Recurrent Shingles and autoimmune disease

So — It’s been a while friends. I only have about 20 minutes, but wanted to catch everyone up on my recent health battle: SHINGLES!!

I was diagnosed about 2 months ago. 

It all started with a few bumps across my bra line I thought were bug bites

In about a week, those bumps turned into a widespread rash across my ribs/torso. 

Horrible burning pain, itchy and all the dreadful symptoms that go along with shingles like:

Lethargy, sharp pains, dull aches that felt as if someone was punching me in the ribs repeatedly. 

I also had this feeling of being electrocuted that went from the tips of my toes to the top of my head, waking me up with a zap about every other hour — hence the lethargy

My doc put me on anti-virals and gave me some pain meds and numbing lotion for the rash and sent me on my way.

 

I saw my Rheumy about it and he also took me off all my Psoriatic Arthritis meds, which now includes methotrexate and Enbrel, a combination that for once FINALLY was working for my day-to-day pain. 

Now, fast forward about a month and the rash is beginning to fade, I’m done with my anti-virals and haven’t taken any immunosuppressants. The zapping has faded, but I’m still dealing with a lot of the dull aches.

I was told by my doctor and Rheumy that after a couple of weeks of being done with the anti-virals and being off my meds, I should go ahead and fork out the $300 for the Shingles vaccination (which isn’t covered by insurance since I’m not over 60-years-old).

So, I did.

I got a minor reaction on my arm that went away at about the same rate as my other rash, which had spread by the way, to three other parts of my torso and back.

Then … I go through a somewhat stressful move about a week or two later.

 

I wake up in my new place, which by the way already is feeling like home for me and my boys!!! … and whaddya know, I have a NEW rash that appeared over all the old bruises.

Now — yesterday — the pain is BACK!!

Horrible aching in my ribs and torso.

And … this morning I found three new rashes.

I guess I’m just wondering if every time I go through something stressfull I’m going to have to deal with this pain.

It’s awful. Hard to get up in the mornings!! Painful, burning … all the symptoms are back and feel as if they have doubled.

I keep on truckin though.

I’m going to work and trying to ignore the sharp, stabbing pains in my ribs.

I also am on my second round of anti-virals … AND … flaring in my joints horribly since I’m off all my meds for the Psoriatic Arthritis.

Has anyone out there ever been through Shingles at a young age (or any age for that matter) and also had autoimmune diseases?

If so, how many outbreaks have you had since and WHEN did it END!!??

Not sure how much longer I can take this 😦

Thanks for listening to my rant and feel free to comment. I need all the suggestions I can get!

Love you all and talk to you again soon!!

xoxo

~allie 

PS: In case you are wondering what a shingles rash looks like.
And let me tell you, the rash is not the most painful part of Shingles 😦
1

photo

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About Imkjac

I love my work. I also love the following things: God, my boys, my family, dogs, cats, writing, photography, reading (a bit of a lit geek actually), cooking, being outdoors, hiking, fishing, film, music, Spotify, beards, tattoos, board games, TV (also a TV geek), Netflix, pajamas, antiquing, interior decorating (DIY), blankets, polar bears, art, food. I dislike these things: elevators, heights, unclear water, bridges. Thanks for reading my blog and hoping it brings some comfort and joy to others.
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40 Responses to Recurrent Shingles and autoimmune disease

  1. sandie tallen says:

