Years of Pain no solid diagnosis

[Billy Bob]

All,

When I read what some of you have been through I feel foolish posting my problems. However I really need some advice/help.

For almost the last two years I have had pain that is almost undiagnosable.

The symptoms started in my lower left calf. Over time it radiated up my leg, mostly hamstring and eventually glute and finally my lower left lumbar area.

There are two kinds of pain, a constant ache that is almost impossible to control. And then shooting pains, I imagine it is like an ice pick getting stabbed into me.

I have been taking a mixture of drugs:

Nerountin
Cymbalta
hydrocodone
Oxycodone
occasionally muscle relaxers.

The Nerountin and cymbalta have pretty much put the shooting/stabbing pains in check. And the opiates usually (not always) help with the rest of the pain.

Here is the other treatments and diagnosis I have had:

Xrays (countless)
MRIs (at least 3 I can remember)
Ultra sound
3 rounds of nerve root in jections
countless rounds of trigger point injections
Oral steriods
dozens upon dozens of rounds of physical theraphy
Spinal decompression from a PT, and I also own my own inversion table

* I stopped getting the SRIs because I started getting intense migranes that would last for over a week after the procedure. I called my doctor telling them that the migranes were almost making me vomit. They thought I was accusing them of piercing my spine and insisted there was no way they could have done that. All I was trying to tell them is I needed help. I didn't have the head ache before the procedure and I got one after....

The bottom line is, the Xrays only show very mild disc degeneration. The MRIs are good. Some doctors say that this could be piriformis, others say they don't konw what it is.

The pain is VERY VERY real. I used to be in amazing shape. I was an avid weight lifter and was very strong. I worked out for years. People would marvel at my body etc. Now I do not work out at all.

I hate taking the meds all the time but if I don't I am in pain. Some times the pain is so bad I can't think. Sometimes the shooting pains cause me to drop things. Sleep can be impossible at times. I know I am not making this up or it is not all in my mind. I have a very high pain threashold. Like I said I would do punishing works outs, and I was also an avid martial artist. Pain was something that I could easily handle. But not this pain. It never goes away.


Does anyone have suggestions? I am desparate.

[mmglobal]

Billy Bob, it's hard to make people understand about chronic pain. I spent most of my adult life as an athlete and could work through severe pain. Lower levels of pain that lasts weeks, months or years can be far worse that short lived, intense pain.

I'd be curious to hear the details of the MRI. In my experience, you cannot depend on most spine surgeons to properly evaluate piriformis syndrome or SI joint dysfunction. Both of these can closely mimic typical sciatica from lumbar problems.

Where do you live?

Mark

[jsewell]

Billy Bob
I don't see an EMG testing the nerves listed in your workup. Sometimes you have to suggest things to your doctors. I have a spine surgeon that is open to my suggestions. I currently have an undiagnosed foot drop, my right foot just won't come up at all, it is so weird, i stare at it as i will it to come up and nothing happens. My surgeon said the imaging looks fine, nothing wrong. well something is wrong as in your case, so i suggested an EMg and that is what i will have next to test the nerves. It should tell where the problem is. I have taken gabapentin, basically the same as neurontin and it takes all the horrible nerve, leg pain away.
so that is what i suggest for you., It tests nerves as well as muscle function. it is not painful, just have little jolts to your nerves /muscles. i have had a few of them on different body parts and no big deal.
Other than that to test the actual disc is a test called discography, now that one is painful and costly. I cried when they tested the offending disc , which was later removed.
well a few of them .
good luck and keep us informed, i believe your pain is real., i too was an athlete and it just sucks to not be able to do the things i love. i have not found any replacements yet for my outside adventures.
Judy

[Billy Bob]

Oh I forgot I got those shock tests.

One where they did little shocks with taped on electrodes.

The other was a needle the stuck into many spots on both legs. and in my lower back (which hurt like HELL, just the lower back).

But they didn't find anything conclusive with that test either.

I am starting to get depressed because it is so hard to find the cause of this.

Thanks everyone for your kind words so far. Means a lot to me.

