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!!

Interested in more discussions like this? Go to the Bones, Joints & Muscles Support Group.

Thanks Marc for all the useful information. All I can say is I hope your pain disappears!

REPLY

Any procedures during the 3 months? If you have a normal MRI you can still get procedures done to figure out why you're having so much pain.

REPLY

No procedures, nothing,
Now Dr wants to experiment with Lyrica.

REPLY
Profile picture for dennismm @dennismm

No procedures, nothing,
Now Dr wants to experiment with Lyrica.

Jump to this post

@dennismm Then I recommend finding a new pain management doctor that is willing to do some type of procedure. Whether it is a trigger point injection or a diagnostic nerve block.

REPLY

So sorry for all your pain. I, too, recommend Mayo. Their pain clinic (I'm in Arizona) is excellent. Been through various treatments - gotten help - until I fall or land wrong sitting, etc. (Fractured my right hip and had complete hip replacement - trauma surgery), L4-L5, L5-S1; SI joint, Piriformis nerve, etc.)

Now I have osteoporosis (currently getting Evenity--next injection 5 of 12; when I fall I get insufficiency fractures -- scary. I went in for trigger point injections in April of this year. The third one was horribly painful. The doctor said I shouldn't have pain like that unless it's a fracture. Sure enough, the MRI showed It was--another insufficiency fracture, right sacrum. I am back in PT taking baby steps to start. Pain controlled via Tylenol and twice a week in-home PT. A cane has helped as well.

As all that seems to create pain is connected, I like that Mayo will look a bit beyond to see what factors are causing the issue. Typically, there are more than one.

All the best getting help.

REPLY
Profile picture for dennismm @dennismm

I’ve just been going to local physicians.
With all my pain I’m not walking or driving too much.
Thanks for the suggestion!

Jump to this post

@dennismm

It is time to find a way to travel. Not necessarily far. Where do you live? There are Mayo Clinics in Rochester MN, Phoenix AZ and Jacksonville FL. There is the Cleveland Clinic in, of all places, Cleveland. There is the Barrows Neurological Institute in Phoenix. There is Cedars Sinai in Los Angeles. Johns Hopkins in Maryland. Etc.

Your random local doctors are obviously not solving your problem and continuing to see them won't do anything for you.

REPLY
Profile picture for steveinarizona @steveinarizona

@dennismm

It is time to find a way to travel. Not necessarily far. Where do you live? There are Mayo Clinics in Rochester MN, Phoenix AZ and Jacksonville FL. There is the Cleveland Clinic in, of all places, Cleveland. There is the Barrows Neurological Institute in Phoenix. There is Cedars Sinai in Los Angeles. Johns Hopkins in Maryland. Etc.

Your random local doctors are obviously not solving your problem and continuing to see them won't do anything for you.

Jump to this post

@steveinarizona
I am disgusted.
Now I’m on Prednisone,Lyrica and high dose of Acetaminophen

REPLY
Profile picture for steveinarizona @steveinarizona

@dennismm

It is time to find a way to travel. Not necessarily far. Where do you live? There are Mayo Clinics in Rochester MN, Phoenix AZ and Jacksonville FL. There is the Cleveland Clinic in, of all places, Cleveland. There is the Barrows Neurological Institute in Phoenix. There is Cedars Sinai in Los Angeles. Johns Hopkins in Maryland. Etc.

Your random local doctors are obviously not solving your problem and continuing to see them won't do anything for you.

Jump to this post

@steveinarizona
Live in Northern NJP

REPLY
Profile picture for dennismm @dennismm

@steveinarizona
Live in Northern NJP

Jump to this post

@dennismm
Northern New Jersey? Have you tried any of the major NYC medical centers? The Hospital for Special Surgery? NYU Langone? Cornell/Presbyterian? Columbia/Presbyterian? Etc.

Or does your acronym stand for New Jalpaiguri Station in India. In that case I know that there are some great physicians in India but I am not familiar enough to help.

REPLY
Profile picture for steveinarizona @steveinarizona

@dennismm
Northern New Jersey? Have you tried any of the major NYC medical centers? The Hospital for Special Surgery? NYU Langone? Cornell/Presbyterian? Columbia/Presbyterian? Etc.

Or does your acronym stand for New Jalpaiguri Station in India. In that case I know that there are some great physicians in India but I am not familiar enough to help.

Jump to this post

@steveinarizona
Thanks Steve. I’m on Northern New Jersey, and unless the earth really rotated, I’m in the USA.
Thank you!
Dennis

REPLY
Please sign in or register to post a reply.