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Post Viral Fatigue

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Topic starter
(@mondeost24)
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Joined: 18 years ago

Hi, new to the forums. I'm hoping for some advice.

My symptoms started 6 weeks ago tomorrow, I woke up feeling dizzy and a general unwell feeling. This went on for a few days so I went to GP, he said I had a slight fever, blood pressure/heart rate was normal. He said it was most likely viral and these things sort themselves out within 1-2 weeks.

2 weeks passed and I was still the same, dizzy from waking up, maybe dizzy is the wrong word more a spaced out, detached type feeling. I also had pains on and off in the tops of my arms, back and chest, sometimes stabbing pains but mostly aches. And the general unwell feeling remained, like nervousness, butterflies that kind of thing, and slight nausea although I haven't actually been sick.

I went back to GP after about 3 weeks, this time they did blood tests and a chest x-ray, all came back fine. They did ESR that was fine also.

Now doctor says Post Viral Fatigue, he said a slow gradual recovery taking 2-3 months.

The thing I dont understand though is I can't seperate where the virus stopped and the PFS started, the symptoms have seemed the same throughout. Has anyone any experience of this. My body does feel quite tired, but i'm not tired in the sense of I could sleep all day.

Luckily i'm managing to keep up with work, but not feeling up to anything socially.

Is there anything else it could be or do I just need to wait it out 2-3 months?

Any advice appreciated.

Ben

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Posts: 1462
(@anahata)
Noble Member
Joined: 20 years ago

RE: Post Viral Fatigue

I can't seperate where the virus stopped and the PFS started, the symptoms have seemed the same throughout.

They would be cos it's a continuous process of recovery. Often our immune systems don't actually kill off the virus, but beat it into a dormant state. i.e. Chicken pox virus that retreats and lies dormant in a nerve root ganglia (bundle of nerves next to spinal cord). This can then flare up in later life, when the immune system is run down, as shingles that tracks along the relevant nerve. Epstein Barr Virus is another example that resides in the lymph nodes just under the jaw line.

A viral infection can knock the stuffing out of your immune system, which takes a lot of energy to beat down the virus and then well take some time to recover.

Hopefully your system will pick up over the coming months, but worth noting that 'post viral fatigue/ syndrome' were names used for what is now known aschronic fatigue syndrome (CFS) & ME (myalic encephalomylitis). Either way it's too early to tell, but might be worth checking Thread at top of Forum if you havent' already - [link= http://www.healthypages.net/forum/tm.asp?m=67802 ]http://www.healthypages.net/forum/tm.asp?m=67802[/link]

Andrew.

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Posts: 2
(@brightlight)
New Member
Joined: 18 years ago

RE: Post Viral Fatigue

Hi Ben

I just noticed your request for advice. I myself am in a similar position. I had Glandular Fever (Epstein Bar Virus) in Jan and February of this year. In March I seemed to be making a recovery and the same in April. Then in May I went downhill again and I am still in the same position now. I have pain all over the body, headaches, a heavy feeling and I get breathless after small amounts of activity. i have had to give up work and sign on the welfare. I was probably the most happy and active person you could have met last year and now I am like an old woman.

I have to be honest the internet is FULL of negative information and you will be lucky to find the recovery stories on line as these peole just get on with their lives. Also I have been so frightened by the idea of ME and that has to be diagnosed through anelimination process with lots of tests.

Take the time your body needs to recover, rest, don't do anything stressful and drink lots of fluids. Stay away from smoking and alcohol. I have found that vitamin b helps a little as it assists the nervous system.

I am now ill in total 6 months and this round of the PVF has been three weeks now. I cry most evenings as I am so low with it and miss everything going on with friends. People also find it hard to relate to as you may look fine but really you are struggling through the day. I am only 30 years young and hope to make a full recovery in the next few months.

Try to stay positive and find positive stories from people rather than the negative, and if you find them send them to me......
claire x

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Posts: 8
(@tsuker31)
Active Member
Joined: 18 years ago

RE: Post Viral Fatigue

Hi Ben,

I had the same thing happen to me. I became quite ill with a virus and have not recovered. I suffer from Fibromyalgia and kept putting it down to that. Until i got to the point where I wasnt getting any better and my Gp realised that there was something not quite right.
After all the tests were done initally one of the bloods came back that I have the Glandular Fever antibodies in my blood which suggested i was suffering from post viral sydrome. I have had since had more tests done.
After 6 months and not being able to work or do anything much I have been diagnosed with Chronic Fatigue Syndrome/ME. I am due to go to the Pain Clinic in Sept, so hopefully that will help.
I hope things get sorted for you as there is nothing worse than not knowing what is wrong.
I though I was going mad.