[theBadCormorant]

Is all your pain within in the same Dermatone? Presumably there is a nerve being irritated somewhere that is sending a load of nonsense signals to your brain - best of luck, I now how frustrating these things are.

you use the term 'real pain' - I often wonder, is it the fact that it is not real pain that makes it so much worse. I remember having the most astonishing pain in my shin bone, it was as if there was someone in there with a blow torch, pain so extreme i was beginning to see it as a colour. But it wasn't real, a nerve squashed in my back was sending misleading signals to my brain telling me there was a problem where there was not, there was nothing wrong with my shin.

[Maria]

If you've had all the tests to rule out spinal causes for concern have you had other tests done that rule out conditions like MS, Diabetes and any other medical condition?

I had chronic weird ass types of pain post my 2nd failed spine surgery (2nd lumbar discectomy) and really the list was so long with types of pain I had it was ridiculous. I never really had a great explanation for what was causing my pain although I had some explanations so I took the medication that helped combat the horrific symptoms for a total of 17 years and finally the worst of the symptoms sort of "went away." I had a 3rd surgery recommended but to be honest after the worst symptoms went away I was far too scared they might come back so I didn't bother with another surgery.

I hope whatever is causing your symptoms will be diagnosed though I am wondering how thorough the work up has been in terms of ruling out other than spinal causes as well as spinal causes. You may not have had the full scope of spine related tests yet such as discogram, CT scan without contrast if no prior spine surgery and with if you have has spine surgery, myelogram, and there may be others but the ones I mentioned aren't ones you mentioned. Wishing you the best and hoping your symptoms will go away one day too. Maria

[Billy Bob]

Once again THANK YOU to everyone who has commented on my post.

I am having a bit of depression because of this issue, and hearing people that are going through the same thing (probably much worse than me) being so supportive really makes me feel good.

To answer some of the other questions:

No surgeries yet. The most invasive things that I have had done is the Selective Nerve root injections. They took a hour or more, they would take x rays while doing the injections and then load me up with several different types of meds. I have had three of these and the first one was some what helpful. The second one mildly helpful. The last one was horrible, the procedure gave me massive migraines and actually made the pain way wosre.

Recently my doctor put me on cymbalta to see if it would help with the pain, only 60mg a day. It has been about 6 weeks, and I don't think it is making any difference. My doctor said that if this doesn't help then I need to go back to the spinal specialist that did the nerve root injections to see what else could be done. The problem is I do NOT like the spinal doctor. His practice deals largely with workmans comp cases, and I am not that type of patient. I work at a computer all day long. I lead a team of highly intelligent dedicated computer professionals. The last thing I am going to do is say that working on a computer hurt my back....

I will undergo any tests that are needed to try to get this pain to stop. Every time we think we find something that will help (physical therapy, spinal decompression, trigger point injections, nerve root injections, increases in meds) the decrease in pain is very short lived. I am slowly needing more and more meds and getting less and less relief.

I will ask about all of those tests that you guys listed and see what can be done, luckily I have very good relationship with my General DOC, and many other docs where I live.

My biggest fear is that the doctors will want to take me off my meds since there is no obvious problem (once again sounds like there are a lot of tests that can be done). I don't want to sound like a pill seeker. The neurontin helps for sure, but by no means does it stop all the pain. I usually need some sort of combo of a pain killer to aguement the neurontin. And it is next to impossible to do my job (once again extremely fast pasted highly technical computer/networking) when I am suffering from this kind of pain.

I will talk to my doctor about the other tests. Please let me know of any other suggestions, I really am becoming desperate.

[Billy Bob]

Originally Posted by theBadCormorant

Is all your pain within in the same Dermatone? Presumably there is a nerve being irritated somewhere that is sending a load of nonsense signals to your brain - best of luck, I now how frustrating these things are.

you use the term 'real pain' - I often wonder, is it the fact that it is not real pain that makes it so much worse. I remember having the most astonishing pain in my shin bone, it was as if there was someone in there with a blow torch, pain so extreme i was beginning to see it as a colour. But it wasn't real, a nerve squashed in my back was sending misleading signals to my brain telling me there was a problem where there was not, there was nothing wrong with my shin.

Sorry, but I don't know what a Dermatone is. Can you help on that?

And thanks so much for your kind words.

