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Back Problems Message Board

Back Problems Board Index

Hello ~
Just stumbled on this site, as I was searching the web for some answers, as I am in more pain than I have ever been in my life any feel like I'm at the end of my rope. Some background info: I was rear-ended in a car accident 26 years ago, which began my life with pain. Diagnosed with fibrositis (as it was called then, now fibromyalgia) at the University of California, San Francisco, in 1985. Years filled with chronic widespread pain, depression, severe mid and low back pain, sciatica, nerve pain down arms and legs, arthritis, osteopenia, severe chronic fatigue, daily headaches, sjogrens, TMJ, carpal tunnel, and always searching for help.

I have done a full gamut of therapies over the years, including psychotherapies, medication after medication, acupuncture, trigger-point injections, cervical denervations, craniosacral therapy, TENs unit, $1000 microcurrent unit, 20 years of swimming in a warm pools, massage, walking, PT, yoga/pilates, chiropractors, naturopath, psychologists, hypnotherapy, and biofeedback, meditation, a library of self-help books to obtain pain relief.

It's mind blowing to think of all the money I've spent in seeking help. I don't take vacations, beyond a once a year 1.5 hour trip to the ocean. I pay for doctor visits, procedures, or medications. The denervations alone, probably cost me over $1200 a year. I don't make a lot of money as a hospital unit coordinator and attempt to keep up payments on my home. Hopefully, I won't need any major repairs, as I've had to use that money for my own (attempted) repair!

I have been on Cymbalta many years (no pain relief on it, but has been a good antidepressant in the past), and Neurontin many years (20% nerve pain relief - can't take more than small doses as it makes me even more fatigued and doesn't help more at higher doses). For sleep, Trazadone has been the best for me to get to sleep, though after several hours I have to take a second pill to get thru the nite. (Doesn't help as much now, with the increased level of pain.)

Last week, my doc added Fentanyl patch of 25 mg., and two 5 mg. of Oxycodone prn for breakthru pain. Once again, I'm at the place I was before, two years ago, though in more pain than ever. Not enough relief with that amount of Fentanyl and even adding two Oxycodone doesn't begin to fill in the gap with the level of pain I have. Is it too much to ask to have enough pain relief throughout my body without feeling so drugged and fatigued to do it?

Two years back I had tried the patches and found that the lower dose only helped mininally and when increased, if left me feeling too drugged and dizzy. I have to drive 1000 feet up a hill to work and would feel like I was about to go over the side. During that time, other meds were tried that made me feel short of breath and sick,not to mention, more depressed.

I was given a trial of Suboxone then, first became very dizzy, literally drooling, and had difficulty breathing. So much for that.

Then, I tried a drug trial using Xyrem (date rape drug). Very scary stuff - first I had a sense of a complete block in pain which I hadn't experienced prior to the accident in 1985 in my life, it was like my body was paralyzed. I couldn't have gotten out of the bed if I had wanted to for a period of time. Then came some difficulty in breathing, feeling like I had run a marathon and was trying to catch my breath with some chest pressure. I was determined to try and make it work and tried one more night of it to see if the breathing issue would resolve. Now if that wasn't crazy, but I got to the point of desperation.

I applied for STD at this time, two years ago, and was denied after waiting more than a month for an answer. I had been paying into the STD account with my employer for 20 years at that time. I had reached one of the lowest points in my life and felt like I didn't have the strength to continue to work in severe pain. With the STD denial, I went back to work, as was afraid of losing my house. (Divorced, single parent here). I continued using most of my vacation in 4 hour blocks off, as able (12 hour shifts) and laying down on breaks. Sick time, of course, was used due to pain, though I would try and not use it if I was able. I've had intermittent FMLA for many years, but it wasn't enough. One day at a time became my mantra and I tried to distract myself and not think about how much pain I was living with. There really haven't been good and bad days for me, the past many,many years. Each day, I would be in the same level of pain and it really became a mental game to try and win the battle and do what I needed to do for myself for that day.

Other meds I have used/tried: Large amounts of Tylenol, Herbal tincture of tumeric and ginger,along with other herbals recommended for fibro. Vitamins, Large amounts of Mag Citrate, Antidepressants such as Prozac, Celexa, Welbutrin, Paxil, Lamictal, Amitryptiline, pain meds incuding Butrans patches, Oxycodone, Tramadol, Lidocaine patches, and probably a half dozen of different NSAIDs and XR meds such as Oxycontin (before my system coudn't process any of either due to RNY many years ago). Also did a trial of two compounded meds - HCG drops (think pregnant womens urine,yuck!) and Naltrexone. The past several years, most of my time off I have had to spend in bed, or get to a warm pool if I can drag myself there. Depression has become more of an issue, as the pain has become worse and my life has been reduced to what I've called a "postage stamp".

Almost four years ago, I was rear-ended in a car accident that has caused my overall body pain to go from moderate to severe, along with a burning "hot poker" type pain in my neck that radiates down my arm and causes carpal tunnel symptoms. (I did do the electrical nerve testing on that hand and it did show moderate damage.) It was referred to as cervical spondylolisthesis. It makes it challenging to sleep as it hurts to sleep on my side (pillow between my legs for back support), especially the favored right side with the chonic neck pain following the accident.

I headed to a chiropractor, acupuncturist, PT, and then finally to a pain management clinic. That clinic has done 6 cervical denervations on my neck the past 3.5 years. The first five of them worked pretty well for the neck, for about 4 to 5 months, then the severe pain would return and set off a chain of fibro pain.

