Mother has CHRONIC nerve pain from Sh...
Sheila from Wisconsin

United States

#22 Jun 7, 2010
I have had outbreaks of shingles for over 13 years. I am now 41 and have had 15 outbreaks in the last year alone. Most always start on the left side of my temple/eyebrow area and travel down my scalp and left side of face to my neck. I also have a burning pain on my lower part of spine that has left leasions. I have been on high doses of Valtrex that has done nothing. I have been on all the triptiline meds too.

I sometimes wonder if there is a connection between a shot I received when I got chicken pox in my early 20's. It was a shot to speed up the chicken pox virus so the break out would not be too much. It was only a few years later that I had my first outbreak of shingles.
My eye is most times involved and it has affected my eyesight. I have an infectious disease doctor that is part of the Mayo Clinic. I am losing all faith in him. I also have a pain doctor that has me on high doses of narcotics. I hate taking them but in order for me to function at all, I have to take them.

Has anyone else ever had that shot when they got chicken pox. I should also note that I got chicken pox from someone that had shingles?
Catherine

Loveland, CO

#23 Jun 8, 2010
18 months of shingles wrote:
I must concur with the other posters' comments regarding Lyrica. The side effects aren't worth it. I'm not really a fan of any of the narcotics. A combination of Elavil and Acyclovir are really the only things that have worked to keep the shingles at bay - when I stop taking them it comes right back. There are no side effects from the Acyclovir and I take the Elvavil at night as it made me a little drowsy at first , but I've gotten used to it now.
I know shingles pain all too well and recently tried breaking away from harsh medications. I signed up to be a part of a clinical study for an herbal Shingles Relief Cream by this company Nature's Rite, http://www.natures-rite-remedies.com

I'm actually not even sure if the product has been released yet, but when it is, you really need to try it. I was able to get two bottles of the cream for the study, and it relieves my PHN fairly quickly. Since it is all natural, I feel more comfortable using it as needed. Hopefully this is helpful, it has certainly been a life savor for me!
21 years of shingles

Islamorada, FL

#24 Jul 13, 2010
I can only say I feel every ones pain. I have had chronic shingles for the last 21 years. I have tried every thing fron herbs, vitamin supplements to narcotics. Good luck to you all. When I first started breaking out on my back The doc said it was impossible to get shingles more than once. After visiting an special;ist found out that it was indeed shingles that kept reoccuring. I take valtrex on a daily basis and it helps keep them at bay more than anything else. Stress, migraines and other illness creates another outbreak. The pain never goes away
honeyrose

Croydon, UK

#25 Jul 19, 2010
As someone currently recovering from shingles I should like to add my experience, here in the UK.(I am 60, had measles as a child and my son had measles about 20 years ago. Prior to getting shingles I was not on steroids or any other medication and not run down. I do have a compressed disk in my lower back and that is where it started).

Two days before I got any physical symptoms, I was running for a train and suddenly felt as though all my strength had left me, like a balloon withe the air let out. It soon passed and I just assumed I was a bit dehydrated. 24 hours later it happened again, I was about to do some weeding and suddenly felt too weak to pick up the trowel. This too passed but I did feel more tired than usual the rest of the day.

The next day I woke up feeling like I had a bad insect bite in the small of my back right on top of where my "slipped" disk is. There was nothing there. It continued to hurt, a stinging pain and I became convinced I had been stung by something. Still nothing there. By Wednesday (2rd day) my OH said he could see some small spots or blisters ther. By now it was really hurting and I was convinced I had been stung several times by a wasp. My OH insisted there was no sting so I got my neighbour to look. She said it looked like a clump of small boils.

Now I took a photo with my digital camera (held behind my back) so I could see what they looked like, and typed "painful blisters" into Google. Up came the result shingles and it seemed clear that was what I had.

It was now to late to get to the doctor, so I phoned early next morning and said I thought I had shingles - it was really painful. I got am emergency appointment and they asked me to wait in a side room as it is contagious as chicken pox to anyone who has not had chicken pox. When I saw her the doctor confirmed it was shingles.

