Glandular Fever virus and PMR?: Hello everyone... - PMRGCAuk

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Glandular Fever virus and PMR?

MalloryMoss profile image
14 Replies

Hello everyone,

Does anyone know if the Glandular Fever virus could be linked with PMR? I contracted GF and Hepatitis B of the Liver in 2005, it took me 3 years to get over it and live my life normally, I took no drugs, it really was a case of rest and gentle exercise, the Drs warned me if I didn't start exercising I was on the road to Chronic Fatigue/ME, that was enough to give me the kick I needed. I eventually started jogging/running and in 2009 joined a local running club. I never looked back and if you have read my bio/initial post where I was diagnosed with PMR on 20th October 2023, I was competing at GB level (age group) for Swim, Bike (Triathlon without the run). I wonder if pushing myself to be the best I can be has triggered a dormant GF virus..... anyone have any thoughts on this, it's just a gut feeling I have.

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MalloryMoss
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14 Replies
piglette profile image
piglette

In my case I reckon it was stress that triggered my PMR. Did you feel under stress?

MalloryMoss profile image
MalloryMoss in reply topiglette

Hi Piglette, I didn’t “think” I was under stress. I retired from full time work in 2021, the 2 years, I’d say I was under a hell of a lot of stress during the last 2 years working so 2019-2021. 🤷🏻‍♀️

piglette profile image
piglette in reply toMalloryMoss

Perhaps it had built up over time and then something small just tipped it. My stress was the NHS Pension System run by Equiniti, grrrrr.

PMRpro profile image
PMRproAmbassador in reply toMalloryMoss

But even pleasurable activities are a stress - like holidays.

PMRpro profile image
PMRproAmbassador

Not that I know of. But PMR results from a lifetime history of insults to the immune system and eventually one is the straw that breaks the camel's back and it goes haywire, turning on the body because it is unable to recognise body as self. This creates inflammation - a mixture of autoimmune and autoinflammatory disease.

Some experts do think that overexertion can be one of the final triggers - which are different for each patient - but it is well known that competitive athletes can have pretty crappy immune systems because of the constant effect of both training and competition on the immune system.

There are a few of us who had ME in our 20s or so but I don't think that has reemerged, it is maybe a sign of a stressed immune system. I don't think pred would help if it were a resurgence of GF or ME.

MalloryMoss profile image
MalloryMoss in reply toPMRpro

Hi PMRPro

perhaps the overload of training was the final straw. Thank you.

PMRpro profile image
PMRproAmbassador in reply toMalloryMoss

Possibly, but it is just one of many factors that built up.

PUMC profile image
PUMC

Before I was diagnosed with PMR, my former primary care manager ran numerous blood tests, and I tested positive for Epstein Barr (mono, glandular fever). I got a second opinion from an Infectious Disease Dr, and she diagnosed “classic PMR.” She also said I was “too old for mono” and that my immune system was in such a state, she wasn’t surprised that I had tested positive. At any rate, perhaps there is a connection.

PMRpro profile image
PMRproAmbassador in reply toPUMC

"EBV is a type of herpesvirus called herpesvirus 4. Most cases of EBV don't cause symptoms. Other cases, especially in adolescents and young adults, can lead to infectious mononucleosis. Once you get EBV, the infection stays within your body for your entire life in a dormant state where it's inactive or sleeping"

I don't think it being there is that significant. I never knowingly had mono - but could still have picked it up just like any of us.

MalloryMoss profile image
MalloryMoss in reply toPMRpro

yes I agree that the infection stays for life, I've always felt that rather than know it. I was very ill with GF, 3 months off work then a slow return to work plan over 6 months and my life was hugely impacted, I would say more than PMR because I couldn't do anything but work & sleep for 18 months to 2 years before I could start adding exercise in. I feel I can manage PMR better having gone through GF and learned the hard way how to manage my energy levels.

MalloryMoss profile image
MalloryMoss in reply toPUMC

Hi PUMC that's interesting! In 2005 I was 40 when I was diagnosed with GF, no one could tell me how I got that either. I do think there is a connection. Thank you

SNOWMAN546 profile image
SNOWMAN546

I agree. I was diagnosed in December 22 and GF was found in my bloods. Which I think I picked up early November after my son came home after his first few weeks at uni with the tail end of 'freshers flu'. I was unwell for a few days, nothing serious I just put it down to a virus, then I gradually declined. Feeling extreme fatigue, just not feeling myself, then the pains in my arms and legs started. The rest is history so they say. So yes, I definitely think there's a link.I've put my PMR down to either GF or the covid booster jab. Not sure which (or combination of both attacking my system) but this seems to have been the trigger.

Great work getting to such a high level of competitive sport after such a debilitating condition. I have every admiration for you.

MalloryMoss profile image
MalloryMoss in reply toSNOWMAN546

Hi Snowman546 thank you, this gut feeling I have feels right. The fatigue is very familiar, and I read somewhere about RNA too, I’ve decided not to have anymore booster covid jabs, no flu jab either.

My husband was overheard talking about me to a colleague yesterday (he’s a volunteer at our local national trust) and a man in his 70’s apologised for interrupting and said “there’s definitely a link, and stress has been the trigger.” My husband didn’t ask any more questions!! I would like to have found out who this guy was, and to find out more, he’s got strict instructions if he sees him again! I’ll post again if he meets him again.

SNOWMAN546 profile image
SNOWMAN546

I've also decided not to have either jab. And yes, if the stranger appears again make sure your husband has a list of questions at the ready! 😂

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