pamelaneckpain

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lavendar
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Date Joined Nov 2007
Total Posts : 450
   Posted 3/15/2009 2:36 AM (GMT -7)   
smhair  Pamela, Just tuned in to this station. ChronicPain,AnxietyDisorder,Arthritis,CryptogenicLiverDisease,SleepDisorder  and a psychiotrist who does not want me to take any type of meds, because I may become addicted. What kind of quality of life is that.
I have had so many MRI's I can't began to count them. Just like others I have never been offered any meds. That's the easy part. I'm not quite sure what kind of surgery you are possibly having, to tired to read all posts right now. But get that MRI If it's neck related, I have several ruptured disks which I won't have surgery on. My choice. Just had five surgeries these past few months for bunions, One foot required four and is still not quite right. Can't take more than one half a tylenol a day for my arthritis due to the liver problems.
 
redface  But enough about me, Get your MRI Get the IV, I would.  just so I could relax for a few minutes. Keep on posting It helps to know there are people who care and understand your situation. And some of us actually stay up till yesterday is today, and today is tomorrow. eyes eyes eyes   june

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/15/2009 5:18 PM (GMT -7)   
june ...

No medication for your pain? What state do you live in? I believe you are going to
the wrong doctor.

There are many sour-faced doctors who simply do not believe in chronic pain. You
may have to go to three or four.

Yes, so far I've chosen not to have surgery on my neck. Things may be changing now.
I will have the mri.

I have too much pain to type right now, june ... but there are some more things
I want to say to you. Oh yes!

Tomorrow, you call and get a new doctor. You gotta. You need a good quality of
life.

june ... are you 17? Or is that just a number like your birthday?

Later,

Pamela neckpain
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 3/16/2009 2:00 AM (GMT -7)   
I have seen some of the best Specialist there are. Because of my liver condition I am limited to the type of meds I can take. Have been to Mayo Clinic, Will be returning next month for my examination and at that time they will be sending me to see another phyciotrist, I take lorazapam for my anxiety attacks. Which I get more often since the last diagnosis. That is a benzodiazapine which is addictive, but less harmful than others. The Dr. I saw the last time is the one who has a problem with that, But as I said they will be sending me to see a different one.

I don't see the need for a psychiotrist. But it is part of the eveluation process for being listed for a transplant. Which I hope will never be necessary.

And No < I am not 17 Wish I were I was a healthy 17 year old. I'm 57,

The only pain med that is less harmful is Oxycodone. Would"nt you know it , that is the only medication I have ever had an alergic reaction to.

Hope to hear good news from you later today. june

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 3/16/2009 2:12 AM (GMT -7)   
Oh except for the carpel tunnel . You have almost all the medical conditions I have. In my opinion , since my liver disorder is cryptogenic. I believe it was due to hepatitis A I had as a child, gallbladder disease, and since I was in such pain when I was working I was really taking mega doses of tylenol and Ibuprofin plus pain meds for my back pain and muscle spasms. We don't have a transplant center in my state so we have to travel to Arizona, every six months . I can have some of the tests done here. But they have to see me for thorough exams regularly.

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/16/2009 6:48 AM (GMT -7)   
I've read that people with chronic pain don't get addicted, June. We never talk
about a diabetic being "addicted" to her insulin. You need to have a doctor who
believes that. You need to have a doctor who is willing to work with you with
your liver conditon AND your chronic pain. I believe it can be done.

I simply cannot imagine not having some of this pain of mine blunted by Opiod
medication. Very strong people like you can make it. Some of us just aren't that
strong. Are you able to get out of bed?

And then on the other hand, I'm not sure my Opiods are doing me that much good
any more.

It's great that you are working with Mayo. I guess that's the best place to go. Just
be sure that they know the extent of your chronic pain. We don't die of chronic pain
but sometimes ...

Pamela :-)

atticbat
New Member


Date Joined Mar 2009
Total Posts : 12
   Posted 3/16/2009 7:03 AM (GMT -7)   
June.
Hi I am also working with Mayo clinic!!
I would make sure they know what kind of pain you are in,
I was working threw Gunderson and they where awful to me!!
Said the pain was all in my head and all I needed was tylenol..

