Topic : Living with Chronic Pain

I became agorophobic the fear of leaving my house after my long battle with getting any diagnosis for my pain issues, I finally went to a guy at u of m who wrote a book on the subject and somehow he managed to get me in for an appointment he doesn't see patients unless are part of his clinical trials, I was amazed, he said i could be the poster child for fibromyalgia and chronic fatigue.

That being said I guess I just felt safe in my own home where I didn't have to deal with the outside world and their opinions about my health I haven't driven in three years because of the narcotics i'm on, I also have what they think is lupus.

I'm not telling you to become agorophobic because that is the worst thing you could do, just ignore people its frankly none of thier business, why you have a handicapped plate, you have one that should be the end of it.

As for explaining this disease to other people send them links to informative websites or even buy some books that give detailed information. I hope I was some help.......

reply if you need to vent some more I'll be here.

*hugs* andi

So I'm now writing down everything I eat as well as my pain in hopes this new doctor can help me somehow. She's highly convinced I'm not getting enough to eat....since I'm 5'5" and 105lbs... *Sigh* anyways....

 

Today I was cuddled up on the couch with Jacob (guy I'm dating) and Angelica (little foster child his mom has that I was babysitting) and I kept having to get up because I couldn't control my twitching....it was driving me crazy. Every few minutes I was jumping up because I was twitching and I couldn't stop but when I got up it got a bit better....*Sigh* I'm sure he thinks I'm totally nuts and don't like him...not that he didn't before...but yeah. I'm a bit mad....

 

Becca

XOXO

I live with chronic pain  daily, I've got a crippling disc diease in my lower back , it make life really hard fer me, I'm on 2 different pain pills but it doesn't always kill the pain. I'm also on a muscule relaxer to help ease some of the pain. I sit  to long and I stiffen up so bad it make it hard to walk,  I spend most of the time in bed cause it hurts to bad to get up. i just wish I could go one day without pain but it will never happen,  I also have acid reflex so bad that it's eating away at my stomach. I have bone spurs growing on my shoulders so that causes more pain. I don't think I'm a human anymore, I'm just a big walking body of pain.  a sad colt

 

dear sad colt --

 

it is good to 'see' you again.  the pain you are in sounds overwhelming.

 

do you have access to a doctor or clinic that specializes in pain management?  they usually have some tricks up their sleeves.  in my case, i need to keep moving, no matter what. 

 

has anyone given you advice about gerd?  i have it also -- but there is a great (and expensive) medication -- aciphex -- that has almost eliminated it for me.  don't eat late at night, don't eat in bed, etc!

 

i've been thinking of you and am glad you're back --

prof

Colt,

Have you tried fish-oil pills for your GERD?  There's a woman in my clotting support group who swears by them and she has really terrible digestive issues- Chron's, GERD, etc... They didn't help me but  a number of other people wrote back and thanked her because they felt so much better.  Just a little thought.

 

And I completely hear you about not feeling human anymore.  As the pain and diagnosises pile up some days it starts to feel like they're all that exist - but I'm in here and you're in there - hiding and hurting maybe, but in there still.  Prof was right about a pain doc, if you don't have one.  My pain doc is the only way I manage, without him I wouldn't be able to walk at all or even get out of bed. 

 

Thinking of you,

Karin

Greetings all!  I've been using the diary function and "met" Prof over there and thought I'd check it out over here. 

Ah, chronic pain... Yep, got it.  Had my first knee-reconstruct at 19, at the end of my freshman year in college.  Turns out the surgery was "experimental" but we weren't told.  It failed in 6 months but Dr refused to fix it for another 2.5 years until I couldn't walk anymore... reconstruct 2 worked better but not great.  After surgery 1 I was in constant pain and surgery 2 didn't fix it, just got rid of the wheelchair and cane.  Surgery 2 lasted 6 years... reconstruct #3 was a big one, and again was just to get back to walking.  Pain is the same, constant, sharp, aching, burning, stabbing, etc... Left knee is totally bone-on-bone with large parts of my quadricep severed, large staples holding patellar tendon in place and multple screws trying to hold inner quad in "better" place.  3 miniscus repairs, 3 joint revisions (shaving off bone and creating a "new" socket for knee cap to rest in)... Anyway, after the first surgery there was no getting back to "good", just lesser degrees of bad.  Which led to... After surgery number 1 I was frequently ill, with different things, seemingly unrelated.  But I went from being perfectly healthy at 19 to constantly ill, bronchitis, a pre-cancerous eye cyst (was actually a clot), gall bladder disease and removal, and on and on.  Actually they were all related, caused by a genetic clotting disease and although the clot was missed on ultrasound I had clotted after surgery #1 and the way this disease, Factor V Leiden, works is like a light switch - 1 clot and it's on forever.  We just didn't know for nearly 10 years why I was so sick.

 

After surgery #3, November '03 at 28, I had a suspected DVT (deep vein thrombosis, a blood clot in a deep vein), but nothing showed up on ultrasound.  Shortly after I started having trouble breathing.  Lucked out with an unsupervised resident in the ER, was given benadryl and released.  7 days later I quit breathing.  Turns out the clot in my leg (the one that was missed) was sending tons of mini clots up into my lungs, a condition known as pulmonary embolisms, or PEs.  I had about 36 clots in my lungs and both lungs had shut down almost entirely.  The upper portion of my left lung was keeping me alive.  I'd had two suspected heart attacks and some severe oxygen deprivation, although we didn't know it then.  I was given a 3% chance of surviving 24 hours, less of surviving a week.  Got lucky, really lucky, and made it out of ICU in 7 days to go home.  4 days later, while on blood thinners, I grew a new DVT and blew another large PE.  Moving forward, lots and lots of chest pain, issues with memory, concentration, diagnosed post-traumatic stress disorder, big depression and anxiety issues (caused by oxygen deprivation)... Finally got back on my feet in early 05.  In March '06, due to a Dr screw up, my blood got too thick and I threw another PE - this one was really big and damaged my heart going through which is not going to heal, may need a valve transplant at some point.  Then in early May 06 another PE and another one in June 06.  Changed meds to an injectible that's much stronger, but much much more dangerous.  Have had 3 clots since then in my legs and arms - none in lungs or brain luckily.  Now I'm kind of a ticking time bomb.  Nothing that's supposed to work does, the med I'm on is weight based and I'm on 150% of what my dose should be just to stay vaguely stable. 

