A PLACE TO TALK REMEDIES, PRODUCTS THAT WORK, SURVIVAL TECHNIQUES FOR
SHINGLES SUFFERERS
It started with a strange sort of stabbing pain on Jan 4, 2011.
I had an appt made previously for a routine checkup with Doc. I didn't even mention the backache but asked for a shingles shot and or something which would help my immune system. Doc decided to go with a pneumonia vaccine first.
By Jan 6th the back was killing me and there was a tiny rash on midriff, left side.
Jan 7th, back to Doc and she said, uh-oh, SHINGLES. She gave me 7 days of antivirals and
7 days of predisone and 14 days of hydrocodone. She warned me that sometime neuropathy would occur and we could talk LONGTERM relief if that was what happened to me.
Not me, I thought AT FIRST! With the prednisone sort of masking things, I thought, "oh, I am going to have a mild case." I heard it said by everyone who had shingles or had a friend with shingles that it was awful, terrible and could last for months. I didn't even take pain pills that first week, since it seemed to be a stabbing (intermittent) backache, no itching and no blistering. Just a red band all the way from front left to back left. Hey, I was going to beat this OK!
REALITY at Week 2
The pain began. It was shooting into my lungs, my heart, my back. It was hard and took my breath away. It was pretty much constant and the backache was a throb that continued. I began taking hydrocodone, first only to sleep, then more later.......I became one with pain. Nothing else came to mind, even as I still got up off the sofa or out of bed to feed pets or to make supper for us. I read constantly or watched TV. I enjoyed some of my fav writers: Greg Isles, PD James, Faye Weldon, the trilogy of The GAMES (that was fun), and the mysteries of Myron Bolitar; TV was always light and mind numbing so I didn't have to think too much: The Best of Sat Night Live, HGTV, Cake Boss,you know....Wheel of Fortune type stuff, Say Yes to the Dress, Jersey Madness, etc.
Couldn't wear clothes: I began earnestly trying to make myself comfortable.
-light cotton jerseys (Red Camel T-shirts)
-soft flannel sweats to wear
-soft pillows to prop me up giving firm support at lower back.
-showers twice a day using Dove Beauty Bar (easy on skin)
-extra soft towels (changed them every day & lots of fabric softener)
-mild shampoos (Aveda products)
-changed sheets frequently (thank goodness for husbands)
And in week three I realized I was still a mess of pain, so I called Doc again. This pain was not going away and I was much worse than the week before.
When I spoke to the nurse, saying I needed pain relief. She said she would call a pharmacist in town who custom mixes creams (for pain). After application, it worked for about an hour at a time, but gave me some relief to what was constant pain. Either hydrocodone and sleeping OR don't take anything and stay awake miserable, working those books and TV the whole time!
I started asking Girlfriends: what else can I do?
Acupuncture
Week four brought me to the Acupuncturist. When he tried to examine me: I flinched EVERYWHERE on my back from what felt like electric shocks. He was very gentle, had me lie on table on my back (this was possible, believe it or not- maybe pressure stopped the stabbing pains). He used needles and when the first ones were put in my foot, I felt two giant drops of tears roll down my face. I didn't sob; I merely gave in to the pain and the hope that he would help. I saw him three times that week. I began taking Gabapentin for neuropathy (constant nerve pain).
Week five found me able to actually go outside the house...and weather had miraculously changed to warm in late Jan....early Feb. I tried sun therapy on my midriff, but that didn't help at all. So, I used the warmth to relax me. I also walked with my husband and the sheer act of physical effort seemed to divert the pain signals and maybe endorphins kicked in. It felt good to be out of bed, off the sofa,
out of the house. I began feeling a bit depressed at this point. This was, with week 4, the most painful during the course of Shingles.
My pain pills were down to a few, so I called Doc and asked for more. She said no. I felt sheer panic. No pain pills meant no sleep at night. I called her again a few days later to explain the misery and she said take more Gabapentin.
These are supposed to be added slowly to your regimen. So two pills at a time day by day, I added to what became 1600 mg of Gabapentin. The pharmacist said that was an ok dose, and that no interactions with any other stuff I was taking.
