CFS and shingles link?

[Caroljm28]

Hi, I have had chronic fatigue/ME for four years now, but I am concerned that my mother may also have developed it. She had shingles a few years back and I've been reading about the connection of shingles and CFS. Does any one have any experience or knowledge of this personally. I am trawling through the internet reading what I can but would be good to hear from someone in the CFS/ME community.

[ukmsmi4]

Hi Caroljm28

Yes there is a connection. The only two members of my family who have had shingles are myself and one of my sisters. We both are the only two with an ME diagnosis.

I can't guarantee it but my assumption is it's because ME is a neurological condition meaning it involves the nervous system. Shingles seats itself in a spot in the nervous system and manifests from this. Where it seats itself dictates where it manifests. But that spot differs from person to person.

In my case the GP told me it was seated in a spot in the nervous system at the bottom of the back of my neck. This meant I got the rash down my left arm from mid upper arm to finger tips, including under a finger nail.

I have found this article which about a study involving it which may help shed some light. It seems as if it is a bit more complicated than my theory above, though sorry my brain fog is preventing me from fully understanding or explaining the article. Hopefully you can get the gist of it.

Gentle hugs, Margaret.xxx 🤗🤗🤗

[Caroljm28 in reply to ukmsmi4]

Thank you Margaret for your interesting reply. I can't see a link to the article but have been reading abstracts if two articles published in 2014 about this. I will have to try and get the full articles. Have you tried the anti-viral medication that is suggested. I would be interested to know how long after the shingles your CFS developed.

Carol 🙂

[ukmsmi4 in reply to Caroljm28]

Oh blimey Carol, that's because I forgot to paste the link in. Told you the brain fog is bad 😜

Here you go phoenixrising.me/archives/5806 . Though obviously I'm in no position to verify it's accuracy, but I can't find a comment to say this theory has been disproved.

I've only had shingles the once and I'd had it too long before going to GP so it was too late for anti-virals to work. I think you have to have them within 72 hours. Problem was the rash first started to appear on my hands then my arm. As I get dermatis on my hands and eczema elsewhere I just assumed it was another bout of something like that. I was busy at work and the time and a bit stressed so I put the rash and the tiredness down to that. Wasn't until the rash started to blister that I realised it was more than that and went to the GP. So no sorry I've not had the anti-virals.

Also when my sister kept getting shingles it was in the early years of her ME diagnosis which she's had for over 30 years possibly closer to 40. I'm not sure anti-virals were suggested for it then.

My ME though developed some time before I had shingles though. Looking back I've had it since a serious bout of flu in the early 90's. Possibly longer but that is the first likely event I can pin it to. Unfortunately, despite my sister already having an ME diagnosis, I spent 15-20 years going backwards and forwards to various GPs with various symptoms getting nowhere. It wasn't until I had a massive ME crash at work March 2011 that I finally found a GP who recognised the problem and started the long process of elimination tests.

My sister was in a way lucky enough to develop the condition in the 'yuppie flu' label days (cringe every time I hear or use that expression) when they still called it ME before the psych lobby hijacked the condition and conflated it with CFS in order to belittle it's effect.

Margaret.xxx 🤗🤗🤗

[Caroljm28 in reply to ukmsmi4]

Thank you so much for your replies Margaret, so good to compare information. From my mother's point of view I'm coming at this from the opposite angle, she had shingles about three years ago but has been getting progressively fatigued in the last two or so years, have exhausted all the doctors ideas and mine until I thought about a possible link between the two earlier today. I will keep researching and get my mum back to the doctors. I have read this morning that trials have been made with the anti viral meds for CFS/ME sufferers with some success.

Wishing you and your sister continued recovery/positive management for the future.

Carol x 😀

[ukmsmi4 in reply to Caroljm28]

Thanks Carol, same for you and your Mum too.

Let us know how she gets on with the docs. And don't forget if you need any more info just ask on here and someone will help I'm sure.

Or if you like please feel free to pm me.xxx

[damiana200]

Hi I developed Shingles as a result of extreme stress last year. About 4-5 months ago(oct.18) I was diagnosed with C.F.S. Fibromyalgia. There is definitely a link.

[Caroljm28 in reply to damiana200]

Thanks damiana200. This is an old thread but it has resurrected my interest in this issue. We didn’t get very far with my mother’s doctor at the time, very closed minded and age’ist. We’re seeing another doctor now but still struggling with a diagnosis. Back to the research...