hey guys, recently my pain could be so intolerable, whatever position i tried and pain all the same. I almost lost my mind (feels likek it anyway). Nevermind that. probably i got only half of that fatal pain and I couldn't sleep a single minute for the entire night. I keep getting diarrhea becacuse of the many drugs in high dosages). no blood (yet.) I try to be creative in dealing with my pain, but at times I simply running out of ideas. And for you that has work or in school, how your boss and colleagues react to your uselessness while in pain? One of my colleague said yesterday how come I could be in pain while I look normal. I just chunk super strong dosages of NSAIDs (and with codein). so i was temporily OK.

That's a tough question, Agnuscrucis. Dealing with the surges in pain. It seems to me that everyone develops their own personal strategies depending on their condition and their environment. I have personally heard that old line many times, about looking so good and normal even though I'm a miserable wreck inside. Even from people who should know better. But really all I can do is try to smile & not be offended by their ignorance. I can't say that I blame them for not understanding. We're all ignorant at some time about something.

As for temporarily relieving the pain, that's something I've been experimenting with for nearly five years now. Some things work sometimes, but I've yet to find anything that's dependable. I'm in pain 24 hours a day, and I can hide it pretty well. I do know that it's easier to prevent the peaks than it is to control them once they've set in. So at the very first sign I go to work to lessen the coming impact.

I hope you start feeling better soon. These things definitely come and go in cycles, so maybe you'll have a "good" cycle beginning soon.

Take care,
Idealist

I have been in severe pain for years without a doc figuring out what will work for me. Fibro, spinal problems, arthritis, osteoperosis, polyneuropathy, etc. Pain level is usually between 7 (good times, 8 (usually), and 9 (bad times). I have been carrying it for so long that it doesn't show very much. Infact, when I hurt the most, I have had friends come up to me and
say how well rested I look. Could it be that when some of us are at our worst, our eyes and mouths slack?

Thank God, I just went to a rheumy who has started a new mix of meds on me, as well as a whole slew of blood tests on me. The meds are not doing much more, but I expect that she will increase them next month.

Don't have a tub any more, only have a shower (Boo-hoo!), but it use to be that I would take a very hot bath and just soak until the heat would take all of the energy out of me...and I would sleep. It helped a lot.

Hi

I can totally understand - I'm 20 and I have RSD full body so severe neuropathic pain 24/ hr full body. The meds help abit but I am still at a high 9/10 all the time - I haven't slept for more than 2 hours at a time since I developed this as EVERYTHING hurts...lying down/ sitting etc. (Due to the RSD I am ina wheelchair etc). However, I am struggling on with uni because I know that it will be worth it. Anyway. I HATE the fact that because i'm very good at hiding it (well.// I've had it 4 1/2 years - so after a while you realise it hurts more to get upset than to try and carry on... that people are like "oh. I didn't realise you're in pain" (Erm.... why do I take about 40 tablets and syringes a day?? for fun? ) although I don't want people to treat me differently because of it....somedays it would be nice for people to recognise how dreadful the pain is to cope with all day for years at a time!

Haven't really found a way of maanging it - just try and pace through it and get on with it... also pain drs/ other drs/ trust me to "adjust" med doses for severe B/T pain. Also use short acting meds before I know that I'm going to be doing something really painful - such as before being dressed/ transferred to try and stop the B/T being as awful! also, i try not to totally exhaust myself - so I only go out one night a week (well... I'm a uni student - my mates are out every night - wheras I stay in and try and rest) and try to be selective about what i take on (yeh rightl....)

good luck!
rosie xxxxxx