Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Progress and Frustration

Hi,

Last week was the "everyone in the family ill week", I spent everyday apart from Sunday at the Dr.s or hospital waiting.

I finally started physio at a really good hospital and we are still feeling the ground but at least the lady is going gentle. But I've had 2 painful weeks after the tests and exercises. I'm not doing much more than I have been anyway.

My rhemmy tried to explain that stress causes pain or exaggerates it. So either I'm not in pain or they are wrong I know which one I tend to believe.

The PT is for adhesions in and around the brachial plexus not for lower back etc.......my pain meds which have enabled me to sleep or have a break from persistent nagging pain are about to be cut and replaced by panadol......hahahah have to start self medicating again or I have to take NSAIDs.....they still do not believe me when I tell them what 2 days on those does let alone a week.

I guess 2 months or so on preddy has left me a bit tired and grumpy or is it because I have a feeling of pending "being left high and dry" by the medical profession again.

Let me see, how many times has this happened, I give in I do not have enough fingers.

Sorry to be a bore, hurt, angry, but at least the people at home are being supportive now.

School holidays are here again so the next 2 weeks is on the beach with the kids. I hoping for a nice run if PT does n't spoil it.

Have a good weekend all

Davo "Today the bitter person"

Not a bitter person at all..just being honest and expressin' your feelings as best you can. With a disease like this it gets quite frustrating and its good to come here and vent and get things off our minds.

Sorry to hear that you are in so much pain. I'm in the midst of some nasty upper back flare that was gone for awhile. Its come back with a vengeance and I had to sit down last night and remind myself that I was being way TOO grumpy and needed to unwind a bit. Took some time to myself and reminded myself that I would make it through this hump like I've done all the others....one painful step at a time. Just never soon enough it seems. Hope the phsio continues to help you as well. PT left me sore for the first couple of weeks even when they were being gentle. It took some time to adjust.

Hope you feel better soon...and glad that your family is being supportive. Thats always so nice to hear. Enjoy your time on the beach!

take care !


Buggy

Hi Davo,
Sorry to hear you are having such a bad time of it. At least it is nice and hot in Sydney at the moment - and not humid! Hopefully it will stay that way for you to enjoy the beach with the kids.

Which hospital are you going to for PT? I used to go to RNSH and they were pretty good, or at least the therapist I saw was.

Glad your family, at least, is being supportive. It's so hard if they are not. And there are too many rheumy's with bad 'bedside manners' and no ears to listen with out there, aren't there!

Fingers crossed you can getout for that run.

Regards,
Elaine

Hey Dave, sorry to hear you're in a painful period right now. Everyone in the family being ill can't have been helping at all.

"My rhemmy tried to explain that stress causes pain or exaggerates it. So either I'm not in pain or they are wrong I know which one I tend to believe."

If I'm understanding your take on this, it sounds like you are pissed at your rheumy for saying this. If I'm wrong just ignore me, OK? But your rheumy is right, stress does make our pain worse and can cause it. Doesn't mean that you aren't in pain, but it does mean that we feel worse during times of stress. You were in pain to start with, and with the meds not working, new PT exacerbating things, the whole fam damily being ill and probably a few other things, your pain levels have escalated. It's understandable.

I guess what I'm trying to say is, while you have reason to be angry with regard to your meds, don't reject everything your rheumy is trying to tell you. And if that's not what you're doing, I apologize in advance for sticking my nose in. It's just that I've been grappling with the whole stress causing/exacerbating pain thing the last little while myself (and that's a new thread in and of itself). So, maybe I'm seeing something where it isn't.

I do hope you get some relief soon, tho. Nobody deserves to feel horrible and feel not listened to.

Many hugs,

Kat

Davo
Sounds like you are going through some torture in PT..Adhesions are
just a fancy word for scar tissue..There are sports medicine doctors
who claim to be able to get rid of these adhesions from injury or past
surgery..Takes enough pressure to tear the tissue apart...Just from what
I've read,sounds very painfull..Hopefully the doc won't cut down on your
pain meds till after you get through PT.. Not sure if stress
causes pain,but if you have pain, stress makes it less bearable...

If self medication helps reduce stress,go for it!!!! Good Luck!!!

David

Hi,

Thanks, everyone......neck cracked and the pain subsided within an hour.......

I'm picking up ther kids form schhol so I'll post soon

David