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Posted 7/5/2012 5:50 PM (GMT 0)
I had a case of the shingles at the beginning of May. I did not have a rash, I have had shingles before and no rash either. Last time I got over the shingles in about 1 week. This time however, I can't seem to shake it. The pain wraps around my side from my back to my belly button, which is the exact same spot as last time but this time the fatigue is EXTREME and now other things are hurting like my neck, shoulder and lower back. I am 43 so stiffness when I wake up is not unusual, but now, even after what should have a "good" nights sleep I wake with bad muscle aches and I still feel tired like I didn't sleep at all. This is new. So far my GP says that he doesn't think I still have the shingles and doesn't know why I am still in pain. The pain is so bad sometimes that it renders me completely incapacitated, I can't even talk. I took valium for a while but got sick of feeling drugged. He then gave me Lyrica which really decreases the pain but does nothing for the extreme fatique. I have been reading about fibromyalgia and it sounds like what is going on with me.

My questions are: How do I bring it up with my GP? And I have read a couple of studies that link shingles to fibromyalgia, mostly that people with fibromyalgia are susceptible to shingles but has anyone had any experience with a bad case of the shingles CAUSING the fibromyalgia or causing it to surface???

Thanks.
Posted 7/5/2012 6:17 PM (GMT 0)
Hi, Addgirl. Welcome to the forum.

As far as shingles, you've got me really confused. I thought shingles WAS a rash! No?

Take a look at fribro 101, 2nd thread here. It will tell you a lot about fibro. When looking for a doc, ask on the phone whether s/he treats fibro patients....if not, there's a chance you've found one still in the Dark Ages, who doesn't even believe in it. And that won't do you any good!

Debbie
Posted 7/5/2012 6:57 PM (GMT 0)
Ok, I must have what you call "fibro fog". I took VICODIN not valium. Ugh. I don't know how to deal with this.....
Posted 7/5/2012 7:06 PM (GMT 0)
Apparently you don't always get a rash with shingles, you get neuro type pain. The way my GP described it to me was that the virus can irritate a nerve root and you will have pain all along that nerve path. In my case, got into and irritated the nerve root right around T3 so I had pain all the way from my spine to my belly button.

I read that many times fibromyalgia starts with some kind of event, like an injury, I am starting to think that this latest bout of neuro shingles pain may have brought it out or maybe I have gotten shingles 2x because I have had fibromyalgia all along, I don't know, chicken and egg kind of thing.

I noticed the symptoms/conditions(?) you have listed I also have migraines, bulging disc at L4-5, IBS, tachycardia (SVT), sensitivity to sound, light and strong smells (perfume, etc.). It baffles me that all of the conditions could be related......
Posted 7/5/2012 7:23 PM (GMT 0)
Interesting question - I've never thought of it before until now. I had shingles when I was in college. I did have the "rash" - lovely large red blotches covered with tons of tiny little blisters. Pain shot back and forth between surface of skin and deep down inside along the nerve.

I was diagnosed with fibro 2 years after college...so now you have me wondering if the shingles was what triggered the fibro for me? Although also within my college years I was in a wreck and had pneumonia, so could have been either of those as well. I can't remember exactly when my symptoms started, but I think I remember having fibro symptoms back in highschool even, so maybe it was having fibro that made me susceptible to the other illnesses. Oh boy, you're right, chicken & the egg for sure!
Posted 7/5/2012 7:35 PM (GMT 0)
I know. The research isn't clear. It seems even the experts can't decide what causes what but they have found a correlation. I forgot endometriosis and restless leg syndrome. I had a hysterectomy because of endometriosis. Are there any threads her for successful treatment of the condition????
Posted 7/5/2012 9:12 PM (GMT 0)
Hi there....welcome to the boards...I'm sorry to hear about your issues..

It sounds like you have the nerve pain controlled with the Lyrica and it's the fatigue that is causing the most problems right now? Do I have that right?

Some of the best ways I found to combat the pain were a few things...

First was getting a good night's sleep. For me, I was put on Ambien after my last cervical fusion, and it was literally like becoming a new person after getting to stage 4 sleep!...I still wake every hour to change positions but I fall back asleep quickly. There are many natural ways and/or herbs to get a good night's sleep so medication was my last resort. I also make sure my room is nice and cool. I turn off my computer, phone, and TV an hour before bed and turn off all the lights and I "listen" to books I have downloaded online. This really helps me fall asleep being read a bedtime story!..LOL

The second thing was switching to eating all Organic foods. I'm not a vegan or vegetarian...just everything in moderation. But eliminating all processed and artificial foods has made a huge difference. My energy levels are great!...

Many people think it's too expensive but most all grocery store chains have their own version of all natural and Organic food so with using coupons...my store points card, and being careful about how I eat...I spend the exact same amount of money as I did previously and have all the wonderful health benefits to boot!...Snacking on an apple and tablespoon of peanut butter, or organic chips with natural cheese...etc...Is so much better than junk food of a processed candy bar or soda which is just drinking chemicals...blechhh...

