Hey! Chronic Pain Patients- Fight Back!


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!


Aunt Agatha’s Traveling Pains- The NERVE of those NERVES! Part 1

Here’s my story.  Maybe you will find something of use in it.  I hope so.  My point is there IS SOMETHING you can do to suffer LESS.  And that’s what it’s all about.  Quality of Life.

I’m going to talk about my mononeuritis multiplex, carpal, tarpal, ulnar, peroneal and radial neuropathy.  I’m going to mention & comment on my multiple cranial neuropathies, trigeminal neuralgia, bells palsy, occipital neuralgia, geniculate neuralgia and temporal arteritis.  I’ll be mentioning radiculopathies from trapped nerves.

I’m an experienced nerve damage sufferer.  I have systemic lupus with inflammation in blood vessels and nerves that cause entrapments.  I have osteoarthritis (doesn’t everyone lol) and have had radiculopathies that doubled me over. I have diabetes (controlled) and USED TO HAVE diabetic neuropathy.  That for the most part is GONE (or has morphed into nerve entrapments)  And most recently I was dx’d with reactive arthritis that causes nerve related symptoms like recurring sacroillitis and sciatica.


Ok-I’ve posted blogs about nerves before.  Nerves are the bane of my existence.  Nerve & Muscle entrapments ache.  Extremity nerve damage is burning, freezing and vibrating.  Radiculopathies double you over. But Zappers?  They relentlessly smack you over & over like a yardstick being pulled back.  Zappers also come in the form of paper-cut type pain.  Like an knife slicing into your most delicate areas…between the toes.  It grates on you.  It keeps you up at night.  It tires you out.  It is mean spirited nasty nerve pain and in my case it comes in flares and sometimes it lasts for days.

I’ve dealt with nerve pain for 23 years. They started at age 32 after gestational diabetes-back then (I’m 53 I think, lol) it was extremity pain.  Feet mostly.  Felt for years like I had a motor running in my feet, like a phone vibrating..and that motor would and could rev up at will causing burning and freezing pain.  And zappers.  Don’t forget the zappers. Like lightning down the lower leg to the foot…. but that said, those zappers were much milder to the ones I have now.  Ah…those were the days.  lol.  With excellent diabetic control I was able to “grow out” of diabetic neuropathy.  I haven’t experienced it almost at all in the last ten years.  So ya hear that all you with diabetic neuropathy?  There’s tons of hope!  There’s great reasons to control your blood sugar!  It makes a huge difference!  Back then docs put on me on all the go-to meds.  I tried neurontin, dilantin, lyrica, elavil, cymbalta, tegretol, tramadol, lidocaine patches and narcotic pain medication.  So I KNOW nerve meds.  My humble opinion is that it’s safe and easier for docs to prescribe non narcotics, they WILL.  If it isn’t working for you, get another doctor, try another combo, seek a pain mgmt specialist who can offer you procedures and medication.  There’s help.  RUN FOR IT!  Procedures for diabetic neuropathy?  I’ve had a chiropractor, acupuncture, tens machines, lidocaine patches (wrapped in em, lol) and was even offered a hyperbolic chamber.  Diabetic neuropathy is stubborn.  I used to sit on the edge of the bathtub and stick my feet under burning hot water.  It felt better than the nerve pain.


But for nerve entrapments-I’ve had success with cortisone shots, epidurals, and radiofrequency ablations.  I also have connective tissue issues-plantar fasciitis-and a very smart pain doc saved my life and gave me back my mobility with two little cortisone shots right into the tissue on the bottom of my feet.  It was a miracle to me!  Not all docs, especially GP’s are aware of this- so get yourself a doc who is.  Shop around!  I’ve been able to put off some nerve entrapment release surgeries by cortisone shots too.  So don’t give up.  There’s real HELP for you if your suffering from carpal, tarpal, ulnar, etc.