Right..
Mayo has been a blessing to me.
Did all the tests and found out that it really was not in my head but indeed in my spine.
Talk to them about your pain and they will work with you on your pain managment.

I myself could not live without Opiods, I would be in a ball of tears!

Good luck!

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/17/2009 2:37 PM (GMT -7)   
I wish I'd gone to Mayo Clinic when all this first started seven years ago.

Pamela

Atticbat, I'm glad you have medicaton that helps you.

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 3/18/2009 1:25 AM (GMT -7)   
Yes I am able to get out of bed. in fact I over do the work when I can. Today I started off making breakfast, fixing frames for a 93 year old friend. She's amazing she puts us all to shame. Then I took some large area rugs scrubbed and hosed them down. The rug shampooer just wasen't cleaning them well enough any more. Then I went out and did some shopping for *new rugs* and other stuff. By the time I got home I was exausted ,but still had to make dinner. My husband is very understanding we had sandwitches. Did some sewing. washed kitchen ,wash room floor. Now It's 2:15 a.m. and taking a break. My back is killing me so I finally broke down and too a cyclobenzaprine I had there for a couple of years.

My P.C. and other dr. at Mayo are fine with me taking certain meds. It's just the one physco.
but they have scheduled my next appointment with a different.== Live Forever In Chronic Pain===I Don't Think So===Not any More. june

Pamela I never read about your app.

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 3/18/2009 1:34 AM (GMT -7)   
Atticbad'
????? I is all in our heads?????. Also our back,legs,feet,knees, fingers,elbows etc...Some Dr.'s have never had so much as a rash on the palm of their hand.

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/18/2009 1:51 AM (GMT -7)   
June ...

I'm kinda confused about your pain level - it's kinda late and my eyes are crossing.
What's your pain level most of the time? My level is about 7.5 - 8.00 all of the
time. I can't work like you do? I can't do much of anything, in fact.

Maybe my will isn't strong enough? And then there's the horrible thought that
this pain of mine is all in my head. There is some reason why I feel so much
pain and you don't.

I hope you find the right psychiatrist for Depression and Anxiety. Those two I've
had ALL my life. I've had Chronic Pain for seven years. No surgery. My choice.
For you new diagnosis, they will be invaluable. Oh change your doctor!

I did not have the MRI on Monday. Things got all confused and I will have it next
Monday. I'm disappointed. I was all ready today.

Take Care and Don't be a Stranger!
Pamela

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/18/2009 1:53 AM (GMT -7)   
PS

What kind of frames do you fix?

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 3/18/2009 6:41 AM (GMT -7)   
Pamela One thing that was driven into our heads in Nursing school, and especially when I worked on the Onco unit, is that Pain is so subjective, everybody feels and senses it differently, and no one can feel anothers pain, sooooo Pain is what ever the patients says it is! Nothing more, nothing less! Period end of story! Unfortunately there are so many Doctors and Nurses that think they are smarter than the patient, and try telling the patient that they don't or shouldn't feel the pain they feel! In other words they are passing a judgemnt over what the patient is saying, which is wrong and a big NO NO! So don't worry about it being in your head! It is what ever you say it is. PERIOD!

june17, that is my birthday in 1951

White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/18/2009 8:49 AM (GMT -7)   
What you said is very interesting. I'm not totally sure I would believe Chronic
Pain if I didn't have it. Those of us who have doctors who believe us are lucky.

Pain medicine has been kept under lock and key only in recent years. I believe
twenty years ago doctors were more liberal. It seems like now there are so
many people are interested in narcotics to soothe their souls not their pains.

I kind of understand why my son does not "believe" in my pain now. I have
Attention Deficit. That is another malady that takes a doctor who is a "believer"
I took medicine for a couple of years until I got it under control and understood
it. Lucky me, I've had two problems that people don't believe even exists!

It sounds extreme but if my Attention Deficit hadn't been discovered 10 years ago, I
simply could not have gone on any longer.

Pamela

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/18/2009 8:53 AM (GMT -7)   
P.S.