Take care
Tracie

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Posts: 2
Topic starter
(@mondeost24)
New Member
Joined: 18 years ago

RE: Post Viral Fatigue

Hi everyody.

Well its been 7 months now and i'm still ill.

I've seen various doctors including a neurologist, all can find nothing physically wrong with me. All the blood tests were fine as was an MRI brain scan.

The last consultant I saw thinks its *probably" post viral fatigue.

During the last 7 months i've spent hours trying to read up and research my illness, i've read loads about PVFS/CFS/ME and the defining factor is fatigue lasting more than 6 months, not relieved by rest and made worse by exercise.

This is where I have a big problem with it because i'm not feeling tired at all, i'm working just fine, sleep patterns are normal and i'm not struggling to get up, I can exercise fine as well and it makes no difference to my symptoms.

Another thing is people say they have good and bad days and the illness comes and goes, gets better for a bit then relapses. Thats not me either, I have been the same from day one to right now, no better no worse, each day, every day.

My symptoms now are just a constant malaise ora feeling of something not right. And I have this strange buzzing or trembling thoughout my body. I feel it most when i'm at rest, usually at night when i'm trying to nod off it feels like my phone body is throbbing and my face is vibrating.

Is it possible that I have some other form of "post viral" illness, i.e. different to the standard PVFS/CFS/ME cases.

If so how long is it likely to go on for? Will it ever go away, i'm starting to wonder?

Many Thanks

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Posts: 92
(@dawnymarie)
Trusted Member
Joined: 17 years ago

RE: Post Viral Fatigue

hiya ben,

i got a bad virus in march of this year, continued trying to work etc until july and then symptoms had become so debilitating that i just couldn't continue.

following lots and lots of blood tests etc i was eventually diagnosed with cfs after originally being told it was pvs and i would recover in a couple of weeks.

it is now december and i am no better, though no worse thankfully. i am optimistic and positive, though, as claire has already expressed, it is frustrating to feel like an old woman when i am only in my thirties and was the most energetic, on the go person you could have met prior to getting cfs. and it is difficult for other people to accept how ill you really are when you look ok.

i am smiling and positive for a complete recovery at some point in the future and wish you all the very best for a full recovery too. keep smiling.

love dawnymariexxx

[sm=sandrine.gif]

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Posts: 9
(@elektriksheep)
Active Member
Joined: 17 years ago

RE: Post Viral Fatigue

HOWDI.

Hope you are fully recovered now Ben, as the last post that you made on this thread wasn't since December. If not, I hope the following helps....

I am 25 and live in the UK. I caught Glandular Fever way back in December 2004 and became very ill with muscle fatigue, physical and mental tiredness, fever, etc. As with yourself it was pretty much impossible to distinguish between the period of actually having Glandular Fever and having Chronic Fatigue Syndrome(CFS). They were pretty much inseparable.

My biggest mistake throughout this whole Glandular Fever/CFS period was to become too active too soon. I too used to be a very active person playing several 1-3 hour games of very competitive tennis each week along with badminton and working out regularly. Because being active was a very integral part of my life it was very difficult to accept that I couldn't be as active as I was before and as active as I wanted to be. Many many times after long rest periods I have started to feel better and felt like I could go for a run or partake in some sports activity to the same intensity as I would have done when I was well. This has been my downfall many times. I am still not fully recovered today, I cannot yet play sports at the same intensity level as I used to and I believe that overdoing it too early is largely responsible for this drawn-out period of illness.

I also used to be a very social person, going out and drinking, clubbing and staying up late very regularly. Again I was very reluctant to accept that I could not do these things to the same extent as before and have made myself worse many times by going out drinking and staying up late when I was not fully recovered.

Now things are very different, I have accepted that going out and heavy physical activity are off the menu until I am in better condition. I haven't played high-intensity sports or been out clubbing in about a year now. I know it sounds depressing but it is important not to put extra strain on your body while it is still recovering.

But it's not all bad news, I have definitely improved over the last year and am (noticeably) much more energetic and active than I was in the earlier stages of my illness. The key for me was basically small steps. Very small increments in the amount of exercise you undertake, while maintaining high levels of sleep all the time.

