[Closed] Post viral fatigue

In my case, my argument has been that the result of a blood test is treated as gospel and how I actually feel doesn't come into it! Notwithstanding guidelines from the Royal College of Physicians needing looking at, compared to other countries.

I think regarding thyroid problems it would take a very brave (?foolhardy) GP / endocrinologist to deviate too far from those guidelines. They're very prescriptive and have been written for a particular purpose. The GMC show plenty of interest in doctors who don't toe the party line on thyroid conditions and that means that for most doctors the risk isn't one we'd be happy to take. I try to be open-minded but on this it is very difficult to practise with an open-mind without attracting unwanted attention.

Out of curiosity jb79, seeing as these days GPs have far too many patients, how do GPs actually find time to read up on new medical developments, research etc.?

In short - with great difficulty (and I suspect in a few cases, not at all). There are very good courses (GP Update / Hot Topics) that cover a vast amount of new research in a day and give a thick summary book for future reference. Part of being a professional is knowing when you're out of your depth - most of my learning is based around when I've not done or known something as well I should, I go and read it up and practice it (case-based learning). Patients teach me a lot too. In fact, most medical degrees are now based on the principle that to know it all and stay up to date is impossible, but to know how to find the information you need and deal with the immediate need when you don't know is possible. I think most sensible and reasonable people accept that some things we don't know and some things aren't known, but there are some who get really angry about it (a personal bugbear) and some doctors who try to hide or are blissfully unaware of their ignorance (another bugbear).

There was a research paper a few years ago that reckoned a super-specialist (e.g. a proctologist specialising in anal cancers!) would need 26 hours per day of reading to stay up to date in his field.

I haven't read this thread through from the start, just dipped in and out occasionally, but a quick comment on this:

slowoldgit - Member
It's not the Docs' fault that after my ME diagnosis I saw a succession of locums and temps, met with a variety of responses*,

*The oddest of which was that Beconase spray had the answer. I presumed that was medicspeak for bog off and stop bothering us.

Long story short - I've been coming down with the same pattern of flu-type illness with complete fatigue every few months for about 6 or 7 years. The GP would normally say it's a virus but on occasions would diagnose PVFS.

Eventually in December after about 4 weeks off work feeling pretty rotten a locum went through my symptoms thoroughly, prescribed antibiotics to clear up an ongoing chest infection (described as viral by my normal GP, cleared a few days later) and Beconase to sort out the sinus problem which he suspected was causing the rest of my symptoms.

Sure enough after a couple of months using the nose spray, I've got loads of energy, don't feel grotty, have trained hard enough to lose 3/4 of a stone. I went back to the GP a few weeks later for a quick chat and he seems to agree that it may indeed be rhinitis or chronic sinusitis which was giving PVFS type symptoms.

Annoying that it was something so apparently simple that has dragged on for so long. Hopefully I have found the cause and can control it from now on.

The GMC show plenty of interest in doctors who don't toe the party line on thyroid conditions and that means that for most doctors the risk isn't one we'd be happy to take

IMO GPs get completely worn down by the constant flow of work-shy p-takers, and eventually see us all like that. Every interaction I've had with GPs over the age of about 35 has been unsatisfactory. It's entirely understandable, but very difficult to know how to fix the system as currently constructed.

IMO GPs get completely worn down by the constant flow of work-shy p-takers, and eventually see us all like that. Every interaction I've had with GPs over the age of about 35 has been unsatisfactory. It's entirely understandable, but very difficult to know how to fix the system as currently constructed.

Interesting you say that, I find a similar problem with police!

I'm a 32 year old GP trying hard not to tar everyone with the same brush, perhaps when I reach 35 I'll give in! One option I'm seriously considering (and many of others of my generation are too) is emigrating because it's things almost unique to the uk like the social rubbish (e.g. sick notes), bureaucracy, constant changes and lack of independence that really grind you down. Helping decent (ill!) people get better and live their lives and doing the difficult medical stuff (especially diagnosis) are the enjoyable bits of the job for me but the system isn't set up for this really.

@ IdleJon - it's nice to read that someone's taken note of my small contribution, and explained something that disturbed me. It was a bit short for simplicity. I now think the locum latched onto a seasonal comment to the exclusion of all the other stuff. As I said, I came away feeling I was wasting his time. I was already taking beconase for much of the year anyway for hay fever, which now starts in late Jan with the Hazel pollen. So for me Beconase definitely doesn't fix all the other problems.

