A Shorter Story (fingers crossed!)

[ijc]

Hi All

Thought I'd join and post on here, as reading others' stories was very encouraging for me, and hopefully the same will be true for others. At risk of sounding like a cliche, before the illness started my life was all about working to pay for my holidays, and doing sport of various kinds on my evenings and weekends. Without being a health freak, I ate relatively well, was far fitter than most, and had no interest in drugs or drinking.

In truth, my symptoms have been relatively mild and - touch wood - shorter lived than many. But even so, feeling one's energy drain day by day, the uncertainty of what's happening, relying on others for support, and sensing the world closing in on you is an awful experience. So holding onto positive thoughts whenever possible is vital, if very difficult to do. But as everyone says, this thing will bottom-out and turn around eventually.

My pattern was this:

At the end of August I picked up a minor stomach bug - presumably a viral infection given subsequent tests. After a week or two, the initial symptoms passed, and I returned to work, feeling pretty well OK, if a touch drained.

However, in the days which followed my appetite didn't recover and began to get worse. Eating became a real struggle, and when tiredness started to develop I simply ascribed it to my loss of appetite. Having spoken to the doctor, he said IBS was very common after a tummy bug and may last for a few weeks. As the days passed I got tireder and tireder - going to bed straight from work, and developing shadows under my eyes, and legs which felt like I'd just done 20 miles mountain biking after a day's work.

Eventually, I shuffled home from work, told them I wouldn't be in the next day and drove myself home, wondering how safe I was to be behind the wheel. By this stage I was getting up in the morning, and just flopping on the sofa and closing my eyes for the day. Initially the tiredness wasn't a physical, muscular sensation, but one of being frazzled. I considered whether I had stress from work or even depression, but I've never suffered such things before and knew something else was going on. A 5 minute walk to the post office to mail my sick note left me slumped in my chair as if pinned to it, and a wooziness descended. Also, rather strangely, my digestion became noisy and uncomfortably, keeping me awake at night. It was as if my guts were as tired as the rest of me.

After a few days of bed-to-sofa-to-bed, I could feel the fatigue spread to all my limbs, as if weights were being slowly added. This was the most scary moment, as I was fearful that it the progression didn't stop, I'd be left dependent and a burden on others. My family were already doing my food shopping and bringing evening meals round for me (bless them all).

My doctor had now given me a diagnosis of suspected Post-Viral Fatigue, and had referred me to the hospital to rule out any other candidate diseases. But, of course much of the difficulty is that the only way to diagnose this thing is by ruling out a whole raft of far scarier ailments. This process is still ongoing for me now - I've had countless blood and urine and stool tests, and I'm waiting for the results of many of them.

But now the good news... The consultant I saw agreed with my GP's suspected diagnosis (tests pending), and most importantly gave me some insight into the condition. While it's clear doctors do not fully understand this illness, he did tell me the typical pattern is for a U-shaped curve in the fatigue from the end of the initial infection. There will be a period of decline, but this is most commonly mirrored by a similar period of recovery, at the end of which you may not be back to where you began, but you'll essentially be OK to move on to a full recovery.

Taking this on board was key for me, because the slow decline was something I found genuinely scary. But it will end. You will improve. Apparently, the odds are heavily stacked against this becoming a chronic condition - it is far more common for its severity and duration to reflect that of this initial infection.

So as it stands now, I've been off work for a month, but the bottoming-out has occurred. This weekend I felt the weights slowly being lifted and short walks to the end of the road are possible again. My appetite and digestion have also steadied and improved. I know things could still easily go awry, but I do now hope to return to work part-time in the next fortnight, and hope to be back doing a bit of genuine exercise by December. All in all a three month stretch would seem like a very light sentence given how things were.

I'm very aware that others have far worse stories and hope mine doesn't seem trite in comparison. But from what I'm told, my experience is a common one, so I hope it helps some of you to read about it.

I cannot tell you how good for morale it is when symptoms finally stop worsening and even begin to improve a little. A short walk still leaves me wobbly, whereas I was doing 10k runs in the summer. But the knowledge and sensation of improvement means everything.

Best of luck to everyone on here who's suffering - a speedy recovery to all.

