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Totally Baffled~ Shingle/Phn
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hummingbirdm posted:
I'm not new to pain but there is Pain! I've had back issues & migraines. Now I've been diagonosed with shingles/phn on my right hip side and I can't believe this can be so debilitaing. living with this chronic pain has got me to about the end of my rope, It's been almost a year, the dr even sent me to an Neuroligist but she didn't offer anything new to try, I was disappointed after waiting 2mths for appointment. There is not one person who I can even talk to that has this and I feel so alone. It really affects every aspect of my life, emotionally, physically, relationships.
Like alot of you say most people don't understand pain muchless pain they can't see. Has anyone experienced this constant burning and electrical shock feeling? I do take Gabapentin, Acyclovir, Elivil & have tried numerous skin creams, otc & prescrips Any ideas how to stay sane? My aunt had this to at the same time but she didn't get the nerve damage.
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greg8846 responded:
Hi Nummingbirdm;
The pain your feeling is real its like a wake up call to let you know your still human and you still have a heart.Shiingles pain is very hard to treat.The pain will depress you where your at your wittts end, you don't want to be messed with nor do you want to answer a lot of questions
that require a long answer.Do you find that this pain interferes with your ability to concentrate to. Its most likely time for you to go on a stronger pain medication while your having this very severe pain. Why don't you ask your doctor to please put you on a long acting narcotic, they are not the end of the world drugs, in fact you will start to lead a morre productive life to if your pain is better under control. Please let me know if your interested and i will give you a short list to ask your doctor about. Im very sorry that your in that much pain its not fair at all. We all wonder what we have done to be cursed with this type of pain. Well please keep me informed how your doing i would like to hear more from you. I take it you are new to the board. If not please stay on board,If your not new please hang around again welcome.

Greg Armstrong
 
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hummingbirdm replied to greg8846's response:
Thanks Greg,
You hit that nail right on the head. I was thinking that the other day "what did I ever do to deserve this?" I thought I could survive anything after my 20yo daughter died 10yrs ago. but I feel some depression creeping in again trying to deal with this and live life pretending I'm not in pain.I am new here but have relied on this site for information and reading. I was usually one who never complained. It diffenately interferes with my concentration, I prefer to stay busy and not dwell on it but it's really getting to me reailzing this may not go away. I was never one to take drugs or even drink. I do take hydrocordone but I really don't like it~ 2 side effects flushing & not sleeping well on it. I was planning on asking my Dr about something stronger but I don't really know what or that much about pain meds and yes please tell me what questions to ask. I'm about ready to take out an ad and see how other people deal with chronic pain like this.
Thanx
Hummingbird
 
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greg8846 replied to hummingbirdm's response:
Hi;
First let me say this im so sorry for the loss of your daughter, when you lose a child you lose any faith sometimes in our
beliefs no matter what they may be. We try to make bargains if you bring her back i would give you my life or almost anything from a death of a child. A lot of the time we blame ourselves for things we have no control over what so ever. And it doesn't matter if there 3-4 years old or 20 you get use to that child always being there. And your right we find it very hard to come to grips with the deaths of our children. In fact we can rationalize the death of a spouse better than we can sometimes the child. Because that child came from the both of you there are no replacements for anyone really. Everyone says time makes it better, i don't agree with that, i feel with a child you will morn for the rest of you life.You always live with the pain to one extent. Well sorry i got off track, no i don't want you to become depressed again, thats more trauma than the pain your dealing with it. It makes it harder and are pain becomes worse. You know you said you took Vicodin, the Hydrocodone can cause some of those effects your talking about. Maybe it time to also get away from Tylenol in your medication to. Most likely you could ask your doctor to try you on like Oxycontin ER that extended relief, the 40 mg would help you to start out with. Im not a doctor nor am i trying to prescribe for you. But that drug would give you coverage for 10-12 hours a day, maybe a little less. It can always be slowly increased for the pain to be better controlled. Also there is MS.Contin ER , there are a lot of different drugs out there. But another easy way to see a lot of them is to go on line. This is helpful a lot of the times it will have a picture of the pill and give you a lot more details than i can to type them out here. I can do it but this would be easier in fact you could make copies and ask your doctor certain questions about these medication. Oxy is made by Perdue Pharmacy's, they will have pictures and such. Aslo in the serach box you can enter the medication and it will also tell you that way. Here are some more. Opana ER & IR immediate release Oxycontin is the same way it has a IR also. Morphine you will find as several different other names to that will pop up sometimes when you do a search. This should get you started. Please if you have any more questions please don't hesitate to ask. If i don't have the answer i will find it for you. Please if you would let me know how your getting along. Also Percocet has Tylenol in it also.
Good luck.


