Living with PHN (and my other 7.2 million maladies)

Pin It

Of all the non-food related questions I get (and believe me, I get some doozies), one of the most common ones is, “Why are you so sick so often?”

Um… because I got a lemon for a body?

Because my whole life now revolves around my health and simply maintaining – which affects everything I do, including ye olde blog – I figured it was high time to shed some light on the situation. Not to garner pity or passing sympathies, but just so folks understand what I deal with, and why this isn’t a “daily post” kind of blog.

And hopefully, it’ll bring some public awareness to this disease. I’m not the only person my age suffering through this, and that’s partly because not enough attention is being paid. Perhaps with some background, folks will be able to spread the word, understand those who might be dealing with similar issues, and maybe, just maybe, some research will be done someday so that others won’t have to go through this. - K.A.M.

*     *     *

I stare at the half-written blog post through bleary eyes, absent-mindedly wincing & clutching at my left side as another spasm passes through. I’m exhausted, my joints and muscles ache, I feel flu-ish, and have strep throat this time around. There’s no way I can also get a photo shoot in, I don’t care if it is just a bunch of marinated noodles. Not feeling like this. *sigh*

It’s time. Time to hit “Save Draft” and work on something else before I really need to force myself to take a break and rest. The book… I should probably bust out a couple more paragraphs in that chapter. The book has a deadline; the blog can wait.

And so is the daily shuffle of all the things in my life that are Priority 1 (which seems like everything) because my body just can’t handle more than 3-4 hours of work at a time.

It wasn’t always like this. When I first started this blog, just shy of four years ago (!!!), I was a totally different person. Younger, naturally,with seemingly boundless energy. I could zip through long, demanding work days, squeeze 2-3 Pilates workouts in there somewhere, go out with friends, and come home to prepare – and photograph and post – another awesome new recipe that would surprise even me.

I miss that chick. She was so damn efficient.

Nowadays, I’m lucky if I last for more than a few hours without needing to curl up with an ice pack or just go completely horizontal because the pain has exhausted me so much I just need a break. Naptime is actually a requirement most days, and I now take more prescription meds than my mother, who is almost twice my age. I feel like I’m 98 years old and I haven’t even gotten to age 36.

So what the heck is wrong with you anyway, Poor Girl?

A lot of things.

How I got here…

I won’t go into the whole story of how all this began, since I already wrote it out so nicely on one of my other blogs. But the Cliff’s Notes edition, for those of you who don’t want to read another post, is this:

Aside from being born with a heart murmur and having to be hospitalized repeatedly in my first 2 years of life for that and a slew of other medical issues, I also have asthma, had cancer when I was 12, have hypothyroidism (which I’m still learning how to manage); PMDD (not to be confused with PMS; I wish I still had regular PMS!!!), and now, I get to add postherpetic neuralgia to the mix – otherwise known as PHN.

Before I can explain PHN, I need to explain how you get it (because not everyone does, lucky devils).

It all starts off with a mad case of shingles. That’s that weird disease that seems to fly under the radar as an “elderly person’s disease” and for which all drugstores are advertising the vaccine (more on that unfairness later). Shingles is basically the chicken pox virus that has been “reactivated”, so to speak (after you have chicken pox as a kid, the V. zoster virus travels into the nerve paths where it lies dormant for years – until something triggers it to come back).

The jury is still out on what exactly triggers shingles, but so far they’ve narrowed it down to increased age, being immuno-compromised due to things like chemo, or just good, old fashioned stress (which is what apparently triggered mine). Not everyone who deals with these things will get shingles, but the risk of getting it is much greater if you do fall into one of these categories.

After last year’s mad, frenzied move to this apartment, I got my first bout of shingles. It was awful and I had no idea what was going on with me. One day I felt like I was coming down with a cold and that I’d pulled a muscle in my back; next thing you know, I have several small volcanoes of blisters all over the left side of my torso. And they spread. And itched. And BURNED!!! And then that deeply excruciating nerve pain – pain that doubles me over and squeezes tears from my eyes, pain I can’t even begin to describe properly to those who haven’t felt it – began.

That was in March of 2011. The pain has not let up since.

The shingles themselves went away after I got my meds & topical treatments from my MD. My healing time was about average, which is common for me. How long with the pain last after the blisters heal? Just a couple more weeks, I was told, and that seemed reasonable to me. Couple more weeks of pain and I could resume my life and settling into my new place.

Two, three, four weeks passed and nothing. I had a follow up appointment and was told to give it a couple more weeks. I did so and two months later I was still feeling daily, excruciating pain. After another follow up, I was told it was official. This pain wasn’t going to go away anytime soon, if it was going away at all. This pain was here to stay.

Here to stay.

Pain. All the time. For the rest of my life.

Fuck.

PHN 101 & What It’s Like to Live with It

See, PHN is something that afflicts about 1 in 500 shingles sufferers. It’s basically chronic, severe nerve pain that is caused by the damage done to the nerves by the varicella zoster virus (imagine a wire without its plastic casing, with all those little wire endings exposed – that’s what my T1 through T3 nerves are like now). Some people with PHN only have it for a few months; some have it for years or indefinitely. And all of us who deal with it have to make a lot of changes.

I feel like I’ve had to learn to live life all over again. I hate saying that because I know that what I’m dealing with is nowhere near as difficult as having to learn how to walk or talk again. But despite other folks’ issues appearing more severe to others, this is just as hard to deal with, if not harder. Because what I’m going through is an invisible illness, and adjusting to life with something like that makes it much harder to be understood, or even believed.

And I get it, up to a point. It’s hard to explain to an outsider, or even my friends & parents, what exactly it is I feel because they have nothing to relate to. It’s not like I can pull back a pant leg and show them my scar from where they removed the cancer, or jokingly show pride at yet another walking shoe for yet another broken toe.

This is a whole other animal. I live in pain now. Live. Every minute of every hour of every day of my life since March of 2011 has been – and, unfortunately, will continue to be – marked by serious pain. Tear-inducing, gut-wrenching, gasping-for-air pain when I’m having a serious flare up, and on those days, all I can manage to do is curl up near an ice pack and cry softly until the pain subsides to a manageable level. Some days are good, some days – like today, when it will be another 106° day – I’m just in pieces. It’s excruciating, exhausting, and downright depressing.

In my case, it also comes with the added bonus of *drumroll please* recurring shingles! Yay! NOT. Feeling like you have an evil monster living inside of you, taking your nerves between its sharp, gnashing teeth and chomping down as hard as it can several times a day is already bad enough; adding all the other symptoms that go along with an actual shingles outbreak, including having to quarantine myself so I basically have no social life left – that’s just cruel.

Treatments?

That all sounds like it sucks. Isn’t there anything that can be done?

Oh, sure there is. On the surface. And if it’s out there (and not ridiculously expensive holistic or acupuncture care, which I’d try but truly can’t afford without selling a kidney), I’ve tried it. I’ve seen 4 doctors for this, have had every blood test imaginable, and they’ve all ruled out anything physiological as the cause for my immune system not being able to fight anything or help me heal. Nothing except for stress, and no one seems to be paying attention to how to treat that (and I think that should be the main focus, but I don’t have a degree to back up my theory).

Med-wise, I’ve tried it all: Gabapentin, Amitryptilene, Nortryptiline, meds whose names I no longer remember – all 4 doctors I’ve seen for this have tried everything they can think of. Lidocaine patches, cayenne patches – tried ‘em. They help some, but it’s like taking a baby aspirin for a migraine, so there’s not much help that comes from these.

The other problem is that the side effects of these meds are often times worse than the issues they need to treat, so I now have major brain fog, muscle issues (thankfully I stopped taking THAT med!), and other stuff I didn’t have before. So if the pain doesn’t exhaust me, all the extra crap in my system will take care of that just fine.

What about the vaccine, Poor Girl? I see signs for those everywhere.