White Beard:
Do they have any theories about why some people feels more pain than others?
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 3/18/2009 2:39 PM (GMT -7)   
Pamela
Pain is being invistigated more now than ever before and they are developing new and better ways of treating it, and a great part of unraveling pain and how it works is understanding the brain and nervous system and how it really works, and they have come along way in doing that, but they have very long way to go!

You know about ten years ago I was told I also had Fibromyalgia, and I was sent down to Barnes in St. Louis, to see a neurologist, I was told he was also a professor at the med school. He told me that he did not believe that there was such a thing as Fibromyalgia, it was a made up diagnoses, and people that were diagnosed with it, if they wanted the pain to go away it would! It was all in there minds! I drove over 5 hours to go to that appointment, and he told me I was making it all up, it was all in my mind! For crying out loud he didn't even look at any of my medical records! I was so mad I walked out on him! A few minutes later he rode down on the same elevator with me, and I told him about my bad disc, and he said well maybe that was causing my pain, but it sure wasn't Fibromyalgia!, and that is what was on the referral! I can't tell you what I wanted to do that guy! I was so mad, and going back home we had an ice storm, and what was a 5 hour trip going there, took over 12 hours going back! Now Fibromyalgia is an accepted diagnoses, but I don't suppose that old Doctor is even around any more!

White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/18/2009 6:42 PM (GMT -7)   
White Beard:

What an icy, freezing storm you went through, man! (More than one way!)

Is Fibromyalgia truly an accepted diagnosis?

Through the years, I've had three (maybe more) suggest that surgery would be the
very worst thing for me. My neck problem is in a bad place - a dangerous place.

about six years ago I went to an Orthopedic Surgeon. He had alllll sorts of ideas
on where to operate. After the surgeries, he would send me next door to rehab
where I could learn to live my life opiod-free. (Whooopie)

"Fibromyalgia is a waste bastket diagnosis," he said. "Doctors just pin that label
on patients because they don't know what else to say. They just don't see where
the problem lies."

Could that be? They always tell me I have Fibromyalgia but I NEVER have any
of the symptoms.... well, a few maybe.

Oh gee, what was I talking about. My mind has flown off on little pink and silver
wings.

My little life has been one long emergency. That would probably go for many of
the old gang in here.

Pamela

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 3/18/2009 7:15 PM (GMT -7)   

Pamela

That is the thing I don't think I have the syptoms of Fibromyalgia either, and when I went down to this doctor I was under the impression I was going down because my back pain due to my herniated disc at T12, But the one Doc had written the consult as Fibromyalgia, triggered by degenerative disc disease with nerve impingement. But this Doc blew me off! But I never thought I had Parkinsons either and after two years that has finally been varified, I don't have it! But they still say there is something else going on besides the bad disc! But no one has been able to say just what! The only thing that keeps popping up fro the Docs is MS, but that has never been confirmed!

As for Fibromyalgia, from what I have been told Medicare recognizes as a legit diagnoses. And that there has been allot of study done on it, and they know allot more about it now than ever before!

You take care of yourself Pamela, I kind of worry about you with your neck!

White Beard


 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/18/2009 7:28 PM (GMT -7)   
White Beard,

What you speak of has always confused me. I have alllllll this stuff wrong with
my back. But when I went to this new internist the other day, I believe he
wrote: Dx. Fibromyalgia.

I suspect that some doctors don't look at our MRI's. No time for that.

Fibromyalgia has all these trigger points in various parts of the body. I don't have
even one. I've also read that people with Fibromyalgia can cause electrical
problems. REALLY.

Hmmm ...would an ice storm be considered an electrical storm? (just kidding)
If you had made a storm that day it would have been torrential rain, thunder,
and lightening so strong and accurate it would have singed that stupid doctors
hair.

I'll try to bring a reference to that electrical thing. Probably have it all wrong.

