... no one understands! They don't believe you could possibly have this for the rest of your life and tell you you will be addicted to the medicine if you continue to take it. I have had this pain all over my body and people think I am a little nuts. It started around my waist at the two shingle sites and went into PHN after that. It affects my feet legs arms and now it has spread into my genital area . I was checked by my GYNO and was given a clean bill there. The burning pain makes me cry. I am taking 300 mg gabapentin 3 times a day. I am so happy to have found this site to be able to talk to others who understand.
Hi crockpot queen,
My heart goes out to you. Your family members need to read up on postherpetic neuralgia. If they were in your shoes, they would be screaming or crying most likely. I've the same sensations as you, but I never had shingles, just chik pox as an adult. But I don't think that's the reason for the stinging and burning sensations for me. I never had a rash like you describe.
Have you talked to your doc about taking more Gabapentin, or adding a pain med into the mix? Something like Norco?
Do you ever watch David Letterman's show? He had shingles and said it was THE worst pain he had ever had. Any chronic pain sufferer needs some TLC, and it sounds as if you are not getting that! Print out some info about your pain, hand it to family members. Educate them yourself and DON'T let them make you think you are crazy because you have chronic, horrible pain!
Best wishes to you CQ,
My friends would tell me about others who had "mild" shingles, who didn't suffer at all. It was like I made up all of the pain I experienced. My shingles started 12/02/2012 and although the rash and intense pain is gone, I've had the PHN. But it is getting better. I'm taking B12. Gabapentin made me sick, so I'm on over the counter meds. And... Ben Gay at night seems to work. My shingles covered my waistline and I've been not wearing underwear and big, big shirts around the house. Hope you get better. Yes, I understand.
Nothing sounds as bad to me as post herpetic shingles pain, (except perhaps tardive dyskinesia). It is an unrelenting pain that is terrible. Get some literature on it and try to educate those around you. I don't have that particular kind of pain, but my heart goes out to you. I know someone who has had it for the past 8 years or so and wishes every night that he won't wake up. He is 96 years old, but even so.
My shingles are just finishing to clear sores and fading on the skin. I am using lidocaine patches where I still get the fire of hot needles, it helps. I am also on gabapentine. Your dose can go up to 2400. Be sure you talk with your doc or the nurse to get a higher dose. Your dose is too low. It didn't work for me at that level either. Once it got to 1500 I had the pain disappear, neuralgia in the feet and hands gone. The patches helpful. Am far more comfortable. Four weeks in. Was weaning down the GABA and then it fired up again in places. So I know 1500 is magic for me. I really feel for you and hope the meds are adjusted and you get some relief. Stay in touch if you want to talk more, Karen
Starting in Oct 2011, I had horrific pain on the right side of my spine; radiating around to my sternum. Needless to say, I have been suffering. After months of everyday, all day pain... I had my gall bladder removed... though I really felt it was not the problem... 2 days later the pain returned with a vengeance. After many doctor appts, and many tests, scans, blood work... I was diagnosed with Shingles without the rash (post herpetic neuralgia. My pain lasted 14 months... was gone 2 months... and now is back. It is rather debilitating, and has been said to be worse than cancer pain... though I would not know that. I have been hospitalized for it... pain mgmt., which I had to come off of due to the GI problems it created. Most meds do not work. Have ended up using Lyrica with extra strength Tylenol to help me sleep. Icy hot has been a lifesaver and moist heat.
I can not believe the pain has returned; and yes you are right... until someone has felt this pain... they will never know. I am an avid supporter of telling people to get their Shingles vaccination because this is something they never want to encounter.
I am mostly over it after 11 years. It can go away. Make sure to expand this post, you need to! The trigger point was in a dermatone just below arm pit level. I would get pain attacks that felt like I was literally stabbed with a knife at the trigger point, then ripped down to the groin area across dermatomes. At its peak, I would get 100 of these attacks per day. I wanted to be put in an induced coma so many times. Even when it was occasional, I couldn't go out in public except for med appts and procedures, because people would think I was having a heart attack from screaming and grabbing the left side of my chest, so it was embarrassing. Bouts of attacks would wipe me out between them during a peak three years, so was basically bed ridden. I had chest sensitivity, but could wear loose clothing. I went through the gamete of drugs and therapies to find something that would help with the pain, which caused an untold number of side effects to add to the party.
