July 6, 2015 at 3:19 pm #6259
I am into the fifth month of dealing with a severe herpes outbreak. Because the herpes virus was active in my body for nearly three weeks before I was diagnosed, it really took a firm hold. I had three cycles of acyclovir before the outbreaks were stopped and now taking a low maintenance dose. Fortunately, I am no longer having any outbreaks but am suffering with post herpetic neuralgia.
I am desperately seeking advice for my healing now. The neuralgia has left me weak and walking with difficulty. I fatigue easily and must rest throughout the day after simple housekeeping tasks. I rarely leave the house.
Unfortunately, even the most gentle massage that I had last week was disruptive and caused an angry flare-up of my sensitive, damaged nerves in my buttocks, hips, and legs running down to my little toes.
I was considering chiropractic treatments but fear they, too, might be too intrusive. But, this avenue of therapy might be beneficial in the long term.
Does anyone have advice for me? Has anyone had success with treatment for this continuing pain???
August 2, 2015 at 11:24 pm #6260
I am so sorry to hear about your challenges with neuralgia.
One thing I would focus on is inflammation and supplements that support the nerves. You might want to consider the supplement Lauicidin. It has been known to help with this condition. I would also be using very large dosages of Omega 3 oils (up to 5000mg-10,000mg/day)
If there is any structural misalignments in your lower back and pelvis, this could be impacting the neuralgia. I think a gentle chiropractor could be an excellent resource for you. There is a more energetic form of chiropractic called Network Spinal Analysis that could be beneficial to you.
Lastly, I would consider doing a cleanse. You could be harboring toxins in your body that are irritating the nerves in your pelvis. One of the companies I use for colon cleansing in Blessed Herbs.
If you would like some one on one time with me, just email me at firstname.lastname@example.org and we can set up a specific session for you to determine your unique triggers and how I can help.
Many blessings sent you you,
January 10, 2016 at 5:40 am #6827
Hi Giselle, I am new to the forum and hopefully by now your neuralgia has gotten better..?
Anyway, similarly to you it took a few weeks for me to be diagnosed, I didn’t get any blisters typical of Herpes, rather just really bad pain when I peed and it felt like there was a tampon that hadn’t been inserted properly. I had an STI test which came back clear, the doc thought it was a UTI so went on antibiotics. Clearly that didn’t help so I was back at the doctors. I’d done some googling and thought perhaps this was herpes? I really didn’t think it would be, and the doctor agreed but she took a swab from a TINY fissure and it came back positive for HSV-2. Unfortunately when my test results came back a few days after the swab I couldn’t get in to see my usual doctor, and the one I saw was hopeless. All she could do was say how sorry she was for me (which made me feel even worse!) and that it was too late to go on anti-vitals so didn’t prescribe anything – WTF! Needless to say I left feeling very upset. That night I did more googling and found that I had to get accyclovar pronto, and as it was then the weekend went to an emergency clinic and got a prescription – so all up it was about 10 days from first noticing the symptoms until I got treatment. I had also read later that antibiotics are not good if you’re having an outbreak so I’m sure that made things worse.
Anyway, my initial outbreak was hell. No pain or blisters. However, I had severe problems urinating – pain and just not being able to empty my bladder, felt bloated all the time. After a week or so I started feeling numbness in my buttocks and genital area. This spread down through my left thigh. And then later on it spread to the soles of my feet. It was the weirdest sensation, like walking on marbles. Thankfully the bladder stuff got better fairly quickly, but the numbness took about 5 weeks. I was totally freaked out, not knowing if it was going to be permanent. There isn’t much information online about it either, I spoke to my doctor and she hadn’t heard of it happening. However given how much I was freaking out she got me a referral to a neurologist. He did lots of tests and told me he’d seen it before, and all my reflexes etc were fine and that it would go away eventually. This was a huge relief! However he couldn’t give me any advice on how I might speed the healing process.