For radiculopathies- in my case they were in my shoulder/neck and caused by osteoarthritis, damaged herniated discs pressing against nerves and closing up the space for the nerves.  Eventually I had an anterior bilateral dissectomy and fusion using adult stem cells for disc material.  I’ve been extremely happy with the results!  Before that though the pain was excruciating.  I used to lay my neck on a burning hot heating pad..because THAT pain was better than the radiculopathy pain.  So I’m aware of how bad a pinched nerve can be!  I did have a great neuro who took one look at me cowered over in searing pain, ran out of the room then came back in with a cortisone shot-and right then and there gave it to me- wow it helped.  Good for him.  What a guy!  (no kidding)  I still get radio frequency ablations to kill the nerves in my cervical spine (before and after the surgery) and they last about 8 to 10 months!  So again, ASK your physicians to refer you to a pain management specialist who does procedures or to an orthopedic specialist, or neurologist for the help you need.  You don’t have to suffer!  (as much, anyway)


And all that leads me to now- Diagnosed with systemic lupus 2010.  Multiple nerve entrapments-carpal, tarpal, cranial nerve issues, etc.  But the “Bane of My Existence”- (besides the TN ‘Trigeminal Neuralgia’-which is horrifying all by itself-there’s a reason they call it ‘The Suicide Disease’)..the worst pain now are a couple Zappers that elude the specialists- one smacking pain (like your hitting the top of my left foot with a belt) and another Zapping pain like your giving me a paper cut over and over on the side of my 3rd toe right foot.  (& there is a nerve condition called Morton’s Neuroma-& this is a common place for it to be- but in my case it is not Morton’s)…I manage entrapments mainly with regular cortisone shots-they are helpful & I’ve managed to avoid a bunch of surgeries, so that’s good.

So here’s the part in the story you stop and say…”OH ME TOO” and “(I KNOW EXACTLY WHICH NERVES ARE THE PROBLEM”.  If not, well ok.  Thanks anyway…you can keep reading if you want, ha.

Problem Area ONE: The slicing pain on the side of the 3rd toe.  The pain flared up about every 4 weeks and lasted for days.  I couldn’t sleep, concentrate or stand it!  My orthopedic surgeon did 2 nerve release surgeries on the foot (median nerve) he clipped both sides.  The pain remained.  (Grrrrr)  I was desperate.  We decided the best course of action was to take the stupid toe.  That oughta do it!  Wrong.  I had my 4th toe amputated all the way up.  It’s better now, I get the nerve flare ups there less often and they are less intense but they are STILL THERE!  What kind of a monster is this nerve anyway!!!!!!  Btw-I use lidocaine patches (do they help? Eh…not really) & cortisone shots- which do nothing but ANGER the nerve.  Last and only time I had one there it put me into misery for a week.

Problem Area TWO:  Top of Left Foot smacking pain that feels like someone’s got a ruler and they are relentlessly smacking me with it at exactly timed intervals.  Whoever is doing this, STOP IT!  IT HURTS!  I put lidocaine patches on it, exercise the leg and foot, put it in all sorts of crazy positions…run it under hot water…smack it myself, poke it, rub it, hold it down, apply pressure, you name it.  I’m convinced it’s got some type of force field around it though.  There’s no permeating it’s existence.

On the personal side- (as if I haven’t already told you more about my nerves than probably anyone ever has)…I’ve had doctors that have told me there’s nothing they can do.  I had one tell me she wished there was something she could do – while I was slumped over in severe pinched nerve pain.  And my point is: THERE WAS something she could do.  She could’ve sent me to a pain mgmt doc who does procedures, she could have suggested an orthopedic surgeon or a neurologist.  You’d think it was a no brainer- but she didn’t.  She sent me away in horrific pain with a couple of pain pills.  So do NOT ASSUME there is nothing you can do for your nerve pain.  THERE IS always something you can do to make it a little better.

More to come on cranial neuropathies.  This is gonna take awhile!  LOL


Lupus Pals – All about LUPUS & Support

Short music video about LUPUS, understanding lupus, support for lupus and info about SLE.