So, at this point in the story, I have major GI and eye problems, and now back/groin/leg pain. I just started working again. Lucikly, I found an absolutely great doctor near where I work -- a
physiatrist, which is like an orthopedic doctor, but with more
emphasis on physical therapy and conservative treatements over surgery.
So I started a very long process of trying various diagnostic and therapeutic options with him. I think from the start he was pretty sure this
pain originated in my back (he ruled out spinal stenosis on the very first visit, though). However, an MRI of the lumbar spine didn't
reveal any significant structural explanation. So, once again, I was in
the gray zone, and we began trying one thing after another.
As an overview, here were some of the things we tried for my back/groin/leg pain before all was said and done: 4 lumbar epidurals (each of which involved a trip to a surgery center), 2 thoracic epidurals (two trips to the surgery center), 3 sacroiliac (SI) joint (a joint between your tailbone and pelvis) "blocks" (each a separate trip to the surgery center), acupuncture, chiropractic treatment, 74 physical therapy sessions (you can 
imagine how much time and effort it takes to drive to and undergo 74 PT sessions!), and trigger-point injections, among other things. Here are the diagnostic tests I underwent: a groin/abdomen C-T scan, a lumbar C-T scan, 2 lumbar MRIs, a thoracic MRI, and a lumbar discogram (fluid is injected directly into the discs to pressurize them and determine if the pain can be replicated). And here is the number of diagnoses I fit cleanly: zero.
Ultimately, I was diagnosed with internal disc damage (IDD). In other words, the best possible explanation was that I had an annular tear (the "annulus" of each disc is a strong ring of fibers that surround the soft, jelly-like center [nucleus] of the disc), probably in two discs (L5-S1) and (L5-L4), which was radiating pain to my groin and down my right leg. As I mentioned, the doctor did a discogram to try to nail down the disc-damage theory for my pain. This was one of the most painful experiences of my life. This procedure was done at the hospital, and they gave me anaesthetic and sedating drugs, but not too much because they needed me to feel the pain. Then, using X-ray guidance, they put a needle into each of three discs, injecting fluid (dye) into the discs, which are then later imaged on a C-T scan. The idea is to simulate the pressure that one creates on the discs by bending, moving around, sitting, etc. They also want to see if they can recreate the radicular pain (radiating leg pain). For my lowest disc, even though I was heavily sedated, I remember an explosion of pain in my low back (not my leg) that even the best drugs couldn't filter out. Owwww! The net result of the discogram was mixed -- they were able to generate definite back pain from pressurizing the lowest two discs (the lowest, L5-S1, was the most painful disc), but no leg or groin pain could be recreated.
You'd think low-back (lumbar) pain would be enough pain for most people, but unfortunately not for me. I started developing worse and worse thoracic back pain. The thoracic vertebrae are between the cervical (neck) and lumbar (low-back) vertebrae -- i.e., the mid-back vertebrae. It's amazing how different thoracic pain and lumbar pain can feel. Sometimes the thoracic pain was worse because it was in the middle of my torso and I could feel it more acutely. However, for the most part, lumbar pain is far and away the worst type of pain of all types of pain one can experience. Anyway, for a long while, I tried my best to ignore the thoracic pain because I didn't want to bother my doctor with separate pain, as I figured he would become exasperated... But, as I said, this doctor was great and was very open to the concept of separate thoracic pain, and was willing to treat it separately. He thought it might even be related to my lumbar pain -- sort of a mechanical malfunction of the thoracic vertebrae (i.e., not disc pain) due to my lumbar problems throwing everything else out of whack. The thoracic vertebrae would just "splint up" -- become stuck and not rotate, which is bad because your ribs are attached to them, and it is very painful when a rib becomes immobilized.
Also, there was another strange thing -- the thoracic pain would often increase or decrease while eating. Perhaps this was, in part, because the affected thoracic vertebrae were centered around my LES (the connection of my esophagus to my stomach, where I had previously had the Stretta procedure applied), which was radiating pain outward from the reflux/GERD. The physiatrist couldn't explain this. Neither could the gastroenterologist I was seeing at the time, who happened to be one of the world's leading GI specialists. More of that frustrating "gray zone."
