Looking for something positive

[dalejrfan]

Just some how deleted all I typed for 15 minutes going the short route now.
5 surgeries began 7-6-06 rotator cuff repair, then MUA then staph infection clean up, then 3-14-07 total shoulder repair, 3 months later another staph infection.
This clean out and tendon repair did not go so well. Woke up and from elbow down was numb, swoolen and gross.
Ultrasound done right away found clot due to many surgeries and repetative shoulder streatching. Trans to another hospital, stent put in Plavix for 3 months ASA rest of life. Bad hematoma size of softball pressing on brachial plexus nerves. 1 and 1/2 months later hematoma ping pong ball size, can move wrist up and down, laying down/ no gravity can hold arm straight in the air for a while. Tingling burning pain in forearm and finger tips awful. Neurontin makes me itch and Lyrica feet swell up like baseballs. Will not do oxycontin as went thru horrible withdrawls in March.
Aside from Percocet, Valium and what sleep I can get,
I think I am looking for support, help thru pain and how to make friends understand, I am not the same right now.
Have I found the right place for help or am I just being a baby,
Sorry so long Thanks for reading
Rhonda

[shaunnb]

Hey Rhonda,

im sure i can speak for everyone on the board that you have my support and the support of everyone here.
keep us posted with your recovery, my prayers are with you. dont hold back if you need to talk.

[ptrefam]

Even without all those surgeries, you still wouldn't be a baby!! Wow!! You found the right place. Sorry I don't have any answers for you. Glad you found us. You will find a wealth of knowledge and understanding in the people on these boards.
Sue

[dalejrfan]

Thank you
As I sit here in tears,my fingers hurt
so bad. Burning stinging nobody seems
to understand. I have also been let go from my job, gone over a year. Work related, so no worries about
bills, thank God. I just wish something would work
for the neuo pain. Worried about damage to kidneys from tylenol in the percocet. Just venting. A bad day cuz it is colder i guess.
Rhonda

[swhite1]

Boy howdy did you find the right place Rhonda.
Here we pretty much all speak for ourselves et all. We are all our own biggest crybabies so don't think for a second that you can be a bigger one.
My God you sure have one helluva story though. Take some time and read some of ours. It's an amazing and dark horror tale. Of course there are wonderfully bright and light tales as well. (See Amy's story - hope16 05) and of course Shaunn (see below...or above? How's the shocking coming along mate?)
You say Neurontin made you itch? You're not taking any codeine? I can only vouch for my own 'recipe' most of the time it works but one day I hope to be more like Christopher and med free. Actually more like Amy and Shaunn and have the source of pain eliminated. The meds I take at bedtime are my favorite. I lie asleep for 8 to 10 hours without moving. I am finding the more I force my arm and hand to touch and feel things the less painful they are becoming. I know it's hard but the payoff has to be good.
Because you're latest condition is relatively recent I would not try to do anything but rest, work on your recipe and do most of what the doctors tell you. That is if they are doctors of repute. Being from Illinois as you are I would get right over to the Mayo in Minn. So many successful stories here come from there. I would work on getting an appointment there straight away. I'm pretty sure I'm not making a whole lot of sense, I hardly ever do but from all I've read here that would be the best thing I could tell you.
Besides the fact that I am a long standing and bonafide member of the jr-nation. My email address has been the same for more than a decade sew3fan....
Rhonda chances are anytime day or night you could probably login here and find one of us if you ever want to talk, vent, laugh or cry. Right now it's half past ten a night(North Texas). Shaunn, what time is it there?
You'll find that you have found the best place in all the world and cyberspace.
Feel comfortable and don't hold anything back.
God bless and peace out,
Scott
ps You'll find that UBPN.0rg is a springboard to amazing places. Places you wouldn't imagine. For instance a locator map set up by Christopher, or racinjason has another site dedicated to support and info for tbpi.
Please keep reaching out, we're all here.

[swhite1]

I wish I could come right over and sit with you, share with you and tell you it'll be alright. It kills me to read things like this.

I don't know what I'm talking about. Somebody please stop me? Take away my laptop or something for cryin out loud!... Stop the tylenol and percocet. You'll destroy your liver.
You obviously need a more direct delivery like morphine, hydrocodone and or oxycodone. Sure they're all bad but you need to know the difference between them and your tolerances. Don't take my word for it but I think it goes like this:
Neuro Pain
Muscle Pain
Bone Pain and
God knows what else but I know these three.
Maybe you should give Neurontin another chance. I'm pretty sure large quantities are req'd like 1300mg x 3 a day.
I take Soma 2 times a day to help with the muscle spasm
and hydrocodone and methadone for bones and all else.
....I think that's the break down??? If I'm wrong someone please correct me?
I count on Carolyn, jennyb, Wendy Lee and Christopher's opinions, suggestions, etc. also Amy and Shaunn contribute to my betterment(?). I know I'm forgetting someone important too.
Scott
Janelle54, sorry but I knew it someone important...
and Sue


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[ipeverywhere]

I’ll give you some different and certainly non-medical educated advise.

While Tylenol and Percocet will destroy your liver the pain itself does other damage and may actually be more damaging.

After living with this for seven years the worst part is certainly the pain. Mine has gotten but better but it is constantly there. Some days it’s just the nagging of “hay! I’m damaged! Pay attention!” which I get through ok. Other days it’s a constant trip to the couch to lay down and turn-off. For those days I’ll take Tylenol, Advil, sometimes both, whatever works.

Pain in the human body causes blood pressure to rise. It causes stress. It causes emotional breakdown. It causes a whole handful of things that are unhealthy just because you can’t be healthy and happy with pain all the time. I’ll take damaging my liver over living depressed. Seriously it’s not worth it and it’s something to think about.

It’s certainly worth talking to a pain management specialist to find something that works for you. Know the risks and be smart about what you are taking but take something when you need to. For example when I’m having a bad day and start back on the Tylenol I don’t drink (damage your liver with one substance at a time is my motto). It’s far better then living with the pain and as people can attest to here it does get better over the years. Do what you can now to get to those years.

[dalejrfan]

I think the pain is bad enough to continue
percocet,but today, I am just seeing if the Valium will help. Does not hurt as much when sleeping, right?
As soon as insurance company approves, I will have another MRI and an EMG. The MRI end of July, right after the stent placement, just showed pressure, no avulsion. So I am praying still true. I do E-stim 2 times a day. Plus do isometric shoulder exercises 3 times
a day.
Thanks so much I am praying for you all too

[lizzyb]

Doesn't anyone here ever try not taking ANY painkillers at all?

From my experience, I never felt better or more pain free than when I finally gave up the pk's after 7 years of taking them and getting no real relief. All I did get was a whole load of serious side effects that were threatening to ruin my life.

I take absolutley nothing now, not even aspirin, and the pain levels are way way down, so much so that most days, I hardly notice anything except when writing or talking about pain. ;0)

It's worth thinking about. There is an alternative to pk's (which mostly don't work anyway), just don't do what I did first time and stop them suddenly...you have to wean off them slowly, over a matter of months.

Have a think about it people...many have given them up and feel great about it.

Lizzyb


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[herff94]

My injury is 20 years old. Just about 4 years ago I thought I'd try meds for my pain. Living up North the pain increases with the seasons changing. One day its 65 here and today its 90! I tried Nuerotin and it was NOT for me. I was a zombie. I decided if I went that long without I can continue with out it. I do have days that I cry in pain but keeping busy and not thinking about really helps. I just couldn't take 6-8 pill a day and live a normal life.
If I cover my arm, just with a sweater it seems to feel better. The back of my arm always has a chill.
Kath in Chicago