[Maria]

Most of the day? If you have a disc issue sitting all day is probably not helping making things feel better. Or even sitting a majority of the day.

I don't think you've had all the tests done that would rule out a disc problem or rule out a specific problem though you mentioned an MRI which can pick up plenty but not always everything and also sometimes things feel worse than they look on the MRI.

If you have the MRI report can you tell us what it says? If you don't have it you probably should get your copy of reports, scans and such for your own personal copy anyway.

Can you find another spine doctor to go to? If it's not a Worker's Comp case then you should be free to look for someone that you want to go to unless you've got an HMO type of health care plan.

You said you had selective nerve root blocks and I'm wondering if you've had lumbar epidural steroid injections?

Here's a great website to go to and get informed/educated and it would be helpful to you I'm sure. It has been greatly so to me and many others:
ChiroGeek's Home Page

Back/spine pain is depressing no doubt about that especially when it's significant to interfere with one's life/lifestyle.

Please keep us posted and hope we can be somewhat helpful to you. mmglobal (Mark) would be a really good person for you to talk to. The spine journey can be such a maze. Continued good thoughts~ Maria

[theBadCormorant]

Originally Posted by Billy Bob

Sorry, but I don't know what a Dermatone is. Can you help on that?

Each of the nerves that run down and exit the spine supply fairly predictable areas of the body. Take a look at this map LINK and the Wikipedia web page LINK

If your problems exist within one of these areas then it may explain which nerve is being affected and possibly what level of the spine that is causing the problem.

For instance, all the problems that I have suffered with this summer, numb little toe, sensory changes to the heel, terrible calf and buttock pain, have all existed within the S1 Dermatome. These symptoms combined with my MRI results from 18 months ago that showed the disc at the lumbar/sacral junction bulging and contacting the S1 nerve, indicate quite conclusively what is going on. I guess at the beginning of June that bulging disk finally ruptured and well and truly squashed the S1 nerve.

[jsewell]

Billy Bob as far as dermatomes go my doc knew immedietly that my foot drop would be effected by the L5 nerve, It covers the top of the foot and the flexing ability. Each nerve has its area that it is that it takes care of. I hope all of this explains it to you.
Seems like the test you have not had from reading this post is the discography. As they stick needles into each disc , you can tell if one is offending. I had horrible pain that was spreading in my thoracic spine a few years ago, all tests including MRi showed nothing wrong. But my pain was getting progressively worse including the intensity as well as the area it was involved in. well when that needle went into T7 i cried it hurt so bad, i was moaning and the doctor had to stop for a few minutes to try to calm me down. There was another lower one that hurt pretty bad too, so my surgery was planned out of the outcome of that one test.
I just wish this can get figured out for you. Get copies of all your test results . Then if you are able to go to another doc, you have everything they need.
Are you able to go to another doctor by the way? I know you mentioned you are not thrilled with the one you have.
Judy

[Billy Bob]

Originally Posted by theBadCormorant

Each of the nerves that run down and exit the spine supply fairly predictable areas of the body. Take a look at this map LINK and the Wikipedia web page LINK

If your problems exist within one of these areas then it may explain which nerve is being affected and possibly what level of the spine that is causing the problem.

For instance, all the problems that I have suffered with this summer, numb little toe, sensory changes to the heel, terrible calf and buttock pain, have all existed within the S1 Dermatome. These symptoms combined with my MRI results from 18 months ago that showed the disc at the lumbar/sacral junction bulging and contacting the S1 nerve, indicate quite conclusively what is going on. I guess at the beginning of June that bulging disk finally ruptured and well and truly squashed the S1 nerve.

This sounds VERY similar to the pain that I have. But the MRIs do not show a bulged disc. But the Pain never really goes away. Nuerontin really helped with the intense shooting pains. But nothing really seems to totally block the constant dull pain.

