I have gotten the shingles in my sciatic nerve all the way down my leg and on the bottom of my foot. Can barely walk very far Im having a terrible time .My NP says "Its just the shingles hold on" Its been over a month and a half and Im still having a hard time
Is this Normal ?
Dear Mark,
I am so sorry you are going through this right now. I understand the agonizing, lancinating pain, sleepless nights, and suffering.
While the pain you describe occurs with shingles, what is NOT normal or should not occur is the NP's response, not treating the pain.
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-two years and twice in my right eye. I also have had severe back pain with sciatica necessitating lumbar and cervical spine surgery. I understand your pain, more than you know . I was walking with a walker before my lumbar surgery.
This is a summary of the stages, signs and symptoms of Herpes Zoster-Shingles, and medical management of the disease. Read the last paragraph!
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, but not always
Itching
Description of pain: deep burning or aching pain, or electric shock–like pains.
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!
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
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.
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.
Mark
I would find a clinician to treat your pain. Call a neurologist ASAP or pain specialist to treat your pain. You need medications. I would never see that NP again. You should not be suffering like this! I am so sorry.
Best Regards,
Merry Juliana
Hello Merry, I am 57 years old & in 2014 I had a terrible experience with active shingles for 5 months. As you can imagine I now have nerve damage across my back where the shingles rash was. Initially I had an an outbreak on my left side & then an equally aggressive outbreak on my right side in a wide band starting from the middle of my back to my stomach. Unfortunately my GP was on holiday when the symptoms first started. When he returned from holiday & I told him what was happening he didn’t totally believe me because he was educated that shingles usually only happens once. I was prescribed anti viral meds just the one time.
My problem is whenever I am feeling particularly stressed the PHN escalates to a burning pain with spikes of sharp pain. I am immune compromised due to needing medication to control the symptoms of autoimmune disease & Fibromyalgia. I am asking if you have any information regarding the vaccination needle you’ve spoken about that I can obtain through my Doctor? I believe Australia is behind the USA with regards to vaccinations.
Here I am 4 years down the track & shingles still affects me every day! Thank you so much for sharing your information to me & others. Hugs to you.
Apologies to Mark for interrupting your post.
Warm wishes from Australia.
Michelle
Dear Michelle,
The vaccination is Shingrex by Glaxo Smith Kline Pharmaceuticals. It is two intramuscular injections, spaced between 2-6 months apart. It is considered at least 93% efficacious in preventing shingles. It has an adjuvant that makes it highly effective.
I do not know the particulars of insurance in Australia, unfortunately. In the UK, they refuse to give any shingles vaccine before the age of 70 years, as a cost containment measure.
In the US, one receives it at age 50, or sooner if you already had Shingles, and wish to prevent a recurrence or stop or decrease the intensity of the PHN.
Frankly, I would have paid money to have a vaccine like this two decades ago. In certain countries, they will not give it to people, even if they pay for it until they reach 70 years of age.
I do not know the restrictions in Europe. Some with severe Post Herpetic Neuralgia PHN or ongoing Herpes Zoster-Shingles have had excellent results, with their Post Herpetic Neuralgia PHN stopping all together.
I just received my first Shingrex injection two weeks ago, without a severe reaction. It is too early to tell if it will stop my recurrent episodes. I did mount an immune response, based on the side effects, however. One lady on this forum with autoimmune disease and ongoing Herpes Zoster received the vaccine a few months ago and the shingles is slowly resolving.
Hopefully, Australia is not rigid regarding its rules as to its medical decisions. The patients always sufferers.
Please let me know how it goes with the Shingrex in Australia!
Best Wishes!
Merry Juliana
Hello Mark, I am wondering how you’re going? It’s absolutely disgusting how some Doctors treat people who are suffering from Shingles. Especially when the virus is not behaving in the ‘text book’ way that Doctors learn about in medical school. Like many people who write on this web site looking for support, I have been experiencing reoccurring shingles since late 2013. I have postherpetic neuralgia as a consequence of 5 months of active shingles across my back. The rash has long healed but there is scaring. The anti seizure drugs like Lyrica & Gabapentin make me feel drug f##ced & because I live on my own & need to be able to drive I can not take them. I am prescribed opiates which have no negative side affect on me at all. They lower the pain & I never abuse them however it’s just a matter of time & the Doctor will no doubt stop them.
It always amazes me how some health professionals hate to see someone feel better. Isn’t that their job?
I hope things are improving for you. If you need support, don’t be a stranger.
Best wishes
Kitty
Thank you so much Merry for the information. I see my Dr in 10 days so I will let you know the outcome.
Warm wishes
Michelle
Hello Mark, I am wondering how you’re going? It’s absolutely disgusting how some Doctors treat people who are suffering from Shingles. Especially when the virus is not behaving in the ‘text book’ way that Doctors learn about in medical school. Like many people who write on this web site looking for support, I have been experiencing reoccurring shingles since late 2013. I have postherpetic neuralgia as a consequence of 5 months of active shingles across my back. The rash has long healed but there is scaring. The anti seizure drugs like Lyrica & Gabapentin make me feel drug f##ced & because I live on my own & need to be able to drive I can not take them. I am prescribed opiates which have no negative side affect on me at all. They lower the pain & I never abuse them however it’s just a matter of time & the Doctor will no doubt stop them.
It always amazes me how some health professionals hate to see someone feel better. Isn’t that their job?
I hope things are improving for you. If you need support, don’t be a stranger.
Best wishes
Kitty
Sorry for the double post. Not sure what happened?
Hi and thanks for thinking about me I’m still having a heck of a time but am now able to walk without a cane although not far Things are calming down I feel I hope I’m right I am a cancer survivor liver transplant recipient so the shingles took full advantage of my immune system being compromised I will say this Shingles are the worse I’ve come across non stop pain foe over a month closer to 2 months If people knew about shingles pain I feel there would be more info all over the news I feel badly for anyone who has gotten this disease My hip leg are getting better but m y foot is still raising hell I M living on tramadol that only helps a little bit I considered drinking alcohol After 33 years of sobriety But have held out so far. Thanks again
My PCP who I just love is out on maternity leave so I had to see a NP who seemed clueless about shingles. My doc comes back in Nov
I had the same thing happen in September. My foot is still not right, and I have trouble walking also. I still can’t drive and it is very frustrating.
Hopefully this will eventually go away. Physical therapy seems to irritate the foot and cause pain and swelling for days.