IJC

[lesden]

It was good to read how things have been with you. Mine started with a sinus infection in August and then I got a viral infection on top + 2 lots of antibioctics. I'm assuming how I'm feeling is down to post viral fatigue and I have good days and bad. As if it's one step forward and 2 steps back. I know I have to keep positive, but I've been having panic attacks and I think thats because I want to go out and do normal things and when I try and feel really rubbish I start to get anxious. I'm not a very good patient I'm afraid and don't like being ill so I get really miserable. I'm a teacher and haven't been back to school this half term yet as you need to be 110% to cope with teaching. Keep in touch

[lesden]

It was good to read how things have been with you. Mine started with a sinus infection in August and then I got a viral infection on top + 2 lots of antibioctics. I'm assuming how I'm feeling is down to post viral fatigue and I have good days and bad. As if it's one step forward and 2 steps back. I know I have to keep positive, but I've been having panic attacks and I think thats because I want to go out and do normal things and when I try and feel really rubbish I start to get anxious. I'm not a very good patient I'm afraid and don't like being ill so I get really miserable. I'm a teacher and haven't been back to school this half term yet as you need to be 110% to cope with teaching. Keep in touch

[lesden]

It was good to read how things have been with you. Mine started with a sinus infection in August and then I got a viral infection on top + 2 lots of antibioctics. I'm assuming how I'm feeling is down to post viral fatigue and I have good days and bad. As if it's one step forward and 2 steps back. I know I have to keep positive, but I've been having panic attacks and I think thats because I want to go out and do normal things and when I try and feel really rubbish I start to get anxious. I'm not a very good patient I'm afraid and don't like being ill so I get really miserable. I'm a teacher and haven't been back to school this half term yet as you need to be 110% to cope with teaching. Keep in touch

[ijc]

<b>lesden</b> wrote:
<div class=quote>It was good to read how things have been with you. Mine started with a sinus infection in August and then I got a viral infection on top + 2 lots of antibioctics. I'm assuming how I'm feeling is down to post viral fatigue and I have good days and bad. As if it's one step forward and 2 steps back. I know I have to keep positive, but I've been having panic attacks and I think thats because I want to go out and do normal things and when I try and feel really rubbish I start to get anxious. I'm not a very good patient I'm afraid and don't like being ill so I get really miserable. I'm a teacher and haven't been back to school this half term yet as you need to be 110% to cope with teaching. Keep in touch</div>

I hope I can relate somewhat to how you're feeling. While I was going downhill I had all sorts of terrible thoughts about where this thing was going. The only weapons available to fight them were/are the company and support of friends/family, and also the knowledge and information provided by the doctors. I'm really not accustomed to illness and no good at braving it out, but just being told by the experts what this thing actually is and how it usually pans out was a great help. It cuts down the worry list and helps to focus your mind elsewhere.

While it's clearly not a psychological ailment, I found the mental aspect of it most difficult to cope with - the places your mind goes to fill the void created by enforced inactivity...

As such, a friend who suffers with depression visited me, and talking to him about how he deals with his episodes was very helpful. Just doing crosswords when alone and spending as much time in company as possible was really good advice.

All I can think to say is what's often repeated on this site, but for good reason. PVF will recede. And I'd add to that what my GP and consultant told me - for most people it's not a chronic illness - just something that time will heal.

All the best.

IJC

[lesden]

Thank you for that and yes the worse thing is when you have too much time to think and end up just focusing on how you feel and that's when the panic and anxiety creeps in. I agree PVF is not a psychological illness, but I always maintain that when the body's not happy neither is the mind, as they work 'hand in hand'. Take care

<b>ijc</b> wrote:
<div class=quote><b>lesden</b> wrote:
<div class=quote>It was good to read how things have been with you. Mine started with a sinus infection in August and then I got a viral infection on top + 2 lots of antibioctics. I'm assuming how I'm feeling is down to post viral fatigue and I have good days and bad. As if it's one step forward and 2 steps back. I know I have to keep positive, but I've been having panic attacks and I think thats because I want to go out and do normal things and when I try and feel really rubbish I start to get anxious. I'm not a very good patient I'm afraid and don't like being ill so I get really miserable. I'm a teacher and haven't been back to school this half term yet as you need to be 110% to cope with teaching. Keep in touch</div>

I hope I can relate somewhat to how you're feeling. While I was going downhill I had all sorts of terrible thoughts about where this thing was going. The only weapons available to fight them were/are the company and support of friends/family, and also the knowledge and information provided by the doctors. I'm really not accustomed to illness and no good at braving it out, but just being told by the experts what this thing actually is and how it usually pans out was a great help. It cuts down the worry list and helps to focus your mind elsewhere.