 

Pain again... back on topic  : )  Legs are the big issue, congenitally bad.  No one will touch them now because of clotting.  Surgeons agree that when I can't walk anymore they'll do a one-time replacement, even though I'm too young, just to avoid other surgeries.  Right leg is medically bad, and hurts, but not like left.  Oh, and limped so much my left hip sits out of the socket and hurts a lot.

 

On top of all that I have either RA or Lupus - tests have narrowed down to those two but can't quite determine which.  So my hands, toes, elbows etc...swell and won't move and hurt like a son of a gun!  Like today, been awake for hours but haven't moved out of bed, don't have the nerve yet : ) 

 

Anyway, sorry for the small novella, I compressed as much as I could and still make sense (or tried at least). 

I hope y'all are having a "good" Monday, with few flare-ups and as much peace as possible.

 

Take care,

Karin

Deb,

I've had a handicapped plaque (hang in the window kind) off and on since 19 and got lots of glares and mutters over the years and a few years ago I decided I'd had enough.  I was parking in the hospital lot to go in for surgery and a woman walking past muttered, "That's interesting" and kept going.  That was it!!!

I turned around and said, "If you have an issue with my handicapped plates then say it to my face.  I'll be happy to show you the scars from my knee surgeries or discuss my issues with you.  But you have no damn right to mutter things at me and I am SICK of people like you."

At which point the totally stunned woman said, "Um,no, my trunk is open and it was closed when I went into the hospital, and that's interesting.  I wasn't talking to you at all.  Sorry."  Then she looked at me like I belonged in a monkey house and hurried to her car.

Well, sure enough, her trunk was open!!  I murmured a quick apology and walked as quickly as my bad little legs could carry me.  Since then I just ignore people and if I'm in a really bad mood I look 'em in the eye and raise an eyebrow.  People are idiots about the parking thing, I can only walk a small amount, even on good days, so parking far away means I can't even go get milk.  Just ignore 'em when you can, glare when you can't, and avoid doing what I did - which was become the idiot for that day!

 

Take care,

Karin

 

PS - Have you tried my husband's favorite answer "If you give me your legs I'll give you my parking spot?"  That one works too : )

Well, boy howdy do I have health news to catch you up on.

The back
Last week I got the MRI results. Found out nothing more than I knew before. That I have an odd shaped vertebra, birth defect, that's throwing everything off kilter and creates a weak spot in my back. This, compounded by the fact that I somewhere along the line tore ligaments and tendons over that area, and scar tissue has grown in it's place, which is far less reslient than ligaments and tendons.

So, the end result is that I am just going to have to learn to live with it, this will always be a weak area and prone to reinjury. PT on May 1st, and not to come back unless I have more problems.

The Stomach
Despite the fact that I'm in less pain lately with my back, I'm still having a hell of a lot of nausea and heartburn and vomiting. Pepid AC and Pepcid Complete didn't do squat. So, after a very bad weekend, I made the decision to call the doctor's office (gastroenterologist) first thing this morning and talk to the nurse.

She told me if I get worse, to go to the ER. But she put a call through to my doctor, who wasn't in the building this morning. About 11:30 I got a call telling me that he wants to see me today and to be there no later than 1:20, that he was disturbed by my symptoms.

So, I called Keeper's work and I told them it was a medical emergency and I needed him home to take me to the doctor's. I hated to do that, but I was scared. He wasn't too happy, but said I did the right thing, and he got permission to leave to take me to my appointment.

On weigh in, I found out that I'd lost 30 lbs in 3 months without trying, just because I've been so sick! EEP! I am now down to 116 lbs. I may be short, but I'd look and feel a lot better if I was about 10 lbs. heavier as I don't have a small frame, and the doctor agrees. And that's way too much weight lost unintentionally, and way too fast!

He ended up sending me home with beaucoup samples of both Asacol (for my Crohn's) and Prevacid and instructions how to take both, and also made an appointment for me to get an Upper Endoscopy on Friday, didn't want to wait until next week.

If it's not one thing, it's another. And I'm hoping on hope that this incident today didn't set me back with Keeper. Here's hoping, that the meds start doing me some good and that I they don't find anything major in my stomach.

Blessed be,

Morgan

 I can sympathize with your pain, only someone who has can understand what you're going through. You're so young to have to deal with this, stay hopeful and know that my prayers are with you.

 

XOXOX

*BIG HUGS*

Dorie aka velvetbuny

 

Morgan,

Do you still have your gall bladder?  If you do, have your Drs ultra-sounded it yet?  The symptoms of a bad gall bladder are pain, nausea, vomiting, and heart-burn like symptoms.  I treated myself with heartburn meds for 9 months until I got very sick from a stuck gall stone.  If they haven't checked your gall bladder you might consider asking them to do so.

 

Take care,

Karin

 

PS - When my gall bladder was bad one thing that always helped was a hot shower/bath.  I'd often find myself sitting in the shower at 2am trying to get the pain to go away, it might be something to try!