||[Jun. 18th, 2012|06:21 pm]
I just found out that apparently I have a diagnosis that nobody bothered to fucking tell me about, cos hey, it's not like I, the patient need to know that I have Chronic Fatigue syndrome, do I?|
I wouldn't know if it wasn't for the fact that it was printed on my discharge notes under the list of co-morbid conditions. Thanks for telling me doctors!
Oh and on top of that, the pain clinic just told me they won't take me because my condition isn't being managed, did I mention the specialist dumped me on them after saying he couldn't do anything at all for me? So yeah, hello from medical limbo.
So yeah, no treatment for me. >.>
Oh and yay for even more fun, I have my interview for actually getting some help from other sources tomorrow including a full medical. In my last one I dislocated my shoulder somehow and didn't realise for a day, only reason I realised was when I leaned against the wall later and heard the unmistakeable sound of it going back and the pain disappeared. I also nearly fell flat on my face at one point during it.
In short, much suckiness has occurred.
WTF?! Much evileness has abounded as well. Here, have a loverly large Clue-by-Five, since the Clue-by-Four doesn't seem to have been working. Geez Louise!!
in case mskat's clue-by-five doesnt work, try the Cosmic Cluebat.
good gods! *hugs cause internet hugs arent triggering and never ever hurt physically* and MANY well wishes for the interviewing, and yes chronic fatigue REALLY sucks.
::nods vigorously::: I just got diagnosed with CFS about two months ago when my pain clinic referred me to a new rheumotologist who specializes in fibro/CFS/gout. (that last part kinda wigs me) Let me know if the Teenage Mutant Ninja Kitty Horde needs to go after the pain specialists. Mine treated me for several years with no hu-hu and they're still handling my pain meds. Geez Louise!! BTW going off the....[time passes... fibro fog rises....] Lamictal! and taking the ritalin helped the pain and the fatigue some. More so the former than the latter. We're upping the topomax for the bp which is off the charts (can you say a gazillion bead necklaces?? plus what it cost for me to buy materials??).
Our pain clinic apparently isn't allowed to dispense pain meds, they can tell us about them, but not give us any. My doctor tried me on tramadol then gave up when it was discovered I'm the one in 250 who is immune to it. (I'm also immune to morphine sadly, all it does is make me very sick)
I'm trying to get a referal to the specialist EDS unit at London college hospital, the local health board keep refusing though, which is kind of funny since they were happy enough to waste the money to send me to the ENT department in the same hospital to run tests that had already been run, wasting both my time and energy.
::rolls eyes:: Good Lord have mercy!! Why call it a pain clinic then? Oh wait, the Vandy pain clinic does procedures.
Will it help to make a stink in the media? I'm in the US so I don't have any experience with the NHS. Best of luck!!
Edited at 2012-06-20 03:45 pm (UTC)
They mostly do CBT and exercise and advice.
Not really, the government are trying to privatise the NHS and I'm busier with the work we're all doing to try and keep them from dumping the deficit cost on disabled and impoverished people while giving millionaires tax breaks.
They're trying to kick hundreds of thousands off DLA (which will result in many disabled people losing jobs because they won't be able to pay for the added costs of disability) cut benefits to those who either cannot work or who cannot find work, and generally being asshole.
::nods:: IOW totally useless to many.
Damn... sounds like here.
Again, sounds like here. Best of luck!
I just found out that apparently I have a diagnosis that nobody bothered to fucking tell me about, cos hey, it's not like I, the patient need to know that I have Chronic Fatigue syndrome, do I?
Wow, that's awful. I'm sorry that happened to you!
idk if this is helpful or not, but i have a friend with cfs who said that this book (written by someone with cfs/me): http://www.severeme.info/buy-the-book.html
has some really good tips about living with and dealing with cfs since so many doctors think it's psychological, or don't have any clue how to treat it.