just diagnosed with pvf

[pete]

hi my names pete,
i`ve just been diagnosed with PVF, never thought you could be so ill and no one can find anything wrong and theres no treatment for it.
as usual work don`t understand just how it makes you feel, if no one can find anything wrong with you then you`re not ill.<img src="images/smilies/upset.gif" border=0 />

[rm1]

I can sympathise work have been crap with me too. You just have to stay positive and do everything right to promote recovery. Also popularise the problem people need educating about this then perhaps they will be more understanding.

[isis25]

Hi Pete, welcome to the forum!

They have found 'something' wrong with you...you have PVF! It comes under the 'umbrella' of M.E., Chronic Fatigue Syndrome and even Fibromyalgia! They all have horrible symptoms that lump together and make you feel ill! CFS/ME/PVFS is recognised by the World Health Organisation as a chronic and debilitating illness! Try showing work the sleepydust site <a href="http://www.sleepydust.net/" target="_blank" rel="nofollow">http://www.sleepydust.net/</a> where they can read about it or watch a video to help them understand (if they want to).

There is treatment in the form of 'self management' which you can receive from a CFS clinic. Unfortunately the NHS (if you're in UK) only refer you at the 4-6 month mark and thats if you're really lucky! Check out <a href="http://www.nice.org.uk/guidance/index.jsp?action=download&o=34187" target="_blank" rel="nofollow">http://www.nice.org.uk/guidance/index.jsp?action=download&o=34187</a> (the NICE guidelines for NHS) and take them to your GP if necessary to try and push for a referral around that time! If you've suffered around 6 months then they should be giving you a diagnosis of CFS which will cover you under the Equality Act 2010 so you can ask work to make reasonable adjustments etc.

We've got a facebook page if you want to join us https://www.facebook.com/#!/groups/107949012612338/

You're not alone!!
Ang
x


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I won't let ME/CFS and Fibromyalgia rule my life, I'll just adjust it accordingly!