I subsequently saw a Lyme Disease doc (who's since been given grief by the GMC) with long-term antibiotics providing the answer...

http://singletrackmag.com/wp-content/uploads/2009/06/lyme-disease-everything-you-wanted-to-know-and-stuff-you-wish-you-didnt/

--- which does need bringing up to date.

The GMC show plenty of interest in doctors who don't toe the party line on thyroid conditions and that means that for most doctors the risk isn't one we'd be happy to take

Yep, they're currently gunning again for an 'alternative' doctor despite him having been cleared several months ago and receiving a huge amount of support from his patients. Why would the GMC be doing this? Are they not confident of their recommendations? Perhaps this person is right and they are wrong?

Edit: this person does actually involve the patient's GP and keeps them informed of plan of action.

Thank you for your other info though, we all just take it for granted that a never-ending supply of information/research findings etc. is somehow instantly taken on board and retained for future reference.

I'm saddened to read you're considering your options and presumably you feel that the proposed reforms won't improve things?

Bushwacked - Member

Perhaps a random question but do you worry you'll never get better and that every ache and pain may be it getting worse or still being there?

By the way, you're not mad, just out of the realms of general practice.
Posted 8 hours ago # Report-Post

Well I am prepared to give it time to see if I get better. It is not really getting worse so got to hope for the best. I think to 'need' a quick fix only stresses one more and some acceptance is necessary.

jb79 - Member

Doesn't sound much like fibromyalgia - sounds autoimmune to me (as rydster himself says). The epididymitis could be related, being caused by the same underlying process. In this case (the correct) blood tests are likely to be very helpful though may be falsely negative, especially if not currently 'flared up'.

You folks really seem to be meeting some crummy doctors... depressing.

When I first got the rotator cuff tendonitis the Doc game me some blood test for something like this but they were 'ok' (whatever that means exactly). I did tell my urologist I had some undiagnosed inflammatory-tendonitis thing going on recently, so when I see him again I may raise it again.

I don't really have a GP I really trust to be honest, especially after that guy told me to just do some swimming. One issue I have with the NHS GP is that I feel like a charity case going in, it is very dis-empowering. My urologist is private and I find it easier to talk as one educated person to the other with him, with the NHS I am just another plebeian in the queue so to speak rendered a kind of passive passenger through the system. I know GP's see a lot of 'undeserving ill' and hypochondriacs etc I can see how they develop a hard skin.

I went riding for 2 hours today, it was pretty hard because I've not been on the bike since last time I said (for an hour) but seem to be alright tonight. I suppose I will know for sure tomorrow, not that I have been thinking about it, I don't really care anymore to be honest, whatever happens happens.

That doesn't sound great flow - hope things do pick up.

When I first got the rotator cuff tendonitis the Doc game me some blood test for something like this but they were 'ok' (whatever that means exactly). I did tell my urologist I had some undiagnosed inflammatory-tendonitis thing going on recently, so when I see him again I may raise it again.

May well just have done ESR and CRP though - you could do with having various autoantibodies checked as they're much more specific and reliable. Even if all bloods normal I'd have referred you to a rheumatologist. The relevance of a diagnosis is that some of these conditions are progressive and treatment with disease modifying drugs is important.

I don't really have a GP I really trust to be honest, especially after that guy told me to just do some swimming. One issue I have with the NHS GP is that I feel like a charity case going in, it is very dis-empowering. My urologist is private and I find it easier to talk as one educated person to the other with him, with the NHS I am just another plebeian in the queue so to speak rendered a kind of passive passenger through the system. I know GP's see a lot of 'undeserving ill' and hypochondriacs etc I can see how they develop a hard skin.

Sorry that's how you feel - you really shouldn't though. The NHS might be free at the point of (ab!)use but we do pay for it.

Yep, they're currently gunning again for an 'alternative' doctor despite him having been cleared several months ago and receiving a huge amount of support from his patients. Why would the GMC be doing this? Are they not confident of their recommendations? Perhaps this person is right and they are wrong?

See their role as 'upholding the reputation of the profession' and it makes a little more sense. It's a fine line between pioneer and nutcase... I think it's fair to say that the profession continues to lose confidence in the GMC.