I also stay very hydrated all day long with water and if I need a bit of a boost in the afternoon I drink green tea. It's a lower level of caffeine but with antioxidants..

And then the last part is getting daily exercise for at least 45 minutes a day. Along with yoga/stretching....Exercise is so important with those with Fibro for both the energy level and staying limber...

Many of us have more than just Fibro going on as you do but I have to say that with the things I have mentioned....I really only use a muscle relaxer once in awhile to help with Fibro pain but I would consider myself mostly symptom free!

So...hopefully you can use some of these things to help with your fatigue level..
Posted 7/5/2012 9:23 PM (GMT 0)
Snowbunny21, thank you for the suggestions! It is the fatigue that is most troubling, but I still have "flares", I guess you could call them, of the severe nerve pain in the exact same area as my shingles yet the dr says I am "over" the shingles. I am now not sure if it actually is nerve pain or what it is. I get a deep ache that starts in my back, right where my kidney is on my right side. I have had my kidney and everything check with a CT Scan and all organs ok. Once the deep ache starts it then travels around my side to my belly button. The deep ache in my back is constant and then a deep ache near where my gallbladder was is also constant, but I get sharp intermittent pain along my side in between. I am also tender to the touch in my back and gallbladder area when this happens.

My sleep is terrible. I really need to get into a routine. Thank you for sharing your routine, I may try some of those techniques. I did try Ambien and it worked for a while but then stopped. I then tried Lunesta but that made me do things in my sleep, like sleep text my husband's ex wife (oops). So I had to stop that also. Some say that melatonin is good.

Again, thank you so much for the tips.
Posted 2/1/2014 4:00 PM (GMT 0)
i have the EXACT same thing. so glad to hear about someone else who experienced this as the dr. just giggles when i tell her my symptons. i have had this three times. originally had shingles pain w/no break out, but pain very severe. i then have had it three times since. same burning, itching, stabbing pain around torso, skin feels sunburn, belly button to mid back. i also have been diagnosed w/fibro, i often have few symptons, then have flare ups where i am VERY fatigued and achy.
Posted 2/14/2014 12:02 AM (GMT 0)
I was 15 when I had Shingles. I thought that only occurred in older people, but apparently that isn't so. I remember the pain being so severe, it seemed like the flu x's a million. I had rash and blisters all down the left side of my body, mostly my stomach and back. I slept for days trying to stand up was like someone was stacking weights on the top of my head and that my head felt like it was being squeezed with a vise. I did not want to move, if it was possible for me to find a position that wasn't so uncomfortable. My mom kept cold wash clothes over my head and face, the light was hell, the whole sickness was hell.
When I was 24 I had a brain tumor removed and though my entire head and face were swollen, the pain was no comparison, Shingles is way worse.
Now 32, I have recently been prescribed Cymbalta for Fibro, but my insurance won't pay for it til my doctor tries me on something else first. Anything else that works?
Posted 2/14/2014 12:10 AM (GMT 0)
Try gabapentin, journey.
Posted 2/14/2014 4:14 AM (GMT 0)
couchtater

Thanks for your response. I will mention this to my doctor.
Posted 3/23/2017 2:56 PM (GMT 0)
Please google "shingles phn". It's long term pain after having shingles and it really sounds like what you're going thru.
Posted 2/7/2018 9:57 AM (GMT 0)
Resently diagnosed with Fibromyalgia. Nine months later had major back surgery (L4, L5, S1 frontal posterior dysectiny fusion). A week later a get horrific pounding head pain, back lower right head, and this becomes unbearable. I use a heating pad. Next morning I have blisters right side of my neck, upper head and back, shoulder and arm. I'm then taken to the hospital ER. Frankly there was nothing more they could give me. IV dilaudid was my only relief. So we did. I go home and rest. Day later my right side of affected body and in horrific pain x 100.
Meds given for this are neurontin, Valium, Percocet, flexeril muscle relaxer, narco.

Honestly, this is absolutely unbareable.

Should I go to my rheumatologist?

Lesions are gone. The rash feels like it has barnacles reaching into my body everywhere. Hyper sensitive skin. I'm using lidocaine gel and aloe Vera. Very temporary relief. Cold compresses.

Any suggestion?

Love to have your input.
Posted 2/7/2018 1:47 PM (GMT 0)
Hi, Frisbee, and welcome. Oh, wow! I’ve heard how painful shingles can be. I’m so sorry you are dealing with this. I looked up info on shingles and they generally last 3-5 weeks. You didn’t say when you got the shingles but you can judge for yourself. I don’t know what a rheumatologist can do for you that hasn’t been done already. You are on a ton of medication. You might have to ride this out.

Here is a link from the National Institutes of Health all about shingles. It might offer you some ideas.

/www.nia.nih.gov/health/shingles

I understand you can get shingles more than once so, once you are over this, you might want to talk to your doctor about getting the shingles vaccine. I had my vaccine several years ago.

Please let us know how you are doing. We do care about you.

Sherrine
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