CFS & Fibromyalgia Patients At Risk for Shingles

According to Richard Podell, MD, (a clinical professor at New Jerseys Robert Wood Johnson Medical School) if you are a FM and/or CFS patient and if you had chicken pox as a child, you are at high risk for shingles because of your immune system being compromised.


Shingles and Chronic Shingles Pain The Right Treatment Can Help

Shingles pain is a delayed complication of childhood infection with the chicken pox virus, varicella zoster, a form of herpes virus. After childhood chicken pox, varicella virus remains within nerve cells in the spinal cord in a kind of long-term hibernation. However, among about half of us the hibernating virus can wake up and become active. This is the disease we know as shingles.

Shingles pain begins when the varicella virus wakes, becomes infectious, and migrates from the spinal cord down through the long filament or axon of a nerve. In addition to shingles pain, we usually see a line of tender vesicles or blebs [blisters] on the skin over the path of the infected nerve.

Shingles treatments can reduce shingles pain if we start an anti herpes virus drug within the first two or three days of symptoms. Such shingles treatment medicines include FamvirR, ValtrexR and acyclovir. With or without shingles treatment, most cases of shingles heal within a few weeks or months.

However, if we dont obtain prompt shingles treatments, some 5% to 15% of shingles victims will go on to suffer from long-lasting chronic pain. This post-shingles pain is called postherpetic neuralgia (also spelled: post herpetic neuralgia). Neuralgia means nerve pain. Another term for postherpetic neuralgia is PHN. Postherpetic neuralgia pain can last for many months, years, or decades.

Shingles treatments within the first few days substantially reduce the chances of developing late stage PHN. Indeed, even without anti-viral medicines, prompt shingles treatment with pain medicines or nerve stabilizing tricyclic antidepressant medicine can also reduce the risk of postherpetic neuralgia. However, for reasons we dont understand, one can still develop PHN, even when one obtains prompt, early shingles treatment. [More on treatments later. Note also that a shingles vaccine that the FDA recommends for adults age 60 and older who have an intact immune system is available in the U.S. as a means of boosting immunity to the reactivated virus.]

PHN starts with inflammation and damage within the shingles-infected nerve. But this is not all. The effects of shingles pain and nerve damage can also flow backward through the infected nerve into the spinal cord itself. In this way PHN can disrupt the pain-conducting pathways within the spine, and from the spine, on into the brain. We call this nerve-damage induced pain neuropathic pain. At this late stage of postherpetic neuralgia there is no longer an active viral infection. Anti-viral treatments for PHN usually dont help. (Although there may be rare exceptions where antivirals might help.)

– For some postherpetic neuralgia victims the pain is relatively modest an annoying background ache, irritation, or burning.

– Others with pain suffer shooting-pain paroxysms down the affected nerve.

– A third group with PHN has an even more disturbing postherpetic neuralgia pain problem. This is called allodynia a diffusely increased sensitivity to pain of all kinds and also to other stimuli that normally would not be painful, such as light pressure and even touch.

To understand allodynias increased sensitivity to pain, think of your nervous systems pain transmission pathways as a series of radios broadcasting sound signals – from the peripheral nerve up through station stops within the spine, and finally up into the brain. Imagine that most or all these radio relays have their volume knobs turned up to very loud. Thats what allodynia means to our pain broadcasting system.

Increased postherpetic neuralgia pain sensitivity can be fairly local, just around the originally damaged nerve. In contrast, for others postherpetic neuralgia increased pain sensitivity can spread both up and down the spine, causing increased sensitivity to pain throughout the entire body. Fibromyalgia with diffusely sore, sensitive muscles can be one result of post herpetic neuralgia pain-causing allodynia.

Treatments for Acute Shingles and Early Postherpetic Neuralgia

If started within 72 hours, antiviral antibiotics such as FamvirR (famciclovir), ValtrexR (valcyclovir) and ZoviraxR (acyclovir) markedly shorten the duration of the initial shingles infection. Antivirals also reduce the later risk of developing post herpetic neuralgia (or PHN). However, after 72 hours the success rate drops off very rapidly. Therefore, if you suspect shingles, you should see your doctor promptly.

Suspect shingles if you develop an itching or painful rash. A Herpes rash typically has small blebs or vesicles, like tiny balloons out-pouching from the skin. Most often the shingles rash tends to form a straight line over the path of the infected nerve.

Strong pain medicine taken early, for example codeine or morphine, also reduces post herpetic neuralgia complications. Nerve stabilizing medicines such as the tricyclic antidepressants (such as ElavilR, PamelorR) also reduce the risk of developing PHN.

Neither pain medicines nor the tricyclics have anti-viral effects. That they help prevent postherpetic neuralgia suggests that severe pain causes damage to the nerve, which then feeds back into the spinal cord, causing changes there that create increased pain sensitivity. This mechanism may be similar to the neural sensitization process that is believed to cause Fibromyalgia.