I was intermittently leaving the house by this time, but could not stay out long, and usually came home and slept...deep, long naps.
WEEK 6
The acupuncture became my salvation. It was administered in the darkened, quiet room with needles (you don't feel them) and then a heat lamp stationed over me. I felt like a chick trying to hatch at some moments. I would often walk through an area where there were people in small cubbies with needles, or electrical wires hanging from them. From that and from the sad and slack bodies awaiting their treatment, I had the sense of so many people seeking relief from suffering. I didn't know what motivated any of them, but they were my tribe. I said a silent prayer for all of us...
From consulting with Dr. Li, I added Vitamin B12 and a Multivitamin to my daily food intake.
I spent this week organizing myself for a film shoot, but did things in short (and slow) bursts of energy and always sleeping in between. The sleep was so deep - not even hydrocodone gave me such good sleep. I attribute this deep sleep to Acupuncture, but I am sure others would want to claim Gabapentin was responsible.
Meetings were just a blur of pain this week, wherein I was feeling a great soreness and intermittent stabbing pains...
I decided to go to Yoga the following week. I had been walking a few days a week and noticed that when I was busy with physical activity, the nerve firings were quiet during exercise. So, Yoga it was.
WEEK 7
Yoga and acupuncture gave much relief, especially during the time of activity. I felt NO pain during these two activities. I added deep tissue massage to my regimen. I had never had deep tissue massage (not on afflicted areas, though the red bumps were a discoloration by this time). DO THIS FOR yourself! It was wonderful for mind and body. I left massage table just goofy with endorphins or some such natural pain reliever roiling in my pain wracked self.
I was at the point that I felt that Western Medicine had failed me completely. Eastern Medicine seemed to be the only way to make sense of the pain and to actively deal with it.
I felt stuck at a level now. Though I was actively participating in my cure, the pain level was now at 3-4 all the time. I could work sometime. I could stay awake sometime. I could think of other things than constant pain. But at other times: night, the pain grew insistent.
WEEK 8
I read a depressing and thorough report in the Wall Street Journal on Shingles.
It is titled: Painful Shingles Can Strike More Than Once.
GREAT!!!! I am now horrified to read that if you have shingles for more than 30 days, your risk of having a recurrence is greatly increased. The CDC in Atlanta is quoted as encouraging all people over 60 to get the shingles vaccine because there is a worldwide increase in infection.
I sat there reading the article and feeling more depressed than ever. I cannot go through THIS again. I turned on TV loud and tried not to think of what I had just read. My goal was to get well. I didn't want to be discouraged while the pain was still at a high level. I could maybe function at 1 or 2 level pain but 3 and 4 was still too distracting.
I overdid Yoga on Tuesday, so did not go on Thursday. I overestimated how much I could stretch and strengthen. Of course: if Yoga helps, then more Yoga helps more. Not necessarily. I need to pace myself on all physical activity right now. I need more naps. I thought I would be able to recover quickly, especially since the Chicken Pox so many years ago was a light case. I just remember the doc telling me how lucky I was.
This is a disease that strikes 50% of its victims when they are over 60. So that means, young folks get it too. It is odd that nobody has a treatment for it. My doctor just abandoned me when I was weeping in pain. She did not really respond. The nurse was my point of contact and she simply deadpanned whatever news the doctor sent. There was no doctor consult unless I went in for another expensive appointment. She has been my doctor for 12 years. I am not a difficult patient. Perhaps she is surprised by my calls? Perhaps there is nothing she can do? Perhaps she doesn't really believe in the patient bill of rights regarding the idea that a patient does not need to suffer?
Well, enough doctor bashing. I do think I deserve to be angry. All that money on wellness visits, insurance and my attempts to follow her directions did not protect me from the most painful thing I have ever experienced.
And, oh by the way, insurance does not cover acupuncture! So, I have used a flexible spending account to pay for the one thing I think has drawn me out of the worst pain zone: Acupuncture.
I begin Week 9 tomorrow.