    I am 64 and have suffered from autoimmune diseases most of my life. I started with eczema, shingles (lost eye sight in left eye), psoriasis, psoriatic arthritis,and celiac. I was in the hospital most of my teenage years. I take embrol but cannot take any thing with steroids because I blow up like a balloon with water. After many years of pain – I finally feel relief. My dermatologist noticed that everyone in my family suffered from some kind of autoimmune disease that the liver was not fighting . Most of us did not have problems before the 1960’s and then my sister came down with ITP, one with allergies, every kind of arthritis, skin diseases, and liver, gallstone etc. At that time – food was being boxed, and soda pop became popular- our eating habits changed. Preservatives caught on and every family seemed to have a kid with adhd! I remember when we had to put the food coloring in margarine, so it looked appetizing. So I gave up wheat, anything with preservatives, used only organic and very little dairy. My skin is almost cleared up. My arthritis doesn’t come into my life with pain – I can move! I am off of all meds except enbrol. All my food is chemically free. I drink water and a tea made from dandelion, cranberry and green tea. No caffeine. I only eat red meat once a week, fish mostly and lots of vegetables. I juice regularly and learned to love the taste. It is worth it for me because I am pain free,my liver count is normal, my blood pressure is normal as well as my cholestral. Believe it or not – but I can enjoy sex because the closeness to my husband no longer makes me itch and no pain! I was saddened when you gave up juicing only after 4 days because I would drink the vilest of juices to be normal. Personally, I love the juices now. I juice for breakfast, lunch and snack and I eat wild caught fish and organic for supper. My nighttime snack is a handful of almonds. My groceries are up but my dr. and medicine is down. My sister is being helped by following the same plan with her blood disease! Milk thistle is essential and teas. Look up liver diseases and detox. Give yourself more than 4 days. I started seeing gradual improvement and each month is better. I have been doing this since august, 2012. Good luck
    R

    • That’s great news!! Wow! Maybe I’ll pull out the juicer again in 2014 and give it another shot. Now that I have a kitchen, it may make it a bit easier!! I have been off of wheat for nearly 10 years now — and I was diagnosed with psoriatic arthritis recently, and the Enbrel was amazing and working, but when I came down with Shingles, they had to take me off and have been off all meds ever since. I see my doc at the end of this month and hope to maybe go back on the shots. They really did work well for me. I know I need a diet change. I eat mostly fruits and veggies right now, but need to come off dairy and my addiction to Diet Dr. Pepper. I am down to 1-2 a day, but need to make that more like 1-2 a month. I may go cold turkey soon, but need to prepare myself mentally for that and not sure I’m ready to commit. I’ll keep you posted though. And I will definitely try to incorporate juicing again. Even if it is just a few times a week.
      Thanks for your input. I appreciate it 🙂
      ~allie

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  19. Diane says:

    Allie, My name is Diane and I have been breaking out with shingles on my butt and in my hair, once or twice a month for five years. I am at the end of my rope. The least little stress and I break out. Sometimes I just get the post hepatic pain in the head without the rash. I have taken the expensive anti viriuals (spelled wrong), alpha liapoic , and L-lysine.
    I don’t have a regular doctor, each time I see someone new and no one really follows up on it. I’m a mess.

    • Diane,
      Oh no. So sorry. My rash has been gone, but I still deal with the pain. Any time I get stressed the pain is unbearable and I can see a faint shadow of the rash that used to be there for months. You might consider finding a specialist to discuss this issue. I seriously believe there are more of us that deal with reoccurring shingles than doctors realize. I hope you are feeling better now. I hope to incorporate healthy ways of dealing with stress to try and combat my pain. I’ll blog about soon. Hang in there 😉
      ~allie

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  21. My hubby got laid off at the end of Sept. ’13 and a week later I got them; he did too in another 3 weeks. Argh. Yucky stuff. Going through it, stories came out of the woodwork of all sorts of people who have had it or know someone–even 2-yr-olds, teens, as well as elderly folks. I was not impressed with the info on line concerning the vaccine, so I am not doing that. There are so many varied symptoms, it is tough to figure out. I pray you get over it totally!

  22. apronheadlilly,

    I actually got them not long after my dad and mom had them. I’m pretty certain that for some reason or another, people began associating shingles with age, when in actuality, anyone can get them. I believe stress plays a large factor as does the condition of someone’s immune system. I am still dealing with pain, but it is becoming less frequent (thank God).
    I am still taking medication for nerve damage, but the flares are coming fewer and farther between. I believe working out and stress management is playing a role for me in that. Thanks for your prayers 🙂

  23. Cristy says:

    Hi there, I was diagnosed with juvenile rheumatoid arthritis at 4. Although the last major flare up was at around 15, I started getting shingles at 18. Stress was triggering it. I had outbreaks over 10 times before I was 24.
    My 9 year old son started getting shingles outbreaks at 6 years old. He also has autism and sensory processing disorder so the upside to that is that he doesn’t feel pain like other people so it doesn’t bother him like it should. (Thank you Lord!!!). I’m just realizing that he may also have some type of autoimmune disease and I’m starting to do a little research and found your blog. I had never heard of anyone else developing shingles at a young age except us!!

