Lumbar Sacral Extreme Pain for TOO long & hoping CT Scan does finally show something!

Feeling "Crazy" if We don't Find out WHY I am in so much severe pain with my hips down to my knees

This may sound totally insane, BUT in a way I HOPE they DO FIND something on the CT Scan I had yesterday on my lumbar/sacral spine or somewhere there causing this extremely horrible pain. This has been just miserable, and I am so tired of putting up with it. If I stand too long, walk too long, sit too long, driving in a car over an hour is really the worst, and if the weather changes "just a little" I am just in tears. I am NOT saying that I "want to have something wrong with me" (as if sounding morose) I just WANT TO PROVE IN MY OWN MIND AND THE DOCTORS, THAT SOMETHING IS WRONG!!!! NOT THAT I think the doctors don't believe me. I had the right hip injected Monday and the main orthopedic surgeon was so (OVERBOOKED it looked like with NEW patients) although my appt was made 3 weeks ago, he was me briefly then the PA came in and asked if I wanted to "wait on the doctor" to do the injection or if it was okay with me, she could do it, because he was so swamped. I had already been there a couple of hours OVER my appt time.

I had noticed when I walked in about 15 minutes before my appt, there were like 5 or 6 NEW patients (must have been) from what was said they were ALL filling out new patient forms!!!!! Which if I HAD CANCELLED MONDAY on the day of the appt, they would have been peeved at me, but they can put a patient off for hours, and they always have an excuse.. yeah (HE OVERBOOKED TO MANY NEW PATIENTS AT THE SAME TIME ON THE SAME DAY!!!) NEEDLESS TO SAY I had the CT can done yesterday, and I see the Orthopedic surgeon in Dallas on Friday that does my spinal stuff. My Pain doctor ordered the CT for me so he could give me the order and I could have it done here rather than making a trip to Dallas, or going to the Orthopedic surgeon FIRST & he would have wanted the CT anyway, so it would take longer, and I would be out more time, and trips to Dallas.

Anyway, on Monday the PA which I asked her why I had so much pain, with bursitis, and I questioned her about "tendonitis" and other things "that could be inflamed" along with the bursa causing so much pain, for so long... plus more than likely there could be "fluid" in the bursa's (I noticed they started "popping" a few days ago when I walk, and that fluid will make the bursa hurt worse. So, she did give me a better idea what "what maybe going on

I also it dawned on me yesterday, that when I had the last CT Scan which was "special".. I can't recall exactly when it was done, but I had it done at Medical City in Dallas, and it was with dye, but it was a different type of CT Scan... since I can't have an MRI anymore, they did that particular type of CT AND that doctor asked me if I had "back surgery" before. I said well YES, but at the "cervical spine" nowhere near my lumbar spine, and he said it almost looked as if I had a "laminectomy" done on both sides. I am actually "missing" a lamina in the very lowest part of my L-5 part of the spine, where it connects with the S-1..

So, they think I had been born without those. For some reason they never spotted them before, they said it could be now because of aging, and the Lupus/RA and degeneration of the lumbar/sacral spine it is now showing up. So, I have to wonder now since that was I believe about 4 years ago and that report said it was "worse" than the one done about 3 years previously.. so from about 2011, then one in 2015.. now 4 years later 2019... I have to possibly figure that has now gotten bad enough it is causing problems.. All I know is that I don't want to feel "nuts" but find out what the hell is causing so much pain!!!!!!!

PAIN! Pain and More Pain - My Hips, my lower back - I am trying to do everything I can myself at my house but these hips are just bad!!!!

RA? Lupus? Spondylitis? (ankylosing spondylitis) HLA-B27 "genetic marker",  Sjogren's? and everything else to go along with them!!!!