I'm saddened to read you're considering your options and presumably you feel that the proposed reforms won't improve things?

Even if you take the proposed reforms at face value, why would you put a group of generalist clinicians in charge of commissioning (a highly specialist non-clinical skill) and take them away from clinical work? Doesn't make sense.

The NHS reforms are a poisoned chalice for GPs that a very small minority (of the usual suspects) will do very well from but that will ruin the NHS and lay the blame for that at GPs' door - perfect headline material for the Mail etc! Care for people like those on this thread, who don't fit nicely into a (profitable) category will undoubtedly get worse (imagine that!!) and may start to be subject to top up payments not immediately but eventually.

It doesn't sound good does it! I didn't mean for it to sound that way, it was supposed to be positive!

[quote=jb79]Sorry that's how you feel - you really shouldn't though. The NHS might be free at the point of (ab!)use but we do pay for it.

Sure it us paid for by us but collectively though taxation/borrowing the state raise. The same state then allocates that money and calls the shots; he who pays the piper 'n all.

So for an individual going to the GP, they are not the hand that feeds (as with a private system) but the mouth that receives, that is to say the whole NHS is a kind of state funded welfare-charity, with the patient necessarily dis-empowered because they are alienated by the state from the decision making/power process that money in ones own pocket gives one.

Charity degrades (can't remember who said that).

See their role as 'upholding the reputation of the profession' and it makes a little more sense. It's a fine line between pioneer and nutcase... I think it's fair to say that the profession continues to lose confidence in the GMC.

Hmmm, so do GPs actually have any dialogue with the GMC? Or is it the other way round, ie dictate?

Are there any statistics being bandied about to say how much less of a GP's time will be spent with patients? It really doesn't make sense and just fuels speculation that there is a commercial undercurrent.

Thank you for posting on here, you're very brave cos some of us do moan. There are a few GPs on here - stoatsbrother has been very quiet these days and his input was good.

@ flow - you didn't say whether you enjoyed your bike ride?? OK it may not be how you would want to ride but those endorphins must have been released? How do you feel now, any aches or pains?

😯

Would it be reasonable to asked a GP to refer to me to a Rheumatologist for this inflammation problem I have been having the last couple or so years?

Yes rydster!

Thanks jb79. If they say no I'll tell them a Doctor on teh internets said it was ok. 😉

I went riding for 2 hours today

MASSIVE belated thumbs up Flow! 😀

Keep at it... You'll be ok again soon.

Having something positive to focus on can really make a whole load of difference. For me right now, my only negative is a severe lack of money, but that is offset by the fact my health has returned somewhat (I'm not 100%, but I'd say I'm 85-90% of what I was) and I'm back at uni doing a course I absolutely love, which gives me a real focus...

Rydster:

😀

Always sounds good! Good luck.

mboy - that is indeed good news.

I may have been a little premature with thinking my symptoms are over. I always forget that my immune system is still low and of course I catch whatever fashionable bug/flu/virus type thing is flying around. So just got to start up eating a proper healthy diet again and hope that the skiing holiday that we've had to cancel, (one of many holidays cancelled during the 5 years I've had pvf)will be booked again before the season ends.

Keep your peckers up peeps.

Bunnyhop x

Oh poor Bunnyhop. 🙁 I am sorry to hear that you're not good and cancelling a holiday must have been so upsetting. Take it easy and sending good wishes your way. 🙂

Thanks c_g. It's hubby that I really feel for, as he really missed out this time. I'm staying positive though. Hope your recovery is still ongoing.
This nicer weather has certainly helped to perk up my mood 🙂

CG - I felt fine after riding thanks, my shoulders ached a bit but in a good way. I started weight training on Thursday, 3 days a week. Today my bum cheeks ache so badly I can hardly sit down 😆

I bought a book on insomnia yesterday called The Effortless Sleep Method, it seems really good (good reviews too) last night I had the best sleep I have had for a long time. Could be a coincidence though as the night before I didn't get any sleep at all.

