Anyone living with shingles

I have been lucky enough to be on watch and wait since my CLL diagnosis in 2003. In 2013 I got shingles in my back, round my waist to and down my left leg ( I was very stressed by a house move at the time). I can still feel it in my left leg and I have numb toes on both feet. As soon as I get tired, fatigued or stressed my symptoms flare up in all the original areas plus anywhere else in my body. My Haematologist and Rheumatologist say I will probably never shake it off with my compromised immune system. Has anyone else experienced any similar or not similar problems with shingles?

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Hi Erica, not long after my diagnosis, I got Shingles too. I went on Aciclovar and luckily it did clear up with no problems or recurrence. I’m not sure if there is anything ‘natural’ you can take to combat your symptoms, but maybe a nutritionist might be able to help?
Good luck and as you know that stress can cause a flare up, try and avoid if you can. Not easy I know. Sending love,
Vivien xxx

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Hi Vivian, thanks for responding, I think the shingles is another thing I have just learnt to live and I get on appreciating every day, oh, and trying not to get stressed!!!
I hope you are managing to look yourself.
Love
Erica xxx

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Hello @CLL6,

Thank you for sharing your experience with shingles with us. Shingles is an important issue and we are glad their is some discussion about it.

How long did your shingles symptoms last? Was it a brief or did it vanish after treatment?

Hello @Erica,

You mentioned possible flare ups if you are stressed or tired. Did the hospital recommend options to reduce your symptoms?

Hi Joshua
Luckily, it did clear up quickly after starting on Aciclovar. My consultant did say he would have given me an extended dose had he known. I went to see my GP who only prescribed it for one week.

Regards

Vivien

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Hi Josh
I am on constant nerve ending pain medication for my shingles and the osteoporosis in my back. The Rheumatology Consultant said I will probably have the shingles to different levels for life and that my body is riddled with it as my compromised immune system is unable to fight it. When it flares up It acts as a warning alarm clock, which I probably need, to tell me I have overdone physically or I am emotionally stressed.

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Hello @CLL6,

Why did the consultant want to give you an extended dose?

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Not sure, it was all very new to me. He just said he would have given me two weeks worth of tablets as he didn’t think one week was enough. I didnt question him then - six years later - I would!

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@CLL6,

it sounds like he wanted to make sure that the medicine worked, but I am pleased it worked six years later. What were your symptoms that you may have had shingles?

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