WELL IF MY HIPS AND LOWER BACK WERE NOT BAD ENOUGH, I spent my "EARLY" MORNING (ABOUT 7AM) this morning, having to "weed eat" some of my front lawn. It has gotten so tall, I was in fear to even walk though it... I feared with all this rain, snakes, and I hate those things... so, since for some reason all of a sudden, the guy next door, (that ALWAYS) helped to mow the yard, has not even looked at me, much less spoken, or even mentioned my yard. My back is as bad, but my lawn mower is also broken (the pull rope is broke) and I did find the manual a moment ago, so I may get that fixed. BUT, honestly I am NOT supposed to be "weed eating" or mowing especially... not after all of my surgeries etc... and my back and hips are to where I can't sleep at night, they hurt so badly, My Mom and I went to have blood work done yesterday, and it had to be "fasting" so we went early, and then the other labs that my Rheumy wants done BEFORE I can even think about trying the Zeljanx, was supposed to be done there, they had faxed over the orders over a week ago, and I get in, and guess what NO ORDERS,.. so I got on my phone, called and the woman said she would pull it and fax it immediately. Well, Mom and I both already had the other labs finished and "still no orders"...

SO NOW I will have to go back. I even had the Rheumy office call me yesterday evening and said they had faxed it THREE times... well that is just about how my PCP is... they put things on a "desk" and then it does not get into my chart, and now I have to go all over again, and I am a very difficult stick.. so he got a vein 1st try yesterday.. it would have been the perfect time to get all of the blood for ALL of the labs!!! BUT no orders... so I know I am having that discography done Friday early morning. It is about an hour away, with traffic of course up all the way in almost North Dallas at Medical City Hospital. So, that means my son has to meet me very early, and we will take my Mom's car. His truck is so far off the ground, I have heck getting in it after having anything done like this. So, we have to meet in time at my Mom's to get to Dallas and to Medical City by 7AM Friday Morning... LONG DAY for both of us... because he lives up close to Dallas and has to drive down here, get me then drive me up there... I could go myself, but they will I think put me under "twilight" at least for this procedure, so I won't be able to drive myself home.... I didn't even get but about half of my yard cut down enough, and I had to stop.. the sun was coming up over the trees and I sure as Hell do not need another LUPUS FLARE!!!

So, now my front yard is "half chopped down"... me and the weed eater have heck... it is not all that heavy, but my arms are so weak after surgeries and so on, so they were like "jelly" by the time I got a bit over half of the really tall weed mess down... I am so in a pissy mood... I am so pissed that "someone" else wanted ALL of this, home, lawn, wanted to "remodel" and now who is stuck with it half assed remodeled and now going to have to do as much myself, and then I guess hire the rest out... and I guess someone thinks I am "rolling in the bucks"... NOT!!! REALLY????!!! Plus I am sure just like the injections a few weeks ago this trip Friday will be 250.00 my co-pay... I got to thinking the other day and thought, well, I can power wash the house, and get windows redone, and paint the back bedroom... and paint part of the outside... and then get someone to lay the floors where I need them... bathroom, kitchen and finish out my laundry room.. but I still need my lights and a fan finished as far as the electrical part... they are partially done, but SOMEONE never finished those, nor even "mudding" the bathroom... and I can't do "mud"... I mean sheet rock mudding... lots I can or used to be able to do... but some of this is beyond my body's limits for sure.... so needless to say, I am in a pissed off state of mind, about this entire ordeal... but it will get done one way or the other... because I DON'T GIVE UP...

When the Physicians Allow You to Hurt Like Hell - and play this "hurry up and wait" Ordeal - Intractable Pain....

