nerve pain from shingles

Infections
1

I'm 28 years old and have been diagnosed with post hepatic neuralgia after having tested positive for shingles 5 or 6 years ago  . I always hurt on my left , upper abdominal area right below my ribs . The pain is a   , severe , stabbing , type pain , but the rash that i get is usually on the underside of my right forearm . I show every doctor the rash and they're like wow that looks just like a shingles rash , but again and again im always told that shingles wont cross the body . So they usually disregard the rash  and dont believe me that i only get the rash when im hurting really badly . 

Its so discouraging ! 

2

Welcome to our awful world.  So sorry you are going through this.  I am a newbie to shingles and have learned a lot in these few short months.  Many more experienced and educated people will be by to post and can share much more valuable information than I can.  The thing I find curious about shingles not crossing the body, giving them the benefit of the doubt, is could there possibly be more than one attack happening simultaneously, one on one side of the body and the other on the other side?  

3

Dear Bgra,

I am so sorry you are dealing with this.

Shingles does cross the midline and can affect more than one dermatome. There are many physicians who are abysmally ignorant regarding the diagnosis, management, and treatment of the disease.

It does not happen as often, but is more common than many doctors are aware of. I would find a neurologist or infectious disease expert in a university medical center for treatment. I know the pain well from Herpes Zoster-Shingles. Do you also have accompanying symptoms before and or with the rash and pain such as headache, mild fever, aches and pains, sweating and chills, fatigue, exhaustion, and malaise?

Do you receive Antivirals and analgesics for the rash and 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 21 years and twice in my right eye.

Many on this forum have Shingles on both sides of the body, on multiple dermatomes, and recurrent Shingles.

Best Wishes.

Merry Juliana

4

Merry, I am also an RN who is recovering from Shingles after having had it  since December 1, 2017. As a NP, have you heard of one’s  face breaking out on both sides after showering as an aftermath ?  How long does the fatigue last in this aftermath? In the last three weeks I have just begun to be active again but wear out pretty quickly. Sometimes I wonder if I will ever feel like myself again! 

Thanks

5

Jeannie,

Some recover in a month, but others remain fatigued months after their episode(s)! I certainly have exhaustion. I just go with the flow during the day and rest frequently between chores and activities. I am 66 years old. I was a non-stop worker, fast-paced walker, but have learned to pace myself. (I also have had 2 ischemic strokes, but this isn't from the strokes in 2008 & 2013 2° A-Fib.)

This is much more difficult when you are still working, BTW, which I did.

Hopefully, the pain is gone, as chronic pain in itself is so debilitating, and therefore exhausting, especially in the head. Mine was/is in the ear and eye. It is very depressing, as well. You cannot enjoy any restful sleep.

I am terribly sorry you are experiencing this. Are you having any other symptoms?

Best Wishes

Merry Juliana

6

Thank you Merry. I’m sure it is many times more difficult if one is working. I cannot imagine given the most horrendous pain I have ever experienced in my life. Thanks be to God, I am left with ocassional burning and stabbing pain and parasthesia at the breakout site. I also have had this bilateral breakout on my face after showering most times. I am wondering if this is even related to the herpes zoster viral infection. It has never occurred before having shingles. 

I’m sorry you have suffered through this so many times. 

Prayers and best wishes to you. 

7

Jeannie,

Please let me know if I can help you in any way. Would it be more helpful to bathe in a tub and avoid the shower beating on your face? Heat certainly worsens the pain of the episodes. Are you experiencing Post Herpetic Neuralgia PHN that might be helped by Gabapentin? Perhaps you could wash your hair quickly with tepid water, but bathe and relax in warm water? When my ear really hurts, I just use a plastic pitcher in the bathtub and tilt my head back to avoid my face and ear getting wet. I don't enjoy showers as I dislike water pounding on my head. It is a more gentle delivery of water. Just ideas..

Heat brings out the rashes and the pain.

Best Wishes

Merry Juliana

8

Thank you so much for your words .  I feel like ive tried every medication , seen every doctor and had as many tests done as you can imagine . The picture i have attatched is the rash i get on my right arm , sometimes worse . Its a  Burning , itching , oozing rash . Mostly my symptoms are : sharp , stabbing pain , fatigue , burning , tingling  skin  . Restlessness , difficulty sleeping , headaches at times (mostly minor ) 

pain from left side around to the middle of my back . 

When i start hurting really bad my ears start ringing and i get light headed but this is usually right before i pass out . 

The pain is so intense . I have tried antivirals and difference nerve meds . most creams / topical stuff burns my arm worse . 

 

9

Dear Bgra,

That is the T1 dermatome- definitely Herpes Zoster-Shingles Rash. You absolutely need to be on Famciclovir 500 mg 3x daily for 10 days at the start of your symptoms. It will stop the replication of the Herpes Zoster varicella virus. The virus circulates all over your body, making you feel so horrible. The Famciclovir is the newest of the three Antivirals, with the best efficacy. Acyclovir is the worst. Valcyclovir never worked for me.

