Post viral fatigue

Thanks Slowoldgit, and Buckwashed, that was a truly inspirational post.

Hey Bushwacked thanks so much for taking the time to write that. I’m glad you are seeing some real progress. I think I will drop you an email to chat about this a bit more if that’s cool. Thanks again.

Wow Bushwacked – I’ve been crying through most of that.

A chap who was ill with CFS. lent me Dr. John Eaton’s book ‘The Reverse Therapy’. He too seems to just want to sell you his ‘time’ at a pracice. However the bits that I gleaned were similar to yours. That worry of a certain kind takes over. His example was a woman who was being pulled every way by an elderly demanding mother and looking after a young family. After therapy this woman learnt to say ‘no’ more often and her brain recognised that she wasn’t putting all her energy and thoughts into a negative place.

I too took advice from a nutricionist. Which really helped when I laid off the sugar. This also helped my immune system, as I jsut seem to catch any germs flying about and then get ill for weeks after, just from something as simple as a cold.

It wounds wonderful that you’ve turned a corner.

Grum, are you into photography by any chance?

That was three and a half weeks ago and now I can say that I’m 90-95%, Ive had a few dips but nothing major. I’ve even managed some really challenging schedules at work and home with no major side effects. It has been a tough ride so far and I’m not out of the woods so far (although riding in the woods is where I like to be these days). Its going to take a good few more months to completely retrain my mind to think the right way again but its becoming more automatic.

Pace yourself B! Seriously…

You might feel like you’re 90-95% better sometimes, but you’re probably not as well as you think you are just yet. By all means push yourself, but not too fast, I made that mistake in the past…

Anyway, gonna be down FOD again this Sunday, with a load of guys on a slow ride, if you fancy tagging along seeing as you enjoyed our Friday afternoon jaunt so much the other week! 😀

Nah, I’m not pushing myself, just doing what I’m able too 😉

Can’t make sunday, downhlling on lecky in preparaton for an uplft day n a few weeks 😉

Bunnyhop – cheers, happy to share 🙂

flow – Member
Grum, are you into photography by any chance?

Yeah very much so. The only real positive thing to come out of theillness actually, is I realised I was going to have to occupy my time with something non strenuous, and I’d always been interested in getting into photography bit never pursued it.

Grum, do you go on Talk Photography under the same username?

Yup.

You have some awesome images on there mate, just recently got into it myself. Seem to be doing more and more now I can’t ride. I sent a friend request.

Thanks 😀

Yeah it was a real life-saver for me TBH. Accepted your friend request btw.

Thanks Grum, you have a 5D I see, good choice, my brother has one and its very good.

Well I went to my old doctor the other day, she thought I was stupid for even thinking I had Lyme.

This afternoon I went to my new doc, explained my symptoms, he said its possibly Lyme without me even mentioning it.

Hopefully I will get somewhere!

Grum, how is the Tamron 28-75 on the 5D? I read that it is really soft in the corners on full frame, is that true?

I’ve not noticed it TBH, although I often use it at f2.8 so the corners are often blurry anyway. I don’t pixel peep too much but I’ve found it to be very sharp indeed actually. The only slight disappointment is the AF – it can be a bit slow and inaccurate. It’s a real bargain though IMO.

Lyme test came back negative, back to square one 🙁

Sorry to hear that Flow. Keep your chin up though.

Flow – it maybe time to get some dietary advice and cut out alcohol and sugar hth.

No Sugar FTW!

Hi peeps, thanks for the comments.

I spent an hour and a half at my new doctors today, he said I could still have Lyme even though the test was negative, and will possibly need to go to the hospital for some more tests. Something about fluid from spine? Anyway, he said whatever it is he will get to the bottom of it which is very relieving to hear because my last doctor left me feeling helpless.

I haven’t had any alcohol for god knows how long now, I might try and clean up my diet a bit more though.

I have started taking this multi vitamin http://tinyurl.com/63yv8d9 and have also been taking quite a high dosage of vitamin c every day.

i did a western blot test for my diagnosis as well as the opinion of a lyme specialist.
if you need any details flow my email is in my profile.

