You WILL get better...but you must stay positive!

[Ellen]

Hi all,

I am a new user, and I came down with PVF in mid October 2010. To this date I am not sure what virus I had, so I will give you a short overview of my illness.

A few weeks before I got ill I kept feeling very tired and dizzy.
Then one night I woke up in the middle of the night with a SPLITTING headache. It felt like my head was on fire.
When I got up the next day the lymph node on the right side of my neck had swelled up and my ear on the right side felt inflamed.
I went back to work for two days, and then BAM! I was leaving work, and suddenly I felt as if I had been poisoned. My legs started shaking, I felt fuzzy and buzzy inside, my heart was racing, my chest felt heavy and I was suffering extreme brain fog. Somehow I managed to get on the bus and get home.
The next day I went to the doctors and they checked me over and he said that my blood pressure was 140/90 and he said that it was something viral which should clear up in a few days. I went back home, and things only got worse. I went back to the doctors again, and she checked my ears and said the right ear looked inflamed and she gave me some anti-biotics.
The medicine did NOT help, and for the next 4 weeks I was alsmost bed-bound.

For those 4 awful weeks I suffered:
1. Tremors and twitches CONSTANTLY all day and night throughout my whole body
2. Whole body was ACHING terribly to the point it used to make me cry
3. SEVERE SINUS PRESSURE - it felt like my head was going to explode, it felt like a vacuum, getting tighter and tighter and then my nose would make these odd clicking sounds
4. Right ear was COMPLETELY blocked - did not lose my hearing but if I put my hands over my nostrils and blew hard only the left ear would pop
5. Teeth and jaws were constantly aching also
6. Terrible brain fog - I could not do anything for myself and I had trouble remembering things, my whole head and the world around me felt surreal almost like I was detached and was looking in from the outside of life
7. Pins and needles and loss of feeling in my legs, odd sensations of burning in various places of my body
8. Weird electro-magnetic feeling like things were vibrating around me
9. Awful panic attacks and sudden feelings of dread, and the horrible fear that I was dying of some bizarre disease
10. Constant feeling of nausea, dizziness, and feeling that my bed was moving when I was trying to sleep
11. Extreme fatigue - just walking up the stairs was so painful and exhausting. A walk to the shops just over the road would mean I had to go straight to bed afterwards.
12. Constant strange noises coming from my stomach and slight diarrhoea.
13. SERIOUS aversion to loud noises, bright lights and being in crowded places.

For 6 weeks all I did was eat and sleep, and I mean that literally. I actually started to get worried about how much I was sleeping. Eventually after 6 weeks my lymph node went down on my neck and my ear started to not feel so inflamed. However I still could not pop my ear on the right side and I was still suffering terrible sinus pressure, although the twitches and tremors were not constant. However I was still extremely tired and exhausted and found it hard to do the simplest of things. I had to move back in with my mother and father, and let them look after me, which at the age of 30 is really demoralising; makes you feel like a helpless child. Lucky for me I work for Birmingham City Council so I did not have to worry about money and bills for the first three months. After the 6 weeks the twitches started to die down a little, and the headache got a bit more manageable, so I was at least able to get some sleep which was really hard at first as the pain was so intense and no headache pills would even touch the pain one bit.

Anyway, in January I returned to work on a phased return, doing 4 days a week 10am-3.30pm, which was very tiring at first. I went to see an Occupational Therapist at BCC, who said that I had suffered a significant viral infection, which she suspected was labyrinthitis. She said that I had to try and push myself a little and go for walks and to eat healthy and exercise to get my body strong so it would fight off the fatigue. It was hard going back to work, as so many times all I wanted to do was go home and sleep. However after a while I noticed I was able to walk a bit more each day, and slowly but surely I felt I was getting a bit better. One thing that I will say about PVF is that unlike other illnesses progress happens in months rather than weeks so you have to be patient and let your body take its time and heal itself.

Overall, I would say my faith in Jesus helped me (praise The Lord!) as I believe that the body has been created to heal itself, so I refused to give in. As time went by I noticed that the dizziness started to get less intense and after a while my hours were gradually increased back to 29.20 hours a week, which it was before I got ill. I am not completely recovered yet, but I have improved immensely, and this ilness has made me see that you have to appreciate life, stop rushing around trying to be a super-star and just be happy being yourself.

