Living with Recurring Glandular Fever Many people who c...

For David79733

Dear David : I MADE A MISTAKE. I WAS SPEAKING ABOUT GUILIAN BARRE SYNDROME NOT WHAT YOU HAVE EPSTEIN BARR SYNDROME / GLANDULAR FEVER. PLEASE DISREGARD WHAT I SAID RE. GUILIAN BARRE SYNDROME IT DOES NOT APPLY TO YOU !

I'm concerned my words have worried you as you have said. I must not have been thinking straight when I confused the two because they are different. They are both viruses and in that sense we are both suffering.

Please forgive me ! and disregard my original post.

Something I heard that helped me re. the word "worry", change it to "concern". "Worry" is like spinning your wheels and with "concern" we move forward. Also, I've been studying Eckhart Tolle. The practices he teaches help you to live in the moment and to realize you are much more than your physical body. To meditate simply by resting. Repeat over and over a poem or prayer that uplifts you and gives you strength. Meditate by enjoying something you love to do. Meditation isn't a difficult thing or unattainable, it is simply resting and/or clearing your mind of negative thoughts. Can be done while doing the dishes. Recently heard you can meditate with your eyes open by sitting in your backyard or park and watching nature. Escape your situation, in healthy ways, despite feeling ill. Is there a creative activity you like, or can pursue, that you can get lost in, such as painting or writing a novel or poetry or studying.

And ask your family to be patient with you and support your efforts to deal with the times you feel ill. DON'T put pressure on yourself at these times. Be cared for by others and cared for by yourself. DON'T let negative thoughts enter your mind. Rise every morning telling yourself, "RISE & SHINE" ! LET GO OF YOUR ILLNESS WHEN YOU CAN. WE ARE MUCH MORE THAN OUR ILLNESS.

Here is a quote from a letter I received from a friend and I'd like to say the same to you and everyone else who is suffering from reoccurring glanular fever :

"I sincerely pray that you get the help you obviously need. You deserve to feel better and be able to get on with your life. Please keep in touch. I want to make sure that you are treated and cared for because you are valued."

I phoned her and thanked her and she said I was a "human BEING". And this meant a lot to me, as well, because people who don't understand, often treat people who don't necessarily look "ill" with kindness and consideration. I believe they are coming from a selfish place when they do this, thinking what they expect you to do for them. They need to be reminded that you can only do what you are able to do and that at this low time you need their kindness and consideration / understanding. One of those times, as well, when the saying, "God forgive them they know not what they do." and "When you know better you do better."

THIS NOTE IS A PRAYER. Every note we post is a prayer.

WISHING YOU WELL,

Cathie

Pensioner with GF

Even though I don’t fit the normal profile for contracting GF, thank you to those who have contributed to this blog, it has been very helpful.

For any older people who like me have been surprised at succumbing to GF so late I share my experience.

In March 2013 I celebrated my 62nd birthday and in the next two weeks I was my normal active self: I moved 3 tons of manure on my allotment, swam a mile and cycled 4 miles each way to the pool, and had a day’s walk - all part of my life.

On April the 1st no less! I woke feeling absolutely shattered - every task was a huge effort, even walking to the shops, normally 4 minutes, was too much. My face, cheeks and round my eyes were swollen. I didn’t have swollen glands as such, or sore throat, or a temperature.

The scariest part was being intellectually challenged in that I was inserting bizarre words in a sentence, forgetting simple words mid-sentence, not being able to remember what I was saying half way through a conversation, not being able to follow a train of thought or do simple arithmetic.

My doctor picked up my mental state before I mentioned it, put me on beta blockers and booked an MRI scan. This was clear, but symptoms continued for six weeks when I had a blood test which eventually revealed GF. Initially I was ill for 50 weeks.  I had good periods and bad periods but even at best I didn’t have a tenth of the energy I was used to.  During good periods I was much better intellectually.

Quite suddenly I was fine again and able to do a 5 hour walk; swimming I found harder.  I was pretty well for about 4 months but trying to catch up missed time with my family (all children and grandchildren live a long way from us so times together are hectic) I got tired and had less energy.

I then came in contact with a cold virus and like the other contributors this knocked me back even further - the usual, though not quite so bad symptoms returned. I had found when I had the yearlong initial GF that contact with viruses really were (and still are) bad news. I think doses of Echinacea and vitamin C help, although I already have a very good low fat, low salt and low-ish sugar diet with loads of fresh fruit and veg.