[Billy Bob]

Originally Posted by jsewell

Billy Bob as far as dermatomes go my doc knew immedietly that my foot drop would be effected by the L5 nerve, It covers the top of the foot and the flexing ability. Each nerve has its area that it is that it takes care of. I hope all of this explains it to you.
Seems like the test you have not had from reading this post is the discography. As they stick needles into each disc , you can tell if one is offending. I had horrible pain that was spreading in my thoracic spine a few years ago, all tests including MRi showed nothing wrong. But my pain was getting progressively worse including the intensity as well as the area it was involved in. well when that needle went into T7 i cried it hurt so bad, i was moaning and the doctor had to stop for a few minutes to try to calm me down. There was another lower one that hurt pretty bad too, so my surgery was planned out of the outcome of that one test.
I just wish this can get figured out for you. Get copies of all your test results . Then if you are able to go to another doc, you have everything they need.
Are you able to go to another doctor by the way? I know you mentioned you are not thrilled with the one you have.
Judy

Yes the deramtones make sense now. I think mine is more L4 and L5 and maybe S1.

RE: Doctor... My DO (gen practitioner ) is a life saver. She keeps my meds caught up, got me this amazing back brace, get some amazing vitamins that help people with diabetic style nerve pain. She goes the extra mile, over and over.

The spinal surgeon... Their office is supposedly one of the best in the area. But they deal heavily with workmans comp cases. I just feel like they don't give a sh!t about me. Plus I had the three nerve root injections that caused more bad than good in the long run.

LUCKILY, I can go to other doctors. I have some very very good connections at some medical institutions. I am going to get at least one more opinion as well as one last try with the spinal doc I have been seeing.

While I am terrified of surgery I will do it if it cause this to end. I have had two operations in the past. Both for bad injuries, but neither were related or had anything to do with my back (foot and hand). I am just so very scared to have some one do surgery on my back. But like I said I will do it. Or take the right med combo, or PT combo or whatever it is. I just want to get back to lifting weights. I know is sounds silly. But being a big strong guy, almost always the strongest guy in the room, defined who I was. Now I am the "old guy" or "becareful of your back"...

Guys and Gals

Thank all of you. I really really appreciate your help and advice.

[Maria]

Doctor's office acts like they don't give a sh*t going into surgery makes me wonder what they'll act like on the other side especially if there are problems vs. "perfect outcome."

If you do not have emergent reasons to have spine surgery don't rush yourself or go with someone who you have a not so good feeling about re surgery because believe me if you end up with less than good or OK results or bad results you're going to probably kick yourself in the behind for jumping the gun because you "were tired of being in pain or tired of the way things are".... Back surgeries are like no other surgery with regard to predictability of outcome.

Spine surgery does not always fix things and oft times one will either have a long haul to recovery which can be surprising unless the surgeon prepares one for this (with a possible bumpy road recovery) or the recovery will not be what is expected and one might have to have more surgeries because of the surgery that one had "to FIX things."

If you are prepared for the above type of results as well as good results then you are prepared. Also I would never tell anyone who needed truly emergency spine surgery to wait but I would tell those who have a choice to really feel very comfortable with the decision you are making for all the right reasons (don't justify) because spine surgery is a super big deal/ordeal and if things don't go your way and the surgeon did everything he or she was supposed to do right and it still didn't turn out "the way expected" one doesn't want to be kicking themselves in the arse regarding his or her own decision to have surgery.

So please take the time to check this sitch out as thoroughly as you are able before committing yourself to surgery and then be prepared to accept results whatever they might be. We are all often unrealistic at what we think can be achieved with spine surgery or at least how quickly it might be achieved and/or without any other type of little problems or complications that could occur.

Good luck to you and I do hope whatever you do will help you to feel much much better and last a long time! Maria

[jsewell]

Billy Bob,
You must listen to Maria she gives very good advice. i on the other hand have teneded to go into back surgery hoping to get back to some of the things i am used to doing., i know how you feel, although i have never been the strongest gal , i have been in pretty good shape and as i loose more and more of what i used to be able to do it is difficult, and i don't like it. I understand wanting to do it to get back to weight lifting. I know i will never get back to trail running or any kind of running, but now would like to be able to hike, which to me is a downgrade. I am dealing with a few issues right now spine wise which i certainly would like to not be dealing with.
I have an MRi coming up on the 26th and am EMg wihout a date yet and now have to deal with my body not being able to deal with a nerve pain drug, gabapentin which was doing wonders for my leg and foot. so i must stop it as i have gained like 14 pounds in less than a week and that does nothing for the person who just wants to be in good shape and get to exercise.
So keep us posted and i will do the same
judy

[Maria]

Ok I'm deleting what I wrote and just adding that it's great you have a good internist or GP. I have had some really good D.O.'s as practitioners and they can really help out quite a bit if they know their stuff re the spine and know what they're doing with manipulation. I never have gotten high velocity manip only low velocity.