Don’t even get me started on that one. I see that sign everywhere too, and all I want to do is throw rotten tomatoes at it. The FDA has only approved Zostavax for adults 55 and over (it was for just 65 & over, but they finally reduced that a few years ago), and there is no way – NO way – to convince pharmacists to bend that rule in the slightest (which I get; their job is on the line. Sadly, so is my health). So, for those of us – and there are a LOT of us, unfortunately – who are in our 30′s and suffer from PHN and/or recurring shingles, that is definitely not an option.

Which is pretty lousy, if you ask me. By the time the FDA gets off its butt to do the trials needed to help those in my age bracket, there will be many more of us with this debilitating disorder, and that seems exceedingly unfair to me. Not like it’s better to have this sort of thing when you’re older; but to have your life slow down so drastically when you still have so much to give – it’s really hard to reconcile within oneself. In fact, it’s the hardest part of all of this.

Adjusting to a different life…

I’m lucky that a lot of my past work experience has been working with folks with disabilities. Working with some of my clients gave me a greater insight into what it’s like to deal with a disability, not to mention the trials & tribulations of navigating the system. Now that I have one of my own, I see with even more clarity the difficulties associated with having a disability. For me, a lot of them have been centered around adjusting to the idea of it and to a different kind of life that is poles apart from what I was used to.

But there have been upsides, too. I’m now even more sensitive than I used to be to those who have disabilities, particularly those folks with “invisible” conditions such as neuropathy, fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, lupus, etc. I won’t get into it all here, but trust me, getting people to believe you “have something”, just because you take the time to look good so you don’t feel so crappy, is hard.

It’s also given me something new to talk about that needs to be talked about (like eating well on a budget, tee hee), and I hope this post sparks some sort of discussion about some of these issues. I know I’m not the only one in this age bracket (let’s say, women ages 30-45) who’s going through some difficult medical situation, but I feel like we kind of get forgotten by researchers and practitioners. If our voice could be just a little louder, perhaps we can be heard and maybe relief for some of us won’t be such a pipe dream.

Lessons learned, lessons to be learned…

So that’s it, folks. There’s the long rambling story about what I have and how it affects me. To say that it’s been a difficult journey is an understatement. But as much as it sucks, it’s definitely proven that I’m waaaaay stronger than I ever thought I was. Except for a couple tattoos and my nose piercing, I’ve never been fond of too much pain (not that I was fond of that pain either, but you know what I mean); to know that I can actually push through this and still hold down the blog, book, job, etc. is nice, though there are days I feel like an absolute failure because I couldn’t finish everything on my To Do list.

But then I realize… is that really so bad? Is it the end of the world not to have every single task crossed off for that day? Is it worse than listening to one’s body and knowing that slowing down is going to be way more beneficial than overdoing it and being down for several days?

The answer is: No.

Oh, the Type A gal inside me will argue against that, as will many of you who read this. But having to slow down so much has forced me to take stock and reevaluate how I do certain things. And as much as I’d like to deny it, I know that pushing myself so hard is not the good thing I once thought it was. Not anymore. Pushing myself to do better, to finish things, to make even sexier food porn than I thought I was capable of – that’s all okay. Pushing myself to do the jobs of 2-3 people, maintain a blog, write a book, worry about elderly parents I wish I could afford to care for properly, worry about debt & bills & collectors & constant shut-off notices, all with a chronic illness – not so much.

Stress is killing me. I know it is. I just need to find a way to rein it in, and hopefully once things like debt and bills and collectors and shut-off notices are a distant memory, I’ll be able to do so. For now, I just need to find some balance in my life, so I can stay focused on the necessities, but also remember to take care of myself and my health before anything else.

It’s a balance I’m striving hard to find every day. And I can’t wait to share the good news with all of you when I finally find it. : )

written by

singer. writer. artist. champagne taste, 2 buck chuck budget. good cook. kooky. chocoholic. patron saint of cats. talker. listener. thinker. sometimes to a fault.

63 Responses to "Living with PHN (and my other 7.2 million maladies)"

  1. Ju says:

    Wow, I didn’t really know about PHN before… :( I’ve got permanent nerve damage / pain for the rest of my life too from a tethered cord in my spine, but I think it’s a lot more bearable than this here. Stay strong girl! You were an inspiration for me even before I read this post. :)

    Reply
  2. De says:

    I can relate, especially to this part of your blog “Stress is killing me. I know it is. I just need to find a way to rein it in, and hopefully once things like debt and bills and collectors and shut-off notices are a distant memory, I’ll be able to do so. For now, I just need to find some balance in my life, so I can stay focused on the necessities, but also remember to take care of myself and my health before anything else”. I’m a diabetic with all the complications and stuff that goes along with it. Everyone thinks that all I have to do is take my shot of insulin and everything is a okay. But that’s further from the truth then they all know. My knees hurt all the time, I get leg cramps constantly, I get migraines, and the high and lows of my blood sugars is horrible each day. I just got over a bad abdominal abscess that’s a side affect of having diabetes. No one seems to understand me or what I am going through. Would you mind if I used it to describe exactly how I am feeling? You said it best and I can’t find a better way to say it myself.

    Reply
    • Kimberly Morales says:

      Oh, De, I’m so sorry. My father suffers from diabetes and all the complications it comes with (renal failure, vision problems, stroke), so I know that it’s not easy to maintain, especially after a certain point. I think so many folks have heard that diabetes is manageable with diet & exercise that they forget this doesn’t apply to every diabetic. I can’t imagine what that must be like, and hope I don’t end up like so many of my family members who have developed it after age 40. I know it’s a difficult disease, and I wish you all the best in trying to maintain and make the best of each day.

      And you can totally quote me on the stress & healing part. Sometimes it’s not always easy to express how we feel (which is why I’m a better writer than speaker), so it’s nice when you can find quotes that can do it for you. Good luck to you and be well! :D

      Reply
    • Carlyn says:

      Kimberly,

      I come to your website all the time for easy, delicious and inexpensive recipes. I have my own blog about living with type 1 diabetes, and was writing up a recipe on it today (OneUnitAtATime.wordpress.com). I referred to your blog as one of my favorite resources.

      As I was making sure that my PGEW link worked, I stumbled upon this post. So many of the things that you mentioned.. the stress.. the invisible illness, really hit home for me. As DE comments above, it’s not easy.

      Kudos to you for working to raise awareness of living with PHN. I know it’s tough, and at times almost unbearable – but just know that we are all here, doing anything we can to help keep your chin up :)

      Reply
  3. Crystal T. says:

    Hi Kimberly,

    Thanks for sharing this information about yourself. You are an inspiration. I can relate to this post all too well. I am 27 and have been diagnosed with Multiple Sclerosis (one of those silent diseases) and many of the symptoms are similar to those you experience.

    I want to encourage you to lessen the stress in your life. A way to do so is to change your perspective and expectancy of some things. Give trials positive energy. Stress is a killer and well if you don’t have your health, what good is anything else?

    Also, I have found much symptom relief from juicing raw organic vegetables and fruits, as well as eating raw foods. I’m no doctor but I highly recommend it as I have definitely experienced a decrease in the number of flare-ups and intensity of them. There are many raw food gurus on YouTube that you could research.

    Anyhoo, I’ll pray for you and wish you peace.

    Reply
  4. cherie says:

    Kimberly thank you for sharing your story in such a thoughtfully written post. There are so many invisible disabilities – it’s always good to have a reminder to never assume.

    I hope that you can find a way to get some improvement. I had shingles when I was 22 – it’s incredibly painful and I can’t imagine it never going away – dreadful. I think stress always makes it physical issues worse – therapy might help you find some coping mechanisms for the stress, and also for the chronic pain which is a tough thing to integrate into anyone’s life. I know money is tight but I’m betting there are some low or no cost options.

    Either way – I’m impressed that you’re able to keep your chin up so well – you’re amazing!

