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Timianne 07-23-2012 01:29 AM

New here- Question: Fibro vs. back pain? MRI report attached (LONG)Thoughts Pls?
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.

teteri66 07-23-2012 08:59 AM

Re: New here- Question: Fibro vs. back pain? MRI report attached (LONG)Thoughts Pls?
Welcome to the board. I'm glad you found us, and hope that you can find some help here. Is this the first time in all these years that you are seeing a spine specialist? By this, I am referring to a fellowship-trained orthopedic spine surgeon or a neurosurgeon whose practice is limited to the neck and back....

First, a spondylolisthesis is a situation where one vertera slides over the top of the adjacent vertera. it is most common in the lower lumbar area and can result in instability. i'm not sure who told you that you had a cervical spondylolisthesis, but the MRI doesn't support this diagnosis. Perhaps you were told a cervical spondylosis, which is indicative of a spinal arthritis. Cervical spondylosis is a disorder in which there is abnormal wear on the cartilage and bones of the neck (cervical vertebrae). It is a common cause of chronic neck pain. This would make more sense to me and my guess is that you have spondylosis throughout your entire spine.

Unfortunately when someone is involved in a high impact automobile accident, the result is often a diagnosis of arthritis throughout the body, but particularly in areas that were more subject to the impact, such as the spine would be.

You really need to see a spine specialist because there are a couple items in your MRI that need to be investigated further. Of particular concern is the area in your thoracic spine where the bulging discs are coming in contact with the spinal cord. You need a careful evaluation of this so that the effect of this contact can be determined.

When the spinal cord is pressed on, it reduces the amount of space in the central canal that is needed for the spinal cord to function normally. The nerves can become compressed and the body part that the nerves innervate can become numb, tingly, burn, etc. If left in a compressed state, it can cause permanent damage, which in the case of the cervical and thoracic spinal segments, can result in paralysis.

From the MRI results, it is difficult for this lay person to see why your pain management doctor would be performing denervations as there is no indication of nerve compression in the cervical area.

Your worst damage seems to be in the thoracic spine. This is where the discs are impacting on the spinal cord. But possibly equally painful is the degenerative process you have going on throughout the spine. This can be difficult to treat as there is no "procedure" that can alleviate the condition. Some treatments can help but in general it is in terms of pain management rather than in being able to treat the condition.

Most of the lumbar spine looks ok but there is something you need to get reviewed further. [B]L5-S1: Minimal right sided disc bulge is seen. An incompletely evaluated mass is seen adjacent to the uterus and may be a fibroid.[/B]

In addition to the small disc bulge at L5-S1, the MRI picked up a "mass"
that appears to be adjacent to the uterus. Have you ever been diagnosed with uterine fibroid tumors? There is a mass that the writer says needs further evaluation to determine exactly what it is...if it is a fibroid, it could be pressing on the nerves of the lumbar spine and causing some or all the pain you are feeling in your hips, legs and feet.

It may be that the neurosurgeon will be able to tell what it is, or you may need to go to your ob/gyn for an evaluation.

If you haven't done so already, I would suggest you also consult with an orthopedic spine surgeon.

Please come back and let us know the results of your appointment with the neurosurgeon. I hope you will get a plan of treatment and an accurate diagnosis soon.

jenga890 07-23-2012 09:15 AM

Re: New here- Question: Fibro vs. back pain? MRI report attached (LONG)Thoughts Pls?
Hi, it sounds like you've done so much for your pain thus far and I don't have any suggestions about pain killers or any procedures, etc. But I do want to consider your quality of life and the things you've suggested about wanting to be out of your misery and yet not wanting to commit suicide. I'm glad you are thinnking of your kids.

I'm going to go out on a limb here and suggest some wacky things, more for your mind than your body. I personally see this as being something that your grappling with, will the pain ever end, and probably so many other questions. Have you ever considered going to see someone who might have some insights about to what end you are suffering like this for? I'm thinking more a spiritual counselor like a shaman, hypnotist, psychic, vedic astrologer, or a tarot card reader? There are so many who practice these simply for their own personal gain, so it could be something you'd want to research or have someone research for you a little, first. But I do believe there are competant, heart centered people out there doing these things who might give you some piece of information that puts your experiences into some type of perspective that helps you in some way, or they might have a vision of who you need to go see and do next, or they might be able to do something else that gives you hope or gives you answers.

I know that's going out onto a limb there, but when you get desperate, you do end up trying some crazy things.

I recently went to a vedic astrologer and he did up my chart and was able to tell me everything that had happened to me up to this point, every major life/health event and he gave me some perspective on where I'm headed. It wasn't scary, it actually helped bring me a lot of peace and helped me put my priorities in line with something deeper inside of me that I don't think I had ever been aware of before.

