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Related: Culture Forums, Support ForumsPSA. I'm home from the doc for my back pain. If you are suffering with pain of unknown cause this info may help you.
I've been whining ad nauseum about my crippling back pain.
Here's what's up. Maybe this might help someone who is suffering with undiagnosed pain.
Crippling pain in center back, right back, right hip, right groin for weeks. I've had pain before, but this is a dreadful suicide pain.
Pain is so bad that it took 2 IV doses of Dilaudid to get me on the CT table. and this drug didn't actually relieve the pain, it just made my knees buckle.
CT scan showed degenerative disc disease, stenosis, etc. But nothing that would cause pain this severe.
Prescribed a high dose of Oxycodone. This actually intensified the pain.
Prescribed Gabapentin over the phone last week. It's not helping.
I went to my primary care this morning. She's a very good nurse practitioner. She's better than a lot of physicians.
She gave me a good exam and said she was going to write an order for a MRI of my hips and back.
She asked me if I was having any other problems. I told her that when I woke up this morning, I had a nasty rash near the base of my penis that just manifested over night.
She looked at it and said "That looks like shingles".
She called the doctor in to confirm and the doc said "Yep, that's absolutely shingles".
I told her that I had the shingles shot, and she said "doesn't matter, you can still get it".
As it was explained to me, shingles attacks your nerve bundles on one side of your body, and you can have shingles without ever getting a rash. In my case, the rash just popped up late. If the rash did not manifest, I probably never would have been diagnosed, and would have suffered with pain and useless medical tests.
I was put on an oral drug, Famciclovir, which is an anti-viral. I was also told to increase my Gabapentin dosage. She said I'm contagious, and I'm not to touch anyone, and I'm to wash my hands a lot.
She said the shingles are probably due to either a stress reaction, or a vaccine reaction.
This is the sickest I've been in my life. I actually considered offing myself.
If you are having unexplained pain, this may be one of many potential causes.
You all have a nice day.
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Irish_Dem
(76,868 posts)A friend of mine had it and actually thought about suicide for the first time in her life.
Luckily she didn't follow through.
Every one please get your shingles shots!
LuckyCharms
(21,090 posts)My wife always tells me how tough I am.
I just laugh and say "Then why am I fucking sobbing"?
It's the worst thing ever.
"Get your shots" is good advice, and then pray you don't get it anyway.
Irish_Dem
(76,868 posts)LuckyCharms
(21,090 posts)Irish_Dem
(76,868 posts)LuckyCharms
(21,090 posts)Irish_Dem
(76,868 posts)Wanted to jump off a bridge.
Pain meds didn't help much.
And I fell and had spinal fractures.
Pain was quite bad but not as bad as you describe.
Pain meds actually helped.
electric_blue68
(24,576 posts)
Dixiegrrrl
(154 posts)Like I'd been in a barrel of blisters.
Because it is nerve pain, most pain meds don't help. What seemed to help most was being wrapped snugly in layers of sheeting, to keep me from moving the blistered area.No movement of skin against anything was helpful.
Interestingly my brother, who is 15 years younger, also got them a few months later. He lives in another state, we had not seen each other for years. Never heard about any other family history before or since.
Wouldn't wish it on anyone.
Maybe.
choie
(6,250 posts)Hopefully relief is on its way. 
samplegirl
(13,500 posts)shingles my mom had them and she was sick for 3 months. She cried daily.
I can't get the shot as I had Guillain Barre
Hoping you get some relief soon.
I'm up every night with extreme shoulder and arm
Pain.
Get Well!
Biophilic
(6,221 posts)LuckyCharms
(21,090 posts)
True Dough
(24,881 posts)It's a starting point.
And it's not permanent.
Glad you're still here, Lucky!
LuckyCharms
(21,090 posts) 
Nittersing
(7,816 posts)I really hope this is the beginning of a turn around for you!!
LuckyCharms
(21,090 posts) 
10 Turtle Day
(954 posts)So it can be treated and hopefully alleviated soon. I knew a guy who had shingles and he said the just the weight of a shirt on his body caused unbearable pain. Wow, I just can’t imagine that kind of pain. On the other hand, I had shingles once with zero pain or rash but I just woke up one morning with a huge blister on my chin and another near my nose. Not a good look! But my doc took one look and said shingles so I guess it really manifests in different forms. She’d also said I was contagious and to stay home from work and any activities around other people for a week. At the time I was under the allowed age of 55 to have insurance pay for the vax, which seemed stupid because obviously younger people can get shingles.
