Guest guest Posted August 7, 2012 Report Share Posted August 7, 2012 > Message: 2 > Date: Mon, 4 May 1998 18:15:22 +1000 > > Subject: An intro from Australia > > Hello everyone, > > I was writing an introduction, but then I hit the wrong button and I lost > about 10 minutes worth of typing ... I simply can't start it all again, but > for now I'll just say that, my name is Kit, I'm 31 and I live in Tasmania, > Australia with my partner, Jon. (Much later, I was able to add the > following): > > I have had CFS/FM for four years and have been in continual high level pain > since December 1996 when I had a bad relapse as a result of getting amoebic > colitis in rural southern India. > > My continual pain is joints and muscles, especially back and neck and hips > and shoulders ... chest muscles (ie. when breathing). I also have frequent > headaches, migraines, finger joint pain, eye pain (photophobia) and jaw > pain etc etc etc ... too much to list. > > I'm still struggling with grief and denial and finding it very difficult to > cope. I tried going back to work in July 97 but couldn't keep going and > had to quit last December .... looking back I don't know how I ever kept > going for that long. > > I'm on Zoloft too ... 150 mg daily and it helps with the depression a bit, > but not the pain. I tried Amitriptyline, but reacted badly to it. Now I'm > on Doxepin for sleep (only very low dose - 50 mg) which helps a bit, and I > add Murelax (Oxazepam) when it's really bad. I have nightmares and > drenching night sweats every night. Melatonin didn't work because > apparently my system just doesn't know how to use it ... so it doesn't work > just to add more in tablet form. > > I'm on Epilim (Sodium Valproate - anticonvulsant) to help " turn down the > volume " on my hyper everything nervous system. But my doctors have taken > me off pain meds because they feel that my pain is the result of a neural > reset to a hypervigilant state and pain meds will prevent spontaneous > recovery (feels more like spontaneous combustion to me). (Was using > Codeine but had started getting rebound headaches from it). > > I can take Endone (Oxycodone) when the pain is at its " jump off the balcony > NOW " worst so that helps a little. > > I've been given a prognosis of 2 - 5 years ... but I think they're only > guessing. I've been going to the Pain Clinic psychologist here, but she > hasn't been able to help that much as I was already practiced in the use of > meditation and relaxation techniques. > > This is supposed to be looking for a long term solution - and I've been > told that blocking the pain with medication only helps short term, but > doesn't teach the body to re-establish normal functioning. I don't know > what I think of this really ... on my bad days it feels like a rotten idea. > > When I sit, I'm in pain > When I stand, I'm in pain > When I walk, I'm in pain > (Can't run) > When I lie down, I'm in pain > When I move, I'm in pain > When I breath, I'm in pain > When I live, I'm in pain > > > I know some other friends with CFS/FM who's doctors have put them on MS > Contin (sustained release 12 hour morphine) or Methadone, but my doctors > seem to be opio-phobic so _I_ have to suffer ... they (my doctors) don't > live with this day after day after day ... how can they ever understand > what I'm going through and what cruel torture my life has become. > > Sorry for raving ... and it all sounds a bit melodramatic now that I read > over it, but I won't change it, because, at least it's honest, and I may as > well start out as I mean to continue. > > Thanks for listening, > Kit. > > Quote Link to comment Share on other sites More sharing options...
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