I’m a believer in alternative and holistic treatments, so I told my chiropractor about it and he did some specific work on my sacral spine. I also got acupuncture, and over the course of about 3 weeks it improved and eventually disappeared. I was taking Vitamin C and B, and also Zinc and Magnesium.
It’s now been 6 months since my diagnosis. I’ve been taking suppressive treatment but still getting outbreaks, but thankfully the numbness hasn’t returned. I stumbled across this forum (yay for Dr Kelly!) whilst looking for information on food triggers for outbreaks. I’ve downloaded the book and about to embark on changing my diet.
February 24, 2016 at 4:27 pm #7025
I have had the same issue. ALthough I haven’t been properly diagnosed with herpes because my swab and blood tests at 3 and 6 months have come back negative. The crazy thing is I have symptoms big time. And I do have reoccurring bumps on my genitals which suggest I have HSV. They are mini and look like bug bites or a small pin prick. I wasn’t sure what was happening to me because I have had Post Herpetic Neuralgia for about 15 months. I don’t have much of a break from the pain expect that it’s less intense in the morning but by the evening my whole vulva and inner thigh is burning. I can’t sit for long periods of time either and it seems to get worse if I am under stress.
15 months seems very long and I was wondering if anyone else had this issue? I was on Valtrex when the rash first appeared. But it did nothing. I have cleansed. I have done relaxation mediation, supplements like Lysine and Magnesium and Omegas. I went to an osteopath for pain management. Nothing is helping me and it’s chronic at this stage.
The doctors I have seen all dismiss my symptoms as herpes because of the negative test results and keep putting me on cortisone creams that do nothing. But I am convinced this is Post Herpetic Neuralgia due to HSV-2.
Any advice Dr Kelly and the ladies?
- This reply was modified 1 year, 11 months ago by West.
March 20, 2016 at 4:04 pm #7105
Try St John’s Wort Infused Olive Oil…it’s a muscle and nerve trauma oil that for some has been a miracle!
July 16, 2016 at 4:52 pm #7521
I am so sorry to hear that you have been suffering for 15 months. I hadn’t had a outbreak in 13 years but just experienced the worst one ever! Prior to my breakout I had Pneumonia and the Dr. put me on Steroid medicine along with giving me a steroid shot…I also had been more stressed then I had ever been in my life. I looked up steroids and this is a trigger for an outbreak, I think with that and the stress this is what’s caused my severe breakout with PHN for two months following. I am wondering if the Cortisone Creams could be prolonging your PHN and or making it worse? Sounds like you’re doing everything right, just a thought 🙂 Oh and also, I think sex could possibly trigger PHN, I’ve noticed where mine would be feeling better and then I would have sex and it would be almost like starting over. My nerve damage is in my right butt cheek, it burns and sometimes feels like little needles going in to the skin…never had a breakout there though, it was actually on the other butt cheek…lol! I highly advise Dr. Kelly’s book, it is a world of knowledge and will enlighten you on different methods of relief. Good luck…I hope you find comfort soon.
August 1, 2016 at 8:53 pm #7544
My concern is that these PHN sensations could be indicative of prodrome, and I should practice abstention. Since I constantly have this pain/discomfort ranging from a 1 to 6 on a 1/10 scale, this would be really sad news 🙁
Just got my diagnosis about a month ago but have reason to believe that I’ve had HSV 2 for at least 5 years. Never had an outbreak but suddenly, I had a single sore on my right perineum, near the vaginal opening. I’m now taking Valtrex 500mg for suppression as I am in a long term relationship with an uninfected person. Also using Oregano oil or a Lysine Salve in the area where the sore was.
For YEARS, I’ve been experiencing a shooting pain from the back of my thigh that goes all the way up to the spot where I had the sore. I’ve always been very active so I thought it was related to muscles being tight around my sacral nerve. Now I’m thinking this is some sort of neuralgia related to an OB. The pain shoots right up to mentioned area and I have a very subtle itch there a couple times a day. Also some sensitivity. But an outbreak never occurs.
