Unknown Etiology

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Regular Member

Date Joined Dec 2006
Total Posts : 22
   Posted 8/18/2008 2:02 PM (GMT -6)   

Does anybody else here suffer from chronic pain of an unknown etiology? 


I suffer from chronic neck pain, stiffness, and spasms.  However, the etiology (reasons, causes, and origin) of my disorder is unknown. 


Since the etiology of my disorder is unknown, doctors and people, in general, do not take me seriously.  Doctors are unwilling to try powerful, aggressive treatments because they fear they could get in trouble for using an off-label treatment.  For example, I would like to try botox injections, but my doctors are unwilling to try this because I do not have textbook cervical dystonia.   


Do you-all have any tips for receiving genuine, aggressive care for a pain disorder that cannot be proven using scientific test?

Disce Pati
Regular Member

Date Joined Apr 2008
Total Posts : 61
   Posted 8/18/2008 4:56 PM (GMT -6)   
Actually I sorta fit into the same category that you are describing - only my is chronic abdominal pain from "unknown etiology" - and my docs are very comfortable in treating me aggressively. I can offer suggestions, once I get time back on the computer; I have to boogie out the door in seconds to catch my ride home (I bet that phrase has just dated me!!!).

Just wanted to send a quick reply to give you encouragement

Pamela Neckpain
Veteran Member

Date Joined May 2008
Total Posts : 1821
   Posted 9/1/2008 3:43 AM (GMT -6)   
I haven't heard of Cervical Dystonia for a long long time.
I believe I have it.
If i do have it, I can't afford the treatment which is Botox
I don't think many know about Cervical Dystonia or it's other name Torticollis.
It is just awful.
Pamela Neckpain

Pamela Neckpain
Veteran Member

Date Joined May 2008
Total Posts : 1821
   Posted 9/1/2008 3:46 AM (GMT -6)   
Pati ...
"Boogie Out The Door"
Why that's nineteen hundred and seventy two!
We're probably the same age.

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome,.Prolapsed Bowel and Bladder, Attention Deficity Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety,

Regular Member

Date Joined Jul 2008
Total Posts : 75
   Posted 9/1/2008 12:32 PM (GMT -6)   
Have you investigated Myofascial Pain Syndrome?
I also have neck spasms and pain, feels like the neck
will break in half.
Once diagnosed with MFP I can control some of the symptoms.
Most doctors don't even think of this, you need a Doctor of
Osteopathy to look at you.
May be worth a try.

Pamela Neckpain
Veteran Member

Date Joined May 2008
Total Posts : 1821
   Posted 9/1/2008 1:00 PM (GMT -6)   
I have been diagnosed with myfascical pain syndrome. They've tried
a lot of different things, but only a couple of doctors advised surgery. What MFP
symptoms can you control? My neck feels like it will break in half also.
I thought I'd broken my neck when I walked in the pool for 50 minutes
one warm evening not long ago. (Maybe that was a spasm?)
I think I do need to go to an Osteopath. My pain doctor asked if I'd ever
gone to a Chiropracter. Are those two about the same?
Thanks, Bonnie.
From Pamela Neckpain

Post Edited (Pamela Neckpain) : 9/1/2008 12:04:09 PM (GMT-6)

Regular Member

Date Joined Jul 2008
Total Posts : 75
   Posted 9/1/2008 2:43 PM (GMT -6)   

Hey Pamela

Have they not shown you any stretches to loosen the fascia?

The muscle knots or tightens and then the fascia tightens over

that and then comes the pain. Both my arms and hands were in

total pain and the heavy tingling and numbness. (if you have

experienced it you know what I mean, it is hard to describe.)

An Osteopath is the person to see for sure. Only them or someone

trained in MFP release can really help. I still have trouble with one

muscle in my neck but know how to stretch it out. My arms and hands

are useable again (still some tingle and numbness at times) I am also

on Gabapentin which helps with that.

Who diagnosed you with MFP and didn't teach you how to stretch the


I also have a treatment with my Osteopath every 2 weeks. She is wonderful.

She is trained in Osteopath as well as massage so gives a whole body treatment.

It does hurt at times but the muscles are released and it sure helps.

Hope this helps.


Pamela Neckpain
Veteran Member

Date Joined May 2008
Total Posts : 1821
   Posted 9/1/2008 4:45 PM (GMT -6)   
I was diagnosed with Myofasical Pain by a Neurologist. He did those needle point
sticks in my back. They did no help at all. He also prescribed Vicodin. I'd have
to go in and get my prescription every single week. He'd had problems with
a patient who had taken more than his/her share and wooooopsie ..... Doctor
didn't want that to happen again.
The second Dx of Myofascial Pain was from a Pain Managemnt Guy who worked in
a clinic. He believed the answer to my problems was Accupuncture. (This did nothing)
He also prescreibed Methadone. That helped a little. But, then again, I have multiple
I am currently going to an M.D. who is also a D.O. She doesn't do a darn thing but
I guess she IS an osteopath.
No one has taught me. I feel the big lump. They call them Lipoma in other words,
fat lumps. I rub them and eventually they go away.
Thank you, Bonnie
from Pamela

Post Edited (Pamela Neckpain) : 9/1/2008 3:48:27 PM (GMT-6)

Regular Member

Date Joined Jul 2008
Total Posts : 75
   Posted 9/1/2008 4:48 PM (GMT -6)   
I am sorry you are not getting good treatment.
Look for a therapist trained in myofascia release.
Maybe then you can get some relief.
I hate the way doctors only want us to cover the
pain with drugs and say "live with it"

Regular Member

Date Joined Jul 2008
Total Posts : 191
   Posted 9/1/2008 9:43 PM (GMT -6)   

Hello Lonely,

Im sorry to see you are still having so much trouble.  BTW thank you so much for the really nice post you left on my other thread made me feel alot better..

I was wondering how long you have had this pain?  Second I know you served in the military and I was wondering if you are being seen at the VA or through private health?  Have you had a recent MRI as well?

I sorta have the same prob with my lower back.  When I was involved in the accident the mri showed moderate osteoathritis in my lower back and that was all and I have never had any issues before my accident.  All the doctors I have seen tell me there not sure what is causeing me to have so much lower back pain. I have tingling and numbness in my left leg, which from what I can gather is neuopathic in nature but have nothig showing that on the MRI. My leg also gives out from time to time.

The pain management doc. told me he THINkS, that the accident caused it to flare up, which doesnt sit well with me at all as far as dignosis goes.  But at the moment I dont have anything else to go on and he may be right.  I think we all would like a definative answer, it makes it much easier to deal with.  Just know we all understand and believe in you.

I fell the same way you do Lonely, I feel that poeple and doctors are not taking me seriouly.  So one of the things I have been doing is keeping a pain journel.  Everyday I right down what that day was like,  what I did, what caused pain to worsen, what make it better if anything, and I will be taking it to me to the doc. next appointment because I feel that he is pushing me through and when he starts asking questions I loose track even with a list.  This way I can just hand him the journel.

I wish I could offer you more help Lonely, It is frustrating to feel like people arent listening to you.  Just know you dont have anything to prove to family and friends Lonely!  And keep at the doctors for them to come up with some help, and if you have to find a new doc.  Somtimes fresh eyes and ears can make all the difference!

Take Care Lonely, Wishing you well




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