I had the last one done two weeks ago, and following it, I have experienced the worst pain I have ever had throughout my body. I have always had long standing upper and lower back pain, with sciatica and nerve pain through all the extremities, and chronic daily headaches. With all the back pain I've had over the years, I thought was the fibro. What made this different though, is the pain is so much more severe - I can't stand, sit, or lay down without pain throughout my upper and lower back. My legs severely ache - feels like a deep ache in my bones, different than the sciatica I've had. Deep hip and thigh pain, especially my right (replacement) hip. My feet feel kind of tingle, and numbness/tingling in my toes. I headed to a warm swimming pool to just stretch and ended up with more pain. Way too much pain in back to walk for any length of time. I went back to both my regular provider and the pain management provider, along with a new appt with psychologist begging for help, as I was becoming very depressed with thoughts of suicide on a level I had never experienced before. Couldn't walk into a room without thinking of how to off myself. I have always thought of myself as a fighter and have made plenty of lemonade in my life, considering the level of pain I've dealt with over the years. I've worked the past 22 years as a hospital unit coordinator, throwing myself into my job, to try and block out my mind to how much pain I was having in the 12 hour shift. I just can't do it anymore. The extent of the back pain I now have, has thrown me over the edge, not to mention my life was so limited before this happened. Overall, I don't think i would attempt suicide. In my teens, I watched my mother slowly die of cancer at the age of 43. She fought until the end. The thought of leaving my two sons with that legacy, is more than I could comprehend. I don't want to die, but at the same time I feel like I can't live this way any more.

The pain doc was going to try a lumbar denervation this coming week, but I suggested if I could have a full spinal MRI done first, before doing any more denervations, especially since my pain is off the charts. Lucky for me, she didn't hesitate to order it. She gave me Fentanyl patches and Oxycodone for breakthrough pain. (Due to GI issues, I can't take any NSAIDS or extended release medications.) Not much help from what she prescribed, as still have the deep aching in my neck, severe mid, low back, and hip pain, and a deep aching down my legs, different than the usual nerve pain I have. I only sleep for 2 hours at a time, wake up and try and get back to sleep.

I had the MRI done this past Thursday and she called me Friday evening with the reading. She admitted that she didn't really know what to make of the report and is referring me to a neurosurgeon. So here I am, having to wait several weeks to see him, can't work like this, and have applied for STD. I dread applying, especially as I was denied two years ago. At the time, I felt I didn't have the energy to fight them, though I've regretted that decision ever since. I've always had intermittent FMLA coverage, that for the most part, I haven't used, unless I was having surgery. (Five surgeries in the past 2.5 years, but that's another story!) My boss says that I had better apply for STD - it sounded to me like she wouldn't necessarily wait if there was a lapse in obtaining it. Great, I've just used up my sick and vacation time being off this past 12 days. I had been too optimistic that things would have resolved to some level for me to be able to work, but there's no way I could go in there and sit for an hour, much less 12 hours. The worst part is that I have always done more than required and have helped her with any project she had, as it would take my mind off the pain at some level. She knew she could count on me and would pile me up with projects, instead of even attempting to get help from my co-workers. I would hurt so bad sometimes, but somehow would get through the day.

The past time i applied for STD two years ago, the insurance company took over a month to "review" the case and letter after letter would state that they had to evaluate it not only from an STD standpoint, but also as a potential LTD. Dragging their feet, of course, to see how long I could hold out, without money. I am hoping this time won't be the same, with the new info and solid results of back issues, though I don't know if the amount of pain I am experiencing is reflected in this MRI. Since fibro can't be identified in a test, it wasn't enough for them to have the 25+ year history of chronic pain documentation. Also, I had two brain scans the past two years due to daily chronic headaches. Both showed "brain atrophy at an accelerated rate for age", along with multiple holes (Can't remember exactly how they phrased the holes). The Neurologist had no answer as to why that would occur, except for maybe this was the result of being in a chronic pain state for so many years.

Attached is a modified version of the reading on the MRI, for those who haven't fallen asleep by now, reading all of the above. (Gotta keep humor!)

MRI Cervical, Thoracic, and Lumbar Spine, without contrast

Cervical: Normal, though a C7-T1 perineural cyst seen.

Thoracic: There are multiple endplate irregularities seen throughout, with mild disk space narrowing. Endplate irregularities seen from T4-5 through T10-11.

At T4-5, there is T2 dark signal protruding into the anterior CSF space and nearly contacting the anterior cord. Central canal is patent at this level.

A left paracentral focal protrusion is noted at T6-7 contacting the anterior cord. A focal central protrusion at T7-8 attenuates the anterior CSF space and indents the anterior cord without abnormal signal. A right paracentral protrusion at T8-9 attenuates the right lateral anterior thecal space and indents the cord, though no abnormal cord signal.

Lumbar spine: Normal alignment and disc spaces maintained. The conus terminates at L1-2 without cord signal abnormality. Mild multifocal degenerative disk disease seen.

L1-L4: Normal

L4-L5: Broad-based disk bulge with effacement of the anterior thecal. Sac results show mild spinal stenosis and mild neuroforaminal narrowing.

L5-S1: Minimal right sided disc bulge is seen. An incompletely evaluated mass is seen adjacent to the uterus and may be a fibroid.

Impression: Multilevel degenerative changes as outlined, worse within the thoracic cord where there are multiple disks contacting the cord. No abnormal cord signal, however.

Maybe all these years my pain was more due to my back and less with fibro. Or perhaps my back problems have been more painful due to fibro. Thoughts of this are appreciated, as to any of the above sounds like the neurosurgeon would want be to do more PT (Ouch!) or recommend surgery and what type. My head is spinning right now, me always trying to figure things out.

Thanks for any insight and similar experience you could offer and what worked best for you.

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