This is my first time ever having shingles. I have on my left side from my belly button running up under my ribs and a little higher than my kidney running up my back.
I have had pain so bad the last three days I can barely stay on my feet before I have to quickly lay down to alleviate some of the pain. Has anyone here had pain that bad?
Shingles pain is horrendous I has shingles it lasted 8 weeks and now I've started getting the pains again I am praying it's not the shingles coming back take care
Aaron - I cannot speak for others, but I had the evil `taser' pain for about a week. Yes, as you say, for me the only safe place was the floor. See your Doctor for some painkillers? The good news, for me, is that I now only get `normal' Shingles pain, which is bad enough. Regards, Colin, England.
Aaron, I had Singles about two years ago, and I got the post pain on my scalp and forehead. I've been to just about every kind of doctor you can think of and they can't seem to help me. Good luck.
I saw my Stroke Consultant for a check up re my minor stroke, and he asked how I was. On explaining about the Shingles, and PHN, his comment was `they don't know how to deal with it' :-(
I have. I am 73 and my attack was 13 months ago. It was preceded by extreme back and stomach pains I thought were caused by the remodeling work I was doing. After two weeks of this pain the rash appeared on my lower right side back and stomach. I had to seek medical.The pain became so intense I felt my skin was on fire. I never found anything to give me relief. The pain abated mostly after 3 months. The rash stayed for 7 months. I got the Shingrix vaccines hoping I never get shingles again. Good luck, you should get some good advice on this forum soon
Hello Aaron. Sorry that you are going through this, friend. Yes, the pain that you are describing is the same for many. For some, it burns like you've been set on fire. For others, the pain is like being hit with a cattle prod. For many people, the pain is both. Having suffered with shingles for 8 very long years, i am truly sorry for what you are enduring now. You have come to the right place, friend. There are many good people here on this forum, who have been where you are right now and can offer you support as well as great advice. Since you know it is shingles, i assume you have already seen a doctor. Hopefully, your doctor has started you on Antiviral meds. Be sure to take them EXACTLY as directed. If after 5 days on these antivirals, you do not begin to improve, go back to your doctor without delay for a stronger dose or an alternative antiviral. This is not something you want to delay, as shingles can and will get worse. In addition, the longer you have an outbreak, the higher risk you are of developing permanent damage to your nerves and a lifetime of pain. Unfortunately, pain meds are a reality with shingles. Tylenol and Ibuprofen will have little to no effect on this pain, so spare your liver and kidneys the trouble of filtering them. Your doctor should have prescribed you strong pain medication. If he did not, see another doctor promptly. Shingles pain itself, will bring on more shingles, so pain meds are a must. Use great caution with them and best to NEVER self-medicate. Have your spouse or someone else that you trust, give you these pain meds. We have already lost too many good people to opioid addiction. So once you have taken that first pain pill, assume that you are no longer mentally capable to decide when you can take the next. Most important, when you are clear of the shingles, be sure to get the new shingles vaccine "Shingrix". It is very new, having just been approved and released this past January 2018, so ask for it by name. It is a 2 dose vaccine, taken 2 months apart. I am living proof that this vaccine DOES work. After over 140 shingles outbreaks, countless hospital stays, and taking 3000 mg everyday for over 5 full years, I am NOW shingle free. Shingles is not the same as in our parents and grandparents had it. Shingles is now hitting people in their 30's and 40's now and for many, it is recurring. So please, do not delay getting this vaccine as soon as you are shingle free. One last thing....avoid ALL stress during this time. Stress can bring on shingles faster than anything else and it will also make your current shingles worse. You won't be able to power through this, so take it easy and rest all you can. Good luck friend. Hope you will be feeling better very soon. Take care.
Hi Colin. Have you had the new Shingrix vaccine yet? Unlike the old vaccine years ago, this new vaccine is ALSO helping people with the PHN, as well as stopping the shingles virus itself. After 8 years of shingles, over 140 outbreaks and daily sufferimg with PHN, this new vaccine worked for me. I have my life back. Take care
Hi r.f, I seen your post and I am making an appointment tomorrow to get the new vaccine. Does it matter if I had the old vaccine?
