I have shingles. I am 47 and had a transplant just over a year ago. Ironically, I was scheduled to get the first of the Shingryx this week!
Anyone have experience with shingles?
I am really just looking to commiserate. The nerve pain is so bad I can’t walk. The only way I am comfortable is lying in bed without moving. Anything help? (I am taking an antiviral and gabapentin).
I respectfully ask for no long term horror stories - I am trying not to think too much about the “what if’s” and just get through the acute phase. Thanks!
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I had shingles about a year and half out. It was so bad I screamed multiple times a day when I had the "attacks". Unfortunately, antiviral needs to be taken very early on to be maximumly effective and I wasn't offered it early enough. However I survived and you will too. Hang in there and really rest.
Thanks for your reply. I am definitely resting - I couldn’t walk yesterday because the pain was so bad. Only comfortable lying down, so that is what I am doing! Lots of audiobooks.
I have read that shingles pain lasts for weeks/months. What I don’t understand is if it stays as bad that whole time or peaks and then you have intermittent pain. Right now I don’t think I could drive or go to work. Hoping that changes soon! What was your experience?
What areas of your body affected? Mine is on left leg mostly the back side. Similar to you, minimum rash but dreadful and unpredictable attacks of acute pain (10 out of 10). What I found helpful in preventing frequent attacks is relaxation of muscle groups especially in the affected large area. The pain came up following muscle contraction like when I took movements or stretch. It isn't possible to not move, but minimize them helps. The acute pain phase lasts no more six weeks but unfortunately my thigh sustains enough nerve damage that I still feel chronic (but much less severe) dull pain there when stress surfaces.
Sorry to hear you have lasting pain. Glad it is at least less severe. As a transplant patient, I am learning over and over again how powerful stress is.
My rash is down my left arm, chest a little, and upper left back a little. The muscle relaxation makes sense. If I take a few steps (or any movement really) I get the shooting pain. I have to stop to breathe and reset - I think what I am doing is actually relaxing those muscles. I hadn’t thought about it that way.
Six weeks of the acute pain? Oh boy. As I am now I can’t imagine driving. I am a teacher and have an active young child (I am in a “soccer mom” phase of life). Will have to rethink what is possible for the next month.
The acute phase overlapped with holidays so I did nothing but watching TV for 10 days to take my mind off pain . I teach at university and Zoom teaching was/is available and my research assistant was helpful with my research work. I was able to continue my work but that was definitely not priority at the time. Regarding chronic pain, it is manageable for me now, and importantly, not everyone develops prolonged pain so please don't worry.
During the acute phase, definitely let your doctor know how frequent and severe your pain is. Gabapentin can help prevent the acute attacks if you take it at a high enough dose, and taking high doses is safe, but it must be supervised by your clinician.
oh yeah.... I had it. It started in a spot on my left side of my face. I thought I had burned myself somehow and then whammo, it took off. It went across my face up my eye socket and INTO my eye and onward to my scalp. I looked terrible and was really miserable for a while. But the pain stopped before the rash went a way. However, I did damage my eye. I ended up with a blood clot that floated around my eye for almost a year. I have no residual issues now. AND I got the series of shots. Not a fun disease and I am sorry you are suffering. Try warm cloths and try not to pick at it.
I am glad you have recovered completely! That sounds scary. The rash isn’t actually bothering me. And I have big bandaids covering most of it because I am worried about infecting family members. I am sure it will be hard not to pick at it as it gets crusty though!
Did your pain stay bad for long, or did it peak and then get better?
Ugh! Sorry to hear about your shingles. My hubby, with the transplant, got his shingles in mid August this year. It began around the eye and moved upward into his scalp. He had very high pressure in that eye but it's coming down now - he's still taking eye drops and a herpes antiviral (also took Valaciclovir) but he's slowly being tapered off them. He still has scalp pain - which prevented him from getting haircuts for a time. Slowly, his pain is going away. Then, at end of September, I got shingles too! So lightning struck twice. Mine originated in the lower ear area and fanned out across my face. I I'm largely over it (3rd week), but still have pain at the base of the ear/jaw - it's not much of a problem. My pain is slowly going away too. I suspect my hubby's compromised immune system is making his last longer, but he's definitely improved. I'm still wondering why both of us were cautioned against taking the shingles vaccine at the time of hubby's transplant. Afterwards, we simply didn't give it much thought - just casually agreeing we would get it sometime this fall. Anyway, this has delayed us now from getting the covid/flu and rsv vaccines but we will start very soon with that and then proceed with Shingrix - hubby will get approval for that from his nephrologist. My hubby was at home when his outbreak happened and he largely stayed there. He looked like he had lost a street fight with that eye of his. When my outbreak happened, we were traveling. I turned to Teledoc to be diagnosed and treated. Anyway, I used lots of makeup and kept my distance from people. I've since read about incidences of people catching not only chicken pox but also shingles from someone who has it. So covering up well until the blisters dry up is a good thing to do. Be encouraged! In our experience, shingles will pass and the pain will eventually disappear too - it's seems to be doing that with us, anyway.
Oh my goodness! I can’t believe you both got it! What a bummer. Glad to hear you are both on the mend.