High doses of cortisone-type medicines, and also electrical stimulation along the involved nerve might also reduce the risk of chronic shingles complications. However, the evidence for these treatments isnt conclusive.

Chronic Stage Treatments for Postherpetic Neuralgia (PHN)

The pain of PHN probably reflects damage at multiple points along the damaged nerve and in the spinal cord and perhaps also the brain. Therefore, the best treatment needs to address multiple points of vulnerability.

Optimal care also requires holistic attention to the bodys natural healing systems, creating a metabolic environment that minimizes further damage and encourages repair.

Our goal is to both relieve current symptoms while also taking steps to heal the increased sensitivity to pain that typically occurs with this illness. (No, its not psychological or all in your head.) See our discussion of this holistic approach: Reversing Eight Vicious Cycles That Block Fibromyalgia and Chronic Fatigue Syndrome Healing.

Topical Pain Relief Medicines for PHN

Many (but not all) persons with PHN improve by using topical medicines applied to skin over the path of the nerve that was damaged by the acute bout with shingles. These topical medicines include:

– Capsaicin cream (e.g., one brand name is ZostrixR). Capsaicin derives from jalapeno pepper. Applied four or five times daily over several weeks, capsaicin gradually depletes the damaged nerve of an inflammatory substance called substance P. Reducing substance P gradually reduces pain. However, capsaicin, during its first days of use, can itself irritate and increase pain. Obviously, avoid getting capsaicin anywhere near the eye.

– Geranium oil may have local anesthetic-like effects, reducing nerve pain within an hour, and lasting for 12 hours. [See Relief of Post-Herpetic Neuralgia Pain with Topical Geranium Oil.]One useful technique may be to first calm the nerve with Geranium or Lidocaine (see below), and then add on Capsaicin. NeuragenTM, made by Origin Biomedicinals, is the only brand of Geranium oil with published research.

– Lidocaine (xylocaine) patch, an effective local anesthetic, can reduce both pain and allodynia in a large proportion of PHN patients. One can apply up to four large patches around the affected nerve. But one usually may not keep the patches on for longer than 12 hours out of 24.

– Ketamine ointment is an anesthetic that also blocks an additional stop along the pain amplification pathways. This is called the NMDA receptor. Ketamine (which in oral form can be a substance of abuse) is generally safe to use topically. With a physicians prescription, a compounding pharmacist can make it at various strengths.

– NeurontinR, aspirin-like medicines, tricyclic anti-depressants and other medicines that we usually use orally are sometimes as or even more effective applied topically over the nerve. With a physicians prescription a compounding pharmacist can make up many useful combinations of topical medicines.

Note: Specialized compounding pharmacists can make up many topical and oral medicines that are not carried by chain pharmacies. Most fill orders by mail, if you are not located near them. The International Academy of Compounding Pharmacists can help you identify nearby compounding pharmacists.

Natural Oral Treatments for PHN

None of the following natural products has had double-blind studies specifically for use with PHN. However, most have been used with some success for various kinds of nerve pain-related problems. For example: diabetic neuropathy, migraine headache or Fibromyalgia.

These natural treatments typically take weeks to a month to work. They may have their effects by improving nerve healing overall. There is no way to tell in advance which ones will be tolerated or effective for whom. And since we are doing multiple treatments at the same time, even with [one] patient we might not be sure which are working. However, as a group they are very safe, so they are often worth a try.

– Magnesium is known to block the NMDA receptor pain amplification system. Magnesium also acts to improve multiple biochemical metabolic pathways.

– Carnitine and acetyl carnitine may improving mitochondrial energy metabolism. Note: Carnitine is also available as an FDA approved drug, brand name Carnitor.

– Anti-oxidant vitamins and minerals may reduce oxidative stress damage to nerves, e.g. vitamin E, vitamin C, selenium, zinc, N-acetyl cysteine (which helps make glutathione)

– Alpha lipoic acid an important anti-oxidant, has substantial evidence in short term studies for improving diabetes-caused nerve damage (diabetic neuropathy).

– Evening primrose oil an important natural oil, has one excellent study showing improvement in diabetic neuropathy. Sadly, since that study was published in 1993, no one has bothered to repeat it. Youd like to see a replication or two before accepting a proof as true. But, the best evidence we have right now is that primrose oil is probably very good for diabetic neuropathy, so its probably worth trying for other nerve damage syndromes also.

– Omega-3 essential fatty acid sources including fish oil, algae, and flaxseed oil, are critical for making and repairing nerve cells within the brain, spinal cord and peripheral nerves.

– B vitamins including thiamine, folic acid, vitamin B12, and vitamin B6, are essential for nerve health.

– The amino acid lysine may help suppress herpes virus infections. However, theres no firm information about whether it helps healing once PHN is established.