Anyway, I hope you’re feeling progressively better today and are back to your normal self soon!
LuckyCharms
(21,090 posts)you can have shingles attack your nerves without ever getting a rash!
I never knew.
chowder66
(11,491 posts)Katcat
(501 posts)Had I e spot on my leg, burned like hell
catbyte
(38,144 posts)I've had 12 bouts of shingles since 1994, all but one down my right sciatic nerve which has caused permanent nerve damage. (Multiple bouts run in my family, yay) I'm currently investigating a spinal cord stimulator to try to reduce the chronic pain. I've also been on a daily dose of acyclovir (antiviral) for about 3 years which seems to have prevented another outbreak.
I've tried lidocaine patches and compound creams which have helped the skin pain, but they didn't touch the deep nerve pain. I wish I better ideas for you, but you just have to tough it out. Easier said than done, I know. I haven't slept in a bed since the pain clinic I used to go to went out of business about 18 months ago and pain clinics now won't prescribe the meds that made the pain bearable. I have to sleep in a recliner because it hurts too much to lay flat. It sucks.
The pain should ease up in a couple of weeks. My permanent nerve damage is because the nerve has been attacked so many times. One shingles attack usually doesn't cause permanent damage. Again, I'm so sorry you're going through this.
LuckyCharms
(21,090 posts)i sleep in a recliner too because of the pain.
And you know what else? I think I have had repeated bouts over the years as well. It all makes sense to me now.
You take good care of yourself.
electric_blue68
(24,576 posts)
Niagara
(11,021 posts)I'm sorry that you have shingles but at least now there's a diagnosis.
This would explain why nothing prescribed was relieving your crippling pain. What a nightmare for you.
Unfortunately, there's break through cases that happen even with vaccinations. My mom got Covid even though she's up to date on all Covid vaccines.
Here's to a speedy recovery for you!
LuckyCharms
(21,090 posts)Maybe now I will stop whining! 
I'll still be getting my vaccinations, as always!
I'm glad your mom got her vaccines. Maybe her Covid might have been worse if she didn't.
Have a safe day.
Niagara
(11,021 posts)That's called venting and you didn't know what was wrong.
No response is required, you just relax and take it easy.
Have a safe day and get some rest. That's an order!
Oh, and one more thing.... *sprays LuckyCharms with Shingles Cooties Spray!*
Ninga
(8,946 posts)with Shingles pain. Sending healing hugs.
LuckyCharms
(21,090 posts) Mblaze
(848 posts)My wife and I went to Mexico. I saw what I thought was a bug bite on my back. It started hurting and by the time we left, the pain was bad and had spread over my back. It still looked like a bug bite. I was researching Mexican bugs.
When we got home, I went to the doc and he said it might be shingles. He gave me gabapentin (which I hated) and a week later, the pain was gone. It was shingles.
I sympathize with your pain. I hope you are freed from it soon. Good luck.
LuckyCharms
(21,090 posts)I don't wish this on anyone.
Thanks for your kind words.
niyad
(128,134 posts)Huggggggs, and hope this helps.
LuckyCharms
(21,090 posts) 
FailureToCommunicate
(14,572 posts)sometimes presents as severe eye trouble as well. My older brother had issues and luckily a sharp doctor at Mass Eye and Ear caught the possibility that it might be shingles. He had delayed getting his shingles shot till a bit too late. Luckily it was figured out.
LuckyCharms
(21,090 posts)And thank you for your kind words.
His eye problems...were they because the sores were near his eyes, or was it a systemic issue?
FailureToCommunicate
(14,572 posts)he could have lost vision in that eye. SO scary, when these mystery symptoms don't point to anything logical. It's like we need EVERY NP or doctor to be as "out of the box" thinking as that TV doctor House.
LuckyCharms
(21,090 posts)requiring injections of Eyela into the eyeball. I bet it's related to this.
FailureToCommunicate
(14,572 posts)
AnotherMother4Peace
(4,927 posts)LuckyCharms
(21,090 posts) 
MiHale
(12,310 posts)He has since passed…not due to shingles. He described the pain to me and showed me the rash…I vowed at that time to never miss a vaccine for it. They were not very effective way back then…but I’ve kept up over the years when new vaccines came available.
Take care Lucky thank you for the info
LuckyCharms
(21,090 posts)It's strange, the sores don't hurt at all. They are just...annoying. The pain is deep. Right in my core.
people
(810 posts)Hopefully it is on its way out now and will be gone within not too much more time. So sorry! Didn't know shingles could cause nerve pain like that.
