think now of anything else to share. You'll be hearing from the "opioids are Satan incarnate" and "drug crisis in America" crew shortly. You have to take what you need and feel comfortable with. I have tried every treatment except a spinal cord stimulator. All I can do is push thru and take an opiod, lyrica, nortriptyline and Effexor XL.

    In which state do you live?

    Hope I have helped you a little. Research PHN on the web. The more knowledge you gain, the more empowered and confident you become. Take care now.

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    • Posted

      Bonnie 

      Thanks for all the useful information. The research I have done says PHN is only on the site where the rash was. I do have PHN there but also pins and needles and mild burning on my legs and upper back, where I did not have the rash. I am not sure if this is shingles related. 

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    • Posted

      I was diagnosed with shingles by my GP back in early February. I have not been back to see him. I have never had these neuropathy issues prior to having shingles. I am only 43 years old and pretty healthy before this. Have been under alot of stress before my shingles outbreak from my job.  I was wondering if I should wait this out and see if it goes away or make an appointment. The pain is pretty mild more discomfort and worry more than anything else. I did not know shingles could cause all of these weird sensations 
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    • Posted

      Of course waiting to see a doc is up to you. Having said that, what is very concerning for me is that you say you had the shingle on your left buttock but feeling the classic PHN pain down your leg, feet, upper back and arms. That is not normal even after shingles I think. I wouldn't wait and would see a neurologist specifically. Oh boy, I just read an article that I am going to attach for you to read. I think you may have developed your neuropathy from your Cipro. I am so sorry. I would start with this article and then read more so when you see a doc you know what's going on. As the article says, alot of docs are unfamiliar with this particular side effect from Cipro and its class of antibiotics. https://fqresearch.org/neuropathies

      Hope the info helps. Again, I'm sorry. This sucks.

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