I would beg to get steroid injections from my pain mgmt doc that did help as often as allowed by FDA guidelines, even though it took a huge needle to inject in my my chest in two locations. Gabapentin finally worked for me at 3600mg to eliminate the pain attacks. Gabapentin is nonlinear in dose-effect, so it works differently for every person. After the initial adjustment to gabapentin, I had swollen feet, vision changes, and a number of other side effects well worth the benefit. I had multiple pneumonias while on gabapentin. There is no way to say they're connected, but never had pneumonia before or after. One time the doc thought I was within hours of not making it. Even with the best available health insurance, my loss of income, the deductibles, and the cost for health care trips took us from a future to a life of debt. In the beginning, my gp referred me to a neurologist 150 long miles away who listened, then looked at my gait, tapped me on the knees and sent me on my way with a shrug and a prescription for lidocaine patches. On the way home, our engine went out and had my son drive 100 miles to pick us up, then hit a deer in that car and totaled it. That was the low point of my journey. I was on Mayo's waiting list for their neurology dep't, but at that time I don't think they had anything to offer for PHN other than pain management, so they weren't in any big hurry to get me looked at. I got a "do you still want to be on the waiting list" 18 months after the specialist referral. You just have to land on their doorstep to get something done, if you can make the trip. After all this whining, I was so blessed to have a great gp that didn't quit trying and got the right dosage of gabapentin and got me off all the other unnecessary stuff. I no longer have pain attacks, but do have chronic pain. After pain attacks, I can do chronic pain. I am off all meds and am dealing with pain management through nutrition, exercise and praying. You would think that your family and friends would understand seeing some of this. PHN for some is rated at more painful than a heart attack, kidney stones, or child birth. Now multiply. I often thought my circle did not understand. I would often say "you have no idea what I am going through, do you?". Actually, they did. They just didn't have a way to take it away. I now realize they were hurting more than me. If my son or daughter were the one going through this, I would cry way more (not in front of them) than what the pain made me cry. Initially, I got more intensive outward family sympathy, but psychologically that naturally changes after time to acceptance, but they are still tore up inside. I still felt I was getting critiques, minimizing statements, and "If you would only" from those that love me, but there is no such thing as a personal illness. It's a family thing. I know very little, but forums like this are essential. PHN is not a rest our life death sentence. I am proof of that.
Crockpot queen I hear ya! I'm only 25 my family tries to be supportive but really just doesn't get it my friends also try but they'll never understand why I have to keep bailing on plans.
I caught a terrible flu in Jan 2015 then allergic reaction to amoxicillin no Idea why was not feeling well for a couple weeks after I healed from flu they almost removed my gallbladder I had a hida scan endoscopy mri ultrasound CT scan a few er visits xrays nobody had any idea why I had these terrible bouts of pain that'd make me sweat dizzy and faint then all of a sudden a few months later in March I broke out into the rash on my stomach! All those months that went by the shingles was destroying my nerves from the inside so i didn't get the valtrex in time bcuz we had no idea tried everything topamax tramadol prednisone lyrica amitriptyline lidocaine capsaicin Percocet even fentanyl one night in the er barely worked I forget the other meds but u get it it's been a NIGHTMARE I legit cry alone in the bathroom when the pain comes on which is 24/7 as u can imagine I hide in bathrooms or my bedroom quite a bit I'm always holding my side medications or not I feel like my chest is being crushed by an elephant and a rusty screw driver is stabbing me thru the ribs in and out to my back over and over again or a knife slicing me or a bullet being shot repeatedly and my skin on the surface has become numb If u stabbed me with a tack I wouldn't feel it but the inside feels like a gremlin is ripping my body apart trying to get out and I'm supposed to get a job as my parents say and live my life normally they are both very intelligent educated people but understand very little about this condition until my doctor brought it to their attention. Regardless they will never understand I can't believe pain could be this terrible every day I feel like I will never get my normal life back and move forward and get a job car house and career I feel so depressed only thing that works it's Percocet regimen with capsaicin lidocaine and lyrica but it doesn't even work that great but it makes life semi tolerable I wish I could get my fam to understand what I'm going thru everyday they only feel bad when I'm dripping w sweat and my blood pressure spikes to 145 over 90 when I normally have low bp and my face becomes pins and needles and I'm about to faint then they are concerned but I still feel a constant stabbing gnawing pain constantly
Sorry had to share my own story so you'd know there are people like u out there even tho it's a small community we are out there and we are struggling and praying for a cure or new medications to be discovered but one day I know we'll get there!!! Personally gabapentin didn't do anything for me I switched to lyrica so far side effects are very little to none
I found this site after searching for advice on how to handle family members who show very little sympathy for my shingles & post herpatic neuralgia. In speaking with a close family member, it was suggested that I throw away the gabapentins, get off my lazy butt & exercise. I don't know if I want to be mad , hurt or both. I'm in agony almost every day & just because one might see me up & about one day doesn't mean I'm cured or faking it. Just wanted to get this off my mind & perhaps get a response from anyone who has also suffered from the indignity of ignorant family & friends!
Search for questions
Still looking for answers? Try searching for what you seek or ask your own question.
Trigeminal Neuralgia - anyone had problems with family & friends understanding the depth of our pain
Posted 8 May 2011 • 8 answers
Posted 1 Jul 2011 • 4 answers
Posted 20 Nov 2014 • 2 answers
Posted 7 Oct 2015 • 3 answers
Postherpetic Neuralgia - Are there any local support groups for PHN? I know it depends on where you?
Posted 9 Oct 2015 • 2 answers