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My pain is now a mystery!

Posted by dennismm @dennismm, Sep 1 7:55am

For 3 months I’ve had terrible lumbar pain.
The mystery? Not one of 6 physicians know why!

Had MRI’S, CT Scans, nothing!
Pain specialist/orthopedic surgeon looked at the MRI results and saw nothing. He said I can’t treat you because there is nothing to treat

No spine issue, disks or anything else. He said how can I treat someone when I don’t know what’s causing such intense lumbar/lower back pain?

Saw psychiatrist, neurologist, GP, rheumatologist, even gastroenterologist!
No no no!

Every single dr. I see says “I don’t know!”
Not only that but for 3 months I’ve hardly slept due to the fact that when I’m in a supine or prone position the pain is so bad it would not allow me to fall asleep!!!

Do what’s the next thing they all tell me:
“Take naps and you’ll feel better.”
Guess what, when I lie down the pain manifests itself even more. Tried sitting up in a recliner and sleeping that way, nope, way too much pain!

One physician said try strong opiate, MAY HELP, and of course I refused that type of treatment.

So here I am what the Drs. call a mystery case, however meanwhile, I’m totally miserable with no solution in sight and a lot of pain!!

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dennismm | @dennismm | Sep 7 11:33am
In reply to @barbaradh "@marcd2k I would not go for another epidural; the exposure to steroids is not something to..." + (show)
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@marcd2k I would not go for another epidural; the exposure to steroids is not something to be taken lightly. I certainly would not get another epidural from the same physician. A different doc may use a different technic and different medicine. I hope these are being done under x-ray guidance. If I were you I would seek out some other modalities like acupuncture and after that chiropractic doc. I hope you can find an acupuncturist where you live. Chiropractors are everywhere. Hope you are feeling better. Do you lift weights? Perhaps this is muscular in origin?

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@barbaradh
Chiropractor and acupuncture did nothing for a month!
Back to the mystery of Drs. Saying I don’t know. Mystery problem!!

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barbaradh | @barbaradh | Sep 7 1:55pm
In reply to @dennismm "@barbaradh Chiropractor and acupuncture did nothing for a month! Back to the mystery of Drs. Saying..." + (show)
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@barbaradh
Chiropractor and acupuncture did nothing for a month!
Back to the mystery of Drs. Saying I don’t know. Mystery problem!!

Jump to this post

@dennismm Thanks for letting me know. Massage therapy of any help? In initial entry you labeled the doctor a “pain specialist/orthopedic surgeon.”

You are talking about two different specialists; I have yet to meet an orthopedic surgeon who is double boarded in pain medicine. Therefore, I don’t think you have thoroughly explored the pain medicine route. Pain specialists have different backgrounds; many come at it with anesthesiologist background. Others have a background in physical medicine.

I think you need to consult a pain doc who’s is boarded in physical medicine and rehabilitation (full title for the field). If you live in a fairly large metropolitan area, you should be able to locate one. BTW don’t let them pass you off to a PA (physician assistant). If they insist that you be seen with one first, demand that you get face time with the doctor as well. PAs are not particularly well-trained; they always think they know more than they do, too. Hope this helps.

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dennismm | @dennismm | Sep 7 3:32pm

FYI,
The Dr I visited is a pain specialist, and an orthopedic surgeon and an anesthesiologist!!
He sent me to a rheumatologist who just ordered special blood tests.
Awaiting his call.
Thanks for caring!!!

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gently | @gently | Sep 7 5:18pm

dennismm, meanwhile flip your mattress and sleep on your side with a pillow between your knees. I hope this mystery unravels with the rheumatologist.

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barbaradh | @barbaradh | Sep 7 5:39pm
In reply to @marcd2k "@barbaradh Good morning, Barbara, thank you for replying. I know you don't know my situation, which..." + (show)
Profile picture for marcd2k @marcd2k

@barbaradh Good morning, Barbara, thank you for replying. I know you don't know my situation, which is why you made these suggestions, but, believe me, all I have been doing for the past three years is see chiropractors, acupuncturists, physical therapists, etc. And I have been to multiple of each of these modalities, at three different practitioners of each of these.