After the discogram test, my doctor felt more confident that disc damage was the cause of my pain, even though pressuring the discs did not cause groin and leg pain, which were really my principal symptoms at the time (although it did cause low-back pain). Still, this showed some correlation -- people with healthy spines should not have pain with a discogram. So, he deemed that the cause of the pain was ill-defined internal disc damage -- those annular tears I mentioned earlier. I say "ill-defined" because there was nothing clinically significant enough on any of my imaging studies that would explain the levels of pain I was experiencing. But, I was surprised to learn that diagnostic imaging for back pain is not always that helpful for anyone. For example, consider that in several studies, researchers have found that a majority of pain-free people who have spinal MRI's -- up to two-thirds in some studies -- have spinal abnormalities, including bulging or protruding discs, herniated discs, and degenerated discs. Thus, generally, there is probably little correlation between possible slight wear-and-tear damage (like in my discs) and pain. So, all we had to go on was that "positive" result in the discogram, and not much else. (The therapeutic epidurals -- shots of cortisone and anaesthetic into my lumbar region -- were only modestly helpful, if at all).
So what do you do if you have back pain, likely tied to discogenic pain, but not strongly correlated? Well, in the absence of a disc bulge or extrusion that can be surgically removed, the typical treatment for severe disc-caused back pain is a "fusion" surgery, which is as draconian as it sounds. In a fusion, vertebrae of your spine are fused together, much like they used to fuse or freeze a malfunctioning hip socket to try to relieve pain, as crazy as that sounds today in a world with artificial hip joints. And, for a case of less-than-clear internal disc damage like mine, my doctor said that no way would he recommend a fusion -- they don't even have a very good success rate for people with failing discs. (Plus, the immobilization of one vertebrae/disc level puts additional stress on the level above it, and often requires another fusion down the road). So, prior to 1997, I would have been stuck. But, it so happens that in that year, a new surgical procedure was introduced that aimed to address exactly my problem -- internal disc damage. The procedure is called an Intradiscal Electrothermal Annuloplasty (an "IDET"). Basically, the doctor, using X-ray guidance, inserts a hollow needle into the painful disc, then inserts a thin heating wire through the needle into the disc, and coils the wire around the outer edge of the nucleus. The wire is then slowly heated to a temperature of around 194 degrees Farenheit for about 15 minutes. The purpose is pretty much the same as the Stretta procedure -- to heat the disc wall and cause it to contract (in this case, hopefully to close up tears), and to ablate (remove) painful nerve endings in the disc.
Well, post-discogram, the IDET seemed like the obvious choice for me, but my doctor stilll wanted to continue to try to treat me conservatively. We tried a couple of those S-I joint blocks I mentioned, injecting cortisone into the S-I joints between the pelvis and the tailbone. (Before the disc-theory of low-back pain originated in 1932, diagnoses of S-I joint syndrome were commonly made, and have gained renewed interest starting in the 1980's). The first S-I joint block provided some brief moments of jaw-dropping relief in my right leg pain (I think because my pelvis was misaligned pretty badly), but the second did nothing. But, around this time, something else far more significant happened -- my low back "blew up" on me. I have no other way to describe what happened. It was like I reverted back to that excruciating pain from the discogram, when the doctor shot fluid into my disc. But, instead of lasting minutes, this pain simply wasn't going away. I could not believe that anything could be this painful. The thing about the lower back is that it forms the base/foundation for all of the leverage and movements of the body. Which is fine, if it doesn't hurt -- you will not have to think about this. But, you will never realize how much you rely on that support and stability until it starts failing or hurting. It is debilitating in ways you can't even imagine until you experience it.
(Side note: the start of this dramatic rise in pain occured two weeks after beginning a course of tetracycline-family drugs, as previously discussed in this section).
The pain was so explosive that, without help, I would have been curled up in the fetal position, unable to function. But, thankfully, I had heavy-duty (narcotic) painkillers available, which I can honestly say allowed me to continue to function and carry on, although still with some pain. When people think about narcotics, they think about addiction and the "high" that narcotics can provide. But, those issues probably apply more to someone who is using them to achieve those ends. For someone like myself, battling debilitating pain, they really don't provide much of a euphoria. In fact, I was lucky if they just brought me up to somewhere near normal, so I could function. And, they could only keep me at "normal" temporarily, as they wore off after 4-6 hours. Thus, it wasn't consistent pain control, but more like a short-lived plateau of tolerability, followed by an increase in pain as each pill wore off, and then a slow decrease of that pain as the next one kicked in. Without the pain relief, I wouldn't have had a snowball's chance in hell of sleeping through a single night.
