Coping with Chronic Illness

Why are ever-younger adults contracting shingles?

Here’s why: according to studies conducted in the 1960s by the British GP and epidemiologist Robert Edgar Hope-Simpson, those who are repeatedly exposed to chicken pox—health care workers, say, and families with young children—are less prone to a reactivation of the virus. Greater exposure actually lessens the risk of shingles. It follows, McGeer says, that the immune systems of young adults who didn’t get the varicella vaccine won’t have that extra boosting that would help prevent shingles—the younger, vaccinated generation won’t provide any exposure. So adults in their 20s and 30s have two strikes against them: they’ve had the virus, so it can be reactivated, and they haven’t had the exposure that would heighten their immunity. “They are going to have a problem,” concludes McGeer. [Source]

PHN Awareness Day.

The American Pain Foundation (APF) has designated September 16, 2010 as the second annual PHN Awareness Day.

The second annual awareness day. I think from that you can tell how unaware people are of and about PHN. Yes, even doctors. Yes, even doctors who specialize in nerve damage. And especially me in mid-March 2008 right before I got that awful pain in my arm.

What's PHN? PHN (post-herpetic neuralgia), is nerve pain caused by complications from shingles. During the shingles infection nerves (usually but not always near the shingles rash) become damaged. The damaged nerves send abnormal (and extremely painful) signals to the brain, or as my doctor put it the nerves "freak out." The pain can recur for months, years, or even become permanent. As of right now, there is no cure, there are only various ways to manage the pain.

How bad is the pain, really? The pain from PHN can be disabling. The thing about the PHN is that it’s chronic pain. I never realized how exhausting that could be until I experienced it for myself. For me, there are five distinct different types of pain and sometimes they combine. First there’s the numbness and tingling, that one’s not so bad except when I want to, say, type or use my hand. Then there’s the feeling of having long, sharp needles poked into my flesh. Then, the feeling of electricity coursing through my nerves, which often makes me twitch. That one’s especially fun because it feels as if my nerves are constantly firing. Then, my favorite, the weird and constant itching that is impossible to resist so I scratch and then endure excrutiating pain. That last one is often combined with the allodynia, or as I like to think of it, the jackpot of PHN symptoms. The hypersensitivity of my skin and nerves makes everything hurt worse and longer. Allodynia is the worst, the absolute worst. Allodynia makes it so that the feeling of my own breath across the skin of my arm is excrutiatingly painful. So is the brush of my shirt, a piece of paper, the heat from the sun.

What can you do about the pain? You can try many different drugs, ranging from lidocaine patches to deal with surface pain, to anti-convulsants (which can leave you groggy and with brain fog), to tricyclic anti-depressants, to opioids. You could also try TENS (electrical stimulation of the nerves). So far I've personally had no luck with any of the drugs, though I'm reluctant to try opioids because of their addictive nature.

How do you get PHN? Anyone who has shingles has a chance of getting it, some say the ratio is 1 in 5. It's more common to get PHN as you age, with people 50 and older having a 50% chance of getting PHN and people 80 and older having an 80% chance. [Source]

So what's Shingles? Shingles can first manifest as pain in a certain area. You may experience itching, burning, or tingling sensations. Later, a painful rash or cluster of blisters appears. The rash is very painful and can leave permanent scars. Depending on its location, it can also cause damage to nearby body parts, such as eyes.

How do you get Shingles? You ever had chicken pox? Then you can get shingles (herpes zoster). The chickenpox virus (varicella zoster) can go dormant in your nerve tissue after an outbreak and it can stay quiet for a long time until it pops up years later to cause shingles. Approximately 1 in 3 people will get shingles in their lifetime, with people 50 years or older, who have weakened immune systems, who take certain drugs, and who are suffering severe stress being at higher risk. [Source] The risk of getting shingles again is also 1 in 3. [Source]

So if I'm under 50 and/or never had chicken pox I'm safe, right? That's what I thought. I was 38 when I got shingles and to my knowledge I'd never had a solitary chicken pox anywhere on me. I must have had such a mild case that even my mother never noticed. Since I got shingles I'm finding more and more people well under the age of 50 who not only had it but who, like me, went on to get PHN. I'm thinking that 1 in 5 ratio is either way off or far more people are getting shingles now than ever before.