She prescribed Aciclovir - the anti viral drug -(for 7 days) which she said would not clear it up but stop it from that point. She said I would still come out in a rash, which I did, along the pathway of the affected nerve(from my back round my side to centre front. She also prescribed some CoCodamol (paracetamol and codeine) for the pain and gave me a leaflet about shingles. This described the illness but gave very little advice about pain relief.

I have written a separate post to describe the pain and how I tackled it, in the hope this might help some other sufferers out there.
honeyrose

Croydon, UK

#26 Jul 19, 2010
sorry everyone - senior moment, I meant of course chickenpox not measles in my first paragraph above. (Can't seem to find editoption).
honeyrose

Croydon, UK

#27 Jul 19, 2010
OK here is the daily pain relief regime I came up with, with the help of my local pharmacist. This is all over the counter medication in the UK. you have to stick at it for a few days so the level of painkiller builds up in your system.

07.00 2 CoCodamol (500mg paracetamol and 8mg codeine) OR 2 CODIS (500mg aspirin and 8 mg codeine)
09.30 200mg ibruprofen
12.00 2 CoCo or 2 CODIS
14.30 2 ibruprofen
17.00 2 CoCo or 2 CODIS
19.30 2 ibruprofen
23.00 2 CoCo or 2 CODIS

Plus I also took Vit B complex for nerves and Selenium ACE tabs boost immune system.

Some tips: Soluble painkillers are gentler on the stomach and work faster than non solubles. But take care as they often contain artificial sweeteners. Soluble Anadin for example (mix of aspirin + paracetamol + caffeine contains aspartame). I have to avoid aspartame as it gives me bad headaches.

Personally I find aspirin to be a better anti inflammatory than paracetamol but some people may not be able to tolerate it for medical reasons.

Topical (Local pain relief)- I used a combination of St John's Wort essence (does not work at once you have to let it build up) and anti histamine cream for the itching plus dab of calomine. I tried an ibuprofen pain relieving gel but did not find it any use.

I also put a blister plaster on the largest patch of rash in the middle of my back. I ordered a local anaesthetic spray (Lindocaine) but did not use it in the end. I believe you can get Lindocaine soaked pads in the US.

The pain was worst in the morning when I woke up, it felt like I was being gnawed by rats at its worst. This is because apparently the blood vessels swell and compress the nerves when you are in bed asleep at night. So I stayed up as long as possible at night and tried to catch up with some sleep during the day.

It is now 6 weeks and the rash has gone and most of the itching. It is still painful overnight but not so bad, and I have two soluble aspirins (no codeine) morning and night. Main problem now is post viral fatigue as I am always liable to nod off....zzzzz

Hope this helps some of you out there.
sue

Ashburn, VA

#28 Dec 29, 2010
Came back today after a hard doctor's appointment. Frustrating that even infectious disease specialists don't understand shingles. I've started taking acyclovir every day to control the outbreaks. Unfortunately, even on daily dosages the "episodes" of pain are getting worse when the outbreaks are coming on. This last round I lay in bed for three hours writhing in pain as the bottoms of my hands and feet literally felt like they were on fire (and they itched like hell). Not only that, but my entire body experienced waves of searing nerve pain. When I told my doctor about this she tried to tell me that shingles doesn't spread throughout the nervous system nor does it appear on the hands and feet. Just a little internet searching and I found friggin photos of shingles on the hand and references to it occurring on the legs. Now I have to bring her back proof next visit. My biggest worry is that it is spreading with each attack and getting worse. Has anyone else experienced this? The episodes worsening?
I wanted to add that there is an incredible nutritional therapy write up on Shingles treatment in The Prescription For Nutritional Healing. I'm trying to live by their advice. Unfortunately, I'm one of those people with a compromised immune system due to a dual spinal injury and 17 years of chronic pain. Looks like I'm in for the long haul. But it sure would be nice if there was more indepth research available. So tired of rereading the same old useless stuff about shingles on every website. Does anyone know where I might find more on immunosuppressed complications?
Beth

