Help Me !

[lynny]

Hi there

I really need a bit of advice and chat from sufferers as Ive been told after 4 wks of feeling awful that I may have pvfs Im so scared I keep crying all the time <img src="images/smilies/upset.gif" border=0 /> no one understands and my family and friends say its in my head

[miggio]

hi.Mike here ..welcome.it's tough people don't understand unless they have had this.don't worry too much.I know easier said
than done. I have this a year now its a rollercoaster of symptoms.I am finding this hard to write due to brainfog.get on to websitesabout Cfsme.some evev have good explinations for family.it takes time for familly to understand so it up to you to educate them.hope this will pass quickly for you. are your symptoms bad.?work?Look throu
gh this forum.for answer. ifound it helpful in the beginning.

[Init1972]

Hi Lynny - sorry to hear you aren't getting much support - it is SUCH a hard condition for people who don't have it to understand let alone those who DO have it!!

For help with explaining to others then the Sleepy Dust website is great and has a FAB video you can email to people to help try to explain a little of how you feel. You certainly do find out who your TRUE friends and family are with this condition but maybe we are all due a little "Clear Out" occasionally but are just too busy to do so lol

<a href="http://www.sleepydust.net/" target="_blank" rel="nofollow">http://www.sleepydust.net/</a>

Have a look - one of the best ways to help to manage this condition is to listen you body and DO as IT tells you especially when it comes to resting - your HEAD will say Hoover but your body will say LIE DOWN!!! lol

Research is key and you will find HEAPS posted in this Forum - but I warn you to take it slowly otherwise you may fry your brain reading so much!

Les xx

[miggio]

esr is usually raised when you have an infection.as its been 4 weeks it probably still raised.my esr was normal.your dr.will recheck if concerned it too high.

[Init1972]

Unfortunately none of us are doctors and even if we were we couldn't diagnose on here as you would require further tests.

In my almost 2 year experience of this condition you MUST learn how to communicate and work WITH your GP - if they are NOT willing to then call the ME Association and they will provide you with GP's in your area.

Lynny 1 month will be seen as early into anything so a PVFS diagnosis as I am sure a lot of others on here will agree is a great help (it took 4 months for me to get any sort of diagnosis and some a year or so down the line are STILL waiting!!) although I also understand how scared you will probably feel and like they are just putting you in a corner.

~If your GP diagnoses PVFS then they shoulsd have advised you on what to do - rest, keep an eye on symptoms, and come back if anything changes - it will be REALLY useful to you right now to keep a diary - I don't mean writing an essay but just symptoms, sleeping times and medications and take with you to your appointments.

If you can rest properly NOW you could pick up sooner - no-one can say for you i'm afraid but in our world of busy lifestyles more and more peoplke are burning out and taking some time to recover.

Plenty of advice on Rest and Pacing through out this forum and I'll be honest - I am USELESS at it most of the time having been used to 39 years of running around like a headless chicken lol but when I DO do it it works and my only regret is NOT listening and doing it MORE when I first fell sick - who knows if the outcome may have been different?

Keep asking questions and reading the forum but more importantly only in bitesize chunks in between resting!

Les x

[lynny]

Been to doctors again - she wanted to admit me to hospital?! Should I go and get tested to put my mind at rest or keep sitting and waiting? I dont know what to do anymore I keep crying and crying wanting to make myself better and 'snap out of it' as my mum says. I feel so bad today <img src="images/smilies/upset.gif" border=0 /> I feel like no one cares or understands and I cant believe this is happening to me.

[lynny]

Hi

Im 29, got married in august and feell poorly on honey moon, recovered after two weeks and led a normal life until 5 wks today when I fell poorly with similar symptoms to august, I feel like at a time when me and my husband should be starting our life together Ive had it all taken away so suddenly. Im housebound, spend all day on the sofa, feel up and down but never 'right'. Also Im just so scared and dont want to accept whats happening to me but my body wont let me do anything to fight this. I really cant cope, I have cried for 3 hours today as Im on my own and hubbies at work. I just keep hoping that tommorow I will wake up and all these feelings will have dissapeard.
xxx

[Init1972]

Hi Lynny - I think the prioroity for you is to rest really well (this means to actually STOP what you are doing and rest - not rest whilst answering the phone/emails etc - switch off the phone and close your eyes) and research as much info as you can to take to your GP. Pacing is somethihng else that we are encouraged to do but it is tricky but totally do-able and FREE! We have to literally 'Un-do' everything we have been taught since childhood like 'pushing the extra mile' 'pulling yourself together as it's all in the mind' etc etc it certainly isn't and I can testify that!

The body requires lots of sleep when you get a virus - there are times when it just can't kick start itself again and this is possibly what's happening to you so you will need to rest for longer to get better and that's the hard bit to deal with as it's an invisible illness so no-one can see you ARE actually ill - same as someone with Diabetes but atleast they have recognised condition and treatment whereas we don't yet for PVFS/CFS/ME hense the ignorance (MS & Diabetes was exactly the same once!). Sometimes you can sleep TOO much therefore making the body weak and more sleepy so it's about finding the balance and keeping to a routine for your sleeping habits - I only ever sleep in the daytime when I am fighting a new Virus and know I NEED to sleep - otherwise I rest instead and then I can sleep at night (sometimes!!).