Oral Medicines for PHN

A surprisingly large number of different classes of medicines each seems to help a fair proportion of persons with nerve pain and allodynia (increased sensitivity to pain). However, none works for everyone and difficulty with side effects is also quite common.

Note: Many persons with PHN are not only more sensitive to pain, but are often also more sensitive to the side effects of medicines. Fortunately, for the most part, these are not dangerous drugs. So it often makes sense to go through the list on a trial and error basis until you find one thats good for you. However, its also often wise to start with a dose thats lower than the dose that other people usually start at.

Each of the following medicines seems to help some persons with nerve related pain syndromes, although only a few have been systematically studied for postherpetic neuralgia:

– Tricyclic antidepressant medicines. We use these for PHN at much lower does than we normally use for depression. Tricyclics can help PHN, whether or not you are depressed. For example: ElavilR (amitryptiline), SinequanR (doxepin), PamelorR (nortriptyline). Also related to the tricyclics: FlexerilR (cyclobenzaprine)

Caution: The tricylics can sometimes increase vulnerability to heart rhythm abnormalities. An EKG to check the hearts QT interval should be considered especially if you use higher doses or have a history of heart rhythm abnormalities or other heart problems.

– Nerve stabilizing/anti-seizures medicines. Many medicines that we currently use to treat epileptic seizures also have value for a some persons with nerve-related pain syndromes.

NeurontinR (gabapentin) has good data showing benefit specifically for PHN. GabitrilR (tiagabine) is similar to Neurontin. Pregabalin [brand name LyricaR, is another drug prescribed for postherpetic neuralgia that recently gained FDA approval for prescription to treat Fibromyalgia.]

TrileptalR (oxcarbazepine) is useful for trigeminal neuralgia nerve pain, but has not been tested specifically for PHN. Trileptal is a safer version of TegretolR (carbamazepine), a long-established medicine used for nerve-related pain. LamictalR (lamotrigine) and TopamaxR (topiramate) are additional nerve stabilizing/anti-seizures medicines that might potentially be helpful.

– Muscle relaxant/anti-muscle spasm medicines. ZanaflexR (tizanidine), an alpha adrenergic blocking agent, and BaclofenR, a GABA receptor stimulating medicine, are both used for muscle spasm in multiple sclerosis. Both are sometimes useful for nerve-related pain.

The benzodiazepine tranquilizers such as ValiumR, KlonopinR, AtivanR, and XanexR have muscle relaxing effects. In some persons this helps reduce pain. Caution: benziodiazepines are potentially habit-forming if used frequently.

– Narcotic-related pain medicines. If pain is too severe for aspirin/advil type anti-inflammatory agents or acetaminophen (TylenolR) often UltramR (tramadol) is a relatively good and relatively non-addictive pain medicine choice.

-Strong narcotic medicines can also be considered. Attitudes are changing toward a more positive view of these opium-related pain medicines. Recent research suggests that persons who have no personal or family history of drug or alcohol abuse are not likely to abuse prescription narcotic drugs. Of course, for some, narcotics do pose a risk of drug abuse. The choice of whether to use narcotic pain medicines has to be individualized for each patient.

Many different narcotic pain medicines are available including codeine, hydrocodeine, and morphine. All are constipating and may be sedating. While narcotic pain medicines can be taken intermittently, for those who require continuous treatment pain specialists prefer combining longer acting agents such as the 3 day DuragesicR (fentanyl) patch, with occasional break-through use of shorter acting agents such as PercocetR or codeine.

Recently, pain specialists have taken a second look at Methadone, because of several advantages. Methadone is inexpensive compared to the others, and does not cause a euphoric high as other narcotic pain medicines might. Methadone, may also work at pain receptor sites in addition to those of other narcotic medicines, such as the NMDA receptor. All narcotic pain medicines can cause addiction, sedation, prostate problems and constipation.

Other Medicine Approaches for PHN include:

– ZofranR, usually used for nausea for some persons also helps nerve-related pain. However, Zofran can cause major problems with constipation.

– NamendaR (memantine) – was recently approved by the FDA for treating moderate and advanced Alzheimers disease. However, Namenda is also is the safest and most potent medicine we have that acts to calm down the NMDA class of pain receptors in the spine and brain. It has not yet be tested for PHN, Fibromyalgia, or other pain syndromes. However, in theory, it is likely to be helpful for some persons with these conditions.

Other Non-Medicine Potential Approaches for PHN

– Anesthesiologist pain specialists claim some success injecting anesthetics or corticosteroids into areas in or near where the affected PHN nerve enters the spine.

– Acupuncture may be helpful for some, but certainly not for all.

– A few individuals benefit by cutting the tiny nerve branches under the skin that connect to the damaged PHN nerve. A few individuals have been reported to benefit by cutting out that area of skin entirely.