Ziggysmom
(3,946 posts)Praying for your healing and pain relief. Thank you for making me realize how ignorant I’ve been putting off the vaccine..
LuckyCharms
(21,090 posts)if I had not received the shots.
I'm glad you are calling to schedule!
drmeow
(5,807 posts)Quite a few current opioid addictions (active and in recovery) are from Shingles!
LuckyCharms
(21,090 posts)Opioids don't touch this pain in my case!
Farmer-Rick
(12,217 posts)I fell and sprained my entire leg. I couldn't walk on it it was so painful. I'm allergic to aspirin and so they prescribed opioids. They didn't help. In fact I could tell the exact moment it was mostly out of my system and then I could sleep.
Never taking that crap again.
dweller
(27,449 posts)But does spread chickenpox ?
I always thought shingles wasn’t contagious , and it isn’t .
But it will spread chickenpox to unvaxxed and susceptible infants and children and adults .
Glad you are getting the mri … I’ve suspected a disc problem from your description of your pain .
Get better soon
✌🏻
LuckyCharms
(21,090 posts)She just said "You're contagious".
She cancelled the MRI, considering the shingles diagnosis and the CT scan results were not heinous.
She said "your nerves are getting attacked on your right side by a virus".
greatauntoftriplets
(178,452 posts)It's good to finally have a diagnosis and know that this terrible pain will go away with treatment.
LuckyCharms
(21,090 posts)She's really good. She spent about 45 minutes with me.
greatauntoftriplets
(178,452 posts)My primary-care also is an NP, and she's great. She has a way of relaxing me and making my white-coat hypertension go away.
Sounds like you're in good hands.
erronis
(21,733 posts)and usually more helpful.
Sure, they can't all give diagnoses and prescribe all the drugs, but the caring is a big piece of care.
I hope you get over this soon, LC. And glad you stuck around and are a good personal advocate.
LuckyCharms
(21,090 posts)She's really good...I've been seeing her for about 25 years. We're friends with each other.
3catwoman3
(28,013 posts)Just so misinformation in not being spread, a properly licensed and board-certified NP or PA can absolutely diagnose and prescribe. A "plain" RN cannot legally diagnose, but many an experienced RN has helped novice doctors figure things out.
(Now retired peds NP here. I diagnosed and prescribed for 45 years.)
erronis
(21,733 posts)Since I'm seen by too many specialists (cardiology, neurology, hematology, etc.) it seems that the MDs get involved. Can NPs can read xrays/CT scans now?
3catwoman3
(28,013 posts)CAT scans and MRIs are typically read by radiologists, whether ordered by docs or NPs/PAs. X-rays for things like pneumonia or fractures will ultimately be interpreted by radiology, but may well get an initial look-see by whoever ordered it.
One of my most triumphant moments came very early in my NP career, during my first tour of duty with the Air Force nurse corps. I was assigned to the pediatric clinic in the major teaching hospital at Lackland Air Force Base in San Antonio, TX. All the NPs were included in some of the teaching rounds for the interns and residents. In one session on reading chest X-rays, none of the docs picked up on the anomaly that one patient had. After several minutes of them offering one interpretation(guess) after another, all to be met with the attending physician saying, "Nope," I finally spoke up and said "No clavicles." The patient in question had been born with the congenital absence of both collar bones. It was quite obvious, but I was the only one who noticed.
The attending doc was complimentary, and I was pretty proud of myself.
In some states, NPs can have their own practices. I never wanted that, preferring to have the immediate availability of an on-site physician colleague for the occasional odd thing that was outside my expertise/comfort zone.
erronis
(21,733 posts)I'm sure you have tons of great (an probably some not too great) tales. As is said too frequently: Thank you for your service. (But I mean it.)
NNadir
(36,813 posts)Good luck with treatment my friend.
It behooves me to note that the fact that vaccines are at times ineffective, owing for the proclivity for mutations in the viral genome owing to the high rate of replication, that may affect antibody binding, this is not at all a reason for skipping them. Varicellar voster is a DNA virus, not quite a wild as RNA retroviruses like HIV, where mutations occurred wildly and drug resistance developed quickly, but it still is an issue.
Be well my friend. We wish you a rapid and full recovery.
LuckyCharms
(21,090 posts)for your kind words.
I'll continue to get all my shots...I'm a big proponent of vaccines.
