I am new to this group, joined because I have been suffering from the above condition since September 2020. It started after my shingles rash cleared up, then the intense relentless pain started, day after day... unbearable pain, like electric shocks, burning, and pounding under my rib cage against the inside of my ribs. Like members that have previously posted on here, nothing seemed to help them. Different medications tried, the doctors seemed fed up with my husband keep ringing up as he just didn't know what to do with me. The only relief was from ice packs, which was a constant ongoing thing. I could not bear clothes to touch the right hand side of my upper body (waist upwards), so just a loose vest and baggy pants. I was eventually put on to gabapentin starting low dose gradually up to 1800mg a day over 3 doses 600mg each day. This did gradually start to get the pain under control eventually, after about 2 months. The main relief for me, which has helped so much over the last couple or more months is a product called "DEEP FREEZE" pain relief ice cold gel. Initially I was applying it to the affected area maybe 4 or 5 times a day and at night... gradually I was able to reduce it to a couple of times a day, and at bedtime, and not always then after a few weeks. With the medication slowly taking effect as well... things have been so much better. The condition is still there, and at times very uncomfortable. I can now wear normal clothes, jeans etc but still resort to comfy fitting ones indoors. I have to ring my doctors in January to give an update on how things are going. The questions that I want to ask your members are:
A) does this condition ever clear up completely?
B) If the gabapentin is reduced (gradually) will the condition come back?
I make sure I moisturize the affected areas a couple of times a day to keep the skin supple... and the ice gel as mentioned above. I thought some of your members would be able to answer the questions for me, being sufferers of the PHN. Thank you for welcoming me to your group.
Post herpetic neuralgia, help!!?
Question posted by band of hell on 9 Dec 2020
Last updated on 10 December 2020
Answers
Statistics show that very few people with PHN have it for more than a few years, and you’ve had it for a very short time. That being said, I have had it for 14 years and in the same area of the body as you. I never had very good luck with gabapentin, so I can’t speak to that. I am on pregabalin (Lyrica) and it is not doing much. A few years back I was on OxyContin and morphine, but I got a spinal cord stimulator which does help at the worst times. I rely on Lidoderm patches to enable clothes wearing and I have been using CBD oil which will take the edge off. I don’t want to be a downer, but I have tried every medication and procedure known as a possible solution over the years, including acupuncture, intercostal blocks and the Quetenza patch to no avail. We share a nasty condition which few people appreciate. Hopefully the new shingles vaccine will put a dent in the PHN. You have not had it very long so I think you will probably outgrow it.
Thank you Jim, I read with interest your answer. I found it very helpful in as much as you are a long term sufferer and know all the pitfalls and aspects of this horrible condition. You have suffered a long time, for which you have so much sympathy from me. As you rightly say, it is a horrible condition which very few people appreciate or know of. Myself included, with the shingles healing up... it was literally like a lightening bolt hitting my body, OUCH!!! it was pure agony, and I could not think what was happening to me. Aw with all of us PHN sufferers. I have not had it for long in the scheme of things, and I tend to think in terms of before and after. I could not have the shingles vaccine due to meds that I was already on. You have had so many different meds and other options, and still you are not free of it Jim. It must be absolutely awful for you.
Normal clothes have only fairly recently been tolerated, but often by the time I get home, it is a different matter, haha!! I thank you so much for your reply and information. I really hope that one day you will think... "oh that has been a lot better today", and improve thereafter. Wishing you well, and a happy Christmas.
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