An intro from Australia

[Guest guest]

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.

[Guest guest]

Kit -

I'm not familiar with the health system in Australia - Is it socialized

medicine? Do you have to go to the doctor assigned, no matter what care

level you are receiving (or NOT receiving, as in your case)?

If you are allowed to choose your own physicians - Then get away from your

current doctor immediately. It may take time, I don't know, but you keep

going, getting references from anywhere and everywhere, until you find a

physician who will give you the relief you need.

There is absolutely no excuse for not receiving pain meds when you're in

pain. Out of all the studies I've seen it has always been the pain

medications, such as the MS Contin you mention (which I take), which gives

the most relief. A pain medication is NOT addictive when you are in pain

and the meds are necessary. If - please god - you, I, all of us, reach a

place where we no longer need the meds we will have no problem giving them up.

If you are unable to go to another doctor you are going to have to start

demanding your doctor give you the help you need. Call him/her twenty-four

hours a day, 7 days a week, 52 weeks of the year until he can't stand it

anymore and HAS to give in! Bombard him with photocopies of research which

shows the efficacy of pain meds, send him testimonials from others in your

situation who have been given their lives back through the use of pain

medication. Do whatever it takes to get through to this guy and don't stop

the pressure until you do!

OK, lecture over!

Peggy M.