Stem cell transplants for blood cancers

A group for people to discuss stem cell transplants for blood cancers such as leukaemia and lymphoma. This can include transplants using a person’s own stem cells or stem cells from someone else (a donor).

Shingles

DJohn
Posted by

Hi everyone 

I had my transplant 8 months ago. I've just had an attack of shingles. It's dried up now but the area is still painfull. The problem is that now 3 weeks on I still have aching limbs like flu, (no fever). My muscles bones and joints seem to hurt constantly which makes every day movement painfull. I'm having to take painkillers still to be able to move freely which I don't want to. I've searched online and the post nerve pain is supposed to be localised nerve pain to where the shingles were, there is no mention of body aches all over which don't feel like nerve pain. 

I took 800mg acyclovir 5 times a day throughout the shingles for a full 7 days. My bloods won't be checked for another 2 weeks, so I'm trying joy to panic about relapse! 

Has anyone who's had shingles had body aches after the shingles has dried up and how long did it last?

Debbie

Thehighlander
Posted by

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 has had Shingles so lets see if he picks up on your post.

Gentle and healing ((hugs))

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

greg777
Posted by

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

DJohn
Posted by

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

Thehighlander
Posted by

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’

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

moomy
Posted by

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

Moomy

Dawie
Posted by

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