One thing that I would recommend apart from the obvious rest, is a vitamin supplement known as CoEnzyme Q10 (also known as CoQ10 or just Q10). I cannot stress enough how much this has helped my recovery. It has basically eliminated my mental tiredness after about 1 week of taking it daily and it has given me my physical energy back as well. After light workouts I notice that my recovery time is greatly reduced as well - not quite what it used to be but a significant improvement on my recovery time since falling ill. My flat mate also caught Glandular Fever some time after I caught mine, but he has had similar problems with mental and physical tiredness and he has also noted a significant improvement in his condition since taking Q10 regularly. We both take 2x 30mg capsules of Q10 per day - ensuring to ingest it with meals to maximise absorption into the blood.

Q10 exists naturally in, and is produced by every cell of the body and we obtain Q10 in some foods we eat. The quantity of Q10 that the body produces apparently starts to drop significantly as we get older once we've passed the age of 20. I've done a lot of research into Q10 on the net over the last few months and found out some very interesting information some of which I'll paste below for convenience. It may not work for everyone, it's possible it may not do anything for you, but it worked for me and several people I know, and it'll probably only cost you £5-£10 to buy a bottle of it to try.

I know this post is a tad 'essay-esq' in

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Posts: 5
(@maureen44)
Active Member
Joined: 16 years ago

maureen44

Hi there fellow sufferers!
This is my first time on a forum and after reading some of the stories here, I felt I should tell you my experience.
I contracted the shingles in December last year and it really knocked the stuffing out of me, I was signed off work for two weeks.
I felt really rough for the two weeks and as I didn't feel any better I went back to my doctor. Blood tests were done and I was then told I had Pernicious Anaemia as my blood count was low and b12 levels nonexistant.
I was then put on painful b12 shots over two weeks and given tabs to take for low iron. I thought that was the end of it but I still didn't feel any better after the shots so went back to the docter.
More blood tests were done, all came back normal, extremely frustrating as I felt anything but good.
I was extremely fatigued, had the bad stomach, headaches, my bones and muscles ached, hard to describe. Some days my memory was so bad I couldn't tell what day it was even with a calendar in front of me!
Because of the pernicious anaemia diagnosis, I continued to work through it, thinking I was going to get better as the b12 levels built up in my body but it was a daily struggle and I had to be put on light duties.
I worked in a fast paced mail centre where you were on your feet for your whole shift, it was torture, still don't know how I managed.
I eventually had to move doctors basically because, after all the tests were done and having come back normal, my doctor didn't want to pursue the matter any further. I changed practices, feeling like a hypochondriac.
On first meeting my new doctor, I found that not all doctors felt like my old one. She diagnosed me on the spot based one my symptoms and taking into account the tests that had been done.
I had never heard of post viral fatigue syndrome before and it came as a shock to be told that was what was wrong with me.
I have had to leave the mail centre job as It was killing me physically and mentally and I am now looking for a permanent sit down job.
My doc thinks I will get better within six months to a year, hope she is right about that.
I have to pace myself to get through a normal day. My body won't let me overdo it. I am stuck in first gear all the time, forget running for a bus or going out dancing. Takes me all my time to get out of bed somedays.
But I refuse to give in and I am glad that I managed to continue working as it has shown me that I can beat this, got to have a positive state of mind the majority of the time and just give in on the bad days.
Wishing you all a good recovery!

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Gussie
Posts: 3506
(@gussie)
Famed Member
Joined: 20 years ago

Keep going Maureen, keep your positive attitude, work for a time at 80% capacity no more, see if your energy levels build up, work slightly less than that if you can to build your strength.

You may find something like FREEWAY CER, EFT or Natural Healing will help you through this. There are practitioners all over the country, some will specialise in this area. Keep going, there are answers out there and ways in which you can build your life back up.

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Patchouli
Posts: 1369
(@patchouli)
Noble Member
Joined: 18 years ago

Can I suggest a book and a supplement.

Dr James Wilson......Adrenal fatigue, The 21st century stress syndrome.

It cites adrenal fatigue as the cause of CFS, ME, PVFS (call it what you will)

It clearly outlines why this happens and what you need to do to help yourself.

There is also a supplement made by a company which I can send the information on (not sure I can here). The only thing is it is not suitable for vegans or vegetarians as it contains porcine glandulars.