Thanks Mboy, glad to hear you are doing well 😉

I received this from one of the guys who was at the treatment with me, I'm sure he wont mind sharingto help others:

I have seen a massive turnaround since visiting the clinic and have started going to the gym for an hour a day 3-5 times a week and am now able to watch tv and read again. I don't know if you have tried it or not yet but the nutrition side seems to have really helped me as it keeps my energy slow releasing and constant although the diet is horrendous I feel good every day I wake up apart from sometimes I feel like I have a bit of a cold. But instead of worrying about doing things I have just started doing them as I said I go to the gym I have been away to a health spa with my girlfriend and I go out for dinner about 3 times a week at the moment. I am also taking regular trips into London to meet friends for lunch and the next day I am tired and have to take it a bit easier but I find it is worth it and I am getting stronger all the time as I am keeping myself as busy as possible and it really takes my mind off of the illness.

Sometimes I get a bit carried away and think I am better and then push a bit too hard but whenever I started feeling a bit unwell I try and laugh it off because otherwise I know il start snowballing into worry mode, I was shopping last week looking at watches and felt like I was about to faint but instead of panicking I laughed told my girlfriend and she sat me down inside Burger King (something that really annoyed me as I can’t eat anything like that now) and I did 15mins meditation and then after that was fine. Also on that point I do 30-60mins of meditation every day and I really helps to calm me down and relax me.

So I went to the Doctor today and explained the long term tendonitis and she agreed I might have an reactive arthritis issue especially given my current chronic epididymitis.

I was pleasantly surprised with this GP.

So I have a load of blood samples to be analysed and that might take a couple of weeks.

If I do or did have the issue it would explain my long term bad back - which made me quit cycling - as an inflamed SI joint. It is funny when I had a lumbar MRI done in 2008, a 'proper' sports doc told me it was impossible the issue could be from the SI joint. :/ I was sure it was at the time but I thought I wrenched it rather than it being some auto-immune issue or something?

flow and Bushwacked - any chance of an update please? Has the recent sunshine inspired you to ride your bikes a little more often?

Very much a learning curve here - body temperature is more or less what it should be, sometimes having hot flushes which makes a change from shivering! Supplements are being adjusted and tweaked.

Still very self-conscious of my speech - words are still being forgotton leading to much flustering and embarrassment. 😳

Lovin' the bike riding though - bloomin' hard work but the tears have been banished. I'm smiling again. 8)

Hi

Everything is good here. Been out nearly everyday for a ride, mainly 30 or so minutes of road riding (avHR 140bpm) but have had a couple of MTB rides up to an hour or so which have been exzcellent.

Bit hungover today after getting leathered at the conference I went to last night otherwise all is good.

Smiling is good soul food.

Good news Bushwacked. Not riding the bmx then? 🙂

Very much a learning curve here - body temperature is more or less what it should be, sometimes having hot flushes which makes a change from shivering! Supplements are being adjusted and tweaked.

Still very self-conscious of my speech - words are still being forgotton leading to much flustering and embarrassment.

Lovin' the bike riding though - bloomin' hard work but the tears have been banished. I'm smiling again.

Nah, building up my fitness first as I've lost it all. Hoping to be on the small wheels in the very near future, but I'm not rushing things as I want to make sure I do it right.

So how is everyone doing?

Personally I've been blown away by how quickly I'm recovering (although 8 weeks isnt really fast but is when you think 9 months ago I thought I'd never ride again)

Bushwacked - that is good news 🙂

We've just come back from a skiing holiday, where yet again I picked up a cold, (probably on the outbound flight) which put paid to much of my chance of skiing full on. It was nice though to be out in the fresh mountain air with friends.

As you know if one of 'us' gets just a cold, it brings on the fatigue, feeling sick, loss of appetite and lack of sleep syndrome.

Glad I'm home though and get start getting eating habits back on track and tacking it easy again, then hopefully being back on the mtb asap.

How is everyone else?

I'm pretty much 100% now, like Bushwacked I can't believe how quickly I've got better.

I've been doing weights three times a week for over a month now, as well as running twice a week and riding at the weekends.

The last symptom to go was the lack of sleep. I bought a book called The Effortless Sleep Method and stuck to the rules set out in it, within a week I was sleeping normally again, that was over a month ago now.

I also used something else a little more controversial after much research which helped me dramatically.