    Reply
  5. Maggie says:

    I’m so sorry that you are living in such pain. I have two suggestions for you:

    Hypothyroidism can be classified into two subtypes:
    (1) Your body doesn’t make enough of the thyroid (synthetic thyroid is the usual treatment)
    (2) Your body doesn’t convert enough T4 to T3 (not often recognized – Armour Thyroid treats this). Stress can exacerbate this.

    I’ve had hypothyroidism for > 15 years and after a particularly stressful year I struggled with brain fog. This wasn’t relieved until I switched doctors and he put me on a combination of the medicines listed above. Armour Thyroid is tough to calibrate which is why he has me on a combination. It has made all of the difference for me. I’m still struggling with fatigue from time to time but overall I’m a different person.

    Investigate Dr. Junger’s regimen ‘Clean’. It’s affordable and easy to follow.

    Reply
  6. Josh says:

    I have fibromyalgia and I could have written your post, albeit without your talent for putting words together elegantly.

    The “invisible” aspect of the illness (and its ilk) might be the worst part. You get so tired and demoralized of hearing the words “you don’t LOOK sick” that you just want to isolate yourself from people and the world. Anyone who copes with an illness as severe as the one you have (and the others you mentioned) has my utmost respect. They might be the most courageous people on the planet.

    Reply
  7. deb says:

    i love love love your blog and i am so sorry to hear about the pain and other health things. have your or are you able to try yoga? it’s done wanders for me and my stress level.

    Reply
  8. Kate says:

    Oh my goodness. I don’t really know what to say except I hope you find physical and emotional peace as soon as possible. I admire your strength (and cooking skillz). Thank you for sharing this story. Your story is a good reminder that we don’t always understand what the people around us are going through under the surface. It sounds trite to say this in light of what you deal with every day, but really, I hope you feel better soon.

    Reply
  9. CJ :) says:

    Kimberly, you are an inspiration. I was diagnosed with manic depression when I was 17, and now at 46 I take care of my mother and my grandson, have a houseful of young men in college, hold down a full time job and a marriage. People ask me how I do it, and I reply that I just do. I have no choice.

    As far as managing hypothyroidism goes, once your medication is straight it is fairly easy. Lithium destroyed my thyroid years ago, and it took some time to find the correct dosage, but my thyroid has been stable for quite a while now.

    Wish my moods were.

    If you are taking Synthroid or levothyroxine just don’t take it with calcium. Screws up the absorption.

    Chin up, dear, and take care of yourself. Concentrate on finding ways to allow the stress to leave your body – yoga, meditation….I also find the occasional primal scream to be effective. :)

    Reply
  10. Leanna says:

    That you can do everything you do despite all of the potential roadblocks is an inspiration. I wish you the best, and hope that you can find some degree of relief and a reduction of stress in your days to come. Like everyone else, I want to offer advice or help, but I wouldn’t want to do so at the cost of appearing to know it all or believe that a simple lifestyle change will definitely help. Still, I hope some or any of the suggestions given so far can help you find some relief. Thanks for all that you do. I like this quote: “Is it the end of the world not to have every single task crossed off for that day?” As a person who gets very stressed out about not being able to do it all, that’s definitely something I can relate to. No, it’s not the worst. The most important thing is to live and enjoy life, and find blessings in the little things… at least, that’s what I’ve come up with so far. :)

    Take care and do what you must!

    Reply
  11. ashley c says:

    I can relate to what your going threw. I developed post surgical neuropathy in my thigh from cancer surgery. I also did the horrible gabapentin and am now on nortriptyline. But I have had the most relief from cutting wheat and gluten out of my diet. It has made a world of difference and I would never go back. Have you considered trying that? I noticed a change in 3 days.

    I wish you the best of luck on your journey.

    Reply
  12. susan says:

    ah yes! I had shingles too. the nerves are still all wonky in that part of my back but thankfully not to the level of PHN. I have noticed flare ups with stress AND on hot humid days! you totally have my sympathies!!

    Reply
  13. Kent says:

    Kimberly,
    Thank you for sharing your creativity and passion with the world. Your blog is amazing. Your strength is an inspiration. Keep after it!

    Reply
  14. Steph says:

    Kimberly, I’m sorry you are having an extra tough time right now! You put it all into words so well. I find it hard not to resent the extra bandwidth it takes to deal with chronic health issues, especially pain (I’ve had some similar medical issues since my early 30′s), and fact that you are doing so with grace, and with the drive to keep chasing your dreams, is very inspiring!

    Maggie and CJ gave you good Thyroid advice there! I can vouch for the added benefit of supplementing synthetic T4 with T3 — after several years T4 alone just wasn’t getting the job done.

    Crystal, I hear you about the juicing – it helps me a lot! Now I’m off to research Maggie’s suggestion for “Clean”….

    Reply
  15. Von says:

    I have dealt with a huge benign spinal tumor for the last 12 years; didn’t know that’s what it was until recently. Early on doctors thought it might be hypothyroidism and fibromyalgia. So, I’ve been through the ringer with different docs poking and prodding at everything and I sympathize with everyone here. Anyway, recently went through spinal surgery and radiation, recouping from that now. Lost most of my leg function in process, but I’m still hopeful.

    I deal with chronic pain as well, mine is in my legs from the nerve compression. I’ve had to change the way I eat and I’m glad I have. But lentils and sweet potatoes are on my cheap eats list for healthy, non-inflammatory foods. I eat a lot of fruits and veg.

    Anyway, let me know if you need me for anything. Any painting or cover art or whatnot for the new project. Hang in there. Take it day by day and know you aren’t alone. :)

    Reply
  16. Ally says:

    Kimberly, you are a shining beacon of inspiration. Thank you for sharing your story with us. I had looked into PHN when you first mentioned it in a previous post… I cannot begin to imagine how difficult it must be to push through everyday, particularly when you have to deal with ignorance about diseases and illness that are not visible to the naked eye. I have an abnormal type of narcolepsy called hypersomnia, finally diagnosed at age 23 this past year, but prior to that and getting on Rx, had to sleep 11+hrs night, drink 3-4 soda + 2 cups of coffee and take at least 1 nap to be able to at all efficient for the 10 or so hours I would be up. It seems like a cruel joke that on top of your own health problems you have to explain yourself to others that just think you are lazy or making things up.

    Your blog has been such a brightness in my days. I love cooking, but I am often too poor or tired to do it. I see and read about your struggles and perseverance, see your creativity and and I aspire to be such a trooper.

    Wish I could offer more than online support, but alas. Know that we all support and admire you (and love your recipes!). I tell everyone I know about your website, and will continue to do so in the future. Stay strong (and when you don’t feel like staying strong, curl up and take the day for you, you certainly deserve it).

    Reply
  17. Sherry Bailey says:

    I agree with everybody, your story is inspirational, but I hope you find solutions so you FEEL better — to heck with “inspiring” everyone!!!

    I had shingles too, but mine was caught very early by a bright nurse practitioner to whom I constantly send blessings. Because she figured it out with minimal symptoms to go on, I got anti-virals in time and had a relatively mild case. (I’m over 55, so maybe it was Zostavax or something related to it — can’t remember any more. Can your doctor/s find you a clinical trial for the under-age-55 tests of that? There ought to be a way to try it…) Let me say to anybody who hasn’t had shingles that by “relatively mild” I mean that the mass of chicken-pox blisters covering my back and left side around under my breast only lasted maybe 6 weeks, with daily medicating and gauze bandage changes and weeping… With tolerable pain and minimal misery. Still not fun, but nothing like what Kimberly describes. So if you ever had chicken pox, you really need to be careful. You do NOT want to experience it! I’m sure mine was stress induced, too. (My husband divorced me. I was literally stunned.)

    Best wishes, Kimberly, and do all those de-stressing things, including abandoning this blog when you need to. We’ll understand.

    Reply
  18. Robbie says:

    What can (we) I do to help you? I have had my share of this physical stuff called life.
    I am on the downhill slide but I have total and complete peace, even joy. If you can believe
    in God, it’s all yours in Christ Jesus. Your ciecumstancces may not change but YOU will change!