If we keep looking for answers in all the places where there were none for us, we won't get anywhere with our conditions. But to go out on a limb and try something new will give us new information. I can't guarantee the outcome of using super alternative methods like what I suggested, but sometimes it's worth seeing what the spiritual realm of healing might have to offer, particularly if modern medicine is trying to help but it's also being pretty ineffective at this point.

Timianne 07-26-2012 08:28 PM

Re: New here- Question: Fibro vs. back pain? MRI report attached (LONG)Thoughts Pls?
My computer has been down, but now revived. Thanks to the both of you for your insightful responses. The answers, of course, bring more questions.

To teteri66: Thank you for the wealth of information. Yes, it took them over 20 years to refer me to a spine specialist. I had always thought that the back pain was fibro, and evidently they did too, without further research. I had Kaiser for most of those years, and I never did find them to be very helpful. The past 2 years I changed to an Aetna ppo, but I can only go to one facility that is in network, or I would have to pay $$$.

Yep, I do think you're correct, it was spondylosis I was diagnosed with following the car accident almost four years ago. The car accident was a very low impact hit, though, that caused severe right sided neck pain. After trying many other things, i.e., PT, acupucture, chiropractor, meds, I was referred to an anesthesiologist who performed the denervations. I did get a quite a bit of pain relief in that specific area following the cervical denervations, for about 5-6 months at a time, and reducing the pain in the neck would reduce the nerve pain throughout my body. (The last one, though, produced more pain throughout). Only my neck was looked at by MRI at the time of the accident. It's fair to say my back was messed up already- maybe the thoracic problem would have something to do with the severity of the neck pain following the accident?

I have never been told that I had a fibroid tumor. I guess something else to have checked. By the way, I just got an appt. to see a neurosurgeon. They are booked up for two full months, so it's at the end of September!
Maybe I should make an out of network appt. with a neurosurgeon, to just get some answers of the MRI.


To: jenga890 I have thought at times as to why I have suffered for so long and what is the meaning in all of it. It can't be said I haven't tried to find the answers. Maybe a combination of looking in the wrong place for answers and not challenging what is being told to me. If I hadn't asked for the full spinal MRI recently, who knows how long it would have taken them to order it. Do people have to stab a knife in their heart before they get help?

Ultimately, I know I couldn't kill myself, but nobody should have to live with this much pain and with no end in sight. I have tried hypnotherapy and a spiritual counselor in the past. I have learned a wealth of "tools" over the years to calm my mind and alter my thoughts. Unfortunately, these have not produced true pain relief. At my 1st appt. with a PhD last week - she listens to me for one and a half hours, then suggests I should take a walk. Did she listen to anything I said? In general, that may not be a bad suggestion, but it seemed very out of place after I had just opened my heart. Trying to keep an open mind...

Thank you again,

teteri66 07-26-2012 09:25 PM

Re: New here- Question: Fibro vs. back pain? MRI report attached (LONG)Thoughts Pls?
Don't forget about the option of getting an opinion from a fellowship-trained orthopedic spine surgeon. Sometimes each specialty looks at things slightly differently. Since you had so much trauma to the skeleton, you might want to consider the ortho spine surgeon as well.

Timianne 07-27-2012 12:51 AM

Re: New here- Question: Fibro vs. back pain? MRI report attached (LONG)Thoughts Pls?
Are you meaning a fellow? I can tell you that I work at a University (teaching) hospital and my coverage is thru them. They have a spine clinic there with a combination of neurosurgeons and orthopedic surgeons. After they gave me the appt. info, I asked if it was a possibility for me to see an orthopedic surgeon, but they said the wait would be almost as long and after review of my chart wanted me seen by the neurosurgeon. Sounds like in my case, I could probably have use of both!

The last surgery I had last August, was an adrenalectomy with adrenal tumor removal. I had an appt. with the faculty surgeon (long wait), but the fellow did both the consult and the surgery. (Fantastic job I may say.)

teteri66 07-27-2012 04:07 PM

Re: New here- Question: Fibro vs. back pain? MRI report attached (LONG)Thoughts Pls?
What I mean was an orthopedic surgeon who had completed a fellowship in the spine. The fellows would still be in training, technically. I would imagine all your orthopedic spine surgeons are fellowship-trained. Almost all are these days....But there are still some orthopedic surgeons out there who operate on the spine, as it was a part of their training, but they also do other orthopedic work...and people need to have the highest level of training when it comes to the spine, as far as I am concerned.

I'm a little surprised that someone at the clinic would tell you that you needed to see a neurosurgeon rather than an orthopedic spine surgeon. In any case, I suggest you get opinions from both specialties before agreeing to let anyone touch you. Does that mean you cannot see someone from a different spine practice?