At this point, I was pretty desperate for the IDET. It was kind of like when I wanted the Stretta -- I was in a lot of pain, the conventional treatments didn't work, the existing surgical option was too drastic, and I didn't have a lot of other options. Thus, after a lot of negotiations back and forth with the insurance company (which originally denied coverage for the IDET because it was "experimental", despite 40,000 of the procedures having been performed), I finally got the procedure approved. At this point, the doctor was on board to do this, as we had exhausted every conservative treatment option available.
The IDET was definitely the most serious surgery I have ever had -- it involved a hospital surgery suite, anaesthesiologist, X-ray technician, and 2-3 doctors/assistants. I think it lasted about an hour, but thankfully, unlike the discogram, this time they could pretty much knock me out. I spent the next two weeks hooked up to a machine that circulated icewater around my lower back, the next two months mostly lying on my back, and the next six months not sitting longer than about 30 minutes at a time. Also, for the next three months, I wore a back brace anytime I was on my feet. I also took a month off of work, and then ended up working part-time for the remaining time I stayed at my job (a little over a year post-IDET).
Recovery was incredibly, frustratingly slow. I don't think I met expectations for post-IDET recovery. I had many ups and downs and, at one point, had to have an emergency lumbar MRI to make sure that one of my IDET-treated discs didn't tear or extrude material, as I was having a huge, inexplicable flare-up in pain. Luckily, everything looked ok -- it was just the story of my illness -- unknown problems putting me squarely in the gray zone. Another example of a strange twist: during that pain flare-up I mentioned, I was given prednisone, a powerful steroid that can calm down almost any amount of inflammation. Yet, with me, it just sent me into a tailspin and made me feel twice as bad. And, here's another strange reaction: during my tumultuous IDET recovery, the doctor tried me on Paxil, not because I was depressed, but because he was trying to calm down hypersensitivity to the pain in my brain. But, the Paxil made my pain ten times worse and made me feel very, very chemically sick. To say I was a frustrating case to myself and my doctors is quite the understatement!
Slowly, my back got somewhat better. (Although, it was a little hard to tell what was improvement from the increased post-surgery pain, and what was true improvement). But, I was not getting better enough for the doctor to call my IDET a full success. In fact, the very quality and distribution of my pain was changing. It went from incredibly acute pain in my low-back, groin, and leg, to soft-tissue pain in my legs and buttocks. It went from pain primarily radiating down one leg and centered in my low back, to a more diffuse and amorphous pain. Still, it was definitely greater on my right side. One particular spot that seemed much worse after the IDET was my right anterior superior iliac spine ("ASIS") (although, it might have been there before, and I just didn't notice it with all of the other pain I was having). The ASIS part of your pelvis is the top bony knob in the front that you can feel -- you can't miss it. That area is the attachment point for a number of muscles and ligaments that come from your leg and hip. To this day, I struggle somewhat with this particular pain spot, but it was particularly bad at the time.
Eventually the doctor was convinced that the "fire" of my problem (discogenic pain) was reduced, and that the equally bothersome muscle pain I was experiencing was simply residual "smoke" from the disc pain and IDET. I couldn't be sure as I didn't feel much better, just... different. So, one day the doctor tried a soft-tissue injection, which is a locally-administered shot that usually combines a short-acting pain-reliever (e.g., lidocaine) and a longer-acting anti-inflammatory (e.g., corticosteroids). He injected it into a spot of incredible tenderness in my hip region that I would come to know as a "trigger point", or a small contraction knot in the muscles that could shoot out pain if pressure was applied to it. He was very excited when the injection provided some quick, mild pain relief in the area where it was administered, as well as radiating warmth and reduced pain into my leg and groin. Because of this result, I heard a new word for the first time from my doctor -- "fibromyalgia." But, this was something I would learn a LOT about going forward as I was ultimately diagnosed with this syndrome by my doctor's rheumatologist partner. And thus began yet another new chapter in my health.
Next up: Welcome to the Fibromyalgia Club: You're the 10th million member!