I was disappointed not to be able to dialogue with people of my own age who had/have GF, as we are rare and our symptoms are different- except the fatigue. I was given these links which helped me, especially the link with the content on misdiagnosed dementia. Those symptoms come back when GF reoccurs.

Hope this might help someone.

Sheila

http://jama.jamanetwork.com/article.aspx?articleid=658821

http://www.drplace.com/Infectious_mononucleosis_in_older_adults.16.29315.htm

http://ageing.oxfordjournals.org/content/35/2/196.full

 

 

 

Hi Susan

Thanks for your comments, as you say it's good to have someone of my own age to share experiences. Your reply is very timely since 10 days after walking in the Lake District including an 8 hour walk and Helm Crag, I'm feeling, as you say, like I'm getting over flu.

Managing it is so hard, some days you do virtually nothing and don't improve others you push yourself to do things (not long walks) and you 'work through it' and vice versa. It's so hard to plan ahead. But as you say being retired doesn't have the same strains as young folk sitting exams or beginning their careers.

I'm going to Scotland in a fortnight, 480 miles away to help look after my grandchild- just hope I'm fit by then!

Hope you are feeling well.

thanks again sheila

i, i am 17 years old and i got diagnosed with glandular fever back in april 2014. I was in hospital for 2 days. They say i had glandular fever quite badley.  It started with a cold, major sore throat, felt like it was raw and my glands were swollen. Little did i know i had glandular fever. I had a pain on the left hand side of my body behind my ribs for atleast 3months before. It was a stabbing pain when i took a deep breath. Also very very tired. An early night wouldnt even get me ready for the next day. I was just too tired to do anything.   They told me all my organs were swollen! My spleen and liver were extremely enlarged. The spleen was causing me the pain. I was told not to do any form of exercise, anything that will shake,poke will rupture the spleen. It took about 3 months for my spleen to settle down. And 5 months down the line i am itching to get exercising! But evently from being on a camel getting shuck about and carrying 2 kids around for 1 week straight caused the pain to come back. Im still now extremely tired. As it hit me at an awkward stage in my life i couldnt go out and look for work. I help a 93 year old 5 days a week as you can imagen it can be quite difficult. Dont get me wrong i feel good. I am just very tired and have that annoying pain when my spleen starts telling my im doing too much! Put this way 6months ago ibwas swimming 55lengths of a pool, going to the gym twice a week, i got to the stage where i was doing 190 squats and 20 kick ups. Last week i went swimming and i only managed 14 lengths and that was me. The pain in the spleen telling me to stop right there! 😩 I am taking iron tablets and abc plus vitamins to see if will give me a boost. Also trying to have a mid day rest every afternoon to keep me going for the day.   Can anybody tell me if they have also experienced enlarged bruised looking bumps on their legs? I have had bruises on my legs for about 4 months now. I have been to the doctors several times and even asked a nurse, nobody can tell my why and what it is. They took blood test for my liver, blood clotts and another thing but they came back clear. Its really frustrating.  I hope this virus will go as soon as possible! Im not the same happy go active teenager as i was 6months ago. I cant imagen what it is like for many of you who has the virus reoccurring decades later! My sympathy goes out to you all and also best of luck to you all.  Gemma😀

I have a question regarding long term carriers of glandular fever. My boyfriend and I have been dating for about a year now, he told me he had glandular fever just before dating me. Everything is fine but sometimes he gets those symptoms back and tell me I should stay away from him... 

Now my question is, will I ever get glandular fever, should I not share cups or kiss him at all? If he still has the feelings then how come I'm not ill? And what if I am ill already but don't show the symptoms? 

Please se help a confused girl out hahah thanks 

I'm fascinated by your recommendation that you exercise even when you are still feeling the glandular fever symptoms. This is the complete opposite of what I have done all these years.

I originally got GF when I was 18, knocked me out for a month, sleeping 18 hours a day. I then got busy with exercise (cycling) about a month after I got better and I triggered another bout. I then took about 4 months off exercise, went to university, started playing hockey, hectic exercise and training regime and I triggered another bout. I then kept to jogging for a few years but have triggered bouts of GF every third or fourth year ever since and I am now 50, experiencing what seems to be yet another bout.

