Years of Pain no solid diagnosis

Billy Bob · #1 (**permalink**) 10-07-2013, 05:33 PM

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 · #2 (**permalink**) 10-07-2013, 05:40 PM

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 · #3 (**permalink**) 10-07-2013, 05:52 PM

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 · #4 (**permalink**) 10-07-2013, 06:12 PM

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 · #5 (**permalink**) 10-07-2013, 07:05 PM

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 · #6 (**permalink**) 10-07-2013, 10:52 PM

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 · #7 (**permalink**) 10-08-2013, 05:55 PM

Quote:

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.