    Love, Robbie

    Reply
  19. Coryy says:

    Hey there! Hang in there. I went through (and still have) fibromyalgia, depression, and had several autoimmune issues going while I was surviving an abusive marriage. Shingles was one of the many indignities I faced one year, along with PHN. PLEASE, PLEASE, PLEASE, do anything short of selling a kidney to get to an acupuncturist. Because you’ve suffered so long, it might take several visits to correct, but it was the ONLY thing that has every helped, and it did eventually go away (and MUCH faster than I expected). I also suffered a broken pelvis that re-fused with my nerve caught between bones, and the resulting nerve pain was devastating. That, too, was helped immensely with acupunture. Please try it. Western medicine doesn’t know how to help damaged nerves. I know this sounds like magic, and it’s atrociously expensive, but I just got back from my acupuncturist and was wasting time on pinterest and clicked through…I figure there must have been a reason I read your story.

    –Cory

    Reply
  20. gina says:

    Mindfulness meditation for pain relief [sound recording] : guided practices for reclaiming your body and your life / Jon Kabat-Zinn
    You can buy at Amazon and it is available at the library. Scientific research indicates that meditation works as well as pain meds. Google scholar it.
    You can find Kabat-Zinn guided mediations on YouTube.
    Good luck

    Reply
  21. starshipexercise says:

    My grandma had shingles, and we had a Dr of Chinese Medicine do shiatsu on her. It was the only thing that worked. Her primary care doc had recommended booze. I know it’s expensive, but so is missing out on your life. :(

    I hope you get relief from your pain soon.

    Reply
  22. TheBeerLady says:

    I have absolutely no advice to offer, I just want to leave you with a virtual hug. As someone with fibromyalgia (among other things), your invisible illness comment hit home. Sometimes, the ‘I know I don’t look sick’ part is harder than the pain and fatigue itself. And I have to admit, while I really wouldn’t wish it on anyone, there are times that I would dearly love to be able to give people a temporary case. Just a taste of living life this way….

    Reply
  23. Danielle says:

    Thank you so much for sharing about your life. I happened across your blog through a post about your recipes on Pinterest…but I’ve founds so much more here. I know about Shingles, both my mother and aunt had them really bad, but I’d never head or PHN. I’ve learned a lot tonight. I also wanted to share that I understand the frustration of invisible illnesses. My daughter, who is only 3, has an incurable brain abnormality called Chiari Malformation…basically part of her brain (her cerebellum) herniates down out of her skull and into her spinal column. She gets headaches from the restricted flow of cerebral spinal fluid. A lot of doctors aren’t even familiar with Chiari. She looks “fine” and acts “fine” (most of the time) but she’s not “fine.” She has good days and she has horrible days…and, like with you I imagine, people don’t always understand why we can/can’t do something or why we cancel plans last minute, or don’t even make plans because we don’t know what the day will bring. I’ve only ventured a little into your blog, but I’m looking forward to checking it out more…and I’m glad I happened upon it. Thank you for sharing a bit of your life.

    Reply
  24. Melissa French says:

    I think chronic pain must be the worst thing to deal with. My husband has chiari malformation and damage to his spine, his pain is so bad he got shingles and didn’t even know it.
    I used to worry a lot, but I’ve found that there’s a difference between stressing out and constructive ponderings. I have so much more to stress about now, but I choose not to. Why work myself up until I can’t sleep when that issue will still be staring at me in the morning?
    I’m still a high anxiety person, but I feel much better now that I can recognize when my thoughts are turning emotional and shut it down. You seem like a happy person and I think that’s the key, you have to choose to be happy and do the best you can with the rest of your moments. You will always have challenges, it’s how you react to them that counts.
    Happiness is:
    50% Genetic “Set Point”
    10% Circumstances (home, family, money…)
    40% Intentional Activity (what you do and how you choose to do it)
    You have absolute control over that 40%!
    Your blog is in my top five, don’t think that your efforts aren’t appreciated!

    Reply
  25. Andrea says:

    Hi! I too have a hidden ailment, Ulcerative Colitis. Managing Stress is a huge part in preventing my flares. I know our diseases manifest themselves differently, but http://www.digestivewellness.com has a good section on managing stress, and a Facebook with daily encouragement on lessening stress. They also have a huge section on diet, as that is the best way I’ve found to reduce the impact of the disease. I’m not sure if the diet will help you with the pain, but some of the recipes are really good! Best wishes on your journey.

    Reply
  26. Lauren says:

    I am so sorry about the hardships you have been dealt! I got shingles on the left side of my face during the last month of my pregnancy, and it is without a doubt much worse than giving birth! I at least had an epidural as an option for THAT pain. Anyway, I for one am furious that the shingles vaccine is not being offered to younger folk like us. I know of at least 5 people in their 30′s that have had the Shingles. It really does need to be available for anyone who wants it. I think your case proves that it can be a life changing illness, and for someone so young to have to suffer for the rest of their life, it is just criminal not to give us 30-somethings the vaccine! I may be getting an itch to start up a movement to get that changed.

    Reply
  27. Erika says:

    I’m so sorry to hear about your struggles. I have been a long time reader, but this is my first post. I had to share my husband’s experience on the off chance that it might help. He had some medical issues that the doctors were unable to diagnose for a long time. It turns out that he actually had severe allergies, but instead of the usual sneezing, itchy eyes, etc., he had inflammation in his lungs that caused him to have really low blood oxygen levels (so he was tired _all_ the time). His body was so busy fighting allergens that he ended up with shingles. He has been getting allergy shots for the last couple of years and is basically cured of his allergies. Just in case your immune system has been compromised due to allergies, I would recommend getting a skin allergy test since you may be manifesting in a nontraditional way. You are such an inspiration. I wish you the best.

    Reply
  28. JK Patt says:

    Oh my goodness. I am so glad I found this blog. I had a bought with shingles in february and it was absolutely the worse. It was on my face and literally it gave me terrets. Everytime a burst of electrocuting pain would hit me I would scream out some kind of curse word.

    Wierd thing was that my husband had it 2 weeks before me. When I went to the doctor and told her about it she said, “well it looks like you have it too.” But he can’t give me shingles. She said a person can’t give shingles to another person, just chicken pox if they had never had it. I had already had chicken pox so it wasn’t that I caught chicken pox from his shingles. Just a weird coincidence she said. How can a doctor not have an answer for something like this? It couldn’t be just a coincidence. Am I strangely empathetic?

    It is so STUPID that they limit the age of the vaccine to 50 and older. I am a bit of a hypochondriac and I would have jumped on that one at my last appt if it was offered. And you are right, you see these stupid adds everywhere with elderly people on them and I want to scream, “HEY! I had it and I am 29 freakin years old!” Throw us a bone FDA.

    I had no idea about PHN and understanding the kind of pain that comes with shingles, I am so sorry that you go through that every day.

    Julia

    Reply
  29. Jess says:

    I can relate. I suffered a TBI (traumatic brain injury) while at work; after 2+ years of minimal progress I was diagnosed with narcolepsy triggered by TBI that will effect my healing progress, sleep….life.

    I was 19, in good health, lively, free. I had bought my first car 2 weeks before the accident (I haven’t been able to drive because of TBI+ Narcolepsy, and probably won’t ever drive again), I had a decent paying job, I was in college…..now I am considered disabled.

    It’s difficult, especially being so young and not having anyone understand. To feel embarrassed when you fall asleep in class. Or to feel disappointed in yourself and hurt because you don’t remember the day you got married.

    Even worse: when everyone makes a joke about how I sound like the lady from “50 first dates”. When people call you lazy. When people think your husband is crazy for being an awesome person and sticking it through.

    People tell me to just take the meds because “I will be all better”…but all it is, is a stimulant that masks half of the issue and makes the other half worse, causes addiction, psychological changes, etc. because it acts just like cocaine.

    It would ruin my life. At least right now I am as in tune with myself and my family as I am ever going to be and I can find happiness and joy without drugs. My disability doesn’t prevent me from living this awesome life…it just changes how I live it.

