I'm glad you are restarting the IVIG and I hope it works for you. Maybe the extra Percocet will take the edge off and give you a break until they can gt the IVIG rescheduled to a sooner date.

Please keep us posted!!

Hi Hopeful

I experience that same million bees sensation you describe, constantly. For the most part it's extremely unpleasant but just bareable. Sometimes however, it's as though the bees unrelenting stings just push me over the edge, driving me crazy. During those times the pain seems to rise. Whether or not there is actually more pain, or whether it just feels that way due to my being 'over it' is hard to tell. I just know that I get angry at the medical world for not having found better pain relief.

In this day and age surely nobody with access to medical care should be expected to live in constant pain. And that is precisely what it is, and its unacceptable! If I'm not angry I'm feeling all sorry for myself.

During these times I often reach for an extra Tramadol twice daily for a few days to re-boost my pain relief, then taper down to normal. I also stay away from those little extra triggers that I can usually get away with, but that just might be making matters worse while I'm in such a vulnerable state. Example sugar, stressful people, work if necessary, nightshade vegies, spicy foods, etc. I give my body the best fighting chance. Often that works, sometimes not, but I always try.

I also find this tends to happen when my hormones are out of whack.

Perhaps just knowing the ER has access to the super pain relievers. Knowing people are there trying to help, listening to your plight, monitoring you, etc. would give a level of relief. I know it would for me. I'd feel somewhat safer. So, please do seek help there if you need.

And for the record, my opinion is that tolerating an 8 - 9 level of pain on regular basis is much braver, stronger, than I could imagine for myself. I cry when it gets close to those higher numbers.

So my rookie advice is to be super diligent with diet and rest, no stresses. Try focussing on something else. I sometimes find myself forgetting the pain momentarily during a good TV show, only to remember when the commercials come on. So find something interesting to focus on if you can.

Hoping your frustrating pain settles soon. It's enough to drive you nuts, I know!

Warm hugs,
Debbie.

Just an update. My pain hasn't gotten much better. However, I did have an IVIG treatment yesterday. They always make me feel like I have a war going on in my body for a few days.

I am worried about having to take my pain meds everyday. I swore I would never get to the point that I would take opiates. For those of you who take them please don't be insulted. I am personally afraid. I had a sister with severe RA who took them and became addicted. I'm afraid of the genetic thing. My dad was a drinker as was my grandfather.

Lately, I just can't do without it. They are the only thing that eases my pain. I'm hoping that once the war from the IVIG is over my pain will subside.

It's so difficult to be going along so good ( I was walking everyday and lifting light weights) and then be slammed with severe pain and be unable to do anything but lay down.

I think I'm just feeling like a waste because all I do is take my pain meds and lay around.
Say a prayer please that the IVIG works.

Ohhh I understand that 'feel like a waste' feeling, very well. It makes you feel as though your a liability. I feel this way quite often, so you are not alone there.

I understand your reluctance to take opiates. Reading your words, it does seems that medication provides significant improvement in quality of life. Walking and exercising is a long way from laying around feeling like a waste. It seems opiates provide improvement in your physical and emotional well being. As you know, all that stress that pain brings, has a terrible toll on your body and mind. Being in a state of pain is doing you harm.

You are very strong willed. Your avoidance of opiates proves it, you are very strong. You can control it, and not let it get control of you.

If you need to use them to live a quality of life you deserve, then promise yourself to stay in control. Let your Doctor know of your concerns re: addiction, if you haven't already, so that he/she can help keep on eye on things.

I've read many times on these forums of people who avoided medication for as long as possible, and then when they finally gave in, their life changed so much that they wish they had of started on the drugs sooner. I think that is why I didn't hesitate. That, and the fact I'm a complete chicken!

Anyways, I believe you are capable of enduring life without opiates. Not many could, myself included. I rely on them just to live a relatively normal life.

I admire your strength and commitment.

Check out my post on the Massive Pain Flare Up thread. These are non-narcotic suggestions. May be of some help.


Gerry

Thanks Debbie. I appreciate the encouragement. I did just take the medication at the time I should today. It brings my pain level down to about a 7. Beats not even being able to give it a number. Praying for a break from the pain. I'm going to take the meds every 6 hours for a few days. Thanks again.

Gerry I'm not sure how to do that without going through every thread listed. Is there a way?

Massive Pain Flare Up...

hopeful, the post Gerry made is at the bottom of that thread.

hope that helps.

Thanks a lot Lara! I did get to look at it.