My bro has been suffering from shingles for nearly three weeks. Although not really dangerous, it has been making for a very miserable bro due to unrelenting nerve pain on one side of his upper body (upper chest/arm/neck) to lower face and wrapping around to back of head. That's about all we've been talking to each other about since it started. As if he doesn't already have enough health issues to dominate how he feels, this comes along and it sucks to the max! And it never seems to want to end!
Anyone else here ever had it or had a loved one or friend have it?
my mom, and my wife's dad both suffered from the same thing. that is why when i was old enough i got a shingles vaccine. and i encouraged my wife to get it also. i absolutely do not want to go thru that. (there is a significant probability that a person will suffer from that if not vaccinated).
Nobody in the family has had it Larry.
So sorry to hear your brother is suffering from so much pain. I’ve read that it’s pretty bad.
Not sure what the doctors have prescribed but I would have tried gabepentin from the getgo and if no help, I’ll bet anything that Lyrica would help.
Both help a great deal with intense nerve pain, especially the Lyrica. I’m away from home and can’t post links or effectively look stuff up but am wondering he’s tried Lyrica?
Look it up to see for yourself.
Ive had chronic nerve pain for 35 years and tried Lyrica one time. It worked TOO good. I felt no pain at all and went outside and worked my arse off for 12 hours and did stuff the pain told me not to do.
Then I took a hot shower as hot as I could take, like usual .but the Lyrica caused me to crank the temp to all hot and feel no pain.
unbelievable.
then,the next day after the Lyrica wore off the pain was double the pain of 2 days earlier because I did things that I shouldn’t have and the pain told me not to do and what I used to do before my autoimmune disease messed me up.
no more Lyrica for me until I’m on my last leg and in unbearable pain.
it can be addictive but taking it to get thru shingles seems like a great idea!
what do you think?
That su%^s Wx. My dad had it maybe 10 years ago. Not as bad as you describe. Dr. prescribed steroids. This could also mean that your brother's body was under some kind of stress. Also seems like it took 6 weeks or more to heal.
What cutworm said makes sense to help with the inflammation and also anti viral drugs(which would have made sense from the get go and not wait so long) but he seems to be having a great deal of pain.
Fortunately, he should recover completely and one would think that should be pretty soon.
bear said:
"that is why when i was old enough i got a shingles vaccine. and i encouraged my wife to get it also. i absolutely do not want to go thru that. "
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bear,
I plan to get the shot(s) very soon. My bro hadn't gotten one. I think that's because he couldn't get a live vaccine. But now they have a new non-live one apparently. So, after he gets past this, maybe he should get the new one. We'll check with his doc.
Mike said:
"So sorry to hear your brother is suffering from so much pain. I’ve read that it’s pretty bad.
Not sure what the doctors have prescribed but I would have tried gabepentin from the getgo and if no help, I’ll bet anything that Lyrica would help."
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Mike,
Thank you. He's actually been taking 200 mg of Lyrica daily for many years due to diabetic neuropathy. His Rx is for 300 mg/day. So, he's now taking the full 300 mg/day to try to help with the pain. Several docs said that that's the best medication for shingles nerve pain. But even so, he still continues to have bad pain. He started on an antiviral about 4 days after his first pain and took them for a week. Then he stopped for a week. Now he's back on them for 2 more weeks.
cutworm said:
"That su%^s Wx. My dad had it maybe 10 years ago. Not as bad as you describe. Dr. prescribed steroids. This could also mean that your brother's body was under some kind of stress. Also seems like it took 6 weeks or more to heal."
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cutworm,
He already takes a low dose of prednisone daily for being a transplant patient. I wouldn't want him to take more due to it causing blood sugar to get out of control. I bet you're right about the stress.
Thanks Larry!
thanks for sharing.
I’ve taken At least 5mg of prednisone every day since late 1994 To suppress my overactive immune system and to battle systemic inflammation.
was up to 15mg/daily several years ago and stayed on that dose for a couple of years.
Saved my life. Thank God for modern medicine!
Im guessing the diabetes destroyed his kidneys and the prednisone is an immunosuppressant/anti rejection drug For his transplanted kidney.
