PHN pain
Posted , 6 users are following.
I am 45 and was diagnosed with PHN. My biggest issue is feeling lung pain. At night I wake up and taking a deep breath is horrific. I am only six weeks into this and really starting to get depressed. I am on Gabapentin 400 mg 3x a day, lidocaine patches and hydrocdone as needed. They just added Nortriptyline as I saw a nurorologist yesterday. This is starting to effect my everyday life. Does anyone have any suggestions on dealing with the pain or meds that have worked for them. I do good to get 4 hours of sleep. So far nothing I have read is promising.
0 likes, 11 replies
LisaE1972 susan64188
Posted
Hi Susan this to be honest is going to be trial and error. For me heat helps me like laying in a hot bath while others say heat makes it worse. They prefer ice and I can't stand ice on me at all it makes me hurt worse lol. I have changed my wardrobe all together and wear no sports bras or regular bras it is the soft stretch bras. I no longer wear pants because the pressure of the pants on my waist for some reason drives pain in my intercostal nerves. I am most comfortable when I am laying down but I can't go through life that way lol. I am on year 11 now and it has been challenging and pain does become a way of life for you. The one thing I have to say is this has made me a more compassionate person for sure! As far as pain meds just be honest and keep the communication open with your Dr on what is working and not working until you find what helps.
susan64188 LisaE1972
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ruth57682 susan64188
Posted
This bra is very soft 90% cotton, 10%spandex. It fastens by hook and eye in front so you don't have to drag it around you. I still have pain with it on but mainly in the armpit area. I found it online. Can't wear it very long. My wardrobe consists of baggy hoodies and sweatshirts so I can go bra less .i am in the process of gradually increasing the Lyrica. It has helped with the deep shooting pains but not the raw feeling surface pain. I do use the 4% lidocaine for brief relief and before bed.
LisaE1972 susan64188
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When I get home I will look at the name of mine and see if I can find a link for you. This is the best one I have found yet for me. You know all about trying several until you get the right one haha.. I just can't stand this one to be honest but it is the lesser of the two evils ya know?
bobbie50554 LisaE1972
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ruth57682 susan64188
Posted
Susan, I can certainly relate to the lung pain. I had the shingles over and around the right breast and I guess the pain runs deep enough that it hurts to take deep breaths. That's is a difficult place for a lidocaine patch. I have gotten some relief from a 4% lidocaine branded cream that you can get without prescription at your drugstore. I also am on hydrocodone and pregablin. Actually the topical cream works the best and you can apply it 3 or 4 times a day. I have had this 3 months and yes, it is miserable. I can't wear a bra at all and even clothes touching my skin is painful. You have my sympathy
erin72929 susan64188
Posted
From your description, it sounds like you may have what I have heard described as intercostal neuralgia. As you take a deep breath, your rib cage expands, and the little joints (intercostals) scream in pain because of your PHN. Not sure I can offer much about specific site pain management, but in general, I required lots of nerve block meds, opioids, cannabinoids, anti-depressants, etc. All at the same time. Try to take it one day at a time, and get as much out of your health care providers as you can, like meditation classes, pain management classes, etc. With time, chronic pain causes terrible isolation. Having hospital classes to go to meant the world to me. I've become good friends with some people I met there, which also makes me feel better. Hope you get some relief soon!
bobbie50554 susan64188
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allegator susan64188
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ruth57682 allegator
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I am currently trying Lyrica 100 3x aday. So far it hasn't helped a bit. Does anyone know of a cream other than the Lidocaine. Seems like a lot of the pain comes from the skin being so dry and tight. Yes, it still stings to the touch but is worse when I move my arm. Actually the skin over the pain feels rough and tough. The rash hasn't completely faded yet but has turned into rough bumpy extremely sensitive skin. The area around the armpit is the worst. Is this anyone' s else experience. I have to go topless at home as clothes are torture. Forget about a bra! That truly is a torture device!
rusti1 susan64188
Posted
I would increase Vitamin C ... add lemon juice to water, eat more citrus and vitamin C enriched foods, and if you wish ask your doctor and take 500 mg Vitamin C supplements, one with wild rosehips I find works great. Have a more whole food, with healthy fats (like coconut oil and olive oil) diet as possible. Perhaps a few other basic vitamins like D and B as well. You are too young to be on all those medications imo! I don't know all your health but, I've been helped for years going without colds/flu/asthma and bronchitis that I was always susceptible and on medications for. I also had a mild case of shingles, but, nothing since. I say this only to emphasize that you can do more for your own health than you may realize. I'm 66 and on no medications at the present. I hope this helps.