so the Drs say I have Post Herpetic Neuralgia they say from shingles. I never had the outbreak but I suffer from horrible left sided burning chest pain 24/7 deep inside around the the breast area and it has affected my life for the past 2 1/2 yrs, only thing I remember was about six little blister in the center of my chest and paid it no mind at all thought it was just a lil rash... I cant sleep and nothing relieves the pain... I have tried all meds, Lyrica, gabapentin topomax, nortriptyline, the list goes on and on... I tried and have had intercostal nerve blocks and nothing has helped me... NOTHING.. Please if anyone has had this could you please let me know as I am so desperate for relief and for sleep I have several posts on this but I keep trying hoping someone knows about what Im feeling... shine
7 Jul 2012
The pain you have had certainly qualifies as chronic pain, for whatever reason. I believe you need a referral to a pain management doctor, preferably an anaesthesiologist. There is a myriad of reasons people see PM docs, and to me, 2 1/2 years of pain and I'd be a basket case. For that matter, I already am... long story. PM docs are about the only docs left willing to take care of chronic pain these days. I go to one for a lot of reasons. Has you PCP or neurologist tried you on non-narcotic pain relievers? If not, its time has come. If you've been treated with non-narcotics and they haven't helped with the intense pain you've described, unless you feel strongly about narcotics and don't want to use them, I have no other suggestions
If you are not against medical management of your pain with narcotic pain meds and whatever the doc wants to try to alleviate at least some of you pain, I wouldh recommended a referral to PM from your PCP. Sounds like you have had enough pain for a lifetime, so get an appointment to discuss what the treatment plan would be for your pain, then you have options, which is a whole lot better than no options except to suffer. There is help out there, find out what your options are. You can make an informed decision regarding your health care.
I wish you nothing but pain relief. My pm doc made my life worth living.
7 Jul 2012
Before I post my response, I wanted to mention "amiitriptyline" or elavil because after a shingles outbreak... the nerves are really sensitive and this med has been known to soothe or calm the nerves. I am taking this med for other nerve related issues.
This is what I found for you. Plus those little blisters could have caused this thing to go haywire in your body. The part below in "quotes" is what I have found for you that might be helpful:
If you have pain that persists longer than a month after your shingles rash heals, your doctor may diagnose postherpetic neuralgia (PHN), the most common complication of shingles. PHN can cause pain for months or years. It affects 10 to 15 out of 100 people who experience shingles.3 Treatment to reduce the pain of postherpetic neuralgia includes:
Antidepressant medicines, such as a tricyclic antidepressant (for example amitriptyline).
Topical anesthetics that include benzocaine, which are available in over-the-counter forms that you can apply directly to the skin for pain relief. Kidocaine patches, such as Lidoderm, are available only by prescription.
Anticonvulsant medicines, such as gabapentin or pregabalin.
Opioids, such as codeine.
Topical creams containing capsaicin may provide some relief from pain. There is also a high-dose skin patch available by prescription (Qutenza) for postherpetic neuralgia. It should be noted that Capsaicin may irritate or burn the skin of some people, and it should be used with caution.
Treatment if the condition gets worse
In some cases, shingles causes long-term complications. Treatment depends on the specific complication.
Postherpetic neuralgia (PHN) is persistent pain that lasts MONTHS OR EVEN YEARS after the shingles rash heals. Certain medicines, such as anticonvulsants, antidepressants, and opioids, can relieve pain. Most cases of PHN resolve within a year but not always... "
I hope this helps you some and you can pick out what hasn't been tried for you to get you some sort of relief. I know this is difficult and I am truly sorry to hear that you have been long-suffering in this ordeal.
8 Jul 2012
Yes, shingles, especially the herpetic complication is one of the most painful conditions on this planet. That's what people say who have suffered from other very painful conditions.
This site doesn't allow me to go back over all the responses, but I think that I recall that you haven't been given any narcotics!! If so, you definately need to find another doctor.
A low level opiate patch that was given to a friend of mine is called Butrans patch which is just new out in the last year or so. But it sounds like you could use the stronger narcotic pills. BTW, it didn't help him because he is 96 years old. As you get older, it is far harder to treat, but you being in your 50s, something should relieve your pain.