These are supposed to be added slowly to your regimen. So two pills at a time day by day, I added to what became 1600 mg of Gabapentin. The pharmacist said that was an ok dose, and that no interactions with any other stuff I was taking.
I was intermittently leaving the house by this time, but could not stay out long, and usually came home and slept...deep, long naps.
WEEK 6
The acupuncture became my salvation. It was administered in the darkened, quiet room with needles (you don't feel them) and then a heat lamp stationed over me. I felt like a chick trying to hatch at some moments. I would often walk through an area where there were people in small cubbies with needles, or electrical wires hanging from them. From that and from the sad and slack bodies awaiting their treatment, I had the sense of so many people seeking relief from suffering. I didn't know what motivated any of them, but they were my tribe. I said a silent prayer for all of us...
From consulting with Dr. Li, I added Vitamin B12 and a Multivitamin to my daily food intake.
I spent this week organizing myself for a film shoot, but did things in short (and slow) bursts of energy and always sleeping in between. The sleep was so deep - not even hydrocodone gave me such good sleep. I attribute this deep sleep to Acupuncture, but I am sure others would want to claim Gabapentin was responsible.
Meetings were just a blur of pain this week, wherein I was feeling a great soreness and intermittent stabbing pains...
I decided to go to Yoga the following week. I had been walking a few days a week and noticed that when I was busy with physical activity, the nerve firings were quiet during exercise. So, Yoga it was.
WEEK 7
Yoga and acupuncture gave much relief, especially during the time of activity. I felt NO pain during these two activities. I added deep tissue massage to my regimen. I had never had deep tissue massage (not on afflicted areas, though the red bumps were a discoloration by this time). DO THIS FOR yourself! It was wonderful for mind and body. I left massage table just goofy with endorphins or some such natural pain reliever roiling in my pain wracked self.
I was at the point that I felt that Western Medicine had failed me completely. Eastern Medicine seemed to be the only way to make sense of the pain and to actively deal with it.
I felt stuck at a level now. Though I was actively participating in my cure, the pain level was now at 3-4 all the time. I could work sometime. I could stay awake sometime. I could think of other things than constant pain. But at other times: night, the pain grew insistent.
WEEK 8
I read a depressing and thorough report in the Wall Street Journal on Shingles.
It is titled: Painful Shingles Can Strike More Than Once.
GREAT!!!! I am now horrified to read that if you have shingles for more than 30 days, your risk of having a recurrence is greatly increased. The CDC in Atlanta is quoted as encouraging all people over 60 to get the shingles vaccine because there is a worldwide increase in infection.
I sat there reading the article and feeling more depressed than ever. I cannot go through THIS again. I turned on TV loud and tried not to think of what I had just read. My goal was to get well. I didn't want to be discouraged while the pain was still at a high level. I could maybe function at 1 or 2 level pain but 3 and 4 was still too distracting.
I overdid Yoga on Tuesday, so did not go on Thursday. I overestimated how much I could stretch and strengthen. Of course: if Yoga helps, then more Yoga helps more. Not necessarily. I need to pace myself on all physical activity right now. I need more naps. I thought I would be able to recover quickly, especially since the Chicken Pox so many years ago was a light case. I just remember the doc telling me how lucky I was.
This is a disease that strikes 50% of its victims when they are over 60. So that means, young folks get it too. It is odd that nobody has a treatment for it. My doctor just abandoned me when I was weeping in pain. She did not really respond. The nurse was my point of contact and she simply deadpanned whatever news the doctor sent. There was no doctor consult unless I went in for another expensive appointment. She has been my doctor for 12 years. I am not a difficult patient. Perhaps she is surprised by my calls? Perhaps there is nothing she can do? Perhaps she doesn't really believe in the patient bill of rights regarding the idea that a patient does not need to suffer?
Well, enough doctor bashing. I do think I deserve to be angry. All that money on wellness visits, insurance and my attempts to follow her directions did not protect me from the most painful thing I have ever experienced.
And, oh by the way, insurance does not cover acupuncture! So, I have used a flexible spending account to pay for the one thing I think has drawn me out of the worst pain zone: Acupuncture.
I begin Week 9 tomorrow.
