i had shingles 7 weeks ago. I never got the blisters, just the rash. It started on my back and spread around my right side into Mtn armpit (the most painful) and all over my right breast. Seems like the pain is getting worse every day. Can't stand wearing clothes on top. I take pain pills. The hydrocodone/acetaminophen 5-325. Doesn't even touch it. Tried the lidocaine patches but after a few days it burned. Anyway they don't cover enough. I just started on Lyrica 25mg 3 times a day. Maybe I could increase that? Will check with doc. Anyway, any more suggestions would be appreciated. I have never been so miserable. Can't leave home cause wearing clothes hurts too much. I still have the red rash also. Will this ever end? Do you think the Tramadol might work better with the Lyrica? Also, I tried the Capasaicin once and it burned terribly. Should I try that again and suffer thru the initial burn? The only relief has been cold cloths. Anyone had relief from topical creams?
There is a branded 4% topical lidocaine creame that I use with good results. I agree that the patches are not good. I got no help from Lyrica, but Gabapentin 600 mg every 3 hours does do some good. You just have to do something to keep yourself awake.
I wish I could tell you it gets better. I have had this 11 years now and it has been the most painful experience of my life. I think it is different for every person to be honest. I tried all the lyrica and nerve medication. I finally had the spinal cord stimulator implant put in. My shingles was like yours and resulted in intercostal neuralgia which is nerve damage in the ribcage. I would go back to your doctor and let them know that what you are doing is not working sooner than later. I am sorry you are struggling with this as well.
Interesting that you mentioned inter coastal neuralgia. I had never heard of that term but I have complained to everyone that it even hurts to take deep breaths which I used to do to relax before going to sleep. Yes, the hardest thing to deal with is not knowing if it will ever go away.
yes, I tried that topical creame. It was Gold Bond and it helped but not more that 30 minutes or so. My doctor just ordered a topical creame from a compounding pharmacy in Nebraska . Will let you know if it works and if so what's in it.
Wearing a bra is like a medieval torture device all day!!! I only wear the soft stretch bra type and not sports bra they are to tight. I can't wear pants because they put to much pressure in the waist area that causes pain as well. LIFE CHANGING.
Maybe if I get a soft stretch bra several sizes too big, but right now I can't even stand the thought of a bra so if I go out briefly it will be in sloppy hoodies with no bra. The worst pain of all is the armpit so I try to sleep with a wadded up wash cloth in that area!
Yes my pain is from under my arm pit all through my ribcage and into my groin. You may have to eventually go to pain management if it does not go away. I had to go through nerve block injections and all kind of treatments to get to the spinal cord stimulator.
Does the spinal cord stimulator work?
It does help for sure it saved my life! Pain meds alone doesn't help but the spinal cord stimulator alone doesn't do it either. It takes the combination of both and very limited activity. Which sucks because I used to go to the gym everyday and run 5 miles a day.
Thanks for the great information. I am still holding out the wish that this doesn't go on that long. Definitely would be a life change as it is for me now.I am 83 and was still hiking and biking and climbing mountains until I had my knee replaced a year ago which actually worked out great and I was excersizing till this bombshell hit. I also had the shingles shot 4 years ago. Obviously didn't work even enough to given me a mild case!
I hope and pray for you it doesn't go on this long either. I was in my 30's when it hit me so I have changed a lot to accommodate this condition. Hopefully the medication will help you soon!
Dear Ruth,
I am so sorry you are having so much pain. I believe i truely understand how you feel. I am on gabepentin, but have heard that Lyrica is perhaps more effective. I have read and have found that Tramadol works well with Lyrica/Gabepentin. I personally find that acetaminophen with Tramadol is also helpful. I use lidoderm to calm down fiery episodes. I found I cannopt use it everyday, so if it irritates my skin I wait a few days before using it again. I also found that pressure relieves pain somewhat. I purchased a back brace, actually several, to put pressure around my abdomen. I even use one around my breasts instead of a bra.
I found capsation too hot too, but occasionally I use a menthol muscle rub to distract the burning.
I intend to see a neurologist (again) to talk about medical marijuana.
Did not find acupuncture helpful-the opposite.
When you are able, I would recomment a physical therapist so that you can begin exercise slowly. It may get worse before it gets better.
I hope you have support at home. Have hope. It does get better but it takes a long time.
All the best.
Gaida
Ruth. I have suffered Post Herpetic Neuralgia now for 18 months and have found a very effective topical mixture that relieves the intense pain associated with this complaint.
Initially, I was useing Ibuprofen tablets in conjunction, but after a couple of months I found the mixture was adequate for pain control.
The mixture is 250grams of Invite Vitamin E Cream, two 5gram tubes of Acyclovir Cream(Cold Sore Cream), and 65grams of Dencorub Heat Gel.
Mix thoroughly, and apply sparingly to the affected area, as required for pain relief.
I was applying this mixture every couple of hours initially, but now I find twice daily treatment adequate for pain control.
This mixture is not a drug, and it eliminates the need for excessive analgesics that can cáuse harmful long term affects.
Best of luck in your treatment.
Regards, Ray.
Thank you. I will try most anything. Where do you find these ingredients and do you need a prescription for any of them ? Also this would make quite a bit so how do you store it and how long can you keep it fresh? I hate taking more pills so if I can find everything I would try it. Would a natural food store have these?
Ruth. Thank you for responding.
These ingredients are available in Australia from discount chemists, without prescription.
I am afraid this is a long term problem, so the quantity is needed. It can be stored for long periods, without deterioration.
The cost in Australia is about $16 for the Invite Vitamin E Cream, $7 each tube for the Acyclovie Cream, and $6 for 100grams of Dencorub Heat Gel, so it not an expensive treatment over the 2 to 4 month time period, depending on frequency of use.
I am sure you will find this treatment very beneficial
Regards Ray.
Ray, thank you again, but I am in the US. I could check with a compounding pharmacy . Although they probably require a prescription. I will check it out. So far I have found nothing topical that works
Thank you, Ruth
Lyrica is a nerve block and it functions differently than pain meds. I take both. That is also a low dose of Lyrica from what I have gleaned around my pain clinic. I take 400 mg per day in four doses, as well as narcotic pain meds, and now a synthetic cannabinoid. You may have to try various combinations of things to achieve some degree of function. I have learned that everyone has pain, but pain + negative thoughts = suffering. So focusing on "will this ever end" may actually increase your pain. Take it one day at a time. See if there is a mindfulness class at your hospital to help you cope mentally with this. It may take a long time to get some relief. It is more than a year now for me. But this is the best I have felt in a long long time, now. Don't give up!
Thank you. I will talk to my doc about increasing the Lyrica. Also will take your advice and try to develop a more positive attitude. It's not easy! I hate taking pain meds but am starting again on the hydrocodone/acetaminophen 5-325. Your advice to try combinations is good.
Hi Ruth...
So sorry to hear of your pain. I had it 12 months ago and nothing anyone said or did or suggested was a cure; now, however, it's eased so much. I can only encourage you to be patient, to tolerate, and to keep on with those cold presses, if that's what helps. Calomine lotion worked for me; internally, I took Llysine from a health store (it's a herbal treatment for coldsores / exczema, but worked well for the clearing up of the virus inside), and chlorophyll, the green liquid. I used cold packs and the calomine, I'm fortunate that I don't work and would practically go into meltdown when I would read of people having to suffer thru normal activities. But honestly, I wouldn't waste time, money, and frustration going thru all the suggestions everyone makes, because from what I can see there's no cure, just time and giving the body health from the inside, and letting it take it's course...