Also the doctors gave my friend some kind of synthetic marijuana by pill. Maybe that's something that could help you, but don't smoke it. It is especially toxic that way.
But really, get another pain management doctor to treat you, which can be difficult to get into with the long wait and you most likely will need a referral letter from your doctor. Or at least find a different doctor who is a neurologist. And try to get into a major facility, like a major university. In those environments, the doctors aren't so nervous about giving pain medications.
Good luck to you. You deserve to have that terrible pain relieved.
8 Jul 2012
Since you say that you have no more money to pay for medical expenses, have you looked into Medicaid? It doesn't matter how much a spouse has. You can get it I believe if you have only $2,000 in assets to your name. Do you have anyone you could trust to give your money and assets to, to qualify for it?
It would seem to be worth being able to get medical care. Otherwise unfortunately your question is pretty meaningless to get help about.
11 Jul 2012
Hi Sunshine, I am highlighting your question which is a bit hidden below.
"so from what I am hearing is that this pain I am having could be P.H.N. from shingles even though all I can remember is six little blisters on my chest over 2 yrs ago... I wish someone could describe what their pain feels like for those of you who have post herpetic neuralgia... so I can compare it to what I feel .. "
Others, she can use your experiences with this very painful condition.
Sunshine, you might try to go the topic "Shingles" to learn more from those that have suffered from it.
Yes, that's exactly what happened to my friend. A few small blisters on the side of his torso. That is what you are suffering from. He has suffered from it for the last 6 years and at 96 years old, says he prays to die every night so that he doesn't have to suffer with it.
I hope that you get more answers to your question.
15 Jul 2012
Sunshine, After reading all of the replies the only thing you haven't mentioned is a neurostimulator implant, this is done through pain management. They hook you up to a small electrical stimulator that zaps the electrical impulses as the travel down your spine and stop them before they reach your nerve damage. They try a test on you before they do the actual implant. You really need to talk to a PM doctor for all the details.I went through all the testing in 2010 an was ready to do it until they told me I had to shut it off while I was driving... this didn't work for me. The whole idea of going through with it, was to help me to continue working. I drive a school bus, can't use narcotic pain meds while I'm working and couldn't use the stimulator.
The other thing you can try is a TENS unit, this is similar to the implant, you wear it and control the intensity of the electrical impulse, it's kinda creepy feeling but, it might help you. I have had issues with some of these things because of the location of my nerve damage.There is no cure for PHN but, there is pain control, I choose hydrocodone when I'm not working, it helps, and I still take gabapentin until I start the Horizant.
16 Sep 2012
Hi... Same thing here. I'm a 69 yr old male with the same problem for over a year 1/2. Have done everything you mentioned including an intercostal nerve block last week that did nothing except to make me sky high for 2 hours after the procedure. The PM doctor said no guarantee and it may take more than one try. My co-pay was only $88, so I will try it once again. I have been on 10/500 hydrocodone 120 per month, 7.5/325 Percocet 120 per month and 600 mg Gaberpentin 5 per day and as long as I stay with a good schedule this has helped 75% but I wanted to get off of the pills ,so I tried the nerve block to no avail so it looks like I will be with the pills until something better comes along. Also the weather change has a definate affect onthe level of pain on me. The PM doc said there is another procedure if after the 2nd nerve block fails that he will discuss with me. I believe it is a type of nerve burn.