Bushwacked - fantastic! Really good to hear. 🙂

Bunnyhop - that sounds miserable and do hope you can shake it off very soon. Really bad timing with you being on hols but the mountain air would have helped. Am sure that getting back into the usual routine will make a difference so just take good care of yourself. 🙂

flow - that's a huge amount of energy being used there so well done. 8) Can I ask about your book, how does it actually work? Or is it in conjunction with, er, something else? 😉

All OK here, apart from having op this week with metal work being inserted into shoulder so no biking for a while. 🙁 Have stopped eating fruit completely and that has made a big difference to energy levels.

Came across this:

http://www.scotsman.com/scotland-on-sunday/scotland/vegetarian-diet-blamed-for-thyroid-issues-1-2209159

c_g, is the op to put things right after your crash? I really have all fingers and toes crossed for you. I just know that the rest of this year will be better for you.

Somehow we must get together for an mtb pootle. I just think we could natter away and enjoy being out on our bikes without too much hassel and stress.

Good luck

bunnyhop x

Bunnyhop - yes it is and the hypothyroidism is a work in progress! Thanks for your good wishes. 🙂

Having gone through the trauma of thinking life would be easier if I gave up bikes, I just enjoy being out in the countryside regardless of the pace. A pootle sounds good. 8)

Bit late spotting this thread.

CG - glad to hear you are on the mend following your crash/op. But sorry your thyroid issue is unresolved.

Bushwacked - Great to hear that your OHC experience was a positive one. I have been treated by them for CFS/ME for the last two years and cannot recommend them highly enough.

Thought it was about time this was resurrected so who's glowing with good health and who isn't? 🙂

Holy thread resurrection batman!
How apt! I have a virus 2 weeks back and still feeling poop. I didnt get to sleep till 4.30 last night so I feel uber crappy now, its the beginning of the end I tells ya.....I'm doomed!

Get well soon mrchrispy! And, yes, you're definitely doomed. 😉

Caught slap cheek syndrome off my kids back in April (prior to this hip issues have been present for the last three years, dramatically reducing time on the bike and exercise in general) It felt like someone had unplugged me, no energy whatsoever. This lasted for three months. Doctor diagnosed PVF and told me to got sit on a beach for 6 weeks. Yeah, fat chance! I've got a business to run.Right in the lowpoint of the fatigue I found it hard to cope with the pressure of running a business and the need to recover ASAP. This pressure wasn't helping one bit. Something had to give, the wheels well n truly came of the cart. Never in my life had I felt so vulnerable. When sick in the past I've always chosen to MTFU. But this time MTFU was not going to work.

I went to cognitive behaviour therapy and took up meditation. Both allowed me to accept being unwell and immediately released a great deal of the pressure. Accepting PVF was a massive turning point. I'd learnt to 'bend like the willow' instead of standing firm like a stubborn old oak.

Now I'm definitely on the mend, taking one day a time to rebuild physically. All of which is bolstered by the continuing focus on developing mindfulness.

Looking back PVF was one of the most positive experiences in my life.

Well, that's a most profound statement you ended your post with! Certainly sounds as though you've been through the mill but you're sounding most positive about your recovery.

This 'mindfulness' - have seen it mentioned a few times in different places so shall have a little dig around.

Good luck and hope you continue making good progress. 🙂

Looking back PVF was one of the most positive experiences in my life.

Illness has a strange habit of doing that sometimes.

Hey everyone, been having some problems recently and think it might be PVF having read up on it (this thread is great btw!). What's the general consensus on my situation below:

Keen roadie (don't hold it against me though, I used to mtb loads when I was ahem...heavier :D), training ready for new race season, great winter (well over 15hrs per week base training every week without illness). About 6 weeks ago started feeling a bit 'odd', just a bit spaced out, dizzy and tired, plus my legs were just in pieces. Every time I'd try to ride hard, even for a few mins, fatigue would set in straight away into my legs. Resting HR was around 63-65 (usually 53-55).

Went to docs, said its probably a low level virus, and to rest. So I rested for about 10 days, thought I felt a bit better (although hard to tell, as exercise is what brings on the main symptoms), but thought I'd try riding. Stupidly rode hard for 5 mins without warming up on way home from work, and managed to get a chest infection. Took antibiotics, and rested for another 10 days and infection went away.