Hi Joseph. No, it doesn't matter if you had the old shingles vaccine. In fact, the CDC is encouraging people who had the old vaccine to also take this new vaccine. The old one was a live virus vaccine and this one is not live. Also, the old vaccine had an average 38% success rate, with NO relief for people suffering from PHN. This new vaccine has a 97% success rate, even for those suffering from recurring shingles. And it does help relieve the pain from PHN, which is huge. Glad you are getting the vaccine. Again, it is a new vaccine, so be sure to ask for it by name. Take care friend.
Aaron and others. I have had the older vaccine, and I am not sure it has been approved by NICE* in England yet (if ever) . However, if I can go `private' and pay for it myself, I would probably look seriously at that route re my PHN. regards, Colin, England. (* NICE is the UK National Institute for Clinical Excellence, which regulates the drugs available on the UKs National Health Service - the NHS )
Dear Aaron,
I am so sorry you are going through this right now. I understand the agonizing, lancinating pain, sleepless nights, and suffering.
I am a Nurse Practitioner in the States. I have had Herpes Zoster-Shingles in my right ear every three to five weeks for the past twenty-one years and twice in my right eye.
This is a summary of the stages, signs and symptoms of Herpes Zoster-Shingles, and medical management of the disease.
During the Pre-eruptive Phase, you may have some of the following symptoms:
Duration 1-10 Days, but the rash occasionally takes much longer to appear
Headache
Photophobia
Generalized Aches and Pains
Fever, Chills, and Sweating
Enlarged Lymph Nodes near the pain and rash
Fatigue and Exhaustion
Pain usually preceding the rash
Description of pain: deep burning or aching pain, or electric shock–like pains, like a cattle prod, taser, etc.
Acute Eruptive Phase
Rash of grouped vesicle-blisters in a dermatomal pattern.
Occurs in waves or crops over a period of 5-7 days.
Vesicle-blisters look dissimilar and are of different sizes.
The rash is on a red base.
The pain may continue to increase into the second and third week.
The clear vesicle-blisters cloud over, look like pustules, scab over, and turn black. This process may take between 2-4 weeks. Once every vesicle-blister has scabbed over, you are no longer infectious!
You are considered infectious (contagious) if your rash is open to the air, ie not covered, to anyone who has not had chickenpox. This includes all pregnant women! Remember, not all women know they are pregnant!
Chronic Phase (Post Herpetic Neuralgia PHN)
30 days after onset of rash. Definition varies
Duration may last months or years after initial episode of Herpes Zoster-Shingles.
The resolution of the scars can take up to a year to heal.
Management and Medications
ANTIVIRALS: THE CORNERSTONE OF TREATMENT
Famciclovir 500 mg 3x daily 7-10 days, sometimes 14 days.
Smallest Tablet
Convenient dosing
Least Resistance
Most efficacious
Valcyclovir 1000 mg 3x daily 7-10 days
Large Tablets difficult to swallow for some
Based on Acyclovir
Acyclovir 800 mg 5x daily 7-10 days
Inconvenient Dose Schedule
Growing Resistance to Varicella Virus
Acyclovir is the antiviral most often prescribed in the UK.
What dosage of the medication are you on? Sometimes, the Physician places the patient on a lower dose, but needs to increase it to help with the pain-itching.
Sometimes, you need to be placed on a cocktail of medications, as they will work synergistically to help you. These are all by prescription. I have grouped them according to class. A clinician would start with one from the Anticonvulsant class, taper the dosage up, then one from the Antidepressant Class, etc. This list is by no means complete.
ANALGESICS
NSAIDS
Ibuprofen
Naprosyn
Acetominophen
OPIOIDS
Oxycodone
Hydrocodone
Codeine
CBD
ANTI-CONVULSANTS
Gabapentin-Neurontin
Pregabalin-Lyrica
ANTI-DEPRESSANTS
SNRIs
Cymbalta
Effexor-Venlafaxine
HETEROCYCLICS
Nortriptyline
Amitriptyline
2. I would find 100% cotton knit clothing. Make sure there are no seams to irritate your skin. The cotton knit is the most breathable, least irritating cloth to most individuals.