Just like you, this pain is so intense and irritating to me, that I will try anything affordable. I think your major problem is having a doctor that understands your pain and will do what it takes and forget about the narcotic bullshit... I hope that I have been some help as I also know what this pain is doing to us... Herb--- email@example.com
12 Feb 2013
Hi Sunshine1109 just to start with im not the best person at explaining things but ill try my very best to help you,
well at 16yrs of age i got shingles and all i had was 3 little blisters over my heart on my chest and 3 on my back in the same sort of area of my chest but for 2 1/2 yrs i spent it in bed as i could barely walk anywhere without getting in pain and when it was bad i would get shooting pains thru my chest and back and at times i just felt like giving up and i know your based in the US but here in the UK i went to hospital called St Thomas's Imput and for 4wks i stayed in the hosiptol with 10 other patients and basically what the hospital did was teach all of us how to cope with pain better because most of us think about just popping some pills to get rid of the pain but that can be bad as i became dependent on them and when i had pain i needed them and after attending the hospital i realised i was suffering from panic attacks and that was making the pain worse and my whole life was surounded by my pills and saying to myself i cant do this i cant do that and as the yrs have gone by i realised how much my mind played a big part in my PHN illness and 11yrs later i still suffer with the pain but i dont allow it to controll me i control it well the best i can as i do have bad days still and sometimes slip back into olds ways of how i used to think but all im saying is the pyhcological part of having this illness can make things worse than what they are and from my experience alot of doctors just send you off for test and pop you with a load of drugs and long term its not a good thing and i was the same as you with trying all sorts of different drugs but didnt really seem to help alot but one thing that did help was a numbing patch called Versatis 5% (Lidocaine) and the patch dont make you completely numb but it takes the edge off with the pain.
19 Feb 2013
I can feel your pain. For the last three months, it's been either shingles or post neuralgia. However, I started taking B-12 supplements about a month ago and the neuralgia is kind of going away. By the end of the day, I have the pulling sensation, but the B-12 seems to be helping.
19 Aug 2015
By now, I pray you have prevailed over your PHN, and it certainly sounds as if you had it or, perhaps, still have it. Your post touched my heart. I wish I could be the bearer of good news, but my husband has suffered from PHN for 17 years. The pain is exactly like you describe yours. He was stricken with Shingles in March, 1998. The circumstances, perhaps, are inconsequential, but he was misdiagnosed as having pleurisy because of the stabbing pain in the right side of his chest and the right side of his back--from sternum to back bone. About two days after the diagnosis, he broke out in blisters in a 6-inch swath in the same area of his body. The blisters swept across one side of his chest and back. The shipboard doctor was not available, and the nurse didn't give him the antiviral that, most likely, would have prevented PHN.
By the time the doctor returned, it was too late for the antiviral. Since then, in the early years, he has taken all the meds. you mention, has had the inter-costal injections, nerve blocks, has worn a TENS unit, etc. The only thing he hasn't tried is a spinal implant. Here is the only thing that helps him to get some relief at night: Marinol (Dranabinol), a synthetic marijuana with a stiff drink. He doesn't get high, but he'll finally smile and tell me that, instead of pain in the affected area, he feels a "glow." Unfortunately, you'll need to find an understanding doctor to prescribe the Marinol, and they're not always around. He has seen about four different pain management guys without success. Sorry Guys. May you not suffer as long as my husband.
12 Nov 2015
My 91 year old Mother has this condition and we are limited in the medication we can try for it because of the host of other medication she takes. What does work - particularly at night - is a fan ideally aimed towards her left side where the pain tends to be. It definitely helps and allows her to get some sleep. Better for her and cheaper than yet more medication too. Hope this helps someone out there.
15 days ago
Dear Sunshine, I just want to suggest that you might want to talk with a well-informed dermatologist regarding your physicians' suggestions that your six little blisters in the CENTER of your chest were "post-herpetic". I had about 7 or 8 of those in the same location. I had never had shingles. After examining them, the dermatologist informed me that herpetic/post-shingles outbreaks DO NOT occur medially (in the center-chest location), but to the right or left (at least an inch or two? Or more? I can't recall, now) of the chest-center. It seems that the nerves which harbor the virus are not located at the midline of the chest, if I recall correctly. My "herpetic-like blisters" were caused by baby spider bites and resulted in severe symptoms, including deep pain that migrated from my stomach/heart area to my gall bladder, then liver and the right side of the pancreas.
As the apparent inflammation of the pancreas moved to its left side, I experienced pancreatitis. Exceptionally painful. A dietary that was appropriate to pancreatic inflammation eventually led to remission. Your personal history may not coincide with this, but I would certainly question the initiating cause of your outbreak of blisters by consulting with an experienced dermatologist; this is simply because an uncertain original diagnosis can lead to a cascade of understandably misleading assumptions about your health status among your subsequent physicians who are attempting to help you. If you should come back to this site, I wish you returning good health and relief from your symptoms, however caused initially. If you do decide to talk to a dermatologist, please feel free to copy this note to take with you to your appointment. Maybe it will help.
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