Then what do I do to protect myself? There is a shingles vaccine, Zostavax, that was approved by the FDA in 2006 for people 60 and older. It is said to prevent or reduce the intensity of a shingles outbreak. It is currently not covered by all health insurance plans. If you think you have shingles, get to the doctor as soon as possible. Early treatment with an anti-viral medication may lessen the duration and intensity of your shingles infection. (Note: I took an anti-viral well-within the 72-hour period, had a very painful infection, and still ended up with PHN. There are no guarantees, but err on the side of caution.) You may also be prescribed topical and/or oral painkillers.

What's the bottom line? As a PHN sufferer I'd say that right now things look pretty grim. There is nothing you can do to prevent yourself from getting shingles (if you've ever been exposed to the varicella zoster virus) and if you do get shingles there is nothing at all you can do to prevent yourself from getting PHN. If you do get PHN, there are no drugs specifically made for it (don't you believe what Lyrica says on TV, they're an anti-convulsant called pregabalin), though some of the drugs may work for you, at least to a degree. The best thing to do is be aware of the traditional shingles pains--itching, burning, tingling--and rash, and see your doctor immediately if you suspect you might have shingles. If you can afford it (the cost ranges from $200-300) you might want to get the vaccine yourself, despite your age and health insurance coverage.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Post-Herpetic Neuralgia (PHN), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), Migraines, Asthma, Anxiety, Depression, Diabetes.

2. I was diagnosed with it in the year: 2008, 2010, mid-1990s, 1986, early-1990s, early-1990s, 2010

3. But I had symptoms since: For CFIDS it took about a year and a half to eliminate all other possibilities and get a diagnosis. Asthma I had all my life. Same with anxiety and depression.

4. The biggest adjustment I’ve had to make is: CFIDS and PHN are physically and mentally debilitating. I went from being an overachieving Type A to someone who had to learn to pace herself and in some cases stop altogether.

5. Most people assume: that I'm fine when they look at me.

6. The hardest part about mornings are: Everything. I never know from day to day what my pain and energy level will be. The first thing I do every morning is assess myself and how I'm feeling.

7. My favorite medical TV show is: I don't have one. I don't watch them. Hey, I live it!

8. A gadget I couldn’t live without is: My laptop. I have to lie down and rest a lot and I can take the laptop with me.

9. The hardest part about nights are: Sleeping comfortably. Sometimes the pain makes it hard, sometimes it's the fatigue.

10. Each day I take 6 pills & vitamins. I also use two inhalers. (No comments, please)

11. Regarding alternative treatments I: am willing to try them.

12. If I had to choose between an invisible illness or visible I would choose: I can't answer this. I think whichever I had would seem worst to me.

13. Regarding working and career: I had to give up my dream career because of the pain and fatigue from my illnesses. I don't work now because I can't. To say I am heartbroken over this would be an understatement.

14. People would be surprised to know: that I am in pain and exhausted every single day of my life.

15. The hardest thing to accept about my new reality has been: Learning to pace myself. I'm not good at taking it easy and giving up. I've always been more of a push through it no matter the cost person.

16. Something I never thought I could do with my illness that I did was: I haven't run into anything like this yet. I guess I go into everything with an open mind.

17. The commercials about my illness: Are such crap. Shut up, Lyrica, you are so not the PHN miracle cure for everyone.

18. Something I really miss doing since I was diagnosed is: Working. Seriously, I loved my job. I was an activist dealing with women's issues and it was everything I ever dreamed of doing. I also miss being awake more than 8 hours each day.

19. It was really hard to have to give up: *sigh* My life. My social life, my work life. I can't make plans and know for sure I'll keep them.

20. A new hobby I have taken up since my diagnosis is: Reading all about it?

21. If I could have one day of feeling normal again I would: Spend the entire day awake and active. (But I hate the wording of this question. I'm normal now, I'm just sick.)

22. My illness has taught me: To prioritize.

23. One thing people say that gets under my skin is: "I'm tired too."

24. But I love it when people: Understand my limitations and realize that I want to be with them even when I'm too sick.

25. My favorite motto, scripture, quote that gets me through tough times is: I don't have one. When times are tough I talk to my ill friends and we commiserate.

26. When someone is diagnosed I’d like to tell them: I'm sorry. I understand as best I can even though you and I are different. I'm here to talk.

27. Something that has surprised me about living with an illness is: How absolutely difficult it is to make it through life if you are outside what is considered to be the norm.