Thanks Nonk, just mailed you mate.

Vm75 are good. I take them

Who was the person on here who went to the Breakspear Clinic?
Searching doesn’t work

Well, it sounds as if I might have to have a lumber puncture which sucks. I’m not sure if this is to find if I have Lyme or something else, either way I’m not looking forward to it at all 😥

flow i have just seen your post mate i will get on it now.

Thanks Nonk, appreciated mate.

What else have they tested you for?

That might sound a silly question, but plenty of doc’s don’t bother testing for many things. My doc tested me for EVERYTHING (including HIV) as a precautionary measure… Needless to say everything came back negative, meaning CFS was the likely outcome.

By the way, this time round I made sure I didn’t stop riding my bike, and I think that helped a lot with my recovery speed. Didn’t push myself, but made sure I rode at least once a week even if only for an hour or so. Even at the expense of feeling tired the next day, but it really helped make me feel better. Exercise releases endorphins after all…

ygm.

Thanks Nonk I replied.

Mboy – current tests are, 2 ECG’s, 2 FBC’s, thyroid and liver function, chest xray, and a test for Lyme. I think I’m missing a few there too.

I would love to ride my bike but I can’t 😥 it leaves me aching all over, the last time I did it took 2 weeks to recover and I was only riding for an hour.

Good luck Flow! Been where you are and wish you all the best

Thanks mate, doctor phoned today and has decided its probably not Lyme due to the negative test.

I just re-read your post, the symptoms you describe are pretty much exactly what I have.

I contacted college today and asked them if they could send me the work so I don’t miss out and get behind. I’m basically going to just chill out as much as possible, try not to stress about it (which I am getting good at) and take it as it comes.

I don’t know where I would be now without the help of the anti depressants, I wish I had started taking them sooner! The sedative effects are starting to wear off now so I might have to change to something else as I’m not sleeping well again.

I’ve had some similar symptoms described here. I seemed to get flu-like symptoms by just doing light weights. Essentially I’d be ok during the exercise, then I’d be knocked for six a couple of hours after. This was something that I could reproduce, and it wasn’t just muscle aches. It felt like proper flu but would only last a day.

Have you experimented with diet? It’s the one thing you can take control of and do something about.

Both myself and my brother have had some of the symptoms above that have been helped my changing diet.

We’ve both gone towards slow-carb foods (avoid white-carbs/sugar basically). Anyway, don’t like to harp on about diet, but you’ve got nothing to lose, and it’s something you can control without having to go back and forth to doctors.

Nickname, I am definitely going to clean up my diet, not that its bad or anything.

Buckwashed, I just watched Guptas intro vids and it all makes soooo much sense! Thanks for sharing that with me, I think I’m going to be purchasing it.

Bushwacked, do you have an email address I can contact you on by any chance. I AM going to get better and ride my bike again, but I might need some help 😉

My guess is stress/anxiety. How much of your day do you spend analysing/worrying about whats wrong with you? Mayby the only thing wrong with you is that you keep worrying/analysing what is wrong due to the symptoms you experience, but the symptoms are the effect of your previous worrying? And you are trapped in a loop?

😆 My guess is that your guess isn’t a guess at all and you have just read/watched things about the Gupta Program.

Thanks for the input though.

😀 Nah never read it, just seemed like stress to me.

My guess is stress/anxiety. How much of your day do you spend analysing/worrying about whats wrong with you? Mayby the only thing wrong with you is that you keep worrying/analysing what is wrong due to the symptoms you experience, but the symptoms are the effect of your previous worrying? And you are trapped in a loop?

Oh you’re a doctor able to diagnose over the internet? How clever.

A few random thoughts from a doctor who has been a patient too…

– No other group of patients researches their illness and spends as much time discussing it to quite the same extent as people with CFS/ME/PVF, Lyme disease (where there’s no tick bite seen), total body candida (typically pronouncing it can-deee-da), etc to the point where such activity is almost pathgnomic. I don’t say this as criticism, I seriously wonder if the level of analysis actually drives the condition. You might say that’s because drs are useless and it’s your only option but doctors miss lots of other things in lots of other patients and none seem to do their own research to quite the same level.