    Reply
  30. Laura says:

    Have you ever heard of a neurostimulator? It’s a device that is implanted in the soft tissue of the abdomen. It sends electrical currents to electrodes that have been placed on the covering of the spinal cord. I know that sounds scary and invasive, but it’s actually just an overnight stay in the hospital, and many institutions perform the procedure as same day surgery.
    The stimulator provides a signal that travels to the brain faster than the signal pain produces. For many patients, this has given much relief to nerve pain. Some patients have said that it feels like a cool pepperminty kind of feeling. Which all of them agree is far more tolerable than the intense burning pain of neuropathy. It does not cure the pain, it kind of changes your brain’s perception of the pain.
    I worked for a neurosurgeon who implanted these devices. I saw so many people, who’s lives had been completely devastated by chronic pain, finally get some sort of relief and begin to enjoy living life again.
    Good luck to you, and prayers for healing!

    Reply
  31. Heidi says:

    If you haven’t already, you should apply for social security disability. You have been to the doctors so you have a medical track record and you are good at describing your symptoms and how they affect your daily life. If approved, you would also get health insurance benefits.

    Reply
  32. Mara says:

    My grandma is just recovering from a shingles flare, also had intense pain and we were considering to try a nerve block if the pain did not improve, she is responding to medication but regional nerve block is an option that you could try, there are pain specialists (anesthesiologist) who can perform this procedure in PHN patients. BTW I think your blog is genius!

    Reply
  33. john says:

    Kimberly, thanks for sharing this post. i’m a first time reader…not really sure how i even ended up on your website, but i look forward to exploring your recipes. I can not imagine what your day must be like with PHN, especially combined with your other ailments. You say that you’ve “tried everything that wasn’t ridiculously expensive holistic or acupuncture care” but i saw no mention of chiropractic care. i am in my 3rd (of 4) year of chiropractic school, and i’ll be the first to admit that i had no idea of the wide reaching effects of a chiropractic adjustment until got into the program. it is not just about back and neck pain… I would highly recommend that you see a competent chiropractor soon and regularly…i’ll be happy to help you locate one in your area. This recommendation is not just to help with PHN….. i’ve heard countless testimonials, first hand, from patients who had massive improvements with their asthma, hypothyroidism and a slew of other ailments that might seem completely unrelated to spinal alignment. It all comes down to having a clear nervous system…one that can allow the brain to communicate with the body without interference thereby allowing the body to function at its optimum potential.
    If you feel like you’ve tried everything else and have still yet to see any relief, do yourself a favor and at least give chiropractic a chance… and if you’ve already been to a chiropractor and you weren’t impressed with your experience, please keep in mind that just like with every other skill, there are those out there that are better at it than others. And like i said, i’ll be happy to help put you in touch with a competent, skilled chiropractor in your area. thanks for your time and have a great day.
    ~john

    Reply
  34. Stephanie says:

    Kimberly,
    I’m curious, does your pain stem from your spinal cord? If so, have you heard of a Spinal Cord Stimulator? My mom had one implanted last year (spinal cord tumor removed in the 80′s and nerves left exposed–terrible, debilitating pain) and has had success with it. Basically, it intercepts the pain signal the nerves send to the brain, and sends another signal to the brain leaving you with a tingling sensation of sorts instead. It requires a lot of testing and psychiatric approval before insurance will cover it, but my mom is definitely in a better place, pain-wise, now. Thought I’d pass along this information to you.

    Reply
  35. Casey says:

    I completely agree with all you’ve said here. I’ve had PMDD and chronic depression for as long as I can remember. I had (very) early stage cervical cancer at 28. Right around 30 I developed non-allergic, allergy like responses to peanuts and dairy. I’ve had sinus problems, causing migraines, dizziness, nausea, and chronic sinus infections for about 2 years. Three PCPs, and two ENTs, and still no idea what’s wrong. Considering no one can actually see any of these issues, and taking into account how good some of us get at pretending we’re ok, it’s difficult to get people to understand. Shingles is something, thankfully, I haven’t encountered yet, but at 27 I contracted herpes (yay me). I know herpes, chicken pox, and shingles are all caused by the same virus. The fact that they can develop a shingles vaccine, but not a chicken pox or herpes vaccine has also killed me. I did some research into alternative treatments after the troubles I had. My doctor considered hospitalizing me for the initial outbreak (his nurse said she hadn’t seen it that bad in 20 years). One of the best things I’ve found is L-lysine. Viruses feed on argentine, and lysine counteracts argentine. Topical lysine is amazing for flare-ups. I’m so glad I stumbled on your blog. It’s nice to be reminded that we’re not alone.

    Reply
  36. Sharlene says:

    Thank you for sharing your story . I am 44 and have now had shingles 4 times at the ages of 16,32,34, and most recently again 6 months ago. At 16 I had it on my stomach, which left scarring because I didn’t go to the doctor. Stress was what brought it on. At 32 I had an outbreak on my forehead, was given the anti viral but it did nothing to lessen the severity. At 34 I got another bloody bout once again on my forehead and eye area 7 weeks after undergoing a hysterectomy. Dr told me it was due to the stress my body was suffering from the shock of the hysterectomy. This time I was given a different anti viral but yet again with no effect. PHN still flares up in that area if exposed to cold temperature or cool breeze.
    This March I copped it again ,after working 21 shifts in 12 days, with split shifts morning and night most days. This time on my hip line and extending across my lower back. You should have heard me curse the dr when he diagnosed me for the 4 th time. I have now been trying to cope with the daily pain that leaves me unable to sleep soundly, and takes my breath away on a daily basis. I am on an anti convulsants, anti depressant, and am now just started taking tramal SR in an effort to control the pain. I work in aged care and most days I limp heavily and walk worse than my elderly residents. .
    It is a constant battle dealing with the fatigue from coping every day with the pain, and i have had to give away some shifts because the body just cant handle . Often I just freeze when the stabbing pains hit and it feels like a blowtorch going through your back. and nana naps are essential most days. There are many days when I find myself having to alternate between sitting and standing for short times as to do either for too long causes me more pain.
    Although I am hopeful it may disappear one day, realistically the dr and I both feel that it may be a permanent chronic condition. And the fact that I have already had it 4 times( which apparently is not common) has the dr already being of the opinion that it will probably re occur in the future again.
    The chronic pain doesn’t help with the depression, and I am still thinking of yoga or meditation as another aid.
    But I try to keep a smile on my face and stay chirpy even though there are plenty of days I just want to curl up into a ball and disappear from the world.
    The invisible outward signs makes it hard for some people to believe you are suffering on a daily basis, although I am lucky to have the support of my husband and children who have seen me at my worst.
    Even my mother doesn’t understand and tells me I should be over it by now.
    But I know I shall grow stronger for the challenges I face….

    Reply
  37. Anne says:

    I have been diagnosed with Endometriosis and I suspect I have IBS too. My Endo has flared up this week, and I should have finished bleeding and cramping last week but I still have spotting, bloating and cramping. The only thing I take for it is painkillers as I don’t want to try Depo Provera and I don’t get on with the cheap Pill. We also may decide to have another baby soon and it took me a year to become fertile last time after being on the Pill.
    I empathise with you about the PMDD, my Endo makes my PMS worse then ever.

    Reply
  38. Jen says:

    Sorry I don’t want to read through all the comments to see if anyone said this, but have you asked your doctor about getting the vaccine? I can understand a pharmacist saying no, but your doctor should understand and might be willing to bend the rules.

    I understand your plight, I have chronic mononucleosis. An infectious disease specialist literally told me I was getting older (I was 20 at the time) and needed more sleep. I went to bed at 8 pm and woke up at 10 am and have many naps, something was wrong. My doc found there was something wrong with my blood and I was immuno-compromised (thanks for this post, now I’ll look into getting the vaccine!) and that pneumovax (the vaccine for pneumonia, meant for those 65+ and pretty much a one time deal) was known to help. I get it every year (terrible side effects but worth it) and have since switched docs and haven’t had trouble with them saying i was too young. So it’s worth a shot if it might help?