– Electrical stimulation techniques can be helpful. A portable TENS (transcutaneal electrical stimulation unit) can reduce chronic pain.

– We have been doing research with a low dose electrical technique called frequency specific stimulation. This technique for healing nerves and nerve pains was developed by Carolyn McMakin, DC, a Portland Oregon pain specialist. [See for example Relief of Fibromyalgia Through Microcurrent Therapy and Interview with Dr. Carolyn McMakin, pioneer of unique Fibromyalgia (FM) treatment]

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  1. I never heard of that before. I have fibromyalgia. I have never had shingles yet, but I have had pneumonia twice.

  2. I just searched the two words together because of a suspision I had. Several months after this incredible pain started (fibromyalgia) I came down with shingles. I almost didn’t get it diagnosed because everything hurt. The pain seems so similar.
    Then I read a couple of days ago that Lyrica treats both conditions. Too many coincidences. It had to have some link.

  3. Linette Schreiber says:

    I currently have Shingles– rash has presented on my left arm; also intense pain along trigeminal nerve/left ear (and allodynia on left scalp, back of head, and back). Also, have a bit of what looks like “thrush”, in my mouth. Question: Thrush or Ramsay-Hunt syndrome? I don’t have a doctor who is that available (I have to go thru a clinic, and it’s a nightmare). I’m in a lot of pain; should I get a steroid shot? How does on obtain Geranium Oil?

    I am taking Valtrex; on a low dose of Doxepin (already, for migraines!), have magnesium and B vit. available.

    Am alternating Ultram and Percocet (both broken in half).


  4. Hello,
    I was diagnosed with FM last year. Several months ago, I noticed what appeared to be inflamation on my tongue. It then began to burn like scaulding from a too hot liquid. I saw five different specialists, and finally my GP, who is very holistic, took two seconds to tell me it looked like shingles! So the person who asked about thrush on the tongue probably had the same symptoms that I have had for over 6 months! My doctor has prescribed Valtrex with the one day 12 hour dose. I am now waiting to see if it makes any difference. It is confirming to read that some else with FM had similar symptoms, although I would not wish this burning tongue on anyone. Makes it difficult to eat, drink hot beverages, and gets very painful by the end of the day. Please let me know if you learn of anything else that helps with this problem.
    Thank you.

  5. Chicken Pox can cause massive scarring of the skin that may not clear, that’s bad,:,

  6. Have been diagnosed w/degenerative disc disease, fibromyalgia, and CFS. Lots of pharmacalogicals, diets and lifestyle enhancements, natural supplements and naturopathic efforts. Today, was diagnosed w/ Shingles and I’m already taking a narcotic, a tricyclic antidepressant for peripheral pain, a muscle relaxer. OK. Since the Shingles outbreak is dangerously close to my eye I agreed to take an antival typically prescribed. Since I AM ALREADY ON MOST OF THE suggested REMEDIES for Shingles, what should I expect?

  7. Linda Kay says:

    I am one week into my shingles treatment of Valtrex and have had fibro for 8-9 years. We caught the shingles diagnosis within the first 2 days. I also have degenerative disc disease in nearly my entire spine, along with spondyliolethesis(a slipped vertabrae) at C3-C4 and C4-C5 which pinches a nerve that follows the path of my SI joint and affects my periformis muscle. My skin is numb on the outside around my hip joint so the skin area of shingles going around my hip doesn’t hurt so much as some complain, but the inside of my SI joint and lying on my left side are so painful it’s very hard to deal with. I’m so glad I found this page that describes (kinda) what I’m going through. It’s hard to sit, hard to stand, and hard to lay….and if you want to talk about CFS we can talk. At any rate, thanks for this page and for everyone’s comments. This is nearly one of the hardest health issues I have had to deal with yet, and I am an ovarian cancer survivor.

  8. Karla Doyle says:

    I am on medical disability for fibromyalgia, chronic migraines, and cervical disc disease, and recently broke out with my second episode of shingles. The first time was at the base of my neck, and running over toward my right shoulder. The second episode I am currently suffering with at the base of my spine and generating toward my hips. I am sharing this to let others know that shingles and fibromyalgia are associated together. Aveeno colloidial oatmeal bath is just about the most soothing defense. It pretty much has to run it’s course, but you do run the risk of infection, so be careful. I was told by the dermatologist that stress is a the primary cause, and I can attest to that.

  9. Jenny Stettner says:

    So happy to find this page ! Have fibromyalgia , CFS , degenerative cervical spine ….. and now in juin have get shingles 3 times in 4 month , the skin look ok now , but I’m exhausted and have those neuropathic pain ! Have get operated in my left shoulder in march and have the felling that I have get shingles 2 month later because I was weak ! ……. ( English is not my mother language, sorry if there is mistake )

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