Shingles

Hi Debbie I am so so sorry that you are suffering the after effects from Shingles.

This was the one of things my team said was a big problem post SCT. The side effects indeed, as you are experiencing, can be harsh and requires a long recovery. I have been able to keep clear but still have a stock of Aciclovir to take at the first signs.

I think that greg777 has had Shingles so lets see if he picks up on your post.

Gentle and healing ((hugs))

Hi Mike,

Brilliant memory - I had forgotten myself! It is a while ago now. 

I have no idea how severe mine was but it has all cleared up and is not causing any lasting big issues. I still get quite bad aches in my legs and souls of my feet, especially when I wake up first thing in the morning. It is filed under “annoying but get on with it ailments”. I’ve no idea if it’s connected to shingles, to be honest I have stopped asking the GP now as it was getting to the point I was calling them up every week and that wasn’t doing me any good.

Debbie - one thing I have learned post-SCT is that the body doesn’t quite function as well as it might have done before. I have thought I have relapsed about 500 times over the past 3 and a half years with various things being off in my body. There is really no easy well of telling. I have 2-3 trigger symptoms which I know the feeling of, if I ever get them, I am straight on the phone to the medical teams - I don’t know if you have those based on your own experience? For everything else, I just ride it out now.

Sorry I couldn’t be more useful on this one. I would say I operate about 80-90% of what I did pre-transplant, which is a pretty good result. The shingles, chicken pox, annular erythema (which I am dealing with at the moment) all kind of merge into one. I often joke that I reckon that my body is in a permanent state of infection (three school age kids)!

The best I can say is if it is concerning you, definitely get it checked out by the medical teams, they will definitely be able to set your mind at ease.

Here’s hoping it clears up really quickly.

Greg

Thanks to both. 

It's so annoying because I want to exercise and body aches are preventing me from doing so. If I've still got general pain by next week I'll see what the consultant says about it. I definitely didn't have it before the shingles. 

Debbie

Debbie, like Greg I am just over three and half years post SCT. The more I do the better I feel, the less I do, especially during winter I feel like my muscles start to seize up.

I have bad nerve damage in my neck so this area does not like not being moved and stretched but I am bad for not doing the exercises I was given by my physio. Yes, talk with your team just to help take your mind away from the ‘what if’s’

Hi Debbie, 

the theory about Shingles is that the rash and pain track along the spinal nerves affected. 

However that still doesn’t explain the ‘all over’ type pain. And nerve pain really is hard to cope with. I too suggest you talk to your team to get better pain control, with that exercise (which you say you want to begin) will be that much easier. 

Hope things improve for you very soon

hugs xxx

Hi Debbie sorry to hear you have Shingles,  Iv'e never had it but understand it's really painful, often brought on by Stress.

Hello Everyone-I am so happy I found this post.  My mother had her SCT in April of 2018 and has done a remarkable job recovering....barely a sniffle.  Her two year checkup was postponed until just last month (thank you COVID), and everything looked fantastic.  Last weekend her tooth started to hurt.  She went to the dentist, and sure enough, needed a root canal.  The next day she noticed shingles welts on the side of her face where the root canal was done (not close to the eye, thank goodness).  She went to see her doctor who ordered a shingles biopsy (still officially waiting on results) but started her on shingles meds anyway.  She felt kind of crappy for the first couple of days, had more energy and appetite yesterday and seems to be moving even more today.  She hasn’t had a fever and the only pain is on that side of her face.  Here is what is frustrating me.  She had her MMR shot right after her two year check and was due to get her Shingrex shot in a couple weeks, making her immunizations complete.  If it weren’t for the freaking corona virus, I can’t help to think this wouldn’t have happened.  I just feel bad for her.  

But thank you Greg for sharing your experience with Shingles and good luck to you.   It makes me feel better.  I just need to keep reminding myself that this is temporary, and it will clear up.  Her original AML diagnosis was in August of 2017, right before I went back to work-I’m a teacher.  I think I have some “anniversary effect” going on with this happening at the same time of year, with similar weather and going back to teach (virtually anyway) next week.  

As always, thanks for reading my “across the pond” friends!