3. Use Lidocaine Cream or Spray OTC topically to help with the pain- itching, eg, Solarcaine with Aloe or Bactine. Many on this forum feel either Lidocaine or Benzocaine help with the pain-itching. The cream might soothe the inflamed nerve endings better and last longer on the skin. You can only use Lidocaine 12 hours on and 12 hours off, as the usefulness will extinguish itself.
4. Use ice or cool compresses. Do not take hot showers, as it will only increase the pain-itching
5. You need to rest and sleep. You cannot power through this disease. Do not go back to work! This virus is way stronger than you are, and you will only get more pain, the more exertion you do. Physical activity worsens the pain.
6. Most Importantly, get the Shingrex Immunization. It is a two phase vaccine, two months apart. It is given intramuscularly. It is highly efficacious in stopping Post Herpetic Neuralgia PHN and recurrent episodes of Herpes Zoster-Shingles.
Shingrex is available in the US at the pharmacy and covered by insurance if you are over 50 years of age. If you are younger than 50, and have had a documented case of shingles, it is still covered.
If you are in the UK/Canada/Australia/NZ, I know it has been distributed there, but the national health insurance may not cover it until age 70, which is ridiculous. It is expensive, but I would have paid thousands not to have recurrent shingles.
Aaron, we are here to support you. Go to your Physician and request opioids ie oxycodone for the severe pain, plus Gabapentin to help with the Neurogenic pain. We understand the excruciating pain. If your Physician refuses, it is time to switch Physicians.
Best Wishes.
Merry Juliana
Hello,
Unfortunately the answer is YES YES YES! Most of we Shingles patients have experienced worse pain than we've EVER had before. I was confined to bed in agony for 9 weeks - and have had PHN ever since (7 years and counting ...). It saps one of energy in the worst way and having to lie down is usual. Merry, who has suffered for YEARS will tell you all you need to know about this insidious malady. It isn't pretty. Hope you were able to get the meds at the onset? Too late if you're not diagnosed within a couple of days. It's a wretched disease. Until we are afflicted, we have no idea of how unbearable it is. Get the new vaccine as soon as possible. Sending you many get well messages and hope to goodness you don't get the dreaded PHN (same pain/no blisters). Make sure your friends know how important it is to get vaccinated - even though it can be expensive, depending upon where you reside.
Thank you so much everyone. I never knew Shingles caused so much pain! It's been so intense I originally went into the hospital believing I had full blown Kidney Stones. I also thought when I first seen the spots that I had been bitten by a spider. The stabs and the shocks are horrible. For about the last 3 days it's been so bad I really can't stay up longer than 5 minutes. Which is just as scary as it is painful. Sometimes the fear of this pain never going away kind of freaks me out. It's been about a week and two days so far.
The 2nd visit I was diagnosed with Shingles and given morphine through an IV. He sent me away with an antibiotic, valtrex, and Tylenol 4. I'm not a big fan of Tylenol 4 as I don't feel it works very well.
Hi Aaron. You hang in there friend. You are NOT alone in this. The great people here on this forum truly care about what you're going through. Stay in touch and keep sharing, as it's healthy. This can be a lonely disease. Unless a person has suffered from shingles, there is no way they can understand the nightmare rollercoaster you are on right now. The people you find here DO understand and sometimes it just helps to know you are not alone at 1:00 in the morning and also knowing that when you say you hurt, people really get it.