I have no financial interest but read the book as part of my nutrition course and realised I was very close to CFS myself and have followed the advice and took this supplement and feel so much better for it.

Patchouli

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Posts: 18
(@creditonjules_1611053327)
Active Member
Joined: 16 years ago

Hi Ben!

As you will probably see from the various different threads Post Viral Fatigue Syndrom affects different people in different ways!

It seems to be an umbrella term given by the GPs when all the tests they do come back OK and there is no physical reason for you feeling as grotty as you do!

Mine came on after a bout of nasty 'flu. I didn't go off sick and just worked through the symptoms (as you do)! The after effect was worse than the 'flu itself! I felt drained and weepy and just couldn't concentrate! I just felt as though the stuffing had been knocked out of me! Thankfully I have a very kind and understanding Boss who was very forgiving of all the typing errors! I managed to get through a day at work but forget having a social life!

The GP said I will get better but it will take a bit of time. The road to recovery seems different for each one of us too! I'm currently having Amitriptyline 10 mg from the GP to help me settle at night and have a better quality of sleep, various vitamins and mineral supplements, Osteopath treatment (which I was having before but it's more concentrated on the head area at the moment) and I've started to do some gentle yoga. The combination of these is beneficial to me and I'm just starting to get out a bit more now (three months on from initial diagnosis).

I hope you find something that works for you. Try different things. There is no rhyme or reason why somethings work and somethings don't!!

I hope you start to feel better soon!

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Posts: 4
(@840461)
New Member
Joined: 16 years ago

Free online course on ME/CFS

Having read some of the posts here on PVF, I thought you might like to know that there is a free online course with 3 hours of videos on ME/CFS, which talks about how PVF fits in. You can get the course for free at <a class="go2wpf-bbcode" rel="nofollow" target="_blank" href="www.guptaprogramme.com/course">www.guptaprogramme.com/course . Hope this is useful.

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Posts: 1
(@mickeyblueeyes)
New Member
Joined: 16 years ago

HI

Hi all,
Like you all I have been diagnosed with post viral fatigue and what a horrible experience it has been, i feel for you all.

I have been feeling under the weather for the past 3 months or so now since around easter weekend.

Here's how it all started.
It all started off with a slight cold, nothing major a week prior to this which i just dosed up with cold and flu capsules and went about my life as normal.

I was getting ready for a night out, I had a power nap, but awoke feeling a little under the weather, I put it down to being dosile from the kip I had. So i went about my evening making it to the bar and having about 1/2 a pint when i suddenly felt dizzy, and my heart rate was through the roof. I had to promptly return home where I vomited and fell into bed feeling somewhat drained. I awoke the following day feeling dizzy and under the weather which required more sleep for some reason.
Later that day after several hours sleep, I felt somewhat normal. So continued on with my working and social life for around a week.

I then gave blood at work one morning, after returning to my desk i felt a little dizzy, putting it down to low blood sugar or the like due to blood loss, but after eating the symptoms didnt lift i then began to feel really dizzy to the extent I vomited, with this i had shallow breathing with an erratic heart beat. and felt so drained i had to go home early from work straight to bed. I still awoke the following day feeling dizzy with a tight chest but returned to work determined to break through this stage.

I managed working for a while until it became unbearable, I visited the doctors who advised me it was a viral infection and to take parecetamol. After a week of this, I was still feeling tired and dizzy with a low appetite, at this point the doctors took some blood finding that my white blood cells were down and my liver function count was higher than average, which to anyone else indicates a viral infection. I was tested for glandular fever and hepatitis and other liver viruses all coming up clear.

I returned to the doctors evey 2 weeks for blood tests with slight improvement but i wasnt any better in myself, I then continued to work through it but it became too much and I ended up being signed off work for 7 weeks and counting. In this time about 3 weeks ago I had a set of clear blood test results everything returned to normal. I was so relieved that i had made an improvement in my blood results and it appeared that I was on the road to recovery. But still 3 weeks after the good news I still am laying in bed, unable to over excert myself, I still have constant dizziness and like a weight on my chest somedays it feels like its actually effort for me to breathe any form of travel is a big no no. and any exertion I have to pay for by being bed ridden for the rest of the day with an erratic heart rate.
I am still not 100% but am hoping to return to work by monday (very hopeful) but I am really really bored.

Hope everyone is feeling better and I wish you all a speedy recovery.