I feel lucky that the rash is mostly on my arm so it is easy to keep covered. I am a little nervous about giving it to my family, but most of what I have read says that it is passed through contact with open blisters. I am hoping that if I keep it covered with bandaids and long sleeves that I will keep it to myself.
I wondered if I missed something too by not getting the vaccine before transplant with the zillions of other vaccines that were required. At my recent visit, my nephrologist casually said, did you get the shingles vaccine yet? So I planned to do it in the next few weeks. I wanted to space it out, so I got the flu/covid vaccines first (I am a teacher and there are tons of things going around!). I’ll ask my nephrologist about why I didn’t get it before, just out of curiosity.
The gabapentin seems to be helping a bit - this afternoon I was able to get up and move around a bit, load the dishwasher, etc. It is a small victory, but a step in the right direction!
Hoping we all heal quickly and completely. Thanks for sharing your experience!
Question to you Darlenia: did your husband who received an organ transplant and got the shingles virus in mid August: did he receive the most current shingles vaccine before transplant? Just curious to know since my spouse had his transplant almost 5 yrs ago and received this vaccine prior to transplant along with many others too to be ready. Just curious to know for future reference. I am very sorry this happened.
Your spouse is fortunate! My hubby and I were in the process of getting all our immunizations done - Shingrix was the last one - when the transplant suddenly happened. (He had been cleared for transplant for only a few months.) Then, the odd thing was that his discharge nurse met with both of us and told BOTH of us not to proceed with it now. I don't know why I was included in that statement. Looking back, maybe she meant that I should not encourage my hubby to get it? Or maybe because the virus exists inside both of us (unlike most other viruses), that somehow there's a small risk of it waking it up immediately after that immunization? Anyway, I took it as a blanket statement. And then, because this happened only a couple of years ago, Covid vaccines and Covid antibody injections took over everything. However, with Shingrix, your hubby should be well protected. (And I sense you too because I honestly think my hubby spread his Shingles to me, even though it's supposedly not possible.) You're a lucky couple.
HI Darlenia, Thanks for writing me back. I wish you and your h usband all the best. Too long of a story, but my husband with the donated kidney and I still live like it is March 2020. He makes no antibodies against covid19. We are extremely careful in how we live. I hope one day we can do "normal" life things again. Right now our risk factor is very much taken into consideration in all we do. Anyway, stay well.
Thank you! You've done really well for yourselves. Wishing you that good health continues to come your way. Yes, our radar is always always up and running too. Perhaps immunosuppressants will improve over time so we're not so vulnerable.
I had them too a couple years ago. Was very painful and lasted couple months. Lived in Miami then and decided to just soak in the ocean after awhile and I think the saltwater finally got rid of it.
came here to empathize! I am so sorry you’re going through that. Sounds like you’re very strong and will manage, it’ll suck but you’ll get through! It’s always been very scary to me. My non transplant sister had it in her 30s and said the pain was unbearable. I was turned town by 2 different pharmacies for shingrix bc I’m under 50 (37) but I asked for a prescription for it and still after giving me a little resistance/triple checking (even though the cdc clearly says we can get it), I got my first shot just yesterday. For those under 50 don’t hesitate! Insist on it and be persistent.
Glad you are getting the vaccine! I find it is about 50/50 for being able to get vaccines and extra doses without a lot of explanation and dr’s orders (since I am under 50). Like you, I am very persistent 😊.
Glad you persisted! I've noticed a lot of younger folks can definitely get it! The comedian Conan O'Brien got it at 28. My hubby's nephrologist had it when he was in high school. And, in fact, I personally suspect it's can be quite catchy - I've read about a team of programmers getting shingles and then there's my hubby and me as well as other reports. The vaccine should be available to everyone.
I had shingles before my transplant. It was on my leg. It hurt so bad to have clothes brush across it. I finally came up with wearing my shape wear under my clothes. That was a relief. The shape wear did not move around and I really could do whatever I wanted to. I realize that won’t help if you have shingles on your head. Maybe you can find some compression sleeves.
Thank you! Compression sleeves are a good idea! The rash is mostly on my arm. I have been using big (2”x3”) bandaids on the worst parts but they hurt to take off. Much less itchy when covered though and, as you said, keeps the pain down from touching clothes. I’ll see if I can find some.
I had it in my bones around the breast area at first I thought I had just pulled a muscle but went to doctor after a week and it was shingles it was painful but they prescribed some Tylenol3 to help me get some rest mine never broke skin so for that I am thankful and Blessed. I Pray you get through this with little to no discomfort sometimes it lingers for months and sometimes it may be a couple of weeks but take care of yourself and you’ll be fine.
I have not had shingles, but as soob as I turned 50 I gor the vaccine prior to my transplant. I was lucky that by then, they had already developed the Non-live shingles vaccine as I couldn't, and still can't get any live vaccine. Maybe that is why drs used to recomend against it when you were close to the transplant. I pray for a soon recovery. All these storis sound like horrifically painful.
My own experience includes my neighbor getting it and telling me how truly awful it was and my going to my doctor right away and asking to get the vaccine and he said no you’re too young since I was 48. As soon as I could I get it I did. I am really sorry this happened to you!
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