ReRe
(12,137 posts)and wondering if you got any pain relief. Shingles! Stress is definitely what brought my shingles on. It was on my forehead. The rash was the least of my symptoms, though. My nervous system was upside down for about 2 months. Lucky Charms, I hope they learn more with your MRI and that meds you are getting now will give you some relief until they find out for sure what is causing your unbearable pain.
Hang in there, buddy. We are all pulling for you!
LuckyCharms
(21,090 posts)She cancelled the MRI since the CT scan did not show any nerve compression from a blown disc.
I've had discs pressing up against a nerve before, and this pain is just different than that type of pain.
I'm so sorry you had to go through this. I hear you...I've been a mess with this pain for a long time. The rash doesn't hurt right now. Instead, it's all of the deep pain that is brutal.
CTyankee
(67,442 posts)Also, I think there is a preventative shot you can get. And I thought I already got it. Am I right about that?
LuckyCharms
(21,090 posts)but I still got shingles.
Yes, you can get it again.
It may have been worse if I had not received the shots.
CTyankee
(67,442 posts)LuckyCharms
(21,090 posts)I'm not sure about the mode of transmission.
Skittles
(168,298 posts)I'm thinking it's some kind of stress that triggers it - you know, like having a fascist fuck in charge of the country 
LudwigPastorius
(13,672 posts)It’s the same virus. You never really get rid of it. It just goes dormant in your cranial and spinal ganglia.
Stress or a weakened immune system can cause it to “wake up” and attack one of the 31 spinal nerves on one side of your body.
CTyankee
(67,442 posts)
Faux pas
(15,981 posts)I'm so sorry that you have had to suffer so much for so long and I'm glad you have found the answer. Sending the best vibes to you!
LuckyCharms
(21,090 posts) darkstar
(5,731 posts)I too have gone through some serious back pain myself and it indeed can make your brain go to a darker place terms your options. Ny last experience was my worst yet as the degenerative disc issue not worsens over time.
I was walking around—when I had too—saw me walking around holding on to walls and chairs, both hands when I could as I had the knee buckling you mentioned. They made me go through 6 weeks of physical therapy, with little to no relief, before I could even make an appt with pain doc. So then, another 4 week wait. First meeting, another two weeks later, was merely to schedule when I could get the steroid shots right into the 5 herniated discs in my lower back. Then a two week wait to do it again. The first round helped a bit, but the second round was borderline magical and brought me to happy tears that my 14 week ordeal was over.
Every case is different, off course, but I’m wondering if you have done these shots yourself, perhaps in a past flare up. The shots in and of themselves a pretty painful—“you can squeeze nurse Amber’s hand” and I hope she didn’t need a pain doc or hand specialist afterwards herself—but in my case, worth it. And through it all, I got two ten pill rounds of hydrocodone that instructed me to take three a day. So roughly 6 full days of partial relief across the 3 months.
Yours sounds far worse than mine, what with OxyContin not touching yours, so my heart goes out to you my friend. All I know is our health system is completely fucked to let such pain go largely untreated for so long. The frustration and sense of hopelessness really takes its toll along with the pain.
Best wishes moving forward, Lucky, and I hope you get some relief soon.
LuckyCharms
(21,090 posts)darkstar...holy shit...I felt every word of what you wrote. I'm so sorry.
Holding on to walls and chairs...yep...been there.
I've never had steroid shots in my back. I've had them everywhere else though! Even in the second knuckle on my thumb!
This is not a disc pain. I can tell the nerves are messed up. I'm even feeling it in my bladder.
Good thoughts and very best wishes to you, my friend. Stay strong.
darkstar
(5,731 posts)Numb, I guess, and the urge comes on so suddenly. Combined with slow movements, I nearly pissed myself on a daily basis. Had to carry hospital urinal in the car as my wife ferried me about.
LuckyCharms
(21,090 posts)They kept asking me at the hospital if I had any bowel or bladder problems and I told them no...just the pain.
Why must we suffer so as we age?
I'm feeling your pain right now...hang tough, darkstar.
rurallib
(64,318 posts)and for goodness sakes, thanks so much for the info. this info could save many from a similar situation.
Here's for a fast recovery. 
LuckyCharms
(21,090 posts) 
progressoid
(52,213 posts)Why would anyone have stress today? America is Great Again!!11! There is nothing but good news.
Just kidding. Hope you find some relief from this.
LuckyCharms
(21,090 posts)Yes, there's a lot to stress about.
Thanks for your kind words.
The Blue Flower
(6,236 posts)Take good care.