Greg Armstrong
 
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greg8846 replied to greg8846's response:
Hi Himminbird;
I just put out a new post that talks a lot about the Shingles Vaccine and treatments. I hope this helps you some in the plight to fight this problem.

Greg Armstrong
 
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hummingbirdm replied to greg8846's response:
Hi,
Thanx alot Greg, yes guilty as charged about losing my faith back on track now. I don't think we ever get over it, certainly never forget them but time puts somethings in perspective and we really come to know our priorities and do alot of soul searching, Holidays are still very hard and other special dates. I lost my spouse 6yrs ago it wasn't a picnic but strill not anywhere near the heart wrench. I kinda consider him still here with as when ever I look into my 2 son's eyes
So back at the ranch I'll definately ask my Dr about the med change . And I'll hop over and read the new posts This site to is very informative to look up drugs or pics of them hadn't heard of most of them and didn't know alot of them treated more than one condition they usually just put the one we're being treated for on the information sheet, seizure meds was an eye opener for me, who knew
Thanx again
Hummingbird
 
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kimba2222 responded:
Hi Hummingbird,
I just read your post and can totally understand what you are feeling with Shingles as well as PHN. And they both are the worst! The PHN seems to never want to go away sometimes and it just hurts to wear clothes! Horrible feeling. I am even on powerful pain meds and it does not touch the pain, so I just deal. Have been for many, many years since I got it when I was 17! Don't know how I got it but I did and I got it on my back (the middle part of spine where I can't reach).
I find that warm Epsom salt baths help, anything warm actually. I have tried Aciclovir (in pills and cream), and that does help a little.
I am sorry you are suffering so much. Eventually, the PHN will subside, it just takes a while. Hope you have a good weekend, and take care. Please keep your sanity! You can write to me anytime, although I have been so busy as work I have not been on the site as much as I used to, (I go in spurts-it seems).
Take care hummingbird....................
 
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kimba2222 replied to hummingbirdm's response:
Hummingbird,
I am so sorry for the loss of your daughter and your spouse. Wow, I can't imagine losing my daughter, she is what keeps me going in this world! The light of my life....and I have only spent 2 1/2 years with her! I am sorry you lost loved ones, that has to be such terrible heartache. (((hugs)))........ I have lost 5 friends, two of them best friends way too early. I can understand that loss but not loss of spouse or child.
I have to tell you from experience that Shingles is brought on by stress. I know this as a fact (for me). I always get an outbreak when I am stressed out. Never fails.
Try and have a relaxing weekend and maybe see if your dr. can help you with pain control. Good luck and God bless......
 
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hummingbirdm replied to kimba2222's response:
Hi Kimba!
Thank you so much I'm beginning to think only people who have chronic pain can truley understand, oohh I'm sorry you have it to not good. I agree I cannot stand jeans or anything tight touching that area either sometimes even a gentle breeze it is the darnest thing
Have yourself a great week end to!
hummingbird
 
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hummingbirdm replied to kimba2222's response:
Aren't kids wonderful though? I couldn't imagine of not having her either we almost lost her once before when she was 8mths she got spinal menigitus, spent a month in the children's hospital. All my kids (3) were and are a blessing now even my grandchildren are the lights of my life.
Loss of any kind is very hard I sometimes think there's all kinds of grief to go through with the challenges and stages in
life, emptynest syndrome, menapause, chronic pain it's like we're constantly reinventing and recharging ourselves. They say even pain has a lesson to teach but as of yet I haven't found it. Thanks for replying. Sometimes I think to that it helps to have other people to talk to about it because some people just don't get it.
 
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greg8846 replied to hummingbirdm's response:
Hey Hummingbird;

You have been thorugh a lot over the last few years. Im glad you have joy and security when you look in sons eyes
although we know we will never bring them back, but things over the years start to make all wonder where or when we will pass on. You know i can be very honest about death. Im not afraid to die. I would just miss what i have here. If i even remember what is here . I don't want to forget my children and my wife. But as
we all get older we become more sure of our own destiny, maybe not so much where we will be but the folks that love us the most ,the people we leave behind our going to have to deal with our deaths as we dealt with like your daughters and your husband. You know that is one thing that we all know will happen is our deaths. i used to be worried but not anymore. Well hummingbird i hope you hang around the pain board for a long timel You have stimulated me to work and research more on Shingles and the side effects that our dealt with.Thank your for that. God Bless you and may he always keep you safe all the days of your life and for ever more.


