Sis....no...the stomach is not an issue right now....I know what to be aware of to prevent it from reaching the extreme it did before...
Speaking of....if you're stomaches starting already....get with docs to find a solution that includes pain relief, Sis..I know there's ways.

I'v just always known that pain relief doesn't mean absence of pain...and thought this might be as good as it gets.

Then, last time I saw my immunologist...I said something about worrying about the time coming when tolerance for meds would override the meds....we hadn't even talked about my pain 'levels or my lifestyle...or lack-of-lifestyle.

He said that that was not a concern....that I was undermedicated....and that I should not have to be living the way I have been.......all from just seeing and talking with me.

That's what got me thinking I could ztillbe having more of a life.

Shoot...as things are now....I don't even have the ability to get to all the Med care I need.

I guess I've been working on accepting the way things are...when I should have been at least trying to know if more is possible.

Sorry for rambling.

Hugs....jc

jan, that is a great question. i'm at the point where i am just trying to breathe and you've seen me on here joking. same meds different days. i read the posts. hippy's stood out. we should be able to get more out of life. i'm hoping to get an epidural soon, so i can have more functional days. i can't think straight half the time on the meds i take which are pretty mild as things go. there has not been enough study on CP b/c even though it was given a name in the 1700's, some MDs wrote it off to mental issues.
we see the people here with MS, RSD, and so many other things that arent' related, but we see the same MDs and are given the same meds. we are just the guinea pigs hopefully to make others' lives more tolerable. there was a movie on TCM today about a nurse who worked during the polio epidemic who had a higher cure rate than all MDs. based on a real woman. we need more people like that than these fearful, safe MDs. let me crawl off the soapbox.

jc...I did the same thing for 12 years...I literally laid in bed and on a good day dragged self in agony to couch...and I had accepted it because I gave up hope but now that I have some mobility and I realize all that was lost and will be lost I cannot accept this without at least trying to get PM even though I am scared as hell due to intestinal problems...I know there must be ways like you said for me to safely get relief but most docs don't know how and I am always at the mercy of their ignorance.

serenity...I know you suffer greatly yet you are so upbeat and you keep trying to do all you can do...you are admired...hope you breathe easier.

JC

We should want more and expect more as we want a quality of life. The thing is sometimes more meds will do the opposite effect we are wanting it to do and sometimes it does help you just need to find that balance I know for me the more meds I took the more zombie med head I became and the more bed bound I became, of course not everyone has this reaction but some do so just a note to keep that in mind.

It all depends on what you are on and what you want to increase to and then find something to help that balance like maybe PT or massage to help aid in helping you feel better. I recently added a muscle relaxer to the mix and it has helped alot especially at night which I only take it as it does make me a bit sleepy and not what I want during the day.

I went to the doctors today and I am in a middle of a flare right now with trying to get everything done for this baby shower and spent some time going over some exercises to help reduce some pain in upper back and hoping that helps some.

Thank you all so much.

Manny....Sad to say....I come by the fuzzy brain naturally...I seem to tolerate meds pretty well in that department so far.
I hear ya on the moving thing......the less you move....the less you move :-) :-) :-)

Those who are in the same boat....thank you for letting me know I'm not alone.

Those who are more active....thank you for showing that there is a chance of more.

Hugs n luv to al.....jc..

its absolutely ok to want more than to just breath well.....you are an amazing woman dealing with so much..yes...ask for more meds..!!!!!!

you shouyld be able to move around more...love ya

My PM explained I would always have some degree of pain & I would learn to live with it. I in return told him I want some quality of life & would learn to accept living with some level of pain.

Its just my opinion but I would share what your other doctor is saying.
I think we should be able to get out of bed & function to some degree.
We will never be out there playing sports of course but we should be able to make some memories other then what our bedroom or couches look like.

I stayed on the lowest dosages as long as I could. When I started to loose quality I spoke up. I also took my husband in to verify what he saw.

Of course we have to trade the side effects for relief, which I'm willing to do. My PMs nurse's know I'm stubborn & won't always give up what easily.
I simply tell them I know the day will come but I'll do what I can til I can't do so anymore.

All recommendations from other doctors or the pharmacist I shared with my PM. He retired so I hope his partner is as willing to listen as he was.

With one doctor stating your pain is not managed enough you may get your doctors attention.
Better coming from another doctor then just the patient.
At one point after surgery I spent so much time in my room I could not bring myself to go in there other then bedtime. I want it re-done so if I end up back in there I have something different to look at & I'm not kidding.
I wish you the best,
Sammy