My little-ole story really isn’t much. There’s lots of pain patients just like me!
What matters is that my quality of life has improved thanks to a combo of meds & procedures. and I’m not alone! Our meds are working! None of us expects to be pain-free. But managing is power!
Since I was recently asked my personal story- I’ll do my best not to bore you’all and share it here too.
I’m a lupus patient with multiple nerve entrapments from inflammed blood vessels and nerves-which leads to recurring uveitis, scleritis (painful eye issues), trigeminal neuralgia (cranial neuropathy), multiple peripheral neuropathies (ulnar, radial, medial & pereanol) that flare up..also degenerative discs, narrowed cervical spine issues, a slipped vertebrae at S1 L2 that causes sacroillitis, severe plantar fasciitis, extreme photosensitivity from lupus (UV causes hives and rashes-the sun is not my friend) osteoarthritis, tons of mouth sores & nose sores from lupus, and I’m sure I’m forgetting a few.
Oh yeah, brain fog too from cns issues from lupus, but nothing major. Like my father used to tell me, “Well how is everything ELSE?” LOL- “Fine” I’d say! Actually I’d have to say my achilles heel is actually my heel- I’ve had 3 nerve surgeries and a toe amputation to try and stop the horrid pain in my right foot- feels like someone is lighting a match under my toe (not a neuroma-but a pereanal nerve entrapment-who knew! lol) and like someone is cracking me on top of the foot with a ruler. Relentlessly. Sometimes for days. Only relief is strong pain medication and hot water beating down on it.
That all said (and it was a whopper, I know) you get the gist of it. I am not afraid to tell anyone that I take 23 meds a day (mostly for lupus) but that it includes the max of tramadol (2 50mg every 4 hours-8 daily) and that it pretty much works in the background-(I don’t even know it’s there!) and I take opiates 4 times a day for short term pain. I’d like to add that I have taken this same medication, same dosages for almost TWENTY years without an increase or a need for one & that I worked a full time job THANKS TO THE MEDS for most of those years.
I’ve worked with many doctors, and felt the sting of the stigma that comes with being a chronic pain patient. Unruly, judgemental pharmacists & techs who have stamped VOID on my prescriptions to pain docs that welcomed me to their office by saying, “if you’re here to get something to feel good you might as well walk out that office door right now”.
I’ve signed pain contracts, unsigned pain contracts, had surgeries and procedures and I completely understand if you are going through a hard time finding a pain management doctor who truly understands you! You gotta kiss a lot of doctor frogs before you find a prince! Don’t be afraid to find one that you have the right fit with!
My honest opinion- pain doctors are like night and day. Some are sympathetic, some empathetic, some not so much and some down right mean spirited and can treat you like a criminal or addict looking for a fix.
Lucky for me though I’ve had an anesthesiologist pain doc who gives me epidurals, radio-frequency ablations, cortisone shots and has prescribed me the pain meds that work for me for over TEN YEARS now! He’s given me quality of life and I am grateful for his expertise. He’s offered me procedures I didn’t even know existed! Thanks to him I am mobile. I had plantar fasciitis so severe I couldn’t walk without sleeping in an orthotic PF boot all night just to get a few hours to be able to be on my feet., and low and behold my favorite doc who was treating me for cervical spine issues said, “Hey, I can FIX THAT!” WHAT? And he DID! Regular cortisone shots right into the connective tissue on the bottom of my feet was a miracle cure! NO kidding! Goes to show that you never know what one doctor knows that another one doesn’t!
A good doctor can make all the difference. I can’t say that enough to people who ask me. If you aren’t getting results with your physician, talk to him or her and if that doesn’t work- FIRE THEM and find another.
Chronic pain patients who are able to function thanks to medications aren’t who the DEA and FDA should be worried about. (why make the honest ones suffer?).. go out and catch the drug dealers of the illegal drugs and make sure teens are informed about the danger of taking drugs. Leave the chronic pain patients alone, especially the ones who are functioning thanks to the medications that give them quality in their lives. Most studies I’ve read say that true chronic pain patients do not become addicted.
Kudos to all you do to get our voices heard!
If you want to help out-here’s a petition shared with me from JGF Advocacy Project: CHRONIC PAIN PETITION-SIGN HERE!
And here’s a link to JGF Advocacy Group on fb: Pain Is Not Addiction FB Site!
Sincerely, JJ
WHAT’S YOUR STORY? Plz share in comments!
JuJu's LUPUS 