    Reply
  39. Chelsea says:

    Please try out MMJ. Maybe in edible form, which would be perfect for you and your desire to cook. It helps with chronic pain AND stress and could be a viable supplement to your pain management. Quite possibly it’s also much cheaper than the chemicals the doctors are pumping into you.

    Reply
  40. Jolene @ The Alabaster Jar says:

    I sooo totally understand! I’m a recovering Type A personality because of my chronic illnesses! The invisible illnesses, the new normals, the excruciating pain, the my life is over as I once knew it, type of life. Oh, and let’s not forget the disgusting diets and supplements!

    I just wanted to cry when I read your story because it was so similar to mine. Not the same issues-my virus was different, but I get it your pain, frustration, and despair.

    When you’re sick and tired of being sick and tired…..head over here and check out what I wrote in this guest post, http://www.joleneengle.org/2012/09/9-things-about-my-sex-life-that-id.html. I listed my current Dr. in it and I gotta tell you, my life has been transformed! And, no I don’t get paid for saying any of this. I just have a heart to help others.

    Reply
  41. Katie @ peacebeme says:

    I have a painful inflammatory nerve disorder called Mononeuritis Multiplex. It can be caused by several things but many times they don’t know the cause (as is the case with me). I KNOW how hard this can be. The limitations and disability are worse than the pain. I was heartened to read your story today. Thank you and hang in there!

    Reply
  42. Katie says:

    I urge you to read Wheat Belly, by Dr. William Davis! (Or go to WheatBelly on FB, or WheatBelly.com)!
    You will find your CURE there. Once you start reading all the testimonials (and the book) you will be a believer, (and no more shingles, etc., once you ditch the wheat/grains/sugar)!!!! PLEASE take the time to check it out….

    Reply
  43. Holly B says:

    I’m so sorry. It really does stink to have an invisible illness. I was diagnosed at 15 with Epstein-Barr Virus. 20+ years later, it doesn’t get better. It changes. It grows. And nobody else can sympathize. There is an endless loop involving depression and anger. No one believes you. Doctors think you’re making it up. The doctors who don’t are too expensive, not covered by insurance. Keep up the good work. :^)

    Reply
  44. Comet says:

    I have T1 diabetes and have lost a leg and part of a foot to this–and not in the traditional ways either. I also have had nerve problems since I was a kid and since I encountered a tropical plant that destroyed much of my hand nerves. Neuuropathy is a “breeze” compared to what my hands feel like some times. My daughter was told that I am an “example” of the “Worst kind of handicapped people” because unless you KNOW what is “wrong” with me you don’t SEE what is “wrong” with me!

    I find that “bizarre”: but then again when I do venture out wearing shorts and my prosthetic leg–almost never!!!—I get stared at and everybody has to tell me either that I am “brave”–um, no I am just alive like the rest of us—or they tell me the stories of their friends and family members who are amputees–and presumably ALSO “brave”. The looks that I get when on a motorcycle are certainly worth hearing a few stories. And sometimes I can even tell them something to help or some device to use for a situation.

    Nows heres one thing that HAS helped me–and might be worth looking into. For years I was diagnosed as being severely LOW in Vitamin D. Clinically diagnosed not some “Oh I think I need some vitamins and D looks good” sorta way. Repeated tests and repeated high doses of the 50,000 unit long acting Vitamin D did–nothing. I went lower still. I was on the 50k dose once a month for a few months–lower! Once a week for months–lower. Twice a week–nada. I happened to see a book about mega doses of Vit D and decided—what have I got to LOSE? I had a LOT of problems caused by this and my MD’s were nice but clueless.

    So I decided to do things the only way I know how–jump and look later. I got hold of Puritan Pride 10,000 unit capsules and started taking 5 of them a day–the “clinical dose” but in a short acting format. Now—I will not say “I am cured”. But I will say—I am MUCH improved. The nerve pain is MUCH LESS. The severe bowel symptoms I had—did you know you can get neuro problems in your bowel? I didn’t but I do now!—were much improved. Skin issues were much improved. And for me one of the best things was that my glucose numbers went WAY DOWN–and have STAYED DOWN.

    But the nerve pain is the thing to address for you. I have read a lot about this now and it does seem that we in our “modern life” are under such bombardment from all sorts of chemical and environment changes that our “systems” don’t quite know HOW to handle some of them and freak out. One freak out is your endocrine system going haywire—hence some diabetes and also MS and related diseases. One very seriously well investigated theory is that these things go nuts because of the severe lack of Vitamin D in our lives. We slather on sunscreen and cower in our houses, run to the car, run to the office, run to the Mall–and even the most “outdoorsey” of us might not be able to PROCESS the Vit D we DO manage to get. And we didn’t evolve to live where we don’t get tons of sun. I am the whitest person next to an albino you will ever meet–but one of the most often diagnosed groups with severe Vit D deficiency is African people–from whatever continent they live in. So this can be happening to ANYONE. The Vit D we might get in our food is almost impossible for our bodies to process. IN Europe they have done huge long term studies that PROVE this and that PROVE the cheap Vit D can make a HUGE difference. And not to be all “conspiracy theory” but since this IS a cheap and easy to get item no one one is making the big bucks off of it and so no one is making a priority of it either except people who have been helped and some MD’s. And not just the crack pot ones either!

    I noticed a big difference when I ran out of the D before my next delivery and I will NOT do that again!

    Oh–and I think the method people are telling you about to obtain the shingles vacc shot is called “Off License” or similar—this is when an MD prescribes a drug for something it has not been approved for after it has been approved for–some other use. So you might have to “shop around” but you probably CAN find an MD to get it for you. And if you can’t pay for it then you can apply to the maker for a special drug benefit to have them get it for you for a reduced or free fee. Around here (NY) the drug stores have only recently begun to give these sorts of shots and a lot of them are unsure exactly how these things work. You might want to CALL the company that makes the vacc and ask them how to get it. Any MD can prescribe any drug for any purpose–as long as the FDA has approved it for SOMETHING.

    Reply
  45. Kim Heller says:

    I am so very glad you posted your story. I have family that suffer with invisible illnesses and I never truly understood what they were going through and would often downplay it. My sincere apologies for that. I now better understand and will be much more understanding.

    My 16 year old nephew who plays football has been experiencing some yet un-diagnoised health issues. I was surprised to see how un-caring the football team was- they all had plenty of suggestions of things he should do or try but mostly just wanted him to immediately get back up to his usual level of play. Even his parents downplayed his issues. I begged the parents to seek medical attention for him. They finally did and his blood work came back with some concerning issues. Again his parents seem to be downplaying the importance of finding the underlying problems and then working towards solutions.

    Thank you again for reminding us to be gentle and understanding with everyone suffering health issues of any kind.

    Much appreciated and I wish you healing and peace.

    Reply
  46. marsha smith says:

    Hi Kimberly: I have migraines and depression and don’t *look* sick either so I know where you’re coming from. However, I can also recommend the meditation and yoga approach (via Jon Kabat-Zinn!!!!). It doesn’t make the pain go away but it does help you bear up and put up with it. Meditation especially makes you stronger mentally and it does actually relieve the stress that the pain is causing to your body.

    Reply
  47. K.C. says:

    Thank you for sharing your story. I can relate 100%, as I have also lived with an invisible illness since the age of 17. I am 25 now, and never thought I would live the life I currently have. I have a chronic pain condition – Complex Regional Pain Syndrome – from an incident while having blood taken. I lost a full ride athletic scholarship, have suffered severe depression and anxiety, an eating disorder, etc. yet am now doing much better despite still living in constant pain. No one has ever understood me, it was refreshing to read your post. I now work with marginalized women and youth, as well as adults with acquired brain injuries, and I feel that my disability has given me what I need to excel in my career, as I can empathize with them. Thank you for posting this, you have touched many people who can relate to your story.