My theory on why I get it every 3-4 years is that that is how long it takes me to forget how I got it the last time, so I suffer from incredible stupidity in other words !! Each time I get it my system is low due to illness, not a two day sore throat or cold but a 7-10 humdinger of a cold or flu. I then feel fine for a couple days but forget my internal batteries are still flat. I then exercise and voila, GF returns. Having work related stress is also a factor and it is probably no coincidence that the last three times I have had GF symptoms has been end Sept / early October, just when our company business planning cycles happen and my world becomes an endless series of deliver, deliver, deliver. The combination of low batteries, stress and exercise do it every time.

My most recent bout though was not due to illness but due to me recovering from an appendix operation. I added a week to whatever the surgeon told me about when I could do what type of exercise, thinking that that would ensure I didn't take a step backwards. But I completely missed the fact that you can have low batteries after an op in the same way as after an illness. And so here I sit yet again cursing myself !

This time round I only had the aching neck, hot feeling, pounding heart and body aches for about 5 days. The mental fog didn't appear this time round nor did that super lethargic feeling, just the feeling of an ache radiating out of my neck. The gland that usually swells up also didn't flare up much at all.

And so I read my notes back over the past three years and noticed that even though the last bout of GF kept me off my mountain bike for 5 months, the initial symptoms only lasted a month. After that it was mostly slightly swollen / achey neck and intermittent body aches. And then I started gentle walks and eventually got back on my bike and back up to 80 km hoolies on my bike through the veld (am in South Africa so we don't call it countryside here !).

So this morning I decided to start walking but then stopped myself and decided to see if anyone on the web recommended gentle exercise so soon. Then found this thread.

So what's the general feeling on exercise versus don't exercise ? There seems to be quite a divide !

Right, am now off for a 5 km walk around a local nature reserve, maybe I will find the answer in about an hour if I feel symptoms crashing back in !

 

Was wondering does anyone here have chronic swelling of the glands on back of throat below maxillary 3rd molars on soft palate and sinus inflammation and pressure. Always have a lump in throat and my ears pop all the time. After 8 years I still can't stop freaking out. I worry about the H virus a lot but been tested many many times negative. Can these tests be wrong despite symptoms? Worried s-less. Thanks.

From my experience of having GF nine years ago, I fully agree with Gina's comments, that whilst it might not technically "recur", it leaves you with a lowered immune system, so that if you overdo it in any way postitively or negatively (too much exercise, too much workstress). After GF originally, I felt so tired for about 6 months after (chronic fatigue I think) and the only thing that normal doctors (GPs) could recommend was to exercise and eat well - I was already doing that with no improvement in my fatigue. Luckily I heard a friend talking about a chiropractor who also practiced Chinese Medicine - he who told me the GF virus lurks - and Chinese Medicine (CM) has various things that can hunt this down, whereas Western medicine doesn't recognise anything that can do this. So I took two different types of CM pills, along with large doses of Vit C (as another person has recommended). He also told me to work at only 70% of what I know I am capable of, otherwise I overstress my immune system too easily (but working at that level is easier said than done - I'm a rather 'driven' person). But  I was amazed when the CM pills and VitC cured my chronic fatigue ! However, I think GF while perhaps not recurring itself, has left my immune system lower than  I think (as Gina says) - when others around me seem to have the same illness - cold, sore throad - I get it worse (eg throat is much more painful, lasts longer). I've been fine mostly for the last 9 years, but last year was very stressful for me at work, and I think once I went on holidays at the end of the year my immune system (always probably low after the GF) just crashed and I got 3 throat/chest infections one after another within 6 weeks. Hence I'm on here looking for if GF can recur. Thanks to all for sharing their experiences and potential remedies. Nice to know I'm not going bonkers, and probably just need a major overhaul of my lifestyle  again, having got sucked by work into 'overdoing it' - my body is in fact trying to tell me that my brain has some important lifestyle decisions to make !

So what is the Chinese Medicine ??

When I first got it aged 18 I was treated by someone doing homeopathy. If only I knew what those pills were, perhaps some kind of tissue salt, I've no idea as it's now 33 years later and I am back down with back to back bouts of GF because I exercised too soon after the bout that hit me in October 2014 had fully cleared up.