LuckyCharms
(21,090 posts)I can't do much of anything else except sit here and post anyway!
Thanks for your kind words.
barbtries
(30,902 posts)of all the pains, I have heard that shingles is one of the worst pains. I'm so sorry you're going through this. I hope finally having a diagnosis helps, and that the meds relieve you soon.
LuckyCharms
(21,090 posts)
CaptainTruth
(7,955 posts)I hope now you can get some relief!
And thank you for sharing this post, I had no idea shingles could do that.
LuckyCharms
(21,090 posts)Still trying to wrap my head around the fact that the pain is deep in my pelvis, but the sores do not hurt.
It's so strange.
samnsara
(18,677 posts)..i didnt know we could still get shingles even tho we had the shot. I hope youre feeling better soon.
LuckyCharms
(21,090 posts)I had no idea either. I still think it's a good idea to get the shots.
IroningBored
(14 posts)Hello Lucky,
I am sorry to hear you have shingles. My husband has it. His mother had at least 2 cases of it, so there is a family history. He went through all the possible pain management ideas. His doctor prescribed Pregabalin 150mg once a day. Pregabalin is a generic name for Lyrica. His doctor calls it the Cadillac version of Gabapentin. The Pregabalin has eased the pain over time. When I ask him how the pain is, he always says “No change.” But I know that the pain has eased off. He doesn’t flinch when he sits down. Maybe this is one more idea for you to discuss with your doctors. I hope you find some relief! IB
LuckyCharms
(21,090 posts)I appreciate you.
I looked at your post count, but not your profile.
If you are new here...welcome!
Vinca
(52,924 posts)like you've been experiencing this already for some reason. It's post-herpetic neuralgia. I went through it about 12 years ago and it's the kind of pain that you would kill yourself in a nanosecond over if they told you it would never go away. The neurologist I was finally treated by said it's the worst pain a human can experience. I was on the maximum dosage of Gabapentin for over a year getting over it. Sending you good thoughts. It's a hellish experience.
LuckyCharms
(21,090 posts)
twodogsbarking
(16,409 posts)Nerve pain can continue for months. Mine went more than six. TV commercials act like it is a rash that lasts a few days. Get the vaccine. I was on the waiting list a few years back when I got shingles. Wracks your brain for sure. Pisses you off. Skin is the largest organ in the body.
LuckyCharms
(21,090 posts)It's strange...the sores don't hurt right now, it's a deep pain.
Maybe because they just popped up last night...I don't know.
This pain makes you question your very existence...it's fucking horrible.
I've been vaccinated, and I encourage everyone to get vaccinated.
twodogsbarking
(16,409 posts)The doctor told me I could use topical treatment but it wouldn't help. She was great. Meds may only help if taken soon after symptoms; less than three days or so I think.
LoisB
(11,923 posts)shingles. I hope you will soon get 100% relief.
LuckyCharms
(21,090 posts)IbogaProject
(5,264 posts)And I am glad for you that this might resolve somewhat quickly. Best wishes for a good recovery.
LuckyCharms
(21,090 posts) slightlv
(6,923 posts)I'd never have guessed shingles... especially after you got the shot! And I had no idea you could actually HAVE shingles and NOT have a rash! Makes me wonder....
I've been diagnosed (via testing and via surgery) with Degenerative Disk Disease, Sciatica, stenosis, and whatever it is that compresses the vertebrae in onto of each other with no fluid in between them. I've had two surgeries and no doc that said he'd never do back surgery again on a back like mine (shrug).... he should LIVE with my pain! LOL
I've taken oxy, and like you I found that it not only intensified the pain, it concentrated it to a knife's pinpoint. I don't like it, and if I take it, in addition to the pain focus, it gives me a damned headache to boot! I'm on hydro, and other than never being able to get a damned bottle to last for 30 days before I can get the next script filled, I have no complaints... I've just developed such a tolerance for it and the country today would rather scream "drug addict" and restrict my access to the only drug that's helped. But oh, gods! Do I empathize when you say suicidal pain!
My pain always starts in the low center between L and S and then moves immediately down my left side, but it doesn't go around toward the groin... on the back and outside of my hip and thigh only. I had the right hip replaced about a decade or two ago, and have begun wondering if it's time to do the same for the left hip. I wasn't looking forward to it because I'm so much older now, and there's no one around here to help out while I recover, or to ensure that hubby is okay and eating.