    Reply
  48. Kim "Emma" W. says:

    Madame, you are FUCKING BEAUTIFUL. That’s my conclusion after reading this post. I got to your page through a random recipe link today, found this article, and boom. You’re fucking beautiful.

    I’m on disability because my brain doesn’t regulate certain chemicals properly, leaving me laid out for days, weeks, sometimes months. But I still put makeup on. And try to dress well. And smile. I know people think I’m weird – especially when I look vibrant and happy and alive, or I’m going through one of my good periods and the whole “I don’t work” thing comes up. That’s always fun. Conclusion: I feel you. And you state the situation eloquently, and more bravely than I’ve ever been able to. I’m ashamed, is my problem. But for no good reason. And I’m working on it.

    But you? Fucking beautiful. Thank you so much for writing and posting this.

    Reply
  49. juliaenchanted says:

    Thank you for your post, and for your blog generally. I just stumbled here from pinterest and, as a grad student with two invisible diseases, appreciate the recipes and sympathize with the pain. I’ve been on a lot of drugs (amitryptiline, lyrica, methotrexate), and I know how frustrating it is when they just make you sicker. I know how awful it feels when people mistake your careful guarding of energy for laziness, or worse, attention pandering.

    I want to share my story with you because I have been granted nothing less than a miracle. I want to spread the hope and joy in our little Invisible Diseases community because I believe mental health is one of the most important and overlooked things we need to maintain. I woke up one day six years ago with abdominal pain. It hurt all the time, and any movement (or even sitting or standing for long) made it worse. I withdrew from college for the year to pursue a diagnosis, but all the scans, scopes and blood panels came up clean. I even had ‘exploratory surgery’ where they just go in and see what they could find. No luck. I started to resign myself to living around this pain, like I have with the rheumatoid arthritis. I worked with my doctors to develop a cocktail of painkillers, sleep aids, and hormone treatments that made it liveable. Every year or two I would find a new doc and try another round of diagnostics, in hopes that a fresh set of eyes would see something the others didn’t.

    This year, my dreams came true. I started with a new Pelvic Health Clinic in August, where they deal a lot with women in my condition. The doc took one look at my (sizable) file, and concluded that since my organs had all been thoroughly investigated, perhaps we ought to see if it’s a muscle issue. Not one doctor in SIX YEARS of care had suggested physical therapy before. In my first session the therapist was able to change my pain from a 6 to a 2 out of 10. Temporary, of course, but we’re working to make it permanent. It’s the most amazing thing that has ever happened to me. I get to wave goodbye to one of my disabilities!

    Have hope, and seek joy. Physiologically chronic pain prevents our brain from making as much of the ‘happy’ chemicals as it should, so it is imperative that we make time and find extra sources (like laughter and love) for ourselves.

    Reply
  50. Mary says:

    I am so sorry for what you’re going through. I, myself, get quite sick of hearing that shingles is just a sickness for the elderly. I am only 19, but I am permanently marked with a scar on my abdomen from my bout of shingles that I had at only 11 years old. I don’t remember too much about it, but I do recall it being quite painful. I would hate to have to deal with it coming and going as it pleases. I don’t know if I could handle any more scars or pain. Thank you for sharing your story and facing each day with such courage.

    Reply
  51. Heather says:

    Hi. I was doing a search for PHN and symptoms/treatments for and ran across your blog. I’m 37 and developed shingles back in Jan. I work 2 jobs, and was rarely sleeping, just trying to keep up with my bills and getting back on track. It’s been a struggle for the last couple of years after losing a job that I’d had for 13 years.
    Anywho… the first day of pain in my back (that I saw the chiropractor about b/c it felt like a crick in my shoulder from moving booths at the restaurant where I work the night before) wasn’t too bad. But, the day after the adjustment and massage, with the addition of good ol biofreeze on the spot, my entire left side was on FIRE with TINGLING RAGE, SPASMs, and feeling like someone set an aluminum bat on fire and shoved it through my shoulder blade. On top of that, I had been sick for a few weeks and had made plans to see the Dr on Monday for my cough. I couldn’t even move, and I was coughing my ass off, while my back was fighting me. And the whole time I was thinking “I KNOW THIS FEELING!!” See…I also have HSV 1 and 2, and I KNEW what the prodrome felt like…except, I never imagined it would feel like tiny devils dancing around and sticking lit cigarettes through my back. I popped a few Famcyclovir b/c that’s what I take for the HSV. Apparently, it didn’t work. Maybe if I’d taken the whole bottle, it would have fought off this virus.
    Trip to the Dr on Monday confirmed me, I started valtrex on top of my famcyclovir, and the blisters showed up on Wednesday. So, I had to stop working my 2nd job. But thank GOD I work at home for my primary job, or I would have been worse off financially than I am.
    Fast forward 7 weeks, I’m still feeling like blisters are popping up (it was active up to this point…I did have blisters up to the 6th week), I make another appointment. PHN (Oh, I didn’t mention that I also have fibromyalgia. Yay me). I feel exactly like I did when I first got the blisters. I’m back to working both jobs. And let me tell you, I know how it feels to be so exhausted with pain that you can’t think and all you want to do is curl up into a ball, but, I do it b/c I have no other choice. I will drive myself straight into the grave.
    So, my question is…I noticed this was written last year. How are your symptoms now? Has there been any improvement? I KNOW I need to change my diet. I haven’t had a chance to look through your blog, so, I’m going to have to go do that later tonight if I don’t just log off from work and go to sleep.
    I was planning on doing a cleanse so that I can start over with my eating right and exercising ways, but, that’s a whole nuther insurance story. Have you found anything that has helped with the pain?
    Thank you for telling your story. I know that there are a lot of us who can relate.

    Reply
  52. Nicola says:

    Hi
    I have PHN too, I had shingles when I was 27 and have now had PHN for 10 years. Now at 37 I am slowly coming to terms with the fact that I won’t be able to do most of the things my contemporaries take for granted.
    I have PHN in one of the large nerves in my back so the pain branches from under my shoulder blade, round my side and under my rib cage. I also got shingles again last year and now have PHN on the right side of my face. It is a whole load of no fun.

    When I first got shingles the doctor I saw dismissed me saying that I’d be better in a couple of days and that I was young so I’d be fine (and no anti-virals!), It was only when I got worse that I saw another doctor who said that shingles was serious and put me on tricyclics etc.

    In the beginning, I tried to get information from various charities and I’d be dismissed. Apparently because I was a young sufferer my case wasn’t as bad as if I was a senior citizen. All the while my employers had ‘let me go’ and I struggled to cope with the reality of the illness, which as you know, is constant pain and precious little relief, oh and competing side effects.

    I was under the impression that I’d get better, the doctors and specialists would tell me that as I was young there was hope, until a couple of years ago and I found out that I was going to be like this forever.
    And it’s damn unfair! The stigma of the illness means that people tend to downplay it ‘oh I know someone who had pain after shingles and they are fine – what’s the matter with you!’. I barely recognise the person I have turned into.

    Counseling helps, I started 2 years ago when I was at that ‘curled up in a ball and waiting to die’ stage. It has helped me with the anger and disappointment as well as adjusting to my reality and trying to find a way to have a fruitful life in spite of the pain.

    I wish I had an amazing piece of advice that would help, but like you I have tried everything. I do find that rubbing the area hard with a rough towel or body brush disrupts the nerve and you get a few seconds of relief.

    Nice to meet a fellow sufferer, Nicola :)

    Reply
  53. Ben says:

    Not sure if you knew this, but sprouts (baby plants) contain the enzymes required to repair our nervous systems. Our bodies are not able to create these enzymes, so we need to eat sprouts to provide those building blocks. I’m not sure if sprouts would help to repair the damage caused by this virus, but it’s worth a shot.

    Also, cherries work well for natural pain management, the darker the better. I hurt my back and discovered a serving of cherries worked as well as 2 ibuprofen in deadening pain, and without the damage to my liver.