I am NOT a Doctor of course and can't diagnose you with anything and am NOT saying you HAVE CFS/ME, but if someone had told me this at the beginning then I would have taken a lot better care of my self and researched more and hounded my GP for the tests.

<a href="http://www.meassociation.org.uk/?page_id=1685" target="_blank" rel="nofollow">http://www.meassociation.org.uk/?page_id=1685</a>
There is some GREAT info and help on this site and the page I have given you is "The symptoms and diagnosis of ME/CFS" - Now a lot of GP's are now diagnosisng PVFS when symptoms are less that 6 months in time and as this will tell you there really isn't much that currently can be done with the exception of having ALL the listed tests and receiving a copy of the result for yourself.

Take a read through and maybe print a copy and highlight everything you have been feeling (remember not everyone has all or most of the symptoms and some don't even experience Fatigue) and then highlight off the tests you have already had and write their results next to it - then you can make an appointment with your GP and discuss what they need to send you for next to eliminate or possibly diagnose - for instance - a lot of people have Thyroid issues which are easily missed as the tests are not done properly or at all and can be corrected with medication and diet so ensure they test you thoroughly although I have had mine done and I am CONVINCED I have an underactive Thyroid as well as CFS/ME but my blood results came back in the 'Normal' range and the GP refuses to look into it any further DESPITE my having ALL the symptoms - so I am now having a battle with my GP (told you before - you need to be strong and fight for YOUR health).

Did you have lots of planning for the wedding and get pretty stressed out by it? Stress is the worst thing and you will find that most people in here were heavily stressed prior to illness and removing the stressors helps to eventually lift some symptoms - for some it removes them totallly which is fantastic and they can lead a relatively normal life again!

My story - busy busy work from home Mum - could NEVER say NO - working 2 people's full time jobs on my own virtually and then BAM!!!! Oct 2009 I got Pneumonia and lost my work (I am Self Employed) IN Feb 2010 I started some work again with same client and in March I was struck down with reccurrent throat and chest infections and diagnosed in the July with CFS/ME. I turned 39 this August and in my whole life I had only ever suffered with really bad sore throats occasionally and fatigue which I just put down to working hard so I ignored the signs to slow down - and I am not the first or last to do so and finally after my CBT therapy I learnt to STOP feeling Guilty and to say NO more (still hard lol) and to look after myself more and STOP being a Prefectionist!!

I hope you are finding some help on here - it's sometimes just nice to chat which is why I mentuioned the Facebook group which is also PRIVATE so No-one can read your comments unless in the group.

If you want a chat then send me a Private Message

Les x
<em>edited by Init1972 on 12/6/2011</em>

[Init1972]

Lynny - how old are you if you don't mind me asking just so I can hopefully give you some advice?

You really need to speak with someone which I know you already knew and it would be great and find out if there is a clinic in your hospital or locally to you.

PVFS is closely linked and often called CFS/ME so try not to be scared (although I felt exactly the same as you and I am 39!!) when reading it as there is NO real term agreed on yet and a lot of medical people do not understand (OR believe) it yet and we are all working hard to help raise awaremness and try to help each other. Your Mum will tell you to "Snap Out of it" (mine did too) as she has NO idea what is happening and as the tests you have had are all normal then she has nothing else to go on and we all tend to believe a GP when they diagnose us.

It would be worthwhile looking at the sleepydust Video I gave you a link for, If they want to send you to hiospital for tests then do so - arm yourself in advance with knowledge about PVFS and ask relevant questions and most importantly don't be brushed aside but be firm and write down EVERYTHING and ask for ALL copies of bloodworks and to see any x-rays, find out if there is a specialist in CFS/ME you can be refered to but most importantly please REST and pace yourself - if you have an appointment - don't go out before hand and get a lift there and home afterwards - not walking and the buses etc like I used to do - your brain will be gfrazzled after just the talking with a Dr!!

This is a great group who can help you with al,most EVERYTHING you need if you are a child and <b>even up until 26 years </b>of age:

www.ayme.org.uk

"<span style="color:#FF66FF"><span style="color:#0000FF">AYME(pronounced ‘aim’) is the largest charity for children and young people with ME/CFS, with over ten years of knowledge and experience about how this illness affects children and young people.

We know how important it is to have good, understanding friends, which is why AYME offers lots of friendship-supporting services like an online community, pen pals, e-mates, buddies and local get-togethers, all run by other young people with ME/CFS.

They are all under 26 and have probably been through similar situations as you. Members get a bi-monthly magazine packed with young people’s news and views. You can choose to get involved or just enjoy reading and listening to what others are getting up to.

Join online! It’s absolutely FREE for anyone up to 26 in the UK and now our membership form is online you can join quickly and easily and get even faster access to all of our services</span></span>."

There is also a section for Parents to read and schools etc so maybe email to your Mum or a relative who DOES understand you to help.

Make sure you keep in touch on here or Facebook xxx
edited by Init1972 on 12/6/2011
<em>edited by Init1972 on 12/6/2011</em>

[Helen82]

How are you feeling Lynny?
Did you go to hospital and have tests?
I hope you got through Christmas ok xx