Timianne 07-28-2012 04:07 AM

Re: New here- Question: Fibro vs. back pain? MRI report attached (LONG)Thoughts Pls?
Basically, as there is one spine clinic that contains all the practitioners for OHSU.
Going outside of my insurance network would be a huge expense, especially now that I had to take a medical leave (STD claim pending) and don't foresee being able to return to work until I am able to sit, stand, and walk without severe pain, not to mention the newly worsening problem of urinary incontinence. I had both thoracic and lumbar steriod injections yesterday, in much pain following, still feel all of the spine pressure, leg pain and numbness. I was told that the injections could take a few days to kick in - I sure hope so!

On a related note to the Spine MRI ordered, the doc was to have included the hips, but it didn't happen. I followed up with her and had those taken a few days ago.

MRI Hip Findings:

Osseous: The right total hip arthroplasty (done 2010) causes mild susceptibility artifact. Mild heterogeneity on T-1 weighted images likely mild osteopenia. Left hip grossly preserved, with mild acetabular and femoral head spurring. Trace subdural edema in the anteroinferior right sacroiliac joint is present with mild degenerative spurring. Left sacroiliac joint normal.

Left Articular: Normal.

Muscles/Tendons: Small partial tear at the origin of the right semimembranosus tendon. Otherwise, proximal hamstrings tendons are intact. Right gluteous and minimus tendon is partially torn with underlying tendinopathy. Also a partial tear of the left gluteus minimus tendon.

Impression: Mild degenerative disease of the right sacroiliac joint and left hip.

Misc.: No bursal fluid seen. A 2.4 cm. heterogeneous STIR hyperintense,T1 hypointense lesion in the right hemipelvis present, appearing to arise from the right ovary. Since pre-menopausal, most likely reflects a normal follicle.

Timianne 07-28-2012 04:13 AM

Re: New here- Question: Fibro vs. back pain? MRI report attached (LONG)Thoughts Pls?
Teteri66 ~

Thanks, I did some research last nite as I couldn't sleep. Through digging, I came across a name of an orthopedic surgeon that did a neurosurgery fellowship. Just have to wait until Monday when I can call and see his availability. In reading on his focus and training, it sounded like he might be a better match for me anyway, than waiting for the other.

Karmah1 11-17-2012 11:54 PM

Re: New here- Question: Fibro vs. back pain? MRI report attached (LONG)Thoughts Pls?
thank you teteri66 for the info regarding the ortho/fellow/neuro. I have severe fibro (2 years now) Before the fibro spread throughout my body, I suffered from chronic moderate-severe neck/shoulder pain along with lower back pain (around the SI joint area). ~6 years
Anyways, just last week I had a huge moment of clarity - to have a specialist look at my spine.... maybe there is something else going on here. I wasn't sure whether to talk to the neurologist I am going to see for nerve testing or an Ortho. I made an apt with an Ortho Spine Surgeon figuring it couldn't hurt.
Getting to my point - your info was very helpful and reassured me that I made the right decision . He is a fellow - something I never would have known to look for.

Bstsms 03-16-2013 04:02 AM

Re: New here- Question: Fibro vs. back pain? MRI report attached (LONG)Thoughts Pls?
Your problems sound eerily like mine. I hurt my back in Jan 2004 loading trucks, and it took me till 2011 to figure out the source of my chronic lower back pain. I also get frequent migraines which I believe are due to the stress of being in almost unbearable pain for so long, when in bad pain it seems to trigger a migraine, although doctors tell me headaches are usually not attributed to lower back pain. I was constantly being told my MRI's looked like the back of a teenager and nothing could be seen that would cause the severe chronic pain I was in, which was not what I wanted to hear because that meant the problem couldn't be fixed if the cause of the pain couldn't be seen. I was doing 1-2 MRI's a year until I couldn't stand the pain long enough to finish another MRI a couple years ago. I have been in a pain management program for about 7 years and now take 50mcg.Fentanyl patches every other day and 10mg Oxycodone four times a day for breakthrough pain. I think I have tried all pain medications known to man, from Tylenol to Oxycontin and Methadone in the past 9 years with minimal help with the pain. I finally found out both of my SI Joints are the reason for the severe pain I've been in. I have been getting bi-lateral nerve blocks every 2-3 months for the pain in my lower back, buttocks and sometimes down my legs into my feet, and I am finally in a liveable pain level. I'm not a doctor but, If you haven't tried SI Joint nerve blocks, I would recommend you ask your doctor about trying it. I hope you find a treatment that makes your life more bearable than it sounds now.

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