I remember when I used to go the gym religiously and I was in very good shape overall except for my crappy spine. Even so it was being in good shape that I think saved me overall with all the probs I've had over all the years that I have. While I would love to return to the gym and work out like I once did I would have to say that now my goals are more realistic for me which is just to try and live as pain free as I'm able and to stay mobile. Even that is a challenge and oft times not related as much to my spine as it is to other body parts though I have to say my spine is always playing a part in there somewhere. I'm older now however and much more patient with myself than 30 years ago when all this stuff started. Whatever your situation is and whatever the problem might be I wish you the best with whatever you do or try to make things better! Maria

[housemd89]

Quite similar to me. Been off work a year, in pain for about a year and a half. Been told multiple things and had numerous scans. Eventually get told I had a protruding disc then get told "I don't think that#s the cause, we can do nothing more for you"

I know how frustrating it is, it feels as if they don't believe you.

[Billy Bob]

Originally Posted by jsewell

Billy Bob,
You must listen to Maria she gives very good advice. i on the other hand have teneded to go into back surgery hoping to get back to some of the things i am used to doing., i know how you feel, although i have never been the strongest gal , i have been in pretty good shape and as i loose more and more of what i used to be able to do it is difficult, and i don't like it. I understand wanting to do it to get back to weight lifting. I know i will never get back to trail running or any kind of running, but now would like to be able to hike, which to me is a downgrade. I am dealing with a few issues right now spine wise which i certainly would like to not be dealing with.
I have an MRi coming up on the 26th and am EMg wihout a date yet and now have to deal with my body not being able to deal with a nerve pain drug, gabapentin which was doing wonders for my leg and foot. so i must stop it as i have gained like 14 pounds in less than a week and that does nothing for the person who just wants to be in good shape and get to exercise.
So keep us posted and i will do the same
judy

Judy,

I am so sorry to hear all of this. I do have to say though I am really glad I found all of you guys on this forum. It has helped me a lot already.

Judy as far as the down grade from hard core running to more leisurely hiking. I totally understand what you mean. While I never competed I was very very strong. And to be honest my fanaticism about lifting weights, and other physical activities I used to participate in, might be the cause of my isssues.

I hope the MRI and EMG give good rather than bad info. Best of luck and keep us posted.

[Billy Bob]

Originally Posted by housemd89

Quite similar to me. Been off work a year, in pain for about a year and a half. Been told multiple things and had numerous scans. Eventually get told I had a protruding disc then get told "I don't think that#s the cause, we can do nothing more for you"

I know how frustrating it is, it feels as if they don't believe you.

Luckily, they have not officially turned their backs on me. But you are totally understanding where I am coming from.

I am also lucky that anyone that really knows me, knows I wouldn't let this sideline me as I have. However most of the doctors involved here only know me after this issue started.

[Billy Bob]

Originally Posted by Maria

Doctor's office acts like they don't give a sh*t going into surgery makes me wonder what they'll act like on the other side especially if there are problems vs. "perfect outcome."

If you do not have emergent reasons to have spine surgery don't rush yourself or go with someone who you have a not so good feeling about re surgery because believe me if you end up with less than good or OK results or bad results you're going to probably kick yourself in the behind for jumping the gun because you "were tired of being in pain or tired of the way things are".... Back surgeries are like no other surgery with regard to predictability of outcome.

Spine surgery does not always fix things and oft times one will either have a long haul to recovery which can be surprising unless the surgeon prepares one for this (with a possible bumpy road recovery) or the recovery will not be what is expected and one might have to have more surgeries because of the surgery that one had "to FIX things."

If you are prepared for the above type of results as well as good results then you are prepared. Also I would never tell anyone who needed truly emergency spine surgery to wait but I would tell those who have a choice to really feel very comfortable with the decision you are making for all the right reasons (don't justify) because spine surgery is a super big deal/ordeal and if things don't go your way and the surgeon did everything he or she was supposed to do right and it still didn't turn out "the way expected" one doesn't want to be kicking themselves in the arse regarding his or her own decision to have surgery.