Lots of side effects with long term prednisone I read.
one is that it can spike blood sugar by making the patient insulin resistant which is exactly what a diabetic doesn’t need…..but he has to keep his kidney from being rejected.
im sure that you are totally informed and using good medical advice to get him the best treatment.
when dr.s or others question the time I’ve been on prednisone, I like to mention the side affect I would be having from not taking it…….death (-:
Your brothers horrible case of shingles is probably connected to his diabetic neuropathy and I’ll bet you knew that.
I wish there was more that could be done.
I take Doxepin too that helps with my fibromyalgia/nerve pain and helps with sleep but compared to Lyrica it’s nothing.
if he’s taking 300 mg of Lyrica and still has this much pain, it’s hard to imagine the intensity of his pain without it.
if he’s been taking 200mg for a long time, maybe he built up a pretty high tolerance And it’s not working as effectively as it did when he first went on it.
going up to 300mg, means that when he backs down to 200mg, it’s not going to work as well for his diabetic neuropathy as it di before jumping to the max.
tough situation, man. At least we live at the time in human history thats blessed us with choices.
100 years ago and any time previous to that in human history both me and your brother would have died as much younger men!
I actually had shingles when I was 11 years old. The immunosuppressant medication I was on at the time for my Crohn's disease worked a little too well and allowed the shingles infection to occur.
My infection was on my lower back and by the time we figured out what it was, it had created liquid filled blisters. In my case, I was admitted to the hospital and spent 2 weeks in a negative pressure isolation room behind 2 sets of doors (effectively an airlock). This is because certain cases of shingles (like mine) can be infectious and cause chicken pox in people who have either never had chicken pox before or haven't been vaccinated against chicken pox.
I was given some sort of anti-shingles drug via IV drip during my 2 week stay. They had to lower the dose early on though because the high dose they started me on started to affect my kidneys. Basically, this just prolonged the recovery period.
After 2 weeks, the blisters had all drained and scabbed over and I was deemed safe to release. I was sent home with additional medication (this time in pill form) that I had to take for at least another week. Those pills were 'huge' too, at least to an 11 year old who had a hard time swallowing his normal Crohn's medication.
The blisters however left a scar on my back that remains to this day.
My understanding is that shingles manifests along a single nerve path/cluster (as opposed to the original chicken pox infection that produces spots all over the body). Shingles is often incredibly painful and/or unpleasant depending on what nerve cluster is affected. In my case, it manifested along a nerve cluster that originates at the spinal column and wrapped around the left side of my body to the front.
Beyond being an anomaly to the medical staff (an 11 year old with Shingles), I actually experienced no pain from this infection. There were times where it felt itchy but I don't recall it being an overbearing feeling.
Since then, both my father and my wife have had Shingles. Neither of them developed blisters like I did, neither required hospitalization but both experienced pain/discomfort during the course of the infection. As I recall, my father did take medication for his Shingles infection, but my wife did not and was able to recover from it without medical intervention.
I'm sorry to hear that your brother is having a rough time of it. Every person who develops a shingles infection has a different experience. Based on my own experience, it can certainly take weeks to get the infection under control and recover.
Thanks, Mike, for your last posts.
Thanks, madmechanic, for sharing. Wow, your case was quite the anomaly both with being only 11 and having no pain!
Bro update: he continues to have intermittent intense shooting pain on his right side, centered from the neck/lower face to upper chest and shoulder, wrapping around to upper back and right to back of neck. At times, I've put roll-on lidocaine on those areas, which gives some temporary pain reduction at best. He's also started to itch at times in parts of the rash. I've been putting an anti-itch cream on these spots, which temporarily relieves the itching. The rash continues to gradually heal up with all blisters and followup scabbing/crusting just about all cleared up and leaving behind mainly flat red areas.
Wow, madmechanic, that's at least a 1 in a million story. Thanks for sharing that amazing story.
Larry, I hope your brother is thru the worst of it. He's had a rough life.
I go for a bone density scan tomorrow to make sure the prednisone hasn't caused bone loss. If it has, they want to put me on Fosamax which has more side effects than any med I know of.
Has your brother had bone density tests?