While it's clearly not a psychological ailment, I found the mental aspect of it most difficult to cope with - the places your mind goes to fill the void created by enforced inactivity...

As such, a friend who suffers with depression visited me, and talking to him about how he deals with his episodes was very helpful. Just doing crosswords when alone and spending as much time in company as possible was really good advice.

All I can think to say is what's often repeated on this site, but for good reason. PVF will recede. And I'd add to that what my GP and consultant told me - for most people it's not a chronic illness - just something that time will heal.

All the best.

IJC</div>

[SmellsLikeSquirrel]

awsome post. Yes its part mental-battle. and will be the deciding factor in whether u willl be 99% recovered. or 100% recovered.
stay disciplined to your routines and take it step by step.

best of luck

-shane


--
The Rules are different for sasquatch.

[Robbo]

Hi IJC,

You're probably long gone now and back to enjoying your normal life but I thought I'd reply on the off chance. It sounds like you had a great GP and consultant but I wondered what sort of consultant you were referred to? I've been off work for 5 weeks now and my GP thinks it's viral but they seem to be taking the Cardiology route for referral as they think it might be SVT.

Have very similar symptoms to you, lack of energy, hugely rumbly tummy at nighttime (like a bubbling bog!), lightheaded and nausea. However my symptoms started suddenly in the car on the way back from Devon and we had to divert to Salisbury A&E! I was having heart palpitations, dizzy, out of breath and my chest was feeling pretty tight, it was very scary I thought I was having a heart attack.

Anyway, tests showed nothing and various similar attacks since have landed me in A&E 3 more times although the palpitations are less frequent and less severe (up to about 100bpm rather than 130bpm which they were in the beginning). Symptoms much more like a constantly higher heart rate now (used to be in the 60s but now when I check it seems to be in the 70s or 80s), headaches, lightheaded, nauseous, weird crazy stomach and real lack of energy although in the first week I was tired (slept about 13 hours a day) I don't really feel tired as such just no petrol! I walked 0.5m last Sunday and I was totally drained and the lightheaded/heart rate/nausea came shortly afterwards - this comes from someone who runs half marathons and before 5 weeks ago was very healthy and active.

3 weeks previous to my first 'attack' I went snowboarding in the Alps, I had a cold/flu whilst I was there but had paid for the holiday and so boarded through it! Perhaps not such a good idea. One theory is that because I exercised through that virus it came back to bite me on the bum 3 weeks later and affected my heart and chest. I have a 24hr heart monitor on Monday to help to rule out SVT but none of the docs I've seen so far have even suggested PVF. I have an appointment with a Homeopathic doctor tomorrow to see what he has to say. I just want a diagnosis really. I guess I have to be patient. Currently working part time from home but Tuesday I was flattened.

I was wondering whether your recovery was consistent daily? I have days when I feel much more capable and days when all I can do is crash on the sofa. This could be to do with me pushing myself too hard I guess but I don't really see potting plants, walking around a village fete or walking .5 miles down the road as pushing it!

Sigh

Any advice would be most welcome and I do hope that you are properly fixed now. This site has been most helpful in helping me to try and work out what is going on! Chin up to everyone!

Deb

[Kevin]

Hi Robbe
Your experiance sound very familiar. The heat trouble and everything. You need to keep seeing your GP have the tests done and if there is a PVFS speciallist near you get an appointment. In the mean time rest as much as you can and pace yourself.

I tried to power through and it did a lot of damage PVFS is like a polar bear if you wake it from its slumber it will maul you.

As for recovery it is a rollercoaster ride through hell. You can recover slightly and then over do it only to be put back. The symptoms will also change over time, and you will have good days and bad.

You have to get all the little things right and be prepared to change your life completely. People do recover and you will get better, but there is not magic bullet. Rest healthy life style and time are going to become your best allies.

Even so prepare yourself for what is to come and enjoy the good days as much as you can without overdoing it, because it will be the memory of the good days that will get you through the bad ones. When all else fails positive thinking a distraction and repeating the mantra I will get better

Also yoga tai chi and breathing exercises will help

Take care and remember that you will get better you will get through this
Kev

[marion]

hey kevin...what a great polo bear anology! very very true.gladly i havent awakend him for a few days now..thank god.hope u are having a good day