So please take the time to check this sitch out as thoroughly as you are able before committing yourself to surgery and then be prepared to accept results whatever they might be. We are all often unrealistic at what we think can be achieved with spine surgery or at least how quickly it might be achieved and/or without any other type of little problems or complications that could occur.

Good luck to you and I do hope whatever you do will help you to feel much much better and last a long time! Maria

Maria,

Thanks for all of the great advice. My last goal here is to have surgery. I mean if I get a diagnosis that indicates I need surgery I will entertain the thought. However I will most likely get at least one second opinion if my doctors states that I need to have surgery. Fortunately I have only had two operations in my life. One was very successful and the other was mediocre. Neither of these operations were for my back (fortunately).

I am perhaps most lucky because my father is a doctor. I have fought hard to not involve him in this issue (he is not a spinal surgeon, but he has almost 40 years of experience in emergency medicine). I wanted to try to handle this on my own. But after a year of living in pain, and no one can figure out why, I started reaching out to him for help (he was more than willing, I just wanted to be a big boy). He and I for almost another this entire year are putting our heads together to try to get this solved. He tells me he knows something is not right because he sees the way I am moving. He can tell I am in pain.

And he has actually had a couple of disc issues, one of which what required surgery (was very successful). However I remember him warning me about back surgery way before I ever had issues. This was when he was having issues and he was reluctant to go into surgery. He mentioned how one of his co-workers had to have back surgery and ended up having to retire because of the outcome. So he got lucky, but he too didn't sugar coat any of the possible outcomes.

I guess what I would really like is just a solid diagnosis. I don't want to feel like I am dreaming all of this or making it all up. Luckily I have not felt that way to much yet. However I have my first visit with my spinal doc (in a while) this friday. I am going in hopes of two things. First I hope he has another direction to take all of this in or new things to try. Second, hopefully he "believes" me. I don't want to be treated like I am trying to get money out of this (his office does a lot of work man comp). The last thing I want on earth is to slow down, and get paid for not working... I love my job. I have fought tooth and nail to get where I am at in the world.

Ok I am rambling now.

Everyone, THANK YOU THANK YOU THANK YOU.

the comments and relations mean a lot to me.

[Billy Bob]

Had my appointment with Spinal surgeon on Friday.

They took a bunch more Xrays and found a good deal more arthritis in L4 and L5.

Then he took my most recent MRI, and looked again.

He found mild disk buldges in 3 spots, more arthritis, and narrowing of somethig.... Can't remember the word he used.

I am scheduled for another MRI on the 18th and then most likely micro surgery.

I have to be honest I am pretty scared.... Everything he found was mild or minor, but I am wondering if it all could add up to something that is causing my pain. I guess we will see with the fresh MRI.

[Maria]

Can be two very different things. I had a small bulge for a long time at L5S1 that I was told by every surgeon I saw for a long time "shouldn't" have been giving me the symptoms it was ... but it did and the symptoms were severe for me and very disruptive to my life. Especially when my back would go out every other month and I would be off my feet for 4 weeks or so in bed recovering. That was the point of my first discectomy.

I'm wondering if you were told you have stenosis? I think the updated MRI will give a better idea of what's going on and perhaps before you have a micro discectomy you'll have some other tests to make sure the suspected involved disc(s) is/are the ones really causing you pain.

Wishing you the best and please keep us updated! Maria

[Billy Bob]

Maria,

I think what you said was right, the stenosis. Once again all of these things were considered mild (not by me but by my doc).

Wed is the MRI, we will see what happens then.

Thanks again everyone.

[Rob Wilson]

If you are over 45 years of age, I would imagine it is stenosis. Sometines the extent of this is difficult to see even on MRI. I ended up having multiple minimally invasive surgeries to clean out this stenosis. Fortunately I had very good results. Hope you find the right surgeon and make the prudent decision.

[mmglobal]

Rob, it is soooo nice to see you still posting about your success. Your road was so difficult... I'm very happy to continue reading positive news!

mARK