post viral experiences

David - yes, I also have poor circulation. Sometimes the tips of my fingers feel icecold, sometimes in one hand only. Or my toes.

CFS is also a neurological disease, especially affecting the sympathetic nervous system. Studies have shown that people with CFS have been more active throughout their lives than the average person; the explanation is they unconsciously feel the need to activate the mechanisms that control circulation and other bodily functions. For the same reason, many people with CFS suffer from restless legs.

Thanks Avocado. How long have you had CFS ? Do you also have the feeling in your chest, that your heart is not the same as it once was ? That it is being suffocated in some way ? Interesting I did suffer from restless legs for many years but just put it down to magnesium deficiency, due to all the workouts/sweating.

But the heart thing for me is really problematic, and I think because of this I have very low energy levels.

I feel once I have other tests ran that conclusively rule out lupus, lymphoma, parasites etc. then and only then will I be able to tackle this head on. It is impossible for me to accept the body cannot recover fully from this given the appropriate treatments. This is a real challenge for me being naturopathically trained. Often naturopaths will talk about dis-ease without having any real personal experience of it, that's quite a big missing component. I do agree with the concept that the human body has the innate ability to repair and regenerate. I think in CFS/PVF it's like the perfect condition to test this out on. So seeing good in bad.

Also does anyone else feel noticeably better from 11pm onward, then from about 3.30 CRASH ? 5 months into this I am noticing this more. It's basically tied into the circadian rhythm, orbit of the sun. So it's good to know we are not disconnected completely.

I've had CFS for about 8 years, though it went into some kind of remission for about four years, because I quite work and was able to recover in spite of intensive studying. I have no chest/heart problems. But I know it's a common symtom in CFS. My CFS is pretty moderate, though it was getting to the point where I was considering quitting work.

It's worth ruling out any other diseases, though I think the chances that you have a parasites or lymphoma are low. In lymphoma, I believe you have spouts of higher fever, for example. Anyway, you are very inquisitive, so sooner or later you will find out what will cure you or relieve your symptoms considerably. Just don't give up!

Even when I was suffering frow weekly "comas", I usually felt better towards the evening. But because I'm working I can't afford to be up until 11 - I still need about 10 hours of sleep every night.

(I mean I have been considering quitting work again, after my symptoms returned. But recently I've been much better thanks to D-ribose.)

Thanks Avocado. Should I find out anything I will certainly re-post. I am having more tests. I need a god damn co-ordinate to work from, not just this vague 'post viral fatigue' crap. I'm also noticing how this condition is almost by the minute up and down. I also need to consider heart damage as I know viruses are capable of this. Considering I was an endurance athlete in October and now sometimes standing is difficult, breathing is problematic, WTF is going on. I only post here when I feel well enough to do so my energy is that precarious.

I tried D-Ribose for one month but didn't feel anything from it. Aswell as coq10, l glutamine, glutathione, magnesium, rhodiola, ginseng. All done regimently with the correct dosages etc I'm taking the best supplements money can buy and am not noticing anything truly dramatic. I do believe in mushrooms for the immune system and green foods. Mushrooms I do notice help relax me.

I believe the Corvalen D_Ribose brand is supposedly best so I have a tub but haven't used yet. I want to be sure I actually have CFS and not something else.

Please don't say post-viral fatigue crap, because it may well be just that! With your athletic background you are pretty much a textbook case. Well, also for example adrenal insufficiency has similar symptoms... I don't know that disease so well.

I'm also using Corvalen -> D-ribose, 2-3 scoops per day - smaller portions did not work for me. But yes, not everyone gets help from D-ribose. I don't notice any difference with coq10 or other nutrients, but I've been thinking of trying large doses of vitamins B and C. I mean several grams per day. Then there's also LDN to try out.

def do the adrenal test from genova diagnostics - i used them and it diagnosed adrenal exhaustion...this might explain your crash and wired at strange times feeling...also mega dosing of vit c has proven to have helped...i will message you a really good book someone emailed me on adrenal fatigue

I suffer Restless legs so thats interesting

I wonder if it is neurological then how does one recover from neurological?

Why is my discussion taking so long to be approved? I was feeling really ill when I wrote it and it took a lot out of me. If it is because I put my website address in I am sorry and all you have to do is take it out. I was trying to encourage David.

Thanks Avocado, Jacquie and Alison. You know I'm approaching the don't care state. I was in hospital last night because I awoke at 11.30pm feeling like I was about to die, utterly horrific, I felt like my heart was just about to stop. I was then shivering for a few minutes. Panic attacks ? Eventually the doc said to try anti-depressants, yes I am serious. I knew it was going to be a waste of time if I wasn't dying but this is not like me at all. Back at the GP this morning.

David,

These "episodes" have happened to me before and they are scary...I usually wake up at about this time at night (11:30-12:00) feeling unwell and very hot, sweating, sometimes my upper body is completely drenched, then my heart will typically take off racing, well over 120 BPM by my estimate. This is accompanied by tingling in my shoulders and back. I try to stay in bed during these moments because I'm worried about passing out if I get up. Eventually my heart rates goes back down and I get chills. This pattern is usually predictable.

I think it is neurocardiogenic, because I've had the same symptoms before pre-syncope (pre-fainting), the chest discomfort, nausea, tingling in back/shoulders, heart rate slows (feels like it's about to stop) and then increases, followed by chills.

I wish I could tell you what is going on, but I can tell you I've had the same symptoms and seen lots of cardiologists...nothing seems to be wrong with my heart - 1 month of wearing a holter monitor, 3 stress tests (1 stress echo), 2 echo cardiograms, and numerous electrocardiograms. All they found was mitral valve prolapse and 1 pre-ventricular contraction (PVC), very common, and certainly not serious issues.

Hope you are feeling better soon,

Thanks mate. Been out for a walk this morning,1hr 5mins, because I can't stand staying inside but at the same time I could just lie in bed all day. I'm also trying not to lose any more weight, when I started I was a lean 11st4 now I am 10st 8 and for someone 6ft tall this is not great. I feel really thin and weak, whereas before all this I was capable of running 13 miles any day of the week, plus swimming, plus weights. I am putting more of a focus on my adrenals at the moment, and see what happens there. I need to get some tests done and I will. Do you generally feel 'better' at about 12pm then powerless 4pm ish ? This has been my own pattern. How long have you had PVF/CFS ?

Because I am feeling reasonably stable at the moment. I want to let folks know I am buying salts for my bath to help with this condition. Westlab dot co dot uk are offering amazing deals on their 25kg bags of himalyan, Epson, and dead sea. You might want to check that out as the deal ends midnight tonight. I'm throwing the preverbial kitchen sink at this god damn illness.

I've had CFS for about 19 months, and I've been to every Dr and had every test run you can imagine. Did the Drs tell you anything when you went last night? Sounds like they chalked it up to anxiety, yes?