I did not finish this BEFORE leaving the page yesterday, so everything I wrote after this initial post was lost. I had asked if anyone had one of these "discograms".... and if so was it as bad as what I am reading? It just seems like this is not a test to take lightly. Plus you may end up in worse pain than you already are. I went to my Orthopedic surgeon this week. He was the one that actually put my new right shoulder in and then done my 4 level neck surgery about two years ago. As awesome of a SURGEON AND DOCTOR as he is, he "patient repoire" SUCKS!! He "hates" an educated patient. I had written before that him and I have gotten into it, before he did my neck surgery. I had given him my own thoughts after doing a great deal of research, even on the "reverse shoulder replacement" and he just didn't appreciate "me" a layman, even attempting to let him know my thoughts on the situation. He basically told me I was "stupid".... and later on, after the surgeries were done and MOST OF WHAT I SAID, was TRUE about my situation, he had in his own weird way had to 'APOLOGIZE" for making it sound like I was stupid. I never got a total I am sorry, or apology, but in his own way, he kind of smoothed everything over. Anyway now I've found more information on "sacroiliitis.... that sounds also more like what is going on with me and my very lower back, almost at my tailbone, and then into both hips and traveling at times down to my knees.... I just did some research on it, after a doctor in CA had "tweeted" me about what I posted about my lower back and hip pain... I found out this issue often is looked over, and the doctors "miss" that this is the issue, and blame it on a lumbar spine thing instead. Well, as I've told both doctors now, I feel I have two issues.... maybe my very lowest lumbar vertebra and my S-1 -S-2 have issues.... BUT there is something going on with my hips themselves, or another issue causing the severe hip pain. He had the audacity to tell me that the severe pain I was having in my hips, no way could be caused by bursitis... or the like... which is bull... I KNOW I've had hip bursitis several times and it hurts like hell!!! Now here I sit, in fact I just tried the very "test" this doctor said to try in order to see if this is possibly this sacroiliitis or not. And both sides put me almost in a scream to try and "test" to see if that is the cause. So, now here I am NOT gotten any relief and in fact, I am WORSE TODAY!!! And I don't see my pain doctor until next Thursday. I am in tears with severe pain. It matters not if I sit, stand, walk... right now the sitting is the worst. But, if I go out and walk a bit, then it also hits me like a razor sharp ball of fire into my very low buttocks, and hips, then down the sides of both legs.... I cannot take much more of this crap.... I am almost to the place of intractable pain again..... Why is it, no matter how badly we hurt, it is always this "hurry up and wait" game with physicians????
I've done enough research through out all of my chronic illness and pain issues now for so many years, I could almost be a doctor myself... or a pretty good researcher....

Yet, this is beginning to be the end of how much I can take. I realize ANY of us are in all types of pain. Often we are in such an overload of it, we would do just about any and everything to stop it.

What do you do? We know that going to an ER with "chronic pain' is just about like peeing out of the back of a moving truck bed. We know that most of our physicians, want to do a billion dollars worth of tests, scans, injections, treatments, and all or none may work or not work. I have said over and over again, that no matter where they have ever done "CT Scans", or MRi's, EMG's, EEG's.... all types of nerve tests... blood work. and yes there is some thing that show up. Yet, only when a surgeon FINALLY GOES IN - that is when they see JUST HOW BADLY MY JOINTS ARE SCREWED UP!

I've been told that by several of my physicians over the years. So, again, I will repeat, since it is worth repeating, TESTS DO NOT ALWAYS mean they are TRUE AND CORRECT! Tests are usually as good as the person doing them, and then whomever does the reading of them...

A very good example just happened to me this week. I had a CT can about 4 weeks ago, on my lumbar spine. It did show some problems in my lumbar spine, and although not just HUGE issues, my pain doctor said it could be enough to cause the pain I am having.

I go to my Orthopedic Surgeon this week. He was "supposed" to have a copy of the CT Scan. Somehow, between me going into that building, and seeing him in his office, my CT Scan results suddenly disappeared. I KNOW it was there with the paperwork I brought in. I saw it, and I said it twice or three times... his office somewhere lost it, put it in another chart or something. BUT, He did DO regular X-Rays on my lower lumbar spine and hips. He could tell me MORE by regular X-rays about my lumbar spine, and so forth THAN THE CT SCAN EVEN WAS SHOWING... and He had NOT even seen the scan. So, that just goes to show, with a simple couple of X-rays, a physician that KNOWS what he is looking for, can sometimes find something before ordering other very expensive, more invasive tests! I thought he had been reading the CT Scan. Then he mentioned about possibly having one done. I said well I just had one 4 weeks ago and I brought it in with the rest of that paperwork. Of course NO he had not seen it, but it did see the problems. He began to tell me that due to the extreme amount of pain I was in, there was no way that my hips could cause the pain. I say BULL! When I was this bad before, my hips were injected into the bursa with corticosteroid and it worked, two times at least. 