The best way to keep bones strong (besides lots of calcium and vit,. D) is strength training with heavy weights.
Thanks, Mike.
If he has had bone density tests, they weren't recent. He takes only a low dose of prednisone and he takes 2,000 units of D3 (gel capsule).
1. Mike, did you get the results of your bone density test yet?
2. My bro told me that his overall pain level has finally (at least for now) decreased some. He's usually very cautious before saying something like that and thus hearing that is great news. His rash continues to very slowly heal though there's still a good deal of angry looking red on his upper right chest/shoulder and especially his front neck. I suspect that the neck is exasperated by heat rash that he sometimes gets because some of that extends to his left side, which gets confusing. I just gave him a quick hair trim as he can't go to a barber due to too much pain. His temp is at his normal in the low 98s. He remains exhausted from this, some of that made worse from not sleeping well. He is near 3 weeks and one day since first symptom (pain, which preceded rash by 3 days).
My bro has had shingles for exactly a month now. Though his pain from shingles has reduced somewhat more and the rash continues to heal, he still has periods of intense pain and itching in localized areas on and near the rash areas. He also has had persistent pain going down his right arm to his forearm, which is well beyond the rash, when using it and his hand. And this is with taking various pain meds several times a day. This particular pain does not seem to be getting better. So, although I feel this is most likely shingles related, I'm not sure because it is worse when he tries to use his right hand and it doesn't seem to be getting better. It almost seems as if he has something going on there that is muscle-skeletal, perhaps a pulled or torn muscle??
As dependent as he already was before this, this is making him even more dependent on me regarding every day simple tasks. He now has more trouble than normal reaching over for things on the adjacent cart that are within his reach due to too much pain. We've been putting more things right on his bed to try to help with this, but that's easier said than done as the bed already was crowded with items. Also, he's been trying to use a picker upper and other long objects to make it easier to reach with less pain, but again easier said than done,
I'm so sorry to here that his recovery is not taking the usual path.
Maybe his underlying medical condition and diabetic nerve damage situation has left him vulnerable to new damage to that condition.
Will your family ever consider skilled nursing.....or maybe that should be.....at what point will you no longer be able to provide him with 24 hour care and he may require equipment and potential emergency medical treatment that, no matter how dedicated, you just don't have.
My bone scan was actually normal for my right hip and lumbar spine which is shocking for somebody on steroids for almost 3 decades.my left hip has some bone loss but only modest for my ge.
It's all from being relentless and disciplined with my strength training and excercise.
I have never gone for more than 2 weeks without exercising......doing something.....anything I could do since I was a kid.
Of course that's part of the problem. I have ehlers danlos that eroded my cartilage and tendons and the over exercising when younger made it many times worse.
Mike said:
"Will your family ever consider skilled nursing.....or maybe that should be.....at what point will you no longer be able to provide him with 24 hour care and he may require equipment and potential emergency medical treatment that, no matter how dedicated, you just don't have."
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We (I) do not even want to consider a nursing home (NH). Not only would he feel quite uncomfortable there from a psychological standpoint, which alone could hurt him physically due to stress, we'd miss each other deeply due to our closeness. Moreover, I see no way that he'd get anywhere near the level of personalized care he gets at home. Furthermore, the stats on life expectancy in nursing homes are not encouraging. I'd be constantly worried about how he's doing and that would increase my stress.
He and I have informally discussed getting me help via people (nurses, aids, therapy) coming to the house, but that's easier said than done and that's not just due to financial reasons. Also, he already has a longtime employee who's at our house M-F during 9-6, which is very helpful to me during those hours. He also has an aid to help give baths. She and I gave him a sponge bath last night though it took many hours because getting him to stand up beside the bed on his walker to do his midsection and change his clothes was extremely hard and he couldn't stand up too long due to pain and weakness. Doc appointments are mostly virtual.
From time to time when he qualifies (like after a hospitalization), he has home health visits for a couple of months. Looking longer term, I'd very much want him to have, say, 12-24 hour nursing/aid care once needed as opposed to ever going to a nursing home. The home is one level. There are a few steps, but I have movable ramps. He has a motorized wheel chair and walkers. He uses his walker to get to the nearby bathroom for #2. He does need a lot of help getting off and especially getting back on the bed as well as getting on and off the toilet due to his disabling severe lower back pain combined with morbid obesity. As a result, the amount of time from getting off to getting back on the bed is 2-3 hours.