Greg Armstrong
 
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greg8846 replied to kimba2222's response:
Hi Kimba;
How have you been doing lately, i haven't spoke with you in awhile. I hope this thread finds you well and in a little
less pain. Kimba have a great weekend.


Greg
 
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hummingbirdm replied to greg8846's response:
Thanx again Greg I am sooooo glad to have got the courage to open up and write, There are real people here and that's something we don't always have in the real world because alot of us wear masks trying to stay strong and get through, or just maybe we'd cry or have that nervous breakdown and never stop or find our way back.Or "they" don't understand or get it a million reasons "I don't have time for pain I have to much to do". One thing I learned from Compassionate Friends Grief group was it is important to take care of ourselves and put on our oxygen masks first embrace the pain and we will get through it, never over it completley but there it and to acceptance and life will go on with or without us, Time stops for no one. And there is alot in infinate wisdom in alot of the old saying and adages once we figure them out or get it ~and it can apply to alot of different situations One was "what doesn't kill us makes us stronger"some people even I didn't get it when we first heard it, and that poem "footprints in the sand became clearer" and a dear friend who had lost his 9yo son just 4yrs before said to me, and actually he was the first person we called after it happened said " I know you won't believe me now but one day you will smile again"
""I really didn't think so but 6mths later we realized we still had our 1st new motherless granddaughter to raise and how can one tenderly love such a precius gift and not smile and vow to teach her to love, laugh & live,
Our daughter died of a Pulmonary Ambolism~ a blood clot broke away from her leg and lodged in her lung she'd had a difficult pregnancy and they decided to take the baby early by C section. So it is still a bittersweet time a new life & death in one day.
Also we had our sons then 14 & 18 and one day we get to feeling back to our old selves it clicked we were given infinate wisdom and a special insight what's really important in life, like being on a totally new level & path and realizing faith is important, our attitude, At CF they use to say " It was like being initiated into a special club" Children just aren't suppose to go 1st it's not the natural order of things".
I think we are here for a purpose, big or small and hopefully assist others at times we lose our way but continue learning, growing & people not things are the most important. I also saw and knew other people who had shut down and I just didn't want to be an bitter person. I've always have been a life long learner and exploring and having to know why & how things tick. That's why this shingles thing is so bafflling and with all the new medical techniques, I just can't crawl under a rock w/o trying my best to get to the bottom of things. And still today they are finding out new things about it and that we can get it more than once, neurons are misfiririg
I've read and heard of some medical procedures like trying to burn off the nerve ending, and there is just recently a new type of seizure med to try but they can be pretty risking.
Yes when were young we never think or worry about dying it use to bug me that people would turn to the Obituaries in the newspaper 1st thing, lol, now I do it. . But it's ineviaible
and there isn't another option unfortnately, change, Death & taxes are the only things we can be sure of.
You to Greg have a wonderful week end, it's opening day of fishing around here tomorrow.
Hummingbird
 
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greg8846 replied to hummingbirdm's response:
Hi
Im glad you opened up here on the board, i think there is a reason we don't know why we meet people like you and me. It may never come to gather and will figure out why. But you know something i have been given a special gift i made a connection with you and it has been great. I think you said and put things in perspective that you have not done in very
long time. You have came to grips with it long ago but now your able to put it into words which is so very important to
all of us no matter who we are.And your right the natural order
of a child going and dying before is not supposed to happen, its not a expected norm as our people before have gone before us. So may God always be with you for now and ever more. Take care.

Greg
 
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annette030 responded:
Opiates really have limited use in PHN pain. They often just don't work well. Not that you shouldn't give them a try, but be realistic about how much relief they may give you. My uncle had Shingles and then the PHN for about five more years. He tried all kinds of treatments, some helped, some didn't. Then the PHN just went away. That made him very happy, lol. He felt he could deal with the heart attacks and strokes, but not the chronic pain from the PHN.

The only med other than the ones you mentioned that I can think of is Lidoderm patches. You can only use it over intact skin, not blisters.

Take care, Annette


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