– Lots of nutters latch on to these illnesses too I suspect and you all end up tarred with the same brush.

– I’d be surprised if these conditions have a single cause (maybe a single trigger, e.g. EBV infection is present in some cases), I suspect they’re complex, caused by multiple interacting factors and that’s what makes them so resistant to treatment. If you know anything about complex systems you’ll hopefully see what I’m getting at. There are lots of vicious circles going on in these complex systems, physiological, psychological, social – one thing feeds the other which feeds it back, as a single simple e.g. – fatigue -> no exercise -> poor sleep -> fatigue.

– Most doctors find dealing with the patients who have this condition very difficult and with good reason – no known cause, a 10 minute appointment and a patient quite clearly suffering but often with some very odd ideas is not a good combination especially when they absolutely refuse to do any of the things you suggest (the “yes, but” game). Doctors hate feeling like they can’t help someone and some deal with that better than others, some are just plain rude (no excuse for that).

– Over investigation can make you worse, especially if the results are equivocal and/or merit further investigation.

– There’s only one way to deal with complex illness of unknown cause IMO and that’s monitoring and feedback, i.e. formalised trial and error. Use sites like patientslikeme.com to find your starting points.

Most doctors find dealing with the patients who have this condition very difficult and with good reason – no known cause, a 10 minute appointment and a patient quite clearly suffering but often with some very odd ideas is not a good combination especially when they absolutely refuse to do any of the things you suggest (the “yes, but” game). Doctors hate feeling like they can’t help someone and some deal with that better than others, some are just plain rude (no excuse for that).

A good doctor is the key to getting better… First time I had it, no disrespect to the doctor I had as he was a nice guy, but he seemed more concerned with covering his ass and just signing me off work than he did taking any positive steps to helping me get better. Second time around, I had a different doctor that was much more determined to help me take some positive steps, and he helped me try various different things, and though not all worked he helped me find a way of getting better that worked for me much more quickly than I would have done otherwise. I certainly owe him a beer or two if I ever see him in the pub, that’s for sure!

Doctors can often be too quick to go down the route of blaming your illness purely on depression too by the way. I went to see a “CFS specialist” who was overworked and stressed herself, and as a result when she asked me if I had any depression (as about 99.9% of CFS sufferers do in one form or another), she then refused to treat me until I’d taken a course of anti-depressants to “deal with my depression”… Thanks! She certainly WILL NOT be getting a Christmas Card from me this year… BITCH! 🙄

My guess is stress/anxiety. How much of your day do you spend analysing/worrying about whats wrong with you? Mayby the only thing wrong with you is that you keep worrying/analysing what is wrong due to the symptoms you experience, but the symptoms are the effect of your previous worrying? And you are trapped in a loop?

LOL, same old answer that everybody gives that’s never properly had to deal with somebody close to them with CFS/PVF/ME in their life. It’s a very complex illness, and is often different in its manifestation from one person to the next. I’ve known bushwacked above personally for a few years now, and we have both suffered from it at the same time (his first bout, my second), and it affected us both in quite different ways.

I don’t know where I would be now without the help of the anti depressants, I wish I had started taking them sooner! The sedative effects are starting to wear off now so I might have to change to something else as I’m not sleeping well again.

Personally, I’m of the opinion that anti depressants don’t help at all, and if anything can actually prolong the healing process. Of course, if you’re that depressed you’ve considered killing yourself, then anti depressants are necessary, at least to get you back on a relatively even keel, but I’d stress that beginning to think positively for yourself and manage your depression proactively in your own way, however hard it may be, is definitely going to help you recover more quickly and effectively. I’m talking from personal experience here by the way!

I AM going to get better and ride my bike again, but I might need some help

This will help you LOTS… I went down FOD with bushwacked the other Friday, his first proper offroad ride in about 12 months. We didn’t go that far, but he was straight back into it and loving it… Made me smile too, riding bikes is great and should not be underestimated how good it makes you feel!