You've given me pause to research other avenues. Thank you! And I'm so glad you found a good diagnosis and treatment. Did you have the 1-shot vax or the 2-shot vax? I'm wondering if the differences in the two vaccines had any effect on you actually manifesting shingles? I had athe 2-shot, and have never given shingles another thought. I had a *very* slight case along one side of my face and chin and throat. And OMG! I literally thought I was gonna die! Never mind I'd opened up my home to a FidoNet club to which I belonged and had about 30 people bedding down all over my house! Doc told me mine was stress-induced. THAT I could believe! I'd been working on the planning committee for about 3 months prior to everyone landing at my house. We had a great time, don't get me wrong... but it wouldn't have been so much better without the pain in my face and throat.
Picaro
(2,259 posts)I have all the back issues you have, but the pain is fairly easily managed with Tramadol/muscle relaxers. When this back thing started out 40 years ago I spent 4 days in the hospital because I couldn’t walk, but even then the pain was not intractable like what you described.
Never would have thought of shingles. Good thing you went to that PA.
My experience is that PAs are almost always better. I had a 5 month sinus infection about 15 years ago and went to multiple doctors who either told me it was allergies or acknowledged that it was a sinus infection and gave me a course of antibiotics that proved ineffective.
Finally went to a CareNow and got a PA named Cathy who actually listened and empathized. She decided to throw everything including the kitchen sink at it. I left with 6 prescriptions and in two weeks I was cured. Will never forget that woman. She didn’t save my life, but it felt like it.
Now when I make an appointment at my primary care practice and they ask if I’m okay with a PA I always say I prefer a PA.
Good luck to you. I hope the shingles pass quickly. My wife has had them three times and they are horrible. I pray I never get them.
3catwoman3
(28,013 posts)In 1996, I started with a 6 pediatrician practice as the first NP they ever had. When a parent would call for an appointment, the front desk staff started out by saying, "Would you mind seeing the nurse practitioner?" I asked them to stop phrasing it that way, because it carries the implication that maybe there's a reason someone should mind. I didn't want them setting up that expectation. Just say, "Dr. X has an opening at 10:00. Mrs.Y is available at 9:30."
It was always a puzzle to me that people worried about about whether NPs and PAs are qualified to do what we do. No physician-owned, decently run practice is going to risk its reputation by hiring someone they don't trust and have confidence in.
When people would express a concern along the line of, "Do nurse practitioners and physician assistants know what they don't know?" my answer to that was always that anyone who provides you a service of any kind needs to know what they don't know, be it a lawyer, a plumber, a roofer, a dentist, a mechanic, whatever/whoever.
So glad you are happy with your PA.
Bayard
(27,548 posts)I'm glad you finally have an answer, and can be treated appropriately. Your description of the pain reminds me that I need my shingles booster.....
58Sunliner
(6,165 posts)Thank you for posting this. I hope I never have shingles.
vanlassie
(6,168 posts)He was 80, and after a few days he started saying “I think it’s my chest.” So he was immediately sent to the Cardiac Unit for tests- and was there five days before someone determined it was shingles. That was a very expensive diagnostic journey.
Polly Hennessey
(8,292 posts)someone was suffering and I felt helpless. Now I am feeling happy for you and that you are looking forward to much better days. 🥰🫶🏼
highplainsdem
(58,786 posts)Vitamin C and lysine can also prevent and help get rid of shingles. It worked for my mother when she got shingles years ago, before there was any vaccine.
She had blisters across the back of her neck. Couldn't stand to have even strands of hair touching the blisters. The pain was agonizing.
Her GP diagnosed it as shingles and gave her a prescription for it, but told her the prescription might not work. It was fairly expensive for something he didn't have much confidence in, so she didn't bother getting it.
It was already known by then that lysine was effective against the herpes virus that causes cold sores.
Shingles is also caused by a herpes virus.
She took megadoses of lysine and vitamin C. Most of the pain from the blisters was gone by the next day. The blisters themselves were almost gone within a week. When she saw her doctor again, probably to have her INR checked because she was on a blood thinner for a-fib, she told him what she'd done, showed him the improvement in the blisters. He'd been positive the week before that she had shingles, but seeing the quick improvement, he wondered aloud if it had been a misdiagnosis. Even though it was common knowledge then that lysine helped against another herpes virus.
Btw, as for conditions that can make it more likely for either cold sores or shingles to appear - those include getting too much arginine in your diet. Arginine is an amino acid that counteracts the amino acid lysine.
