Late diagnosis for shingles's
Posted , 6 users are following.
I developed a spot on my arm and thought it was a spider bite about a week later it was so painful I went to the doctor and by then they were a few more spots. She didn't know what it was and said to use Cortizone cream. It took about three weeks to get the diagnosis from an ER doctor. By then it was in my scalp my eyebrow my arm across my back and if you want my leg. I was given an antiviral for five days. I went back to the ER because of the pain and they said it was a bacterial infection and treated me for that. It seems that it's spreading more on my scalp and my arm on the same side. I'm frustrated, in pain and truly exhausted. I'm not sure where to go from here to get rid of this. I'm now five or six weeks into this. I'm in my mid 50s. Any advice would be appreciated!
2 likes, 53 replies
hope4cure Samantha4040
Posted
Omg you have really experienced shingles in several areas. It so exhausting and a terrible disease there's so little help.
my doc gave me the vaccine for shingles right after diagnosed. It has shortened the duration and reacurance time. You could try that if you haven't already.
Avtivirals dontbseem to helpmi also use a numbing gel and nerve pain meds.
I'm hoping you will get thru this soon.this is so difficult to manage. I was seeing a pain clinic doc helped a lot too,
Samantha4040 hope4cure
Posted
I've been up all night, I think I'll go to the doctor. I didn't know there's a gel you could put on to help it. But I'll ask about it. Yeah it's crazy it started on my arm right around my elbow and then start on my back and the areas got larger and larger and then my scalp and now yesterday I noticed more spots coming out near the other ones. I thought people got him one area along The nerve line. Oh yeah I have one spot above my eyebrow it's not bad it might even be getting better
hope4cure Samantha4040
Posted
If you experience nerve pain urtotin/gabapentin can help,and ask for pain meds to control the pain. And lidocaine numbs the area.,
hope your better soon soon this is such a miserable disease. 🌞
Samantha4040 hope4cure
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They give me Tylenol three with codine it only made me sick it didn't touch the pain. Gabapentin makes me stand her so I can't take that. I hope my doctor will help me today I will ask about the lidocaine or something that would nominees areas. And something to help me sleep
hope4cure Samantha4040
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Good to hear your seeing your doc try gabapentin your body can adjust to it in small,doses then work youepr way up. I had the same issue.
hopexxx🤔
Samantha4040 hope4cure
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I tried gabapentin twice but it makes me Statter and I can't get my words out correctly.
hope4cure Samantha4040
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I understand it gives me migraines. Have you tried Lyrica it's for nerve pain?
Hopexxx
Merry19451 Samantha4040
Posted
I am so sorry for your suffering.
Were you diagnosed with Herpes Zoster-Shingles? Were the vesicle-blisters all on the same side?
Did the lesions come out, you seemed to get a little better, and now you are sicker again?
You should have been given the Antivirals for seven days, first of all.
Are you immunocompromised, at all with SLE, ITP, Psoriasis, RA, or bowel disease, cancer?
This seems to be protracted with you, or you have a recurrence of shingles and need to be on a second round of Antivirals. Are the lesions indeed vesicle-blisters that occur in waves or crops that scab over. Do you feel as if you are getting the flu but have not had any respiratory symptoms? Headache, fever, chills, and sweating, aches and pains, fatigue and exhaustion, malaise? Do you have a burning or lancinating pain where the rash is?
Sorry for all the questions...
Best regards
Merry Juliana
Samantha4040 Merry19451
Posted
Hi Mary, I did feel a bit better but that's all over with now. Yes, I have rheumatoid arthritis, Graves' disease and fibromyalgia. But I am not taking any medication for any of it. All that medicine made me feel worse. I get meningitis and encephalitis from this herpes type virus. I've had it five times already it seems like it's every 5 to 7 years I get it pretty crappy right? Now my big fear is to have the shingles and the meningitis at the same time They look like spider bites to me at first but when the pain came I knew it was shingles because the pain was unbearable. I don't know if I have a fever I always have the chills and I'm sweating so it's hard to know and I didn't check
Merry19451 Samantha4040
Posted
Hi Samantha,
Hopefully, you have gone to a Physician and gotten Antivirals for a 7-10 day course.
Also, you need analgesics that actually help you during the acute stage of the infection, such as Opioids.
The topical creams containing Lidocaine and Benzocaine do help, as well.
I am certain you are an experienced patient at this and know more than most of the Medical Profession regarding the diagnosis and treatment of this heinous disease.
With chills and sweating, your body is in a fine mess, Samantha...I have SLE and Sjogrens, and ITP, so I know how it goes...And it explains the Herpes Zoster-Shingles, recurrent.
Please let me know how you are doing.
I have a supply of antivirals--Famvir, which I find works best for me. As soon as I get a hint of symptoms of the Herpes Zoster-Shingles, I start taking them. The episode isn't nearly as protracted or painful when I do that.
Also, please Google the Lysine-Arginine Herpes Shingles diet. I am not into health fads, but I eat a healthy Mediterranean diet. Michelle on this forum brought up the connection of following this diet and a lightbulb went off in my brain as I used to eat a lot of legumes-high in Arginine. The amino acid Arginine triggers the Varicella virus, and the Lysine amino acid suppresses it. I stopped the nuts and legumes and didn't have an episode for five months, which was a miracle for me. Usually, I have them every three to five weeks. Ugh . I decided to eat nuts as an experiment and had another excruciating episode, (but aren't they all? LOL )2-1/2 weeks later. I am off nuts/legumes for good.