Mike

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Posts: 5
(@maureen44)
Active Member
Joined: 16 years ago

Sorry, managed to send the same message twice!

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Posts: 5
(@maureen44)
Active Member
Joined: 16 years ago

Hi MondeoST24
Yeah I was the same, no difference between the beginning of the shingles and when PVFS kicked in. I am 8 months in now and the dizziness has stopped. But everything else the same. Like being stuck in first gear all the time and if I try to walk for example a bit faster, I feel the strain straight away. I am now looking to work voluntary as I can't manage every day.
My symptoms dont really flare up unless I overdo it and I am learning fast what I can and ca't do.
I was offered a new job as a receptionist and I took it on the basis that I could sit. When I arrived there was no seat and I had to stand for the duration. I felt physically drained and by the time I got home I couldn't think straight and was in pain all over physically.
This took 40 odd hours for me to recover. Felt like I had gone a couple of rounds in a boxing ring.
Learning to live with PVFS is hard but I am developing a healthy respect for the illness. I try to exercise 30 minutes a day as I actually feel better on the days that I do. Getting enough sleep is very important and eating well.
Forget the social life! I dont drink or smoke so that helps.
Find what is right for you and dont exceed your energy levels, its not worth feeling that bad, Good Luck

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Posts: 447
 hom
(@hom)
Reputable Member
Joined: 17 years ago

Hi- reading the whole of this thread, (and considering this forum is headed up 'complementary health'), I'm really surprised and saddened that no-one's said that they've chosen to try any complementary medicine/therapy. Why, I wonder! It's a miserable and frightening thing to feel unwell for so long and treatments like acupuncture, homeopathy, herbalism, as well as some of the less well known ones, have a good track record in these situations.
It's such a shame that -as someone said earlier- people that get better, don't generally communicate it, and as a complementary therapist myself, it pains me to hear about such suffering.- I would say, choose something that appeals to you and give it a go! HTH Hom

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Posts: 447
 hom
(@hom)
Reputable Member
Joined: 17 years ago

Woops! Sorry, CreditionJules- I've just seen your mention of osteopathy and yoga- hope it helps- but yes, there are plenty of alternative treatments to choose from if that doesn't appeal to others, or doesn't help you. Good Luck Hom

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Posts: 18
(@creditonjules_1611053327)
Active Member
Joined: 16 years ago

Hi!

Hi Hom

Thanks for your concern. I am pleased to say that I'm actually beginning to feel better - the first time in months! I still tire easily but I don't have that bone achingly tiredness which I was experiencing before! I have even weened myself off the Amitryptline (which served it purpose but I would prefer not to be on any longer than I had to be).

I know I will have good days and bad days but I'm just enjoying feeling more like "me" for a change!

I am better because the combination Osteopathy, Yoga and tablets or would I have got better anyway?! - I can't answer that!! I'm just enjoying the moment!

There is light at the end of the tunnel - just keep on believing!!

CreditonJules:)

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Posts: 7
(@seren100)
Active Member
Joined: 15 years ago

Hello all

Am so glad to see a positive chat about GF, PVF, CFS... I am new to the discussion boards but have read up quite a bit on the above since becoming ill with a GF similar virus 6 weeks ago. Like others I have had many tests all come back clear, which is great but left me wondering what do I have, likewise I find it hard to distinguish when the virus moved out and what I expect is PVF has jumped on board.

I'm really struggling with the fact I thought I was on the mend and some met up with some friends, had a walk and few other 'normal' household chores over the bank hol to find myself in bed for 2 days, glands worse than ever.

Something I can relate to with Ben is that I'm 30, work full-time pretty hectic office job and was the fittest I've ever been - doing 1.5hours cardio and 1 hour Pilates most days of the week. I am also training to be a Pilate’s instructor and having being cramming hard for 6 months prior to the virus. I am now getting behind on my course and trying to remain positive but also realistic as to what my body can handle right now. Realising I might need to put the course on hold. I'm fortunate that work is being very good about having 6 weeks leave to date.

I’m interested in the link between the virus and PVF/CF/ME. Did anyone else push themselves bit too much prior coming down with a virus?