RHR went back down too during that time too, thought I was fine, but then tried to cycle again, and same thing happens with my legs, it also increases my RHR for a couple of days after attempting to cycle. It leaves me completely exhausted, totally drained. I'm sat here at work after an easy 10 mile cycle in, and can barely focus on work at home I'm so tired. My legs are aching with twitching muscles! I can pedal at a certain level without the leg fatigue, it's just as soon as I 'push'at all that causes the leg fatigue/tiredness. I'm sleeping fine at night, but don't feel refreshed in the morning either.

Pretty gutted after having to pull out of 5 races so far, such a waste of a good winter! Also have put on 4KG in the last 6 weeks which is annoying 😕 Was thinking it could be PVF? Sound similar to what you guys had?

Although I guess it could be overtraining too, although I only slowly increased my efforts, and duration actually dropped after winter so I don't think it would be that.

Any advice would be greatly received! The whole thing is started to get to me now, and it sounds stupid in the grand scheme of things, but it's quite upsetting after being so active 😳

Hmmm, that doesn't sound good. 🙁 Have any blood tests been done?

I can't remember if I posted on this thread, but re the biking:

When I worked in Bristol for 10 weeks or so I decidd to cycle there and back from Cardiff, to get some good base miles in. First week I took it a bit hard, and got tired, but managed to ride in 2-4 times a week mostly. It was about the time bird flu was going around - it had been spotted in my office. Apparently though many people would just get mild or no symptoms.

I suspect I might've caught it and been asymptomatic, because I got profoundly tired and I couldn't ride properly at all. I had periods of several weeks rest, and I felt ok, but I'd completely crash after about 20 mins of exertion. This lasted for almost 18 months, and I only got better when I did no exercise at all for like four months.

Based on that, if I were you I'd sacrifice a season for the sake of your health and future seasons.

Thanks for the input guys 🙂 , got a docs appointment on 10th May (have to wait to see the 'nice' GP who won't just dismiss me outright!).

Molgrips: sounds very similar to what's happening to me 🙁 Did manage 60miles on Saturday, but that was after 4 days rest, and I was last up the hills! Guess I've got two problems if I do bin the next few months: The bus is £7 return to work every day, don't think I can afford that, so would need to cycle probably still 😕 , and I started racing for a shop race team this year who kinda expect you to do races to advertise the shop. Bit worried they won't be very happy if I turn round and tell them I can't do anything.

It's a really strange feeling at the moment, I'm pretty upset that I can't cycle properly, but also finding that cycling isn't the be all and end all, and have had time to do loads of different things, and spend more time with my wife doing stuff. Probably just need to maybe adjust my diet somewhat to account for not burning off an extra 1000 calories every day!

Bit worried they won't be very happy if I turn round and tell them I can't do anything.

It's got nothing to do with what you tell them. Not telling them won't make the problem go away! What's your alternative? Turn in sub standard results and possibly do yourself even more damage? If you don't fix this you could be struggling for years.

I started racing for a shop race team this year who kinda expect you to do races to advertise the shop.

I wouldn't expect my riders to race for me if they were ill!

How far is your commute? If you take it really easy it wouldn't be a problem I'd imagine (not a doctor though).

I don't think it will be a problem for them, I think I've just built it up in my head that it would be! I'm hardly a decent rider for them anyway! Commute is 10 miles each way and is flat, so probably ok if i just pootle along at 15mph or something.

I had PVF a couple of years back and posted on the thread at the time - so this is just a wee update really.
Docs weren't great after initial blood tests, and just said 'rest'.
Looking back I had PVF and an element of stress - very busy at work and training for an Ironman through the period I had the virus and PVF. It wiped me out for 8 months in 2011. In addition to that I have two young kids and generally burn the candle at both ends.
I was feeling fine from the start of last year, but just thought I'd have a chilled year with no massive targets fitness-wise. Did a couple of 80m+ sportives and the 3 peaks cyclo cross race, and was happy with that.
I think the thing I learnt most was to listen to my body and be more mindfull of how I was feeling - mental and physical.
So when I undertook a 7 month academic course in addition to my normal busy work (Oct 2012-April 2013) I backed off fitness plans, as I didn't want to overload with stress. Now that's out the way I'm mad keen to get back into some fitness.
Generally I try and get more sleep, and I'm mindful that things like coffee and too much bread can make me feel a bit yuck. The virus had an impact on my liver function and I was given some supplements to help me with that.
Anyway, all good at the moment, and hope you all are too.