Its All In your Head

[vansa]

and i believed it

after suffering bad effects since 1995 i have been told its all in my head......i at that time had white coat syndrome and believed it so i spent the next years thinking every symptom was in my head and just delt with it........i always have unknown anaemia and thought the profound tiredness was due to that (all in the head) then one day i got to thinking if its all in my head why do my bloods always come back abnormal... my journey began......its only this year 2015 that my GP sent me to a rheumatologist... he actually listened to what i was saying i was asked all sorts of weird questions it was hard for me to answer i was very confused as my mind had become accustomed to.... (its all your head).....and i told them so.......they were brilliant and seamed to understand and they took there time with me.......i have been diagnosed in the past with all sorts and am offered help and support but when i leave hospital and i try to get what was promised i never get it.....then i would see my GP ( not the one i have now) and i tell them what the consultant said i had i am abruptly told NO you don't have that this happened on so many occasions...that i just didn't bother with researching anything they told me......oh and my nearest hospital oh god they treated me unbelievably bad....... (i am talking about my experience i believe that it was something in my notes why this happened) .....they have nearly killed me on a few occasions not listening to me and have ended up in intensive care on far too many occasions.

i was given leaflets when i left the rheumatologist about SLE lupus have had bloods taken but what do i do now i am very confused. they said that it probably is lupus but with my past history of being diagnosed with something only to have the GP scoff at it and left me blowing in the wind......

i made up my mind along long time ago that it doesn't matter that i don't have a name for what i have experienced i still have to live with it so i made my peace with it knowing every year i was getting worst...and am happy

has anyone else had this kind of thing happen to them if so i would like to hear your story.

thank you for reading this

[Paul_Howard Partner LUPUS UK]

Hi Vansa,

I'm sorry to hear that you had such an ordeal getting a diagnosis and you have received such appalling care from your GP. I'm glad that you saw a rheumatologist that was very helpful. Have you been started on any treatment? Do you have a follow-up appointment lined up?

Have you lodged complaints about the way you have been treated? If you need help with this, you should take a look at the NHS Complaints Advocacy Service's website at nhscomplaintsadvocacy.org/

If you need any information about lupus I would be happy to send you one of our free packs. Just send me a private message or email [e-mail] with your name and address.

[paula1969]

Hi vanca im so sorry to hear how you have been treated. I am being treated for lichen planus i have had rashes for 4 years and been on methatrexate for 2 years now i believe this should go in a matter of months and light therapy helps but i still av rash and i am sesitive to light i think i av lupus as i have fatigue so much pain dry mouth ect but liver and kidneys fine so even though lupus stated 4 years ago its never mention and im waiting for bone scans now never seen rheumatologist x

[Lucieb01]

Hi vansa my gp when writing to rhummie put forward to him that i am self diagnosing what a shock i got when rhemmie read the letter to me .

[vansa]

thank you for reply s i have a backbone now lol i will not be treated like that again ever i have decided to fight them with knowledge whats the worst that can happen they already made me feel worthless a waste of space they can lable me all they want i dont care any more seriously......if i had to give any one advice about this knowledge learn how to read your own lad reports objectively if you are a worrier then this is not the path you must not take