Regarding equipment, we had a walk-in-tub put in. It is so cool as it has jet bubbles and is like a tiny inside wading pool! He sleeps in a hospital bed and has a C-Pap though no O2 is needed. His employee and myself check his blood sugar, temp, and other vitals several times a day. We work together to make sure he's given the right meds every day, including insulin shots. We fix and serve all of his meals in bed, where we use trays. Yes, it is exhausting and takes much of our time! But I love my bro!
Aside: I desire the same: I want to pay for 24 hour care at home from nurses/aids (not from family) rather than be sent to a nursing home if that situation ever comes up to privacy/independence reasons.
Larry,
I already had tremendous respect and gratitude to you for your insightful posts here and also knowing your commitment to taking care of your brother.
However, after reading this last post, I’m especially honored and privileged to know you!
Devoting your life to taking care of a physically handicapped person because of your love for him and compassion for other people.
we got my mother in law a bench for her bathtub before she passed which allowed her to sit outside the tub, then slide to the other side of the bench with help, so that she was in the tub.
then, another female in the family would use the sprayer hose I put in to wash her.
worked great.
Mike, Thank you and thanks for the suggestion. Was that a walk-in tub? I don't think that method of entering would work for my bro's walk-in (also considering his size and pain, etc.), but I'll ask him. Regardless, I don't know when he'll even be able to take a tub bath again. His level of pain needs to improve and he probably needs to get stronger.
Update today: he still has shingles related pain and is still pretty miserable much of the time. He feels best when sleeping.
Not sure what your situation is Larry but this is what we got her so that she could sit in the chair outside of the tub, then slide across the outside of the tub and be sitting in the chair INSIDE the tub and we could shower her and wash here hair while she sat in the chair inside the tub.
Then slide her back outside of the tub. Dry her off and back to bed.
There are numerous different ones at different costs. I just randomly picked the one below. I think the one that we found in town was a bit cheaper than this.
Wow, that's pretty cool Larry.
So there's a door that you open, he walks in and then you shut the door behind him and its water tight?
Yes! Isn't that amazing? I wasn't even aware of these til a couple of years ago. Who would have thunk there'd ever be a bathtub with a door that opens and then closes water tight? It essentially gives us the equivalent of a tiny but still deep wading pool along with jet bubbles in the comfort of our bathroom! It even has lights that automatically alternate from one color to the next to the next, etc., making the water change colors!
Frank Zappa had a song called “Don’t eat the yellow snow”
His sequel might have been “Dont drink the yellow bath tub (pool) water (-:
I got my 3rd and final shot of the HPV vaccine on Monday for the hundreds of flat warts on the top of my hands and 18 skin cancers(mostly basil cell but 2 were squamous cell) the last 19 months.
I also got the shingles vaccine!
Since my autoimmune issues include some neuropathic, fibromyalgia type pain in odd places at times, I figured getting shingles could be hell.
Thanks for your descriptions serving as a reality check on that risk Larry!
I've only been sick a couple of times in the last decade but I want to make sure my wife gets vaccinated. She's been sick more times in the last year as me in the last 20 years.
Also on the list is the pneumonia and tetanus vaccines.
The pharmacist actually brought up these shots as being a good idea for a 66 year old guy.
I said, "give me all 4 right now".
The side effects for each one can be flu like symptoms the next day (just like the COVID vaccine) and getting all 4 would multiply that greatly.
She recommended 1 at a time but I got the HPV and shingles this time and will get the other 2 next time.
As expected, I feel great today after 2 vaccines. The shingle vaccine arm is pretty sore but not as bad as the day after a vigorous strength training session at The Pit Barbell Club.
Everybody that is able, should incorporate SOME form of strength training and other exercises into their lives.
There is no substitution for this being a very positive contributor to health, including bone health, functionality and well being.
http://thepitbarbellclub.com/history-2/