    • Cristy,

      So sorry I am so late replying to you. I hadn’t heard of young people contracting shingles either, until I got them myself. It’s been well over a year since I had them and I STILL have pain. I think it has to do with my immune system for sure. I hope you and your son are doing better and I hope you find the answers you are looking for. I know how long and tiring that road can be!!
      Best wishes.

  24. so I am super behind on responding to this, but I have had recurrent shingles for 14 years, & am so happy to stumble upon this blog. No doc I have ever seen will allow me to have the vaccine because you are supposed to be symptom free for twelve months prior to getting it, and I never am. I am about to creep your posts because I go next week to be tested for auto immune diseases. This is about a decade later than it should be, I feel certain! (I am 36, and feel 103 most of the time!)

    • Shelley, I am so sorry you are having to deal with all of this. Trust me when I tell you, I know exactly how you feel. I still deal with pain from my bout with shingles! Especially when I’m under stress! I hope all goes well at the doc and you get the answers you’re looking for! I would love for you to fill me in on what you find out. We’re about the same age and I also have those days where I feel 100. Even more so with this cooler weather! I am young at heart though, so not sure if that makes it better or worse. I also look younger than my age. It’s a weird combo, lol. Hope to hear from you soon!! Sending love and hugs your way!!! ❤

  25. margaret says:

    Hiya nice reading bout yr experience of shinglers and poor health in general …to me reading this information is like emotional support I myself have fibromyaglia plus x 3 Arthritis and Ibs plus leg ulcers plus automune illness now shinglers plus ….so reading cases such as yours takes away feelings of isolation….all I can say is my physical body sucks and wears me down….however my spirit and mind is alert and keeps me going
    .Be kind to your self…….. Find out what makes u tic!!!!!!!

    • Imkjac says:

      Margaret,
      So sorry I’m replying to this so late. I am so sorry your dealing with so many health issues. I know what you’re going through, so don’t ever think you are alone — because you aren’t. Thanks for the kind words and your spirit and determination is contagious! Keep being positive!! 🙂

  26. Natalie says:

    I am 27 with an autoimmune disease. I do not take immune suppressants but I do get shingles everytime I have a high volume of stress or my hormones go wacky. L-lysine taken every morning helps keep thw outbreak mild. Essential oils like tea tree and lavender help make rashes go away sooner and taking thieves essential oil helps with other symptoms. 🙂

    • Imkjac says:

      Thanks Natalie. I will try the essential oils. My rash typically flares, but doesn’t really show back up full force. It’s more of a throbbing inside my chest/lungs. It burns like it’s on fire and typically only lasts during stressful periods. I’ve never tried essential oils, but I like the idea of it. 🙂