28. The nicest thing someone did for me when I wasn’t feeling well was: Understanding that I wasn't feeling well and accepting it.

29. I’m involved with Invisible Illness Week because: I'm an activist by nature, I guess.

30. The fact that you read this list makes me feel: Good. Hopeful.

Invisible Chronic Illness Awareness Week - September 13-19, 2010

I'm writing a post a day for Invisible Illness Awareness Week. Want to know a secret? Because of my invisible illnesses and the difficulties I have functioning because of them I'm writing these posts days, even weeks in advance. (The miracle of the internet, I tell you what.)

"The term invisible illness refers to any medical condition that is not outwardly visible to others, even healthcare professionals. Invisible illnesses encompass a broad range of conditions, including heart disease, diabetes, dementia, psychiatric illness, autoimmune disorders, and even cancer." [Source] Now, think about it for a minute. If you see someone using a mobility aid or wearing a scarf over their head to cover hair loss from chemo, you know they're sick. You don't know exactly what's going on, but you know something is. But if you looked at me or at any of the people like me you'd think we were fine. You have to look closely to see the dark circles under our eyes or to notice the faint frown of discomfort as we silently experience pain.

Now I'm absolutely not saying there is a hierarchy of disability/illness and that one is worse or better than the other. As far as I'm concerned, the one that's personally affecting you is the worse one. But what I am saying is that it's difficult to exist with an invisible illness. I don't get that automatic assumption that there's something going on. I get the automatic assumption that I'm fine and quite often that comes with the idea that I might not be sick, I might just be slacking.

I have post-herpetic neuralgia (PHN) and chronic fatigue immune dysfunction syndrome (CFIDS). I also have migraines, anxiety, and depression. You can't see any of those things, you have only my word that they exist. Enough people experience migraines that they tend to believe me when I talk about them. And if they don't, they can always stick around and wait for me to vomit. Strangely enough, PHN tends to be believed, at least once I call it "nerve damage." But I'm finding that CFIDS, anxiety, and depression are all doubted in their own ways.

Anxiety and depression, well, they're in my head, right? I feel sad. I feel anxious. So do you. You can't see my brain chemistry from outside my head so you don't know how very important it was for me to take a medication that adjusts it. But if you've known me long enough you can tell the difference in my attitude and behavior.

As for CFIDS, well, what other chronic, debilitating, disabling illness gets greeted with comments of "I'm tired too"? If you saw me, an otherwise healthy looking 40-year old woman taking the elevator instead of the stairs and sitting down several times during a short walk, would you think I was ill or just lazy?

That's the stigma of invisible illness. And it's hard living with it. So next time you see someone "slacking off" give them a second thought and wonder if there might be something going on that you can't see.

Information brochure about PHN and its treatments.

Click here to download:

PHN_Brochure_Feb2004.pdf (1.56 MB)

(download)

Click here to download:

PHN_Brochure_Feb2004.pdf (1.56 MB)

Findings from a survey about shingles/PHN.

The American Pain Foundation (APF) announced today at the American Pain Society (APS) Annual Meeting the results of a national survey that showed postherpetic neuralgia (PHN), also known as after-shingles pain, continues to be a condition with low awareness amongst Americans, demonstrating a need for health care provider (HCP) intervention. ... The condition affects approximately 1 million people in the United States every year, and one in five of those who suffer may go on to develop PHN, which results from nerve damage caused by the shingles rash. For some, the PHN pain can become so severe that it significantly impacts quality of life. PHN is one of the most common causes of pain-related suicide in older Americans.

Key findings from the 414 people surveyed who have had shingles include:

A Lack of Education and Communication about PHN

• While nearly 60 percent of respondents said their physician mentioned  burning, aching, sharp or itching pain in relation to their shingles outbreak, only one-third reported being told by an HCP about the possibility of developing PHN
• Of the survey respondents who first experienced after-shingles pain, almost half (42 percent) did not think that it was related to their shingles rash in any way

The Prevalence of PHN

• Fifty-one percent of survey respondents reported experiencing pain, shortly after or within months, after their shingles rash went away
• Among respondents who experienced PHN, 16 percent reported that after-shingles pain lasted for 15 weeks or more
• More than half of respondents said the pain they experienced after having shingles was more frustrating than actually having shingles

Treatment Option Preferences

• More than 70 percent of respondents were interested in using a topical treatment, alone or in combination, to relieve after-shingles pain

[Source]