Internal shingles .... 3 drs now said NO ????
Posted , 4 users are following.
i believe i have internal shingles .
symptoms
coccyx pain whilst sitting in car (ok on bed )
tingling and sensitive left thigh ( almost like mild electric shocks)
severe pain at night next to left breast
sometimes bad cramping in left leg at night
i also have epstein barr 14 months so its hard to tell if im fatigued etc as always tired due to this .
3 drs now have said i dont as i there is no rash but from what ive read it sounds like i do .
appt at neurologist next week earliest i could get in
0 likes, 4 replies
babs99203 lori93950
Edited
I've heard the phrase internal shingles, but I disagree with that interpretation. Shingles is the activation of the chicken pox virus. The external rash is just one of the symptoms that may occur. I never had a rash, and neither do a lot of people. The main symptom in that case is extreme pain with possible burning and tingling that follow a nerve.
When the virus follows a nerve, the doctors should be able to tell which one it is. You can get it in the sciatic nerve area which will cause pain down the leg to the foot. If it's in the rib, chest, back area, it will follow that specific nerve etc. HOWEVER, that's the main nerve, there are MANY nerves that branch out and there can be pain in other parts of the body too, I don't know why. Doctors may say, oh it's the nerve on the left side of your body, so there can't be pain on the right side. Tell that to my body guys! Pain can occur elsewhere, but to a much lesser degree and will be intermittent.
Shingles without the rash is called “zoster sine herpete”. Many doctors have a hard time diagnosing it and people get told they have a heart problem or many other conditions, until the tests are negative. Usually with shingles, one also gets severe fatigue (which may be hard for you to notice) and may have a fever, nausea, headache and just feeling ill. I'm sorry, as if it is shingles, the window for the anti-virals may have passed.
babs99203
Posted
I found this in an article in Shingles. It's pretty helpful and recent, but I disagree with the view that if there's no rash, you won't get PHN. I've had PHN for nearly 3 years, so yet another myth about shingles. "Shingles is practically synonymous with the word “rash.” In fact, a blistering red rash that begins a few days after the onset of pain is one of the classic symptoms that clinches the diagnosis. But sometimes shingles presents without a rash, a condition called zoster sine herpete (ZSH), and it’s important to know how to identify and treat it.
ZSH may actually be more common than previously believed, according to Anne Louise Oaklander, MD, PhD, a neurologist and director of the Nerve Unit at Massachusetts General Hospital. She says it used to be thought of as “unusual and suspect.” But extensive studies related to the shingles vaccine Shingrix have provided lots of new information about the herpes zoster virus and shingles. As a result, Oaklander says ZSH may end up being the rule rather than the exception.
“One of the things that emerged from these studies is the fact that most shingles infections are mild and many are subclinical,” she told Drug Topics. “The virus is more active than we thought and it’s re-erupting in a partial way that very often is going to pass unrecognized.”
People with ZSH exhibit all the other characteristic signs of shingles including a deep and painful burning sensation, pain radiating from the spine, sensitivity to touch, general achiness, itchiness, numbness, headache, and fatigue. Symptoms are almost always isolated on one side of the body, commonly occurring on the face and neck or in the eyes, although they can also show up in internal organs.
Zoster sine herpete can also impact cranial or spinal nerves that provide motor function to body and facial muscles. When this happens, patients can experience weakness in an arm or leg or of the diaphragm muscles that control breathing. If the cranial nerve is affected, the result can be Ramsay Hunt syndrome (herpes zoster oticus), which causes facial palsies and potential hearing loss in the affected ear.
Just as with a classic case of shingles, ZSH can also cause postherpetic neuralgia, although the risk is reduced. “The likelihood of having PHN or any of the serious complications increases with the severity of the neurologic damage, and the rash is one marker of the severity of the neurologic damage,” explains Oaklander. “If you don’t have a rash, it suggests you don’t have a very large infection and you’re not going to have a lot of nerve damage, so you’re less likely to have complications.”
ZSH can be difficult to diagnose based on symptoms alone. Patients may need to have their blood, cerebrospinal fluid, or saliva tested to detect the presence of antibodies and confirm the shingles diagnosis. The standard treatment is antivirals such as acyclovir (Zovirax), famciclovir (Famvir), and valacyclovir (Valtrex), which should be initiated as quickly as possible after onset of symptoms.
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andrea43257 lori93950
Edited
I had internal shingles. In my throat and on the right side of my mouth. Because it didn't have the "textbook" presentation, it took 3 visits to my doctor's office over a week and a half time period for them to figure it out. By then it was too late for antivirals. After recovering (which took MONTHS), I saw my dentist and told her my story. She said if I'd come to her, she would have known right away. She also said most doctors don't "get" shingles. They think if it's not on your torso externally, it can't be shingles. Btw, the fatigue lasts forever. I'm a year and a half out and still sleep 10+ hours each night.
ramon1958 lori93950
Posted
Lori93950
Dear Lori:
It is incredible, I have the same symptoms as you, all of them, except the Epstein Barr. I had chickenpox as an adult in 2002. I got over it after like two weeks, I was sick as hell. Before that, sometimes I would have pain in my back because I had a diskectomy done after I herniated my 5th lumbar disk in a horse fall in 1991. The pain was terrible and sometimes it lasted 3 days, but then it would go away. Also, I never took any medications for the pain until years after, basically, I just let the inflammation run it's course and that was it. Anyways, in 2010, all of the sudden, I developed this terrible internal pain on the left side of my chest. The pain was so terrible that I had to go to the emergency room because I could hardly breathe. In the hospital, maybe they gave me some analgesics, I don't remember, and they gave me IV fluids, the usual sodium solution. After 2 days I was like new, no more pain, but i was never told what it was either, I don't think they ever knew. Anyways, in 2017 as I was teaching in my classroom, the same pain started. For almost a week I endured terrible pain at night but it gradually subsided until one day in August 2019, after I came home, the pain started again, but this time it involved my shoulders, and i had to call the medics and when they took me in they said I had an infarction of the heart. They left me overnight and a cardiologist appeared out of nowhere and listened to my heart after they had done a cat scan with iodine and in the morning I was wheeled to the Operation Room where they put supposedly 2 stents on my coronary arteries. I was never followed up by this doctor, I only took Plavix for one month when I should of taken it for one year and now I have the pain again. Never saw him again. Last weekend I took myself to the emergency room again because I was having pain on the left side of my breast, like pulsating, deep electric stabs and also back pain like when I supposedly had an infarction. To be honest with you, I am 63 years old, I know everyone will eventually die, but I am in very good shape if it was not for this problem right now, and it just so happens that this discomfort begins at night and now I cannot sleep like I used to because I am freaking out about the heart. Last weekend they did an echocardiogram and another chest cat scan and they did not find any major irregularities, even my pulse oxygen is 100%. I believe it's Zoster sine herpete what I have, but I am not sure, and these doctors do not tell me anything. As a matter of fact, after I mentioned it, some didn't even know what I was talking about. I have an appointment on the 16th with this doctor, let's see what he says to me. Let me know what they say to you Lori, I will keep you up to date with my appointment. Get well and God Bless.