Could this be because the medication is suppressing it? I’m so paranoid because I don’t want to infect my partner and I’m thinking maybe there is viral shedding going on instead. Anyone advice?
October 25, 2016 at 3:43 pm #7959
I just stumbled onto solarosa’s words back in January regarding her numbness as a result of an outburst. The same effect happened to me. I had tremendous swelling inability to urinate and subsequent numbness in my buttock, labia, back of th left leg and down to my toes. I’ve had both a lumbar MRI as well as a pelvic one. There is no noticeable nerve impingement. It has taken 4 weeks for me to get the majority of the felling back. I also have had a GP, gynecologist and neurologist claim that they have never seen this happen. It’s so frustrating. The main problem that I still have is a closing in of my vaginal opening – Vaginismus. I hardly have an opening right now. Would acupuncture or chiropractic help here?
February 8, 2017 at 9:48 am #8286
March 23, 2017 at 1:37 pm #8523
Hi Ladies, I am in my 5th month of post herpetic neuralgia. I have a burning vulva and buring butt. Its been everyday for 5 months. The only think that has helped me is Amitriptyline. Its a prescription. It doesn’t make it go away, but I dont feel it as much. I have had HSV for 25 years, always controlled either on anitivirals or not. Anyway, I turned 42 and started getting frequent outbreaks. Now at 46 constant neuralgia. Who would have guessed it could get work than frequent outbreaks. I am in a relationship with a non h man, so this has been very hard on our relationship. Anyway, just thought I would chime in. Mysery loves company.
September 6, 2017 at 1:52 am #9003
I’m new to the forum and was diagnosed with HSV2 about a month ago although the symptoms started in mid June. I’m experiencing terrible PHN and I’d like to know how you’re currently doing? I truly hope you’ve found relief. If so, please share how. My nerve pain started August 4th. I figured it was sciatica as it began as a shooting pain down my left leg all the way to my toes. I now experience burning sensations in my left buttock and upper thighs, like a terrible sunburn. My lower back aches and sometimes the burning and itchiness extends up to my left shoulder. I still feel like I have a UTI. It doesn’t burn when I urinate, just the rest of the time. I also feel like I have a yeast infection sometimes. I occasionally experience hot and cold sweats, swollen glands, and today I woke up feeling somewhat dizzy. I’m terrified this is affecting my brain. My doctors have been so short with me. My PCP didn’t believe that any of this was associated with herpes! She referred me to a urologist who confirmed PHN. But this is becoming too much, honestly. My legs feel weak sometimes. I’m only 34. I can’t accept that this is my new reality.
February 6, 2018 at 10:19 pm #9257
I’ve had h for 20 years, at 38 following birth of second child it’s become sooo bad. I have diarreah, lower Abdo pain, chest pain, discharge and burning lower back pain everyday. I’ve had every test done, water, swabs, bloods and nothing’s cone back. I think it’s the h. I get cold chills, swollen glands, neck and headaches, tinnitus. It’s like my body is fighting something constantly with no breaks. I’ve been to gynaecologist, Genito urinary, rheumatology, neurology, immunology, they say it is not caused by h and are getting very nasty saying it’s all in my mind. I now have hearing loss which I believe is nerve damage, none can tell me what’s caused it but tell me it’s not h. I haven’t been diagnosed with anything else only a positive swab test and blood test for h. So it makes sense doesn’t it? I think I have pelvic inflammatory disease caused by h, systemic h infection and herpes nerve damage.
Anyone else get similar symptoms?
February 16, 2018 at 5:17 pm #9265
Hi Ladies, I had the constant vaginal burning, butt feeling like sunburn, tailbone pain. I also had alot of other symptoms that you girls mention. I thought I had MS but I think alot of the symptoms except the vaginal and butt were anxiety. Anyway, please look into a pelvic floor therapist. I had a very tight pelic area, which took a few months on pt and I am much better. It’s ashame most doctors are unaware that this can happen. Check into it. I wish you all the best.
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