You are most likely correct about the Tylenol not giving you the relief you need and will possibly need in the future. Opioids are dangerous if not handled wisely but with shingles, they are a must. You do have a right to be out of pain and your doctor should be told if you are still hurting. If your doctor has not treated many shingles cases or people with mild cases, then he may not understand exactly what you are going through. The pain alone can bring on more shingles so if you are not getting pain relief, i would strongly suggest you go back to your doctor and let him give you something alot stronger. I know I have said thus before but do NOT self medicate. Let someone you trust administer your pain meds to you. If your doctor is not sensitive to the level of pain you are in, then it's time to find yourself another doctor. We have all felt that same fear you are feelung, that your pain will never stop but take comfort Aaron. There ARE meds that can help relieve the pain and when you are past this outbreak, the new shingles vaccine DOES work. My shingles were such that i had to be hospitalized and sedated just to get through it because it was so close to my brain, with pain that was much like lightening in a bottle and all i could do was scream till they knocked me out cold each time, typically for 2-3 days. I didn't take antiviral meds only when i had an outbreak. I took 3000 mg every single day for over 6 years and i was STILL getting shingles. These past 2 years, after many hospital stays, i've was able to be sedated in my home each time shingles would strike. For the most part of 8 years, i had no life. There was serious doubt that this new vaccine would even work for me at all and the shingles were coming every few days before i was even healed from the previous outbreak. I had already begun to give up hope myself and was thinking that shingles would most likely take my life, either with a heart attack from the pain or liver failure due to all the constant high dose meds. Having no other options left, i had to take both vaccine doses while having an active case of shingles both times. Of course, this was under close doctor's care and i would NOT suggest it to anyone but i do not regret it either. It took almost the entire two months, after i took the first dose, before i saw ANY improvement but when it started working, it worked fast. Aaron, if this vaccine worked for me, it will work for most everyone. I truly believe this. I am living proof that this vaccine DOES work. I have my life back now.
So, there IS hope, Aaron. You just need to do damage control right now, to get yourself past this current outbreak, so you can get the Shingrix vaccine as soon as possible. First thing being to get your pain under control. Please go see your doctor. Tell him you are in extreme pain. Tell him you are not sleeping. Be straight forward. Please know you are in my prayers and in the prayers of many on the forum. You take care, friend.
Aaron
About 2 weeks into my Shingles, I was so weak, it once took me 20 minutes to get out of bed. Also I felt so weak that I could barely lift my arm to turn on the bedroom wall switch, so hang in there and pay attention to all that Merry writes. Regards to all, Colin, England. (70 year old Male).
I see my Doctor this coming Thursday. Right now I need to concentrate on my Blood Pressure vs Losartan Potassium tablets, and I am rationed to a 10 minute NHS slot. I will follow up re Shingrix in due course. Regards to all, Colin,England.
All of you are such wonderful people for taking time out of your day to come on here and comment with tremendous advice and great words of encouragement. Thank you all so much.
This is all so new to me. I'm still almost freaked out how an illness like this can come out of what seems no where and just bam knock you out. I had heard of shingles before but never thought it could do this! I am also passing a kidney stone as well. I will go to the doctors this week and ask for some stronger medicine.
Thank you for all being here.
Thank you very much. I'm willing to try just about anything to help with the pain
Aaron,
My first episode of Herpes Zoster-Shingles felt like a cattle prod inserted in my right ear canal was electrocuting my brain while giving birth via my ear canal. I have had kidney stones, induced child birth, multiple surgeries, and shingles is by far the worst pain. My allergist couldn't diagnose me. Two ENTs thought I was narcotic seeking, although I never asked for pain meds. They couldn't diagnose me.
I finally saw a Neurotologist who diagnosed me. It took 3-1/2 weeks before the vesicle-blisters showed on the ear canal. I literally wanted to cut out my (inner) ear a la Vincent Van Gogh. I had no analgesics. We understand and empathize with the excruciating pain and associated symptoms, and by many the abysmally ignorant medical community.
The pain can be controlled. As I stated in my post to you, you need to inform your Physician that codeine #4 is not helping, and a combination of Oxycodone 10 mg and gabapentin would be indicated for the Neurogenic pain you are having.
(Lyrica is difficult to wean off of and has more side effects.)
If your physician is uncomfortable ie won't do it, ask him to get you in to see a neurologist this week who will.
A neurologist will combine medications immediately, but they are often difficult to schedule an appointment with immediately.
I shall be thinking of you, Aaron.
Best Wishes
Merry Juliana