Hollywood, FL

#29 Jan 11, 2011
Darlene wrote:
<quoted text>Hi my name is Darlene my mother has had shingles on her right leg since January. I don't know what it feels like but everyday seeing my mother go through the pain makes me cry. I am trying anything so she can get some relief. Now she is hallucinating. She is taking medicine for it but for the past couple of days she says she sees things coming out of her leg. Can the meds be causing this. Thank you for your time and i hope and pray that you find some relief from what you are going through. I will have my mother try the vapo rub. thanks for the advice.
Sounds like the drugs are causing her to hallucinate. Try L-Lysine that is natural. Also a product called Topricin pain cream (The cheapest place to buy it is vitacost.com ) topricin.com . This is homeopathic and it is a pain killer. Both are all natural no side effects. I hope this helps.
Nancy

Clarksville, TN

#30 Feb 23, 2011
I have had Shingles on my left side on my buttock since I was 20 years old. I will never forget my first outbreak. I have had it about once every 5-6 months since my hysterectomy about 15 years ago. Before that, I would have a outbreak every month with my period. I also was told I was too young to have this, but there you go. There is no explanation. It seems to be getting longer and worse as I get older, I am 55 years now. Now, the pain is quite diffuse, all around my side and down my thigh, around to my front. Very painful. I just stick it out, as my doctors cannot really help. Right now, I am having the worst outbreak I have had in a long time. I use hydrocortizone cream, alot of tylenol and hot compresses help me.
Lori

Atlanta, GA

#31 Mar 1, 2011
Margaret wrote:
I am 58 and have had shingles since I was 25 - stress brings them out. The only thing that has helped is a daily dose of Valtrex, it works!
But is it ok to take the Valtrex for so long?
Nancy

Clarksville, TN

#32 Mar 7, 2011
Lori wrote:
<quoted text>
But is it ok to take the Valtrex for so long?
I have taken valtrex and Famvir for years with no problems. It DOES work.
Nancy

Clarksville, TN

#33 Mar 7, 2011
sue wrote:
Came back today after a hard doctor's appointment. Frustrating that even infectious disease specialists don't understand shingles. I've started taking acyclovir every day to control the outbreaks. Unfortunately, even on daily dosages the "episodes" of pain are getting worse when the outbreaks are coming on. This last round I lay in bed for three hours writhing in pain as the bottoms of my hands and feet literally felt like they were on fire (and they itched like hell). Not only that, but my entire body experienced waves of searing nerve pain. When I told my doctor about this she tried to tell me that shingles doesn't spread throughout the nervous system nor does it appear on the hands and feet. Just a little internet searching and I found friggin photos of shingles on the hand and references to it occurring on the legs. Now I have to bring her back proof next visit. My biggest worry is that it is spreading with each attack and getting worse. Has anyone else experienced this? The episodes worsening?
I wanted to add that there is an incredible nutritional therapy write up on Shingles treatment in The Prescription For Nutritional Healing. I'm trying to live by their advice. Unfortunately, I'm one of those people with a compromised immune system due to a dual spinal injury and 17 years of chronic pain. Looks like I'm in for the long haul. But it sure would be nice if there was more indepth research available. So tired of rereading the same old useless stuff about shingles on every website. Does anyone know where I might find more on immunosuppressed complications?