The most commonly eaten.foods that are high in arginine are nuts and seeds. If you were binging on sunflower seeds, peanuts, etc., that makes it more likely you'll get a cold sore or shingles. (And I mean really binging, not having just a handful of those seed foods.) I found out years ago that binging on nuts and seeds can result in a cold sore for me. Haven't ever had shingles, though I had chicken pox as a child, so I have that herpes virus. I do take lysine regularly.
I hadn't known that shingles can cause pain even if blisters haven't appeared. That's important information, and I'm glad you posted it.
I just saw the same info on a website set up be dermatologists:
https://www.dermatologyaffiliates.com/blog/shingles-treatment-options-what-works-best
That same page recommends lysine for shingles:
Moreover, I recommend that patients with shingles increase their intake of foods high in lysine, an amino acid that has been shown to help manage viral conditions. This is especially important for individuals with immune-compromising conditions like uveitis or a history of measles, as their systems may require additional support to combat the shingles virus effectively. By ensuring a diet that supports immune function, patients can create a stronger foundation for their overall shingles treatment plan, potentially reducing the severity and duration of their symptoms.
electric_blue68
(24,576 posts)1 - 2 grams daily in the past.
Sometimes increased to 3-4 grams when my particular early symptoms of a sinus infection came on. It worked ?8 -9/10 if I did it early enough. My then MD scoffed. I didn't care.
I will look up about lysine.
Will have to consult with a NP about something before I may add it ba k ( Vit C)
Ty info!
highplainsdem
(58,786 posts)every meal, between meals, and at bedtime. So six times a day. That amount needed only for a short time, because the pain and that nasty patch of blisters went away so quickly.
Even my mom's cardiologist tried to get other cardiologists at the heart institute more aware of nutrition and supplements, and it was like talking to a brick wall. He told me he knew Canadian cardiologists who were much more openminded.
Yes, you should let your doctors know what supplements you take, including any herbs. And talk to your pharmacist as well, since they're sometimes more aware of interactions than doctors are, and if they disagree, get more opinions than just those two, instead of just guessing which one might be correct. An aunt of mine took a prescription from her doctor that her pharmacist was adamant she shouldn't take in combination with another prescription. She ended up in the hospital, then a nursing home, and only went home again for hospice. Her daughter blamed the doctor, whom she saw almost every week at their Catholic church. But I'm sure that doctor could've found other doctors to agree his prescription wasn't malpractice, if my cousin had tried to sue him.
Allopathic medicine is necessary, and there are some great doctors out there. But people should also take care of themselves as much as possible, and learn as much as they can about nutrition and exercise and supplements and stress reduction, and not expect doctors to be able to help them very much if they've neglected their health. Some people take much better care of their pets' health than they do of their own. If you watch much TV, it's likely you've seen commercials for healthy pet foods, and then harmful food for humans - and then prescription drugs for humans - fairly close together.
LudwigPastorius
(13,672 posts)I didn’t cry or pass out, but I was moaning and praying for the sweet release of death.
I’m sorry you’re going through this, but at least the docs can properly address it now. Get better!
Trueblue Texan
(3,931 posts)It makes sense that shingles could cause crippling nerve pain, but it sure never dawned on me that it could cause such intense back pain. This is the first I've heard of it. You certainly learn something new every day. Thank you for sharing this valuable information.
LuckyCharms
(21,090 posts)I'm reading everything and I appreciate all of you.
debm55
(51,865 posts)face. It was the absolute pain, I have ever experienced. I was fine before--no symptoms, Got up in the morning and my side of face including the eye was in pain. I did not have the shingles shot. The tour bus would not let me go back home on it. I took a Greyhound. Went to the hospital in NYC and they gave me Pain pills for the ride to Pittsbugh. I have NEVER felt that kind of pain before. Take care . Love, deb.
summer_in_TX
(3,894 posts)Your description of the amount of pain you have been in was excruciating to even read about, LC. I've been praying for your relief and a good diagnosis. I'm so glad you have the good diagnosis and hope the meds will help your pain level quickly improve.
HeartsCanHope
(1,376 posts)Shingles is awful. I didn't get it anywhere but on my scalp. Felt like my hair was on fire! I was put on the same drug, and it cleared up pretty quickly. Will continue to think of you and sending healing vibes.
TBF
(35,218 posts)I still have my specialists for certain things, but the NP monitors my blood pressure and anything routine that comes up. Definitely an improvement over others I've had through the years. Hope you get to feeling better soon!