I know I'm on the mend, but it is very slow process - something which I feel the western world doesn't really understand. I have been having acupuncture for 4 weeks now and this has definitely helped boost my energy and immune system, it's worth a try. Also being eating lots of veg, wholefoods, soups and vit supplements - spirulina, echinacea and manuka honey all of which I think are helping. Also been told to eat cooked foods as this helps the body digest nutrients, which gives us more energy to spend on healing. Thank you Elektriksheep for info on Q10, going to get some of this and try it for myself. I’m thinking of trying a homeopath – anyone have experience of this? I have found that Pilates has helped me – to work through stiff back and joints from sitting and sleeping so much. Even on days where I have been wiped the breathing exercises can really help.

I think the key thing for us guy’s is rest, listen to the body, eat well, stay away from stress and try and remain positive.

Good luck all xx

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Posts: 142
(@brown1e)
Estimable Member
Joined: 16 years ago

Hello all. Just re-reading what people are experiencing and hoping to find other things that are working for people trying to manage/recover from this. We were out today and it's so hard to see my boyfriend struggling and feeling like he's going to pass out. Similarities with so many of you on the build up, history of being a keen sportsperson, virus, pushing himself too hard in the early undiagnosed stage, shingles etc. I hadn't heard about Coenzyme Q10 so that's one to look into but would be very interested to know if anyone has followed up on the adrenal fatigue information or the Perrin technique where osteopathic treatment for possible thoracic restriction can form part of the treatment - or your thoughts on these? x

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Posts: 447
 hom
(@hom)
Reputable Member
Joined: 17 years ago

Hi Seren100- I haven't been treated for such a condition but I am a homeopath! So, I regularly treat people who have similar symptoms; there are a range of specific remedies that could help you. Most people respond to the treatment to some degree- some get completely better- a minority just see some improvement- and very few don't respond at all. (But there's no guarantees with any treatment is there)
It's unlikely to be a quick fix, although a lot of people notice at least some changes literally overnight. You'd probably need a minimum of a few appointments, spaced out monthly. It doesn't matter if your symptoms are muddled up and complicated or if the medical diagnosis is unclear- the homeopath will be used to treat people in these circumstances and it doesn't affect the likely outcome of the treatment.
If you go for homeopathy, try to find a registered homeopath with relevant qualifications or you can PM me for info. HTH Hom

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Posts: 1
(@janinamid)
New Member
Joined: 15 years ago

Relapse cfs/pvs

I would just like to comment, from my bed, that relapses have occurred frequently since my initial illness 12years ago. I was bedridden for about one year after an attack of shingles. I suffered drenching night sweats, a transient (36hr) rash over my torso, became anaemic and generally became a shadow of my former athletic self. I believe there is a direct correlation between the quality of one's doctor and recovery. I was basically told to get a life. It was only with hindsight and my own research that I realised how my illness had progressed. My Mono test was negative even though no bloods were taken, just a throat swab! Thereafter I was refused tests as the Dr told me that having the antibodies only meant I had been exposed to it (GF, Mono, EBV). Since that illness I have suffered about a dozen or so relapses and have lost a lot of my life as there is only one thing you can do; lie down or you fall down. I believe that the endocrine system becomes compromised, not just the adrenals. A flat battery and empty fuel tank don't adequately describe the febrile malaise that takes one over. It feels like one's very DNA has been taken over in every cell. Relapsing has been part of my life and things are very different. I get liquorice tincture from the herbalist and keep Lysine and stick to an optimum diet, eating very well. I had amitriptylline for a year as well while sleep was laboured and difficult. I say whatever it takes. janina

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Posts: 7
(@seren100)
Active Member
Joined: 15 years ago

Hi hom,

thanks for the advice:). may give this a go will see how the next few weeks go but i'm starting to feel stronger now.:)

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Posts: 1
(@missy-p)
New Member
Joined: 15 years ago

I have had post viral fatigue for just over two years! Just been for a scan because i have had a pain in my side all through my illness, which they cannot explain. I started off with a virus, unknown, and then it went to post viral fatigue! Its disrupted everything, my whole life and im still not any better off for it. I thought the scan would help give some answers but it hasn't and im back to square one now! Are you still suffering the same symptoms?

