- Pain

[Guest guest]

,

I'm always overwhelmed when I read your history of problems. It's amazing

what strength you have! I wish you weren't suffering so - now or before.

Even though the RA meds may reduce inflammation and slow the progression of

the disease, in many cases, pain may have to be treated separately.

What meds are you currently on for pain? There are so many effective

medications out there for pain that I'm sure there is something that can

help you. You need a doctor who understands the nature of pain and who is

willing to treat it appropriately. Good communication between you and your

physician is a must. Does you doctor know how much pain you are in now? If

your doctor does know, and isn't helping you, you need to go to someone else

who will. Please don't live with the pain. Many of us are too willing to

accept and live with terrible, chronic pain.

We talked about pain and pain meds a lot over the last few weeks, but you

may have missed many of the discussions because of your surgery and your

difficult recovery. It's all there in the archives, but I would be happy to

post whatever you need to know.

----- Original Message -----

From: " " <dat2352@...>

< >

Sent: Sunday, February 25, 2001 10:23 AM

Subject: Re: [ ] Welcome, Wanda!

> Wanda,

> I read your note and said yes, yes quite a few times. I guess mine

started

> in my hands too but at the time we were convinced that it was carpal

tunnel

> syndrome. Thank God, my hands are all right now. They do act up once in

> awhile but if I wear the braces at night it helps. My left hip is badly

> damaged according to my rheumetologist but my knees are the worst. Going

> from sitting to standing is really hard. Tried to explain to my husband

> that it is purposefully causing pain to myself. Other joints have come

and

> gone but the knees remain. This all started 2 1/2 years ago. I am 48

now.

> I do not work outside the home. The last 6 years have been a medical hell

> form me-starting with a car accident in January of 94-head-on hi by drunk

> driver- myself and 3 of my 5 children hurt. Mine was a severe laceration

on

> my leg, total body black and blue and internal bleeding. Surgery of

course,

> followed in a year by a hernia, then repair, then recurrent, then repair,

> then recurrent, then repair which brings us to Sept, 1996-after a hernia

> repair while in the hospital, I had an intercranial bleed followed by

coma,

> a hole drilled in my head and then a craniotomy. The next year is a blur

of

> rehab, physical therapy, occupational therapy, speech therapy. But I came

> back. Then Summer of '98, I started with the carpal tunnel which made

sense

> because I milked goats. I had severe pain in my wrists, wore the braces

all

> the time, went to see a specialist, had cortisone shots. It got better

but

> then my knees and hips started hurting. Went to see a rheumetologist and

got

> a positive RA factor blood test. Then began the experimentation- NSAI,

SAI,

> Asulfadine-major allergic reaction, Arava-no change but my hair fell out,

> Methatrexate-no change, Enbrel-worked like a miracle for a while but lost

> effectiveness. Then in Spring of '99 had an abscess along the incision

line

> of the last hernia repair. The surgeon was conservative, removed abscess,

> treated with 6 weeks IV antibiotics and hoped the gortex wasn't

compromised.

> She believed that I had probably had a low level infection for a long time

> which my body handled but with the immunesuppresent drugs for the RA, it

> stopped handling it. Stayed on Enbrel till Fall of 2000, then switched to

> remicade-which works at about the same level as the enbrel. Inflammation

> and fatigue less but pain still there a lot. Spring of 2000 had another

> abscess which burst and upon CT scan-the gortex repair was no longer

> attached. So June, 2000, Dr. Briggs, surgeon, took out the gortex,

sutured

> what is left of my abdominal wall back up and we waited. Well the

> inevitable happened again. Hernia. Now it was repaired on 1/18 but is

> healing very slowly-still draining. She used the ultimate method and I

just

> need to keep prying. As far as the RA- I get a remicade infusion first

week

> in March, can't take the methatrexate because it is immune suppressant.

> During these years, also have been diagnosed with depression (wonder

why!),

> acid reflux, anemia, sleep apnea, hypothyroidism, blood clotting disorder,

> severe asthma.

> Having fun yet?

> My question to all of you is that I think that I am at the end of the line

> on medication but still have a lot of pain. Are you treated separately

for

> the pain and if so what help?

> Lately I'm also back to having chronic fatigue-keep hoping that it's post

> surgery and not the RA again.

> On a positive note-I've touched death 3 times in the last 6 years and come

> away-respiratory arrest, brain hemorrhage, most recently while in the

> hospital-my blood pressure and hematocrit crashed and I had 6 units of

blood

> transfused and 3 days in ICU.

>

> Temple