Exp
(653 posts)episode of my bowels and urinary tract both locking up. It was extremely difficult to pee and defecate for five or six days. I was extremely worried, obviously. The problems were entirely due to my nut and seed allergy. Historically, my nut allergy would always show a skin rash, but not cashews, cashews went to work on my innards like no nut has ever done without a skin rash warning.
I made a guess, stopped eating the cashews and the problems went away in two days.
UpInArms
(53,580 posts)What a wild strange ride, my friend
am so glad you finally have a diagnosis and a path forward
Marie Marie
(10,650 posts)Now here's hoping for some quick recovery from that debilitating pain you've been experiencing. We need your wicked sense of humor around here.
On a side note: You and everyone I've known that had shingles describes that kind of unbearable pain. Reminded me of when I used to listen to RFK Jr on Air America and one night - right after I had received the first generation of the shingles Vaccine - he was going off on how dangerous this and the next generation (the one currently in use) of this vaccine was. I didn't know what a crackpot he was back then but I was still so glad to have gotten some protection from what I knew I never wanted. And he is probably still advising people not to get the shots. Quack!!
Evolve Dammit
(21,308 posts)
littlemissmartypants
(30,606 posts)Although there are several. Your compassionate sharing during emmense pain is very, very big. It sets an example for us all.
❤️
calimary
(88,274 posts)I hope you get to feeling better SOON!
3catwoman3
(28,013 posts)...was the one to figure out what was going on with you.
Here's hoping you will soon be feeling better.
Clouds Passing
(6,297 posts)I had shingles once and it is painful. I took Chinese medicine and it went away quickly.
BigmanPigman
(54,199 posts)He scared the shit out of me. Now you say you did get the shot ans was told you can still get Shingles..why? Does it only work sometimes?
Niagara
(11,021 posts)The shingles vaccine is highly effective. But some people can still get shingles after getting the shot. People who do usually have milder symptoms and a shorter illness. You’ll also be less likely to develop complications from shingles, including postherpetic neuralgia.
https://my.clevelandclinic.org/health/treatments/22996-shingles-vaccine
It's also unfortunate but some people can get Shingles more than once as well.
https://www.ncoa.org/article/can-you-get-shingles-if-you-have-already-had-it/
BigmanPigman
(54,199 posts)Niagara
(11,021 posts) 
FakeNoose
(39,162 posts)She didn't go through the awful back pain that you're experiencing, but I remember that she had a pretty awful time of it. It started as a rash in her upper thighs and it moved up into her woo-hoo area.
Sis had no idea what it was, but she thought maybe it was poison ivy. Went to the Emergency Room after a few days of unbearable pain (middle of a hot, humid summer too) and finally they told her it was shingles. Wow it was shocking news because nobody in my family had ever had shingles. We're all baby boomers, grew up in the 50's and 60s, so all my sibs had chicken pox growing up.
The ER doc gave her some topical ointments and pain pills, but that's about all they can do. My sister really suffered for close to 2 weeks and finally it was gone.
mucifer
(25,388 posts)facial drooping. They failed a swallow study. IV morphine did nothing . Like you they got high dose Gabapentin and antivirals. Hospitalized with a feeding tube for a few weeks.
Luckily the symptoms all resolved. No more IVs no more feeding tubes. No facial drooping.
That's my story to tell all over 50 to get the shingles vax.
Fingers crossed high dose gabapentin helps your pain!
2naSalit
(98,384 posts)
SleeplessinSoCal
(10,320 posts)I curse you Chickenpox for hiding out and retaliating so viciously!!
Marthe48
(22,149 posts)It helped a little.
I hope your NP and other medical professionals have tracked down the cause of your pain, and you'll have a quick recovery!
soldierant
(9,077 posts)electric_blue68
(24,576 posts)I have to set up two med things in Nov. Once they're done I'll call my pharmacy for a appointment.
Think I'll also check if there are comparisons for which ever shingles shots there are. I do know you need 2 doses 2 -?5 months apart.
stillspkg
(136 posts)I can't imagine that kind of pain. You are in my heart. May the shingles be gone!
C Moon
(13,279 posts)I had the Shingles vaccines. The second one took me out for a few days.
But man. Chicken Pox is no chicken.
mgardener
(2,206 posts)You feel better.
Pain is a horrible thing.
pansypoo53219
(22,667 posts)
Joinfortmill
(19,301 posts)Thanks for the good info. Get well soon and let us know how you are doing.
NH Ethylene
(31,241 posts)My husband has bad pain along one side of his pelvis and leg - probably his arthritis getting worse - but now I'm looking for a rash, just in case.