Insist on getting FAMCICLOVIR 500 MG 3X DAILY 10 DAY SUPPLY for your next episode to have on hand. That way you can just start the minute you feel the first twinge of pain.

Use cold compresses or ice to decrease the pain.

I have oxycodone to take for the first few days during the acute episodes.

I also am on Topiramate daily, which helps decrease the Neurogenic pain.

I also take Venlafaxine daily which also helps to reduce the Neurogenic pain.

I use ear drops with Benzocaine with the acute episodes.

Many individuals find creams or liquids with Lidocaine help numb the pain on the skin, soothe the nerve endings, so to speak.

I use the multi-therapeutic approach, as they all work synergisticly so I can at least partially function in my life.

Please Google High Lysine Low Arginine diet and Herpes. I find my episodes are less frequent and less painful since I started following that diet. Arginine triggers the Herpes Zoster-Shingles episodes, Lysine helps prevent them.

Also get your Vitamin D level checked as Vit D helps with immunity. Since I started on Vit D supplements, my episodes decreased markedly.

The new Shingrex vaccine is available in the US in pharmacies, if you have had Shingles. You do need a physician's order. I would inquire at your pharmacy to see if it is available. The Shingrex vaccination is 93% efficacious, as compared to the old Zostavax vaccine, which is 53- 37% efficacious.

I do not know the status of Shingrex availability in other countries, unfortunately.

You do need excellent pain control, a prevention control program, and a clinician who will advocate for you.

10

Dear Bgra,

Part 2 of post

Please find a new Physician/Specialist who knows Herpes Zoster-Shingles.

May I ask where you live?

Did the arm rash pop out all at once or come out in waves or crops? I believe over a period of days, correct?

Best Wishes

Merry Juliana

11

My T-1 is affecting my right side, shoulder blade, armpit, down the back of my arm.My chest stopped after I was dxed with PHN and given prednisone. I still am taking oxy, just not as frequently since the pain still wakes me. I was told by the ER doc to expect it to last 4-6 months. I'm hoping Merry can address the oxy issue. This is going to be a problem, with the opioid crisis. Our state governor has mandated that PCP's and ER docs should only prescribe a max of 5 days. There are not a lot of pain management physicians taking new patients. I can understand the intent, but what about the exceptions such as onocology pts who can't get an immediate appointment, or those of us needing pain management?

12

Kimberly,

I understand your dilemma, as many patients are in this situation. Researchers are trying to prove that other meds such as Gabapentin are superior to Opioids for pain control for chronic pain. I have heard, but not confirmed that Gabapentin is also now going to be a controlled substance by the DEA.

Perhaps you can find a Neurologist to write a prescription.

Unfortunately, patients with significant pain are suffering under these draconian laws.

Merry Juliana

13

Thank you so much for your feedback . You have me in tears , just knowing you care ! 

I live in Macon , Ms . I have local doctors here but they dont seem real knowledgeable about shingles or nerve pain . The arm rash comes in waves over a period of several days 

 

14

Hi Bgra

I looked up Macon MS. You are

2 hours 15 minutes from University Mississippi Medical Center. I would strongly urge you to get an appointment with a Neurologist there for management of your disease. Do you know any nurses who might be able to help you find an excellent Neurologist at University of Mississippi Medical Center in Jackson?

Merry Juliana

15

Hi Bgra

As a Post Herpetic Neuralgia sufferer for over three years I have found a reasonable solution to the problem. I have a topical mixture that relieves most of the pain, and prevents any new outcrops from becoming a problem.

My topical mixture is as follows ;

250 grams of Invite Vitamin E Cream.

Two 5 gram tubes of Aciclovir Cream.

65 grams of Dencorub Heat Gel.

Mix thoroughly and apply sparingly to the pain areas, as required for pain relief.

Invite Vitamin E Cream contains 5% of Glycerol, so it does not form a skin with continued use, as other creams do.

Aciclovir is the anti-viral Cream for Cold Sores and Shingles.

Dencorub Heat Gel contains 26% Methyl Salicylate and 7% Menthol. This is the painkiller in the mixture.

Dencorub Arthritis Cream can be substituted for pain relief if close to the eyes, but the quantity is increased to 100 grams.

As PHN is a long term problem, it is necessary to avoid taking normal analgesics wherever possible, as these affect other parts of the body.

Try this mixture if you have a need for pain relief, and get those very sensitive shingles pimples from time to time. 

16

Feel for you i have PHN as well. Was on gabapentin and got up to 1600 milligrams a day didnt help and damn near killed me and was lathargic so i went to a pain management clinic and they started spine injections and lyrica. 6 months later its manageable. I keep try to go down on dose but pain to bad. I hope you try the injections. Worth it!

17

I have had right hand facial PHN (cheek and forehead) since late September, 2017. Currently not too fatigued, but for the first week I could barely get out of bed ! Gabapentin I did not get on with so I take  Amitryptylene 50 mg, every night. For pain killers I use CoCodamol 30/500. On Gaba I felt very unsteady on my feet; this compounded by a minor stroke on my left side 21 months ago; I have had a stent to get my blood pressure down, hopefully reducing my risk re a 2nd stroke. Colin, England.