Did your PVFS start suddenly or slowly over time?

[Danny880044]

I remembered earlier that while talking to a doctor at my surgery, he asked me if these symptoms started slowly or suddenly? I think he wanted to find out whether I woke up one morning feeling like this, or whether it's something which has slowly came on.

In my case, it's something which has slowly came on since mid-2009 really. The whole abscess and swelling lymph nodes started then, and although my symptoms weren't as severe, I didn't worry too much at that point in time and put it down to 'Running myself down' because the symptoms would show on an evening and usually I'd slept badly the night before, or worked too hard lifting my weights. Sounds silly I know lol.

I remember him asking me "Why didn't you get help sooner!?", I explained because of the swelling of lymph nodes and being a heavy smoker, well, I was worried and was forced to get help when the symptoms and swelling was far too bad to deal with without seeking help.

So, guys, did your PVFS/CFS/ME start suddenly, or over time like in my case?

Dan

[Danny880044]

Hi SleeplessHopeful,

It sounds like it really did happen quickly in your case, do you know what triggered it?

I see smoking as one of the few things I have left which give me pleasure, although saying that I really should stop because I can't afford it now <img src="images/smilies/upset.gif" border=0 />

My symptoms have gradually came on it seems over the past two years, I remember mid-2009 I would feel run down and tired if I did too much, like I said I ignored it and it was manageable. It's only really since all the anti-biotics and the op at the hospital for the abscess my symptoms have come on really strong.

I had a diagnosis of PVFS 'thrown around' by my previous GP, unhappy with that and some other things I moved surgeries and I'm still trying to be taken seriously.

My symptoms seem to be mostly typical, I have very poor sleep and it takes me hours to be semi awake in the morning. My activity levels are greatly reduced, if I try and do too much I feel absolutely exhausted with horrible aches and pains all over my body. My joints are sore and ache for no reason, and even typing this post my fingers are starting to ache. I get really severe headaches and pains in my eyes, and my eyes are always bloodshot. I spend all day yawning even if I have had reasonable sleep.

It seems that however much sleep I get, I still feel as bad the next day. I have slept for 12 hours and still felt as bad and as exhausted the next day.

I struggle with my memory, and I had to take my father with me to see my doctor last time because my memory is virtually non existent. I'm always losing my words half sentence too.

A strange one and I can't work out if it's related, but sometimes my legs twitch lol. I think because they're so painful and sore when I get into bed on a night I sub-consciously shake them, at first it annoyed me but now I enjoy it because it sooths the pains in my legs. I do it during the day too, and people will always say to me "Dan, your engines running again!" haha.

I'd like to say I'm on the mend, but if anything the symptoms seem to be getting worse as the weeks go on. That's partly why I've been nagging at my doctors and trying to get a specialist.

I used to love writing music and playing my guitar, but I struggle now because even if I do find the energy to write music, I can't focus and lose concentration and feel even more exhausted. I used to love playing my guitars but now it seems I have no coordination in my fingers, and they ache if I try and play <img src="images/smilies/upset.gif" border=0 />

This illlness is hell, but what can we do? It's good there's this forum as it's been my lifeline, and I wouldn't take anybody for granted on here, we've got to look after our own!

All the best,

Dan

[SleeplessHopeful]

Hi Dan,

My symptoms came on really quickly. First it was the sore joints then pins & needles then the sore eyes etc etc within weeks I lost about 70% of my health. Never thought that could be possible. Now, 5 months later & this thing still lingers.

Im a smoker too ;( probably doesn't make my condition any better!

What are your other symptoms? Are you on the mend yet?

Good luck!! M

[SleeplessHopeful]

Hi Dan,
I can totally relate!!! I have most of your symptoms too & I was constantly run down before it all began. I'm still smoking, how on earth did u quit lol?!?!?

I find the best way to feel better is to control the pain with ur mind coz for all we know our brain has an imbalance wheich causes us to feel hyper sensitive so perhaps all of our pain isn't really there we just feel it because our brain keeps firing nerve signals. Thats why I try to dismiss it & ignore it as much as I can not to give it much power.

Yesterday my neck & shoulders started hurting so so so bad ;((((((((((( I tool Celebrax hope it helps. We have to stay positive no matter what & let this thing leave our bodies. It really sucks that it's taking the beSt years of our lives. On the other hand I feel like I learned lessons that I otherwise would never have learned.

Wish you well <img src="images/smilies/wink.gif" border=0 /> keep us posted on ur progress , I too am grateful that there are ppl that understand what I'm going through.

Xx m

[SleeplessHopeful]

Awwww & Yeah the brain fog & memory probs are a killer!!! I used to be sooooo sharp & now forgetting words & things to do or say. I'm a scientist by profession so this really sucks ;(((((((

[Danny880044]

Hi Sleepless,

You are totally right about the pain, last night I did something stupid. Had this killing pounding headache all day and nothing would take this pain away. It was so severe I couldn't focus my eyes on anything, the slightest noise hurt my head and I had all the lights off in the house because I couldn't handle the stimuli. In the end I found some mega-strong pain killers called dihydrocodeine which I had left from a horrible assault last year. They were prescribed for me at that time for headaches and the pain after having one of my front teeth smashed out and all the stitches.

I took two of which did nothing, and then I took another two. I know I shouldn't have taken this many but the pain finally eased enough for me to handle it. I felt all spaced out and weird, and almost drunk. I didn't know they were an opiate based pain reliever, but I managed to sleep without pains in my legs and aches all over my body. Let's see if I can do the same tonight hehe.

Even with my depression & anxiety I've always had crystal clear memory, and I used to be able to use big words and talk properly. Now it seems half-way through a sentence I'll forget entirely what I was talking about, or lose the word I need and look like an idiot. It's such a pain! <img src="images/smilies/upset.gif" border=0 />

I hope you're well and I'll definitely keep posting here with updates, it's truly an amazing place!

-hugs-

Dan