Anyway, it went on to prove to me, in all honesty, when a proper physician sees some tests such as this plain X-Ray.... they can go by that and what the patient says, rather than order $1,000.00's of dollars worth of tests, that if not read correctly would not show how bad it really was.

So, I have tried just about any and everything to "keep my mind" off the pain... between baking, writing, doing emails, reading and so on... nothing is helping. Here it is Friday afternoon, and I have another week to put up with this mess.....

Could I scream????!!!!! YOU BET I COULD!!!!!!!!!

Onward to both Hips injected and my lower vertebra also injected next week...

YUCK!!! I first of all, have a very nauseated stomach and now am getting a stupid headache. It was almost like a "de-ja-vu" for me just a bit ago. I had this overwhelming feeling that I had been in that exact "space and time" before. Well, I had. Years ago, when my migraines began, it seems I would have these stupid things either on Friday or Saturday night!!! It seemed to never fail, that when Friday came and I was looking forward to either going out to dinner or dancing with friends, next thing you know, I'm headed for the ER with a very severe migraine. Most of the time, nothing would take those away, especially when I got badly nauseated also, but going in for IV fluids, some type of strong pain killer, morphine, back then they used Demerol for that type of pain. Then in a few hours it was home to hopefully keep the stupid thing at bay so I could still have a good weekend. Anyway, when I first got out of bed, my stomach was already very upset, and then the headache began to come on quickly also. And it is FRIDAY! Of course now, I am no longer able to "work" outside my home, so the circumstances are a tiny bit different. Yet, I really NEED TO GET MY MOM'S TAXES DONE!! And the plan was for me to do a few things online, then do her taxes and get that out of my way. So, I took some Promethazine, my meds for pain, etc and am trying to make sure I get my few posts in, and hopefully finish those taxes or at least get the most of them done, so I can go to the sofa for the rest of the day. I can tell this is going to be "one of those bad headaches" and my only option is on the sofa, and to remain still as possible so it will finally go away...

Also, I FINALLY HAVE THE APPOINTMENT NEXT WEEK (Well both of them) one to have both hips injected on Tuesday here by my Orthopedic surgeon. Then I have to go to Dallas next Thursday (have to be there at 7AM) not looking forward to that drive in Dallas at that time of the morning. My pain doctor finally is going to inject both sides of the last vertebra down by my tailbone. He thinks at least a portion of the horrid pain I've been having is coming from there. I have a bulge of a disc there, plus probably a great deal of inflammation which waxes and wanes so some days it hurts much worse than others. But, I feel my hips are still a part of the problem. I had them both injected about this time 2 years ago. That seemed to help, SO I am hoping I can continue to do without hip surgery. Anyway, between the both of them, I am keeping the faith for relief. Plus if those work then we know for sure, where the real problems are coming from.

BUT< what truly SUCKS! Of course Jim can't drive at all, and my Mom could never drive in Dallas at all... she barely gets back and forth from the market, bank and home here in this small town, much less Dallas traffic. Well, they will have to give me a bit of something to put me out or to the place as I used to call it (" don't give a damned medicine in my IV)... I know this routine like the back of my hand. Plus I know they "think" my husband will be there with me, to possibly drive me home. Well, he could "help" some if I needed help... BUT usually with that light of meds to put you asleep for a 10 minute procedure, you are wide awake, drinking juice or something before you go anyway. So, that is a drawback of having Jim not be able to drive, plus Mom can't and no one I know here close enough that could drive me back and forth to Dallas on a weekday... So, we are going to have to be a bit "creative" in making sure they don't see me being the one driving myself home. I know I won't have a problem at all. As I said, you really don't go out for long, and that med wears off quickly especially since I've had to go through this several times.... so that is my "hectic" schedule for next week, along with possible RAIN and Thunderstorms for the next 10 DAYS!!!


#HIPNeckSteroidinjections