  27. Aebj5 says:

    It breaks my heart to learn so many others have been dealing with the same painful and sometimes debilitating issue of reoccurring shingles as I have. Sincerely my heart goes out to everyone who shared their story. I had my first episode at the age of 18 my senior year. No health insurance and insanely expensive medication kept me from bothering to go back to doctors without real relief from the solutions offered. I’m aware stress can set them off and that they lie dormant from having the chxpox as a kid . But after the last 3 yrs and 8 bouts of shingles ,some without even a rash and now pain that Won’t leave ….which is about to put me in the nut house!!!….I am so frustrated that our health care system has lost its path on Health Care somewhere between drug companies ,doctors still trying to pay for schooling , and haggling insurance co …that we now have a system for Disease Care instead of the health care that insurance and doctors claim we are being given. I can’t seem to get a doctor to look at the whole picture as a whole in order to recognize and treat the problem ,not treat just the symptoms of the problem .Yet.an apt with doc gets them to look at one issue!. If there are multiple concerns its multiple apts ….all while forgetting why they saw u yesterday! NO JOKE… Stress with a triggers of fight or flight feeling is a constant all my life…..so shingles have been my constant life reminder I am not doing this right.I am learning to change this awareness as of late! But it’s difficult. Mentally emotionally, physically shingles seems to be a symptom of the real overall issue. Yet medically we are not set up to succeed ,teach and heal ….before having to deal with treating and healing the symptoms . I don’t know what the solution is but I believe if we don’t take the time our body is telling us we need and become much more aware of what it needs to heal as a whole God or universe will run our ass’s right into that tree at 60 mph and then we will wish we had slowed way down to pay attention to the bumps ….I was schooled that a health and wellness retreat ,sabbatical or what have is what people do when rundown ,low immune , fatigued ,sick that has overall wellbeing in serious health check!…But how with failing health ,does one raise 3 kids, run a business ,stay married,while building our house ourselves on a scavengers budget, Do I leave my family of boys to take the needed time my body says I need with money I don’t have and health care that won’t cover the health options that would heal me and make it happen oh and without guilt of being sick and needing this???? How do people get healthy without extra time,money, and guilty conscience ??? I think if we had those two things with a swish of a wand we would know exactly what to do and what our bodies needed or at least know where to go and who to ask!,, Olive Leaf, Lysine, vitimine C, echinacea,colloidal silver, adrenal fatigue test,no stress, reducing body acidity to a more alkaline state,..hence..the..Baking Soda,apple cider vinegar ,testing for mineral and hormonal imbalance,detoxing, hyperbaricks, and turmeric as well as some pepper for topical as well as reducing inflammation by oral. Meditation, breathing, mindfulness, exercise,REST. Sound frequency,chi gong, Tia chi, and the vibration of thought which is by all accounts law of attraction. Science proves!! But insurance doesn’t cover any of these options . I wish there were a detox and treatment center for the mind body and spirit to get healthy ….. But I can get a detox and treatment paid by my insurance to get off of illegal or legal drugs oh and my insurance will cover pills that don’t work that the drug companies offer doctors as the only solutions. This was not meant to be a negative rant I know u all understand my overwhelming burden of healing in this disease care system when taking a month off work to spend money u don’t have to try and jumpstart an already far to long episode of health decline with not so much as some pills that don’t even help from our healthcare system! If there are any ideas to how I can go about a healing change gracefully without resorting to drugs or going crazy. Please do share. This is the first time I have ever had health care! So I might be missing a lot in this delpeted and frustrated state of health ,mind, body,spirit but I’m open to hearing options. If i had the energy I would be ready to take on the idea of reforming our system of health care… Just saying! Mental, physical,medical,and spiritual health would be all the priority and with all modalities of treatments …..the intent is set with thought.

    • Imkjac says:

      Amanda,

      I know exactly what you’re going through and it sucks. I am so sorry. I’m also so sorry I’m just now checking all my comments (I’m a busy girl too!) While I don’t have all the answers you seek, what I can tell you is that I’ve been there. I hope you’ve come out the other side and are healthier and happier today than you were at the beginning of the year when you posted this. One thing that has helped me is learning to say no. When you keep your mind and body constantly busy — of course it can’t heal. I also was in a toxic marriage that I full-heartedly believe kept me sick due to the stress and constant fight-or-flight condition my body was in. Once I left the marriage, within about two years I was able to come off nearly all my medications (anxiety/depression) and I am happy to say that now, nearly six years later, the only prescription medication I am on is for my thyroid. But, it’s important for me to say that number one — every situation is different — and two, no one should try to go off any medications without the instruction and aid from their doctor.

      Your marriage may be a happy one! I hope that it is, but it sounds like you could use some down time for yourself. Try taking just 20 min a day FOR YOU!!! Whether that means painting, taking a walk, reading a book, meditating, sleeping or doing some yoga — it’s important to start investing in yourself first. If you fall apart, then you obviously can’t be there for your family. Stress is a major, MAJOR factor when it comes to autoimmune diseases. Working on your mental and emotional health should be your number one priority!! I put a lot of focus on mine for about 2/3 years following my divorce — and working from the inside out has been a good format for me. Don’t get me wrong, it’s a never-ending process — But I feel I’ve come a long way since 2011 and I don’t plan to stop now.