This has literally been my full-time job for three years. I have a 10 page summary (and counting) of everything I've done, or had done, that I bring to each new person I see. Besides these visits, I have also gone the traditional route, visiting (5) different hospitals, seeing more than (30) medical professionals, and the majority of these "experts" have given up after one visit with them. This is why I have been to every hospital and have seen so many doctors, because after a single image or blood panel does not show these "experts" the exact problem that they can fix in two minutes, they literally walk away and I never hear from them again.

I have a primary doctor with UCLA that I have not heard from in more than (2) years, and another with Keck of USC that he and his office blew me off for months. So, I don't sit around waiting for these "experts" to decide if they are going to do their job, I move on after researching my next step(s). There is nothing left to try at this point, which is why when this latest pain management doctor seemed very sure (more than the others, who are basically throwing darts to see what to try next) of what I need to do, I said let's do this.

Thanks again, have a great week,
Marc

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@marcd2k Mark, Sorry. I confused your posting with dennismm who said his pain is of three months duration. I read now that yours is of three years duration. Sounds like you have tried a lot of solutions.

I know doctors are overwhelmed when patients arrive with a ten page summary of their failed treatments. If you are on Medicare they are given an embarrassingly short time in which is see, diagnose, and make a treatment plan. That is the hand they are dealt; they don’t make those ridiculous rules.

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marcd2k | @marcd2k | Sep 7 10:46pm
In reply to @barbaradh "@marcd2k Mark, Sorry. I confused your posting with dennismm who said his pain is of three..." + (show)
Profile picture for barbaradh @barbaradh

@marcd2k Mark, Sorry. I confused your posting with dennismm who said his pain is of three months duration. I read now that yours is of three years duration. Sounds like you have tried a lot of solutions.

I know doctors are overwhelmed when patients arrive with a ten page summary of their failed treatments. If you are on Medicare they are given an embarrassingly short time in which is see, diagnose, and make a treatment plan. That is the hand they are dealt; they don’t make those ridiculous rules.

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@barbaradh No problem Barbara, I have had conversations with several people on this discussion board, and I've mixed a coupe of messages up as well.

I am about a year-and-a-half away from Medicare, and the plan my wife and I are on is Anthem Blue Cross, PPO. We have been told several times that we have a very good plan, however, you would not know it from the treatment I've had to endure, and the treatments I've never had due to being ignored, or not taken seriously.

I realize the healthcare system is not what it used to be just 20 years ago, and that many doctors / nurses / healthcare professionals are only allowed to do certain things, and can only spend a certain amount of time with each patient. But my situation has gone way past that to where I've finally filed an official complaint.

There is no excuse for how I have been treated as an adult with "very good" insurance, one that is on time, every time, that jumps through every hoop I'm given, and does everything I'm asked / told to do. Doctors have said to my face that they do not know what is wrong, and they stop trying. Not even a call or an email to a colleague, or providing a referral to someone they feel can help, just a "don't let the door hit you on the way out" type of attitude.

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dennismm | @dennismm | Sep 8 10:30am
In reply to @barbaradh "@marcd2k I would not go for another epidural; the exposure to steroids is not something to..." + (show)
Profile picture for barbaradh @barbaradh

@marcd2k I would not go for another epidural; the exposure to steroids is not something to be taken lightly. I certainly would not get another epidural from the same physician. A different doc may use a different technic and different medicine. I hope these are being done under x-ray guidance. If I were you I would seek out some other modalities like acupuncture and after that chiropractic doc. I hope you can find an acupuncturist where you live. Chiropractors are everywhere. Hope you are feeling better. Do you lift weights? Perhaps this is muscular in origin?

Jump to this post

@barbaradh
Never had an epidural. Dr said there’s no place he sees where the issue is located.

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