Polly

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Posts: 1
 jenc
(@jenc)
New Member
Joined: 15 years ago

Hi all,
Ive had PVF for about 16 months now and understand how unbelievably frustrating it can be. I think I have only really accepted that there wasnt anything else more terminally ill with me in the last 3-4 months. The main thing for me has been acceptance as like many of you I am youg (29) previously very fit and active and never sat down. On doing some research this is most common with people that do not find it easy to relax or like me think that they are relaxed but body and mind is permanently busy doing or thinking about tomorrow or next week. I am now feeling 75% better than I did at teh beginning after going through every blood test and scan known to man and everything coming back negative. This is a relief but at the same time bloody annoying as you think people are not taking you seriously as they cannot SEE anything wrong with you. I have symptoms of extreme lethargy, trembling/buzzing throughout my whole body for at least 9 months which got worse or sometimes now still flares up when I pick up anything like a virus or cold. I had wretching, pains under my ribs and in my side, back pain for no apparent reason, unbelievable weakness in my legs to the extent that I really struggled to walk downstairs and got very breathless at the slightest thing. Noone can tell me whether it was triggered by a severe kidney infection or a virus. It has left me with major hang ups about my health and mortality and am petrified of having relapses as it make me so fed up and depressed. I had no social life or life at all, although I am now an expert of old comedy re-runs on tv!
Basically, my message to everyone is that you have to accept whats happening and run with it. Thats when you start to feel a bit better, and although its a very very slow recovery, as long as everything else medical has been ruled out, you will get there. thought I never would for a long long time but try to keep positive, have a cry and try to listen to your family/friends when they are trying to support you. And get plenty rest, sleep, eat well and limit alcohol. Im a dietitian by profession and the amount of info out there about diet is very confusing.

Hope you are all getting better.

x

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Posts: 1
(@jayziedaisy)
New Member
Joined: 14 years ago

Hi guys
I found this site last night whilst searching on the internet to see if I could find anymore info on post-viral fatigue. As of yesterday the doctor has told me that I most probably have post-viral fatigue after getting the mumps in july this year. Of course all my blood tests came back normal and I was really worried that I would have to do all sorts of tests to find out what i have. Fortunately my doctor told me immediately that he thought i had PVFS so now I know. The thing is I'm not to sure where to go from here, its sometimes very difficult to explain to my friends because when I'm with them I look and act fine so its difficult to explain everything sometimes. I was wondering if you guys could maybe help me with tips on how to explain things to others and make them realize that I am really sick.
xoxo

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Posts: 48
(@energy)
Eminent Member
Joined: 20 years ago

Hello guys,
I just wanted to share with you a blog written by a wife of a man with CFS who recovered with the help of his wife. I know when you are really down it is difficult to see the light at the end of the tunnel - nonetheless the light is there.. 🙂

Love,

energy

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Archer
Posts: 26
(@archer)
Eminent Member
Joined: 17 years ago

Dear Ben,
Please see my post - Cured of CF after 25 years. YOur symptoms are just like mine were after I took a couple of courses of antibiotics many years ago. If you have several dental amalgams I would suspect these. But for the real answer you need to get the book - Amalgam Illness: Diagnosis and Treatment' by A Cutler. It may not be what some folk are looking for, but for many of us it is the only real answer as opposed to a lot of quackery and guesswork that will come your way.

Regards Robert

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Posts: 2
(@gabriel101)
New Member
Joined: 14 years ago

"This is where I have a big problem with it because i'm not feeling tired at all, i'm working just fine, sleep patterns are normal and i'm not struggling to get up, I can exercise fine as well and it makes no difference to my symptoms.

My symptoms now are just a constant malaise ora feeling of something not right. And I have this strange buzzing or trembling thoughout my body. I feel it most when i'm at rest, usually at night when i'm trying to nod off it feels like my phone body is throbbing and my face is vibrating.

Is it possible that I have some other form of "post viral" illness, i.e. different to the standard PVFS/CFS/ME cases.

If so how long is it likely to go on for? Will it ever go away, i'm starting to wonder?"

My symptoms are pretty much identical to yours, and this is the first time I've heard of someone experiencing the same thing. I had to defer my work for a year because my brain feels too foggy and i get the same 'buzzing' 'electrical' sensation in my limbs, usually more at night.

I've been experiencing it for 6 months and am going to get a definitive diagnosis very soon (given the 6 month cut-off period for ME/PCFS diagnosis).

I am doing the Lighning Process course in two weeks, and will post on here how it went afterwards.

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Posts: 2
(@gabriel101)
New Member
Joined: 14 years ago

I had the pain in my side, too! I had scan after scan, MRI/CAT and ultrasound. Nothing there. I think it's just yet another delightful symptom of this infuriating disease.

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