Please keep me and us posted!...
Merry Juliana
davideastchurch Samantha4040
Posted
It does sound like shingles. The exhaustion alone is typical. And 5 days of antivirals is less than recommended. The norm is 7 days and it can be increased to 10 for recurrent cases.
It is terrible that doctors continue to misdiagnose shingles. The resultant suffering is awful, as you are, sadly, discovering.
There are medications you can take to help with the nerve pain, which can be excrutiating. I'm on amitriptyline for post herpetic neuralgia. And there are topical applications that you can use, although I have no personal experience of those. Also over the counter pain killers really don't help. I'm using codeine 30mg to supplement the amitriptyline as necessary.
It really does sound as if you need advice and help from a medical practitioner who actually knows something about shingles!
I hope you're able to get help and relief soon.
Samantha4040 davideastchurch
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Yes, I realize that now. My healthcare has been horrible to say the least the first two visits they said they didn't know what it was at the doctors office LOL
davideastchurch Samantha4040
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I'm so sorry for you. Perhaps no one ever mentions shingles at medical school! 😟
hope4cure davideastchurch
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I swear that a good point. There seems to be very little in the way of treatments. Anyifungals don't work well,for me at all.
Samantha4040 davideastchurch
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hope4cure Samantha4040
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Samantha4040 hope4cure
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I believe it. I'm actually a licensed massage therapist and I have found many things on people, I'm just not good at diagnosing myself. You had a very good massage therapist. I know they do biopsies to diagnose shingles most times. I had to almost begged for a culture to make sure it wasn't any bacterial infection. I knew it wasn't but one doctor thought it was.
Merry19451 Samantha4040
Posted
Samantha,
Are you in the US or UK?
Most health care professionals are terrible at dermatological disease. The old timers were great as they used their brains instead of lab tests to diagnose. Many do not like to read or look up things they don't know. I have worked with many of them, sadly.
The medications for treatment are the following:
Antivirals Acyclovir 5x/day least
efficacious
Valcyclovir 3x/day huge pill
Famciclovir 3x/day
1 Acute Pain Opioids most effective
Oxycodone most effective
Codeine
Hydrocodone * most nausea and
vomiting
2. Lyrica-Pregabalin
Neurontin-Gabapentin
3 Amitriptyline
Cymbalta
Venlafaxine
4 Topicals
Lidocaine
Benzocaine
5Cool Compresses
Hope this helps
Rest and sleep
Merry Juliana
davideastchurch Merry19451
Posted
That's really helpful Merry. And interesting that aciclovir is the least effective as it's the one most commonly prescribed here (UK). I suspect it's the cheapest!
My GP prescribed a different antiviral last time - it may have been famciclovir - over an extended period and I'm hoping it's put my shingles to bed. So far, so good!
Merry19451 davideastchurch
Posted
I saw that Acyclovir is prescribed the most in the UK, because it is the cheapest, by far. It did not help me at all in controlling the recurrent episodes, BTW. I cannot get the Valcyclovir down as I develop a swallowing problem only when I have Herpes Zoster-Shingles due to the involvement of the Cranial Nerves.
Best regards
Merry Juliana
hope4cure Merry19451
Posted
also the shingles vaccine in clinal studies after breakout have proven a shorter duration and less out breaks . Have you had the shingles vaccine?
boosters are required also every few years.
it really slows down the process in the body & less meds are needed.
at least in my experience it has been a life savor.
hope4cure Samantha4040
Posted
thats a sad sorry experience tom endure. To have to beg for treatment and teats. Unfortunately that's more the norm thaws days than not.
sorry you have singles also get the vaccine it will help,shorten the duration and time between breakouts. My doc did that right after I broke out. And have had a booster since.
Merry19451 Samantha4040
Posted
Samantha,
As you are immunocompromised, it often occurs that more than one dermatome is affected. The cervical nerves can supply the neck and come down to supply the elbow. I don't know where your other vesicle-blisters are on your scalp to comment. I would purchase the OTC Lidocaine cream and apply it to the non open lesions and lesions that have scabbed over. You can purchase OTC Lidocaine spray, as well.
Merry Juliana
Samantha4040 Merry19451
Posted
Hi, I'm in the US. I have tried some pain meds. Most haven't touched the pain and make me so sick. Maybe cool compresses. Most of the wounds are open and the doc said I can't put most soothing things on those areas. I think I'm losing my mind lol. I haven't slept, I was going to try to sleep but I'm scared of how I may wake up. More spots. I have more since yesterday.
All you have mentioned are a big help and I will try some tomorrow.
Thank you kindly, Merry!
Samantha4040 hope4cure
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yes, I plan to get the vaccine as soon as I'm able. I don't want to go through this again. Honestly, if I had a doctor that did all she/he could do to help, show genuine concern, offer ideas I could deal with this better. I feel like I'm in a country that doesn't speak the same language so I just have to pray that I get better.
Samantha4040 Merry19451
Posted