      Diet and exercise is also crucial. It helps to relieve stress and will just make you feel better overall. If you’re anything like me, your exhaustion and pain gets in the way of exercising like you should — but that’s how the cycle continues. You have to break that cycle. Even if it’s just 10 minutes of walking a day (on a treadmill, outside or at a store), force yourself to move.

      When it comes to prescription medication, that’s a tough call. You need to speak with your doctor about that. Something they struggled with for a long time with me is the fact that I needed to suppress my immune system in order to stop it from attacking all my healthy tissue. But, as you probably already know, when you have no (or a low) immune system, Shingles can’t heal, it will spread and you’re also more susceptible to other illnesses. Ultimately, I stopped suppressing my immune system to help clear up the Shingles and I’ve never gone back. I want to be clear though, if I do have a flare, which is inevitable with autoimmune arthritis, I am not opposed to going back on medication if it’s necessary.

      Anyways, I know this is long — and long overdue, but I want you to know you are not alone. I appreciate you sharing your story with me and I would love an update.

      Sending prayers and hugs your way!!

      Allie ❤

  28. priscilla says:

    I have autoimmune disease,I go to the lupus clinic to have treatment in dbn,SA.I’m on 2 types of steriod tabs but still get shingles when I’m to stressed also , syptoms are crucial,

  29. Mandy says:

    I am now 28, and have had about 5 outbreaks of shingles in the past 8 years. I do not have a known autoimmune disease, however, I definitely suspect one. I have had joint pain for as long as I can remember, I have been so fatigued lately that I can’t even keep my eyes open during the day. I am having my 3rd set of bloodwork done- in a month in a half- tomorrow. That is due to elevated wbc, but I asked my doctor to also do an autoimmune blood test while they are at it. He never responded, but I am hoping that they are going to test me. I just want to know what’s wrong! Also, my shingles are never too horrible, and I sometimes don’t even get the rash.I have been lucky so far, but hoping that it doesn’t get worse as I get older.

    • Imkjac says:

      Mandy,

      I am so sorry you’re suffering. It definitely sounds like it’s autoimmune-related! Unfortunately, medicine is a practice and it can take years to get a proper diagnosis and effective medications. DO NOT STOP SEARCHING!! You know your body best, not the doctors. If you aren’t getting answers where you’re at, find a doctor who is ruthless in his/her search for the actual source of your pain/problems. I’ve also always had a high WBC count. It has to do with my body being in a constant state of fighting. Unfortunately, my immune system not only fights off bad cells, but it also attacks my healthy cells and tissues. The only way to stop a flare like that is to suppress my immune system through medications. Luckily, I haven’t had a flare in quite some time — even since breaking my ankle in February and going through surgery in July. Hang in there and keep me posted on your progress. Stay strong girl! ❤
      Allie

  30. Marilyn Phillips says:

    I just read your article. I have had shingles 4 times, (possibly 5 times, not sure. But like you everytime i am under stress I break out & have severe pain & swelling. I am one of the lucky ones, Shingles left its mark as i suffer with PHN which is miserable. My sarcoidsis has also flared up, which is affecting my lungs & breathing. Heart rate has also been affected. Depression & No Sleep. Waiting for biopsy on my thyroid is enlarged 3 times larger and several lymph nodes are enlarged. My auto immune system is rejecting meds and now testing me for Graves Disease. I also just been diagnosed with erothema nodorsa, arthritis flare ups, legs & feet swelling. Severe dry skin, eye sight affected, Crohn disease with ulcerative ulcers. What a mess.

    • Imkjac says:

      Marilyn,

      I am so sorry to hear you’re suffering from Shingles. Believe it or not, I still have flare-ups (mainly during stressful times) and it’s been years since my first outbreak. I hope you are able to find some relief soon. I also suffer from Postherpetic neuralgia — it is not a game. Please keep me posted on the Graves Disease diagnosis. Hopefully, you’ll receive good news! ❤ Thanks so much for sharing your story. We all gotta stick together!

      Allie

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