    Reply
  54. antionette says:

    I feel like you just wrote about me, it was like reading my own story, except the heart murmur, instead I have congestive heart failure, had cervical cancer, have asthma and even Got shingles in March, 2013 tho. In my early 30′s and get told your too young. My children don’t understand the pain, they’re used to me being a super mom, he’ll I’m used to it. At work I was honored for being a top associate now I can’t work, can’t go out in fear of a flare happening. During my few hrs if lucky enough to get I try to squeeze as much possible. Many times the only thing I can do is move my fingers, mine is on my face neck shoulder n shoulder blade area. The pain sometimes even reaches my hand. I also Got them on my foot, the rash on face and torso went away but the one on the outer ridge of foot still blisters when stressed making it hard to walk. I had a bad reaction to neurotic, allergic to opiate, and the amitripilyn gives me heatstroke easily. I also had cellulitis in leg. I feel like a shadow of who I was.

    Reply
  55. PJ says:

    I had my 1st dose of shingles in 11th grade 1961 and I am now 69. They were in my THROAT. After open heart surgery in 2000 they have been non-stop 24/7, both sides of body and except for throat always below the waist until 6-12-13….ah, yes…they are now on both shoulder blades, inbetween, under right rib cage and I know will be elsewere in near future. Continual shingles that come out with blister, scab then go back beneath skin for maybe hours or couple of days and then the least little thing will cause them to come back out along with “newborns” in different areas. I take pain med 3 qd, pain patches, use Epsom Salt liquid rubs in early stages, Capsacin roll, TENS Unit and, like you, I am down more than I am up and functional a lot…functioning “living” seems to cause my body to go bezerk and it attacks me again …. pain never leaves though outbreaks do/can go beneath skin briefly…my bladder and bowes are affected and my breathing from the above-the-waist was painful….mine are on both sciatic nerves, spine, down back of both legs and now above the waist as of few days ago. The chills and fever leave me in full-length Sherpa gown, socks, comforter and other bed clothing in JUNE for 3-4 days before they break. Sounds, light, air from fan, clothing all irritate nerves all over my body. I am also diabetic with nerve damage, fibromyalgia for YEARS, hypothyroid. Thank God I live alone with my animals. It is all I can do to care for myself and I myself have extreme difficulty dealing with ME so I am blessed not to have to try and care for another and deal with that person’s inability to understand and help me. Being single has advantages when you are ill — in my opinion! My thoughts and prayers go out to you. As for the shingles vaccine…I am 69 and CDC WILL NOT advise my physician to give it to me because my outbreaks have been so long and so intense and the oral anti viral drugs make my condition worse as they suppress the worst of shingles instead of letting them come out — when they come out I do get a little relief…so vaccine and oral anti viral do not work for me at all. I just suffer. I cry in my pillow. I scream in my pillow. I lay as still as possible through the jerking and twitching from the irritated nerves until finally I get a time where I can “function” for possibly hours and then I am down again. I live by the hour now. I can never make plans in advance or appointments or committments….socializing is a past experience. I cook lots of meals in advance. Housework is hit/miss, at best (another benefit of living alone LOL) I try to keep happy and light hearted. I pray a lot for strength. When I am functional I always overdo but I am always so excited to be able to DO at life again. I have to be honest …without pain med assistance I would truly not be able to want to continue living because of the pain….I therefore, never abuse my pain medication as I know it is my ability to continue to have a life …… even with pain. Don’t give up.
    With all my sincere hope, encouragement, prayers and empathy for you and any who deal with this.

    Reply
  56. Kim K says:

    Omg… I stumbled across this today. I too have chronic shingles! It started about 3 yrs ago at the age of 40. Every month for months on end! The doctors got to where they didn’t believe me and would make me come in so they could verify the rash before they would prescribe the anti virals.

    I too have pmdd and chronic pain, thankfully the cymbalta for the severe depression keeps all this at bay.

    I have a question?

    I try so hard to remain fit and hike lots. I know I over do it on weekends, putting in a 8 mile hike in 4 feet of snow. Every single time I work out I either come down with pneumonia or bronchitis. I was wondering if this happens to you? I’ve read that with a suppressed immune system your liver basically floods the system with all it’s harbingers of death after a strenuous workout. Of course, none of the doctors believe me!

    I notice you have lots of meatless entrees, has this helped you health wise in any way? I would love to chat with you some more! Please feel free to contact me. Kim K in Seattle

    Reply
  57. Liz says:

    You have no idea how much it helos to know mi not alone in this, i am 29 and got shingles lást year and now living with phn, i wonder if you are free og phn now i think i lost al hope :(

    Reply
  58. jean says:

    I have been suffering for 14 years with the reoccurring shingles and the shot for it is dangerous is what my drs say. the pain has recently started getting worse not sure if it is my age or I am not as b usy and notice it more now because it is getting harder to walk. I am only 42 still have kids to raise I’m a single mom and proud of it I have not worked in 2 years mostly due to the pain but I closed my restaurant when. my 3 boys and 2 nieces got in a car accident. I now unfortunatly suffer with depression also so keep your chin up things could b e worse in our lives. it seems as though I start getting an outbreak and my daughter brings the grandkids around and it gets worse and worse every time. I hope they find something better for treatment I know I have the b est they have to offer but it is no longer doing anything… Suffering Jean in Illinois

    Reply
  59. Shannon says:

    I’m sitting here crying at my desk, because I could have written large amounts of your post. Background:

    Depression and Anxiety
    PHN
    Hypothyroidism

    Those things, yay for me, also play off each other, and one can affect the other quite easily, and do in my case.

    I’ve missed a LOT of work, mostly due to the PHN pain (back left side of my head) and being physically and mentally unable to get my body to a place some days where it is in enough of a functional state to get out of bed, much less think about driving to work.

    My current boss doesn’t seem to get it and has made multiple comments about me using up my leave and not having a balance (‘in case something happens’). Because, of course, I LIKE using up all my sick AND vacation time, ensuring I cannot take days off to actually do something enjoyable, instead having to hoard what little I have because of the inevitable PHN flare up. I am fortunate in that Lyrica does work for me to an extent. It allows me to live in non-dire pain sometimes, but with increased stress (such as my boss questioning me) comes worsening symptoms, and a cycle builds.

    I am thankful that a few of my good friends really DO understand what I have and the effect on me. And my doctor is dedicated to trying to help me.

    In fact, he just last night gave me a B12 shot to help with the nerve stuff. And I’m prescribed sunlight in addition to prescription vitamin D. I have dangerously low B12 and D levels, plus iron deficiency anemia, so those combined with the other issues mean I am incredibly fatigued MUCH of the time.

    I hate feeling like a burden to people, and it’s frustrating to know that so many don’t understand what they cannot see as illness.

    Thank you for your courage and eloquence. I found you because I was researching some specific things about stress and PHN connections and will stay for the food!

    Reply
  60. Mark says:

    I developed that rare type of shingles with no real rashes. I just had some kind of skin eruption which looked like a bulls eye. Living in a rural area my DR thought it was lymes disease which was at that time raging in my area.. The symptoms for shingles were all there, the burning stabbing pain the sensitive skin etc. Well they tested me twice & no lymes. The pain just did not go away. Eventually my DR came to the conclusion it was shingles-too late & not his fault- who really new at that time. He sent me to pain management, after several procedures- no help. Guess what, pain meds.. Well that started 10 years ago. The pain is reduced but as you know it is there every day of my life. Of course now 2 things rule my life PHN & the meds ( with their side effects). How do you live with the knowledge this pain will never go away, I guess each has their own way. I do know one thing & that is that those who are not affected can never really understand as much as they want to or care. You have to work hard not to be depressed & in this modern climate you have to even be lucky to find a Dr who understands & will give the meds that are needed.Thats about all I can say except thanks for the ability to write to those who understand, (I have never did this prior)

    Reply

Leave a Reply

Want to join the discussion?
Feel free to contribute!

Leave a Reply

Your email address will not be published. Required fields are marked *

*

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>