At the moment the symptoms that are still present are:
1. Headache - still there, but more of a low-grade dull ache. Sometimes my neck still hurts, but it is not there all the time.
2. Sinus presure - very mild - not there at all when I stand up only seems to play up a bit when lying down
3. Twitches are very minor and only happen now and again
4. Still feel a bit foggy brained now and again, but it only happens a few times a month, rather than constantly there
5. Tingling sensation in my thighs and if I over do it they feel a bit weak, but other than that I am ok

Here is what I did - I am not sure if any of this encouraged my recovery so take it with pinch of salt:
a. From the beginning of my illness (week one onwards) I started to take supplements - Vit C 1000mg, Multibionta Immune System, colloidal silver, Zinc 15mg, Cod Live Oil
b. I already owned hypnotherapy CD's by Glenn Harrold, but in week 5 I went on Amazon and bought 'Heal Your Body' by Glenn and listened to it every night for 1 hour before going to bed
c. Actimel every day
d. Avoided fizzy pop and junk as it seemed to set me off at the beginning, so I drank lots of Green Tea
e. Made sure I got lots of sleep
f. My mum cooked everyday - we are West Indian (Barbados) so I ate lots of good food i.e. sweet potatoes, yam, bedfruit, green banana etc so maybe that helped too who knows...
g. I was persistent and kept taking the vitamins EVERYDAY - still take them now and will continue to do so until this is completely resolved.

So all I really wanted to say was HAVE HOPE. I kow sometimes that you might read these stories of extreme cases, but the odds are in your favour to make a full recovery. I also think more research on PVF as I have read so much confusing stuff. Some people say it is CFS, some say ME, some say adrenal fatigue, some say that PVF is not the same as ME/CFS although it has similar symptoms and that everyone will eventually recover from PVF. In my opinion I think it depends on how good you looked after yourself before the viral attack and what you did in the first few weeks, which will determine how long you suffer.

For me, my doctors were quite unhelpful and unsympathetic, it was only after the 6th visit that they said I had PVF. At times I felt like I was being accused of making it all up, but in some ways now I thank Jesus that this happened as it forced me to do my own research and after a while I realised that the doctors simply did not have the answers and I was going to have to trust his Divine Intelligence already placed within my immune system to sort this problem out. And God answered my prayers. I realised that I just had to keep my body strong by eating right and taking the vitamins, sleep well and just wait, and sure enough I started to see an improvement.

In some ways it is hard as you feel so isolated, as you look ok on the outside, so people just cannot understand what you are going through, and accuse you of being lazy or just milking it. However I can say this: PVF is not something to be sniffed at. It is real and it hurts like hell. I had Quinsy back in 2003 and compared to PVF it was a walk in the park. However always remember: YOU WILL RECOVER. Your body is just depleted and it will take time for your reserves to be restored. Once reserves are back up, things will improve.

God bless xxx

[sambalina]

Thank you so much for your recovery story! I have similar ideas to you and am making massive improvements after 8 months of this illness, in and out of hospital etc. Inspirational indeed!!! Bless,

Sam

[Ellen]

Hey Guest,

It is shame you did not leave your name, but nevertheless god bless you. It is sad that your wife and family are not supporting you through this immensely stressful time. Whatever happened to better or for worse? Although you may feel resentful of the lack of support, understand that your wife and family lack understanding as they simply cannot feel what you are going through. I do think men get a rougher ride, which is not fair to be honest. I think one of the most scary effects of PVF are the neurological ones, the panic, the fear etc...You need to get a support network. If your wife cannot understand you, then you need to at least be in contact with those who can. If you need to speak to me, reply and I can always email you and keep you encouraged. You will get better. To be honest I think the first 3 months are hell, 3-6 months is still hell-ish but you can see first shooting buds of improvements. 6-9 months you continue to improve, 9-12 months it gets easier and easier.

Don't get me wrong now and again I have days where I get phantom symptoms but I think these are just nerve endings remembering the pain etc...I will pray for you and I know God will answer my prayer. You will improve. God bless x

[Spike]

Hi Ellen
I'm the guest post, thankyou for your very kind words they mean a lot, truly.
I've been thinking lately when I do eventually kick this thing I will feel like dancing in the streets lol, but seriously
Thankyou and god bless

Spike(Gareth)

[Tallypop]

Your symptoms sound very similar to mine Guest, its the nausea which gets me the most, but I get times when it goes so I know in time I will recover, just playing the waiting game now <img src="images/smilies/smile.gif" border=0 />.