Shingles does spread, always on one side of the body. When it does spread, it is called Desiminated Shingles. It is supposed to be pretty unusal. I have had it for 35 years and just this year, I have noticed it in new areas, on the left side of my body.
guest

Jerseyville, IL

#34 May 7, 2011
i have had shingles for the last month. the doc gave me acyclovir 800 mg. for 1 week. and Lyrica 100 mg. a day. i think the Lyrica really works for the severe pain, which is HORRIBLE when i awake in the morning. i use over the counter Zostrix HP cream also. it burns when you 1st apply it as it has capzacin in it. it cost 20.00 per tube from Wal-greens. i take Aleve also. the pain still manages to break through at night. cortizone 10 is good for itching. i just want all this pain and fatigue to go away. i hate using Vicodin 750's as they make me groggy and irritable. i think i have covered all the possible medications there is for shingles. and i use them all intermitently.
Claire Wirt

United States

#35 May 7, 2011
Shannon wrote:
Hi, I have had chronic nerve pain for over 4 years now. I've spoken to people who have had a lot of luck with the vitamin supplement Alpha-Linoleic Acid. It is just an amino acid, so it should have no adverse effect on your mom. My pain management physician also recommended it to me. I have yet to try it.
The treatments that are not as talked about are topical analgesics (basically stuff that you rub onto the site of pain and it kills pain locally). They work very FAST. I use Vapo-Rub. It sounds crazy, but it works!!! It is a pain killer. I also use Walgreens(or any other drug store) store brand Muscle and Joint gel. They reduce inflammation, only nobody thinks to use these topical analgesics for nerve pain. But, they are cheap, work great, and provide instant relief. Give it a shot! It never hurts to try. Good luck with everything and stay strong!
Omg! I have had shingles 2 times a month.. With hormonal changes... On my right back side!! Terrible adrenal pain. It is getting worse as Skin aches and is painful around the site.. I am so worried and sick and tired of being sick and tired. Help
annie

United States

#36 Jul 18, 2011
I have had shingles for 11 months and the nerve
pain is horrible, I am allegric to Pain Meds so
I am suffering this without anything, have used
the pain patches but they stopped helping. I am
so stressed that I have diaherra almost everyday.
Tried DMSO and several types of cream, I don't
know if these are every going to get better, most
days they are real bad all day.2793
Nan C

Street, MD

#37 Sep 19, 2011
Thanks for all the advice on things to use for nerve pain from shingles. I just couldn't believe the damage this did to my body, and the pain. I started with the rash on July 22 and while the rash and blisters have greatly improved, I still am having pain, not the terrible "bee stinging" pain all the time, but occasionally. I can best describe the pain now as occasionally stinging, but more sore. Very sore. I have been taking a combination of codeine and tylenol, but have been worried about getting too much tylenol into my system. I also was using a silver cream on my skin, but when I read abou the complications from using this I stopped. I found Calmoseptine real helpful. It can be ordered by your pharmasist if they do not have it in stock. Do not need a prescription. Best wishes to anyone who is going through this horrible malady.
JJW

Hixson, TN

#38 Jan 12, 2012
I am 39, I have 3 children and I have had the shingles for 28 months. I am starting to get lost in the PAIN!
VLB

Toronto, Canada

#39 Apr 3, 2012
My 74 year old mother has had shingles since dec 2011 and the blisters have healed but the nerve pain is unbelelievable. She is on Lyrica and Hydromorphone long acting and all this does is make her dopy but no pain relief... It hurts me to see her in so much debilitating pain. Dr's state these only medications for the nerve pain. There must be something that could alleviate the pain
Kim

Elkhart, IN

#40 Apr 18, 2012
I have had shingles since October. I now have numbness in my feet and from my waist down from time to time.
I had them at the base of my tailbone and the went down the back of both legs and on the bottom of my feet. My feel feel like prickly most the time like they are asleep. my balance is off. I don't have a great deal of pain but mostly numbness and tingling off and on from my waist down. I take neurontin but I don't receive much relief from it.

Does any one have any idea what can be done to make this go away?
I am 59 years old in case that matters...
jacki

Peck, MI

#41 May 10, 2012
I have suffered from shingles for nearly 60 yrs and have never heard of any of this! When I was a young child the doctors couldn't diagnose the condition so I have never gotten medical treatment. But as I feel thedebilitating symtoms overtaking my right side I decided perhaps a google search could bring hope. Thank you all, I plan to try the vitamin therpy asap.

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