Pamela
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


coldincanada
New Member


Date Joined Nov 2008
Total Posts : 3
   Posted 3/18/2009 8:39 PM (GMT -7)   
Hey there Pam et al,
Sooooooo, you're finally realizing that Dr's are not Gods! welcome to my world I could have been you, saw a reputable rheumatologist for years, he finally got tired of me when I didn't want to have an invasive surgery done to T8 (they go thru the front to get to the spine..ych) so my osteopath then tells me that most people have herniated discs in their backs, but have not pain involved. Long story short? I tell the guy (ya tell) what I want, the Pain Center which as luck would have it is right here in my home town (city) they import Dr's from all over the world to study at this hospital. Another long story short? after say 8 or so months, they invite me in to talk to their graduating class of Dr's. They use ME as an example of a patient that is not on the usual algorithm of their intake process. Did this discourage me? well a little to be honest. One thing it did that was invaluable was make me realize that I and I alone am in charge of my health/pain. Some Dr's are very dogmatic, run if you find one and there are lots of them. Best relief I have found is homeopath (3 or so years) osteopath (20 yrs?) when in crisis, and ME. I also did some psycho therapy as there is an element of the mind/body connection involved.... did that cure my pain? no way, but it sure helped in alot of other ways (sorting out a very disturbing past). So all to say and this has not been a short story, sorry, and I barely scratched the surface, I use Medical Doctors when I feel the need example: last Sat I started a fever.....by night I needed a Dr, thought it may be pneumonia, it was bronchitis bordering pneumonia...went to hospital, saw a very annoying dogmatic Dr. got an xray and a prescription and went on my sick way. I wouldn't trust homeopathy for something like that (I know some hardcore's would but I'm not hardcore alternative med). It's a constant battle another example?: at pharmacy I ask if they have acidophiles/bifidus? young pharmacist says ???? what??? I then explain to her that without it next week I will need something to cure the yeast infection I will acquire from the antibiotics..... she looked at me like I was speaking another language. So you see....moral of the story, if there is one.

Listen to your body, it's is telling you something, let it guide you, there are many alternative medical routes. Western medicine and our system is only as good as it's parts (Drs) like synergy. There are some fine/outstanding Dr's, here in Canada, if they're really good, they have generally moved to the U.S. leaving us with disgruntled, overworked, underpaid, sullen, angry not such great general Doctors. That is a generalization, but there is alot of truth in it. In the U.S. if I'm not mistaken, if you have a good health insurance plan, the best Dr's are available to you, trick is you have to research to find them. Same holds true here, but the wait can be forever...people die waiting for treatment... really they do. So rather than looking for 'someone' to cure you (I speak to whoever is reading this not only Pam) take matters into your own hands and become your biggest and best advocate. If you hear of some little chinese grandma in a hole in the wall .. try it! try anything! and everything! Lie is short and meant to be lived - Good luck to you and to all here who are trying to find answers!!

20 years mystery pain, but pretty much reads like all the labels on Pamelaneckpain's
Ibuprofen when I need it, tylenol with codeine when that doesn't work, occasional sleeping pill when I really can't sleep. Fish oil pills, vitamin c/ d daily, magnesium/potassium (Mag-K)

Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 3/18/2009 10:24 PM (GMT -7)   
Oh Miss Canada,

What an interesting post.

First of all I'm going to go out TOMORROW to buy Acidolphiles/bifidus. I am always
on antibiotic. So far I've been lucky. But one never knows when the UTI will strike.

It's interesting to me that you speak of homeopathy. When all this pain started
seven years ago, I went to a prestigious teaching school here in California. (Stanford)
The neurosurgeon gave me a full x-ray and told me to go the homeopathy way.
I didn't know what it was and I was unhappy that he didn't tell me more. I just
wanted something to stop the god-awful pain.

I always thought Canada was a wonderland of great doctors. I guess I was mistaken.

It would be very difficult for me to switch over to homeopathy because I've taken
Opiod medication for so long. I believe there's a lot to learn about it too.
My concentration is shot from medication.

However, I will get some fish oil and magnesium/potassium. I already take
Calcium, an excellent Vitamin B complex called Folbee Tabs,and a multi vitamin.

I'd like to know more about it. Can you direct me to a web page ... or just tell
me how much of fish oil and how much of C & D. I know you have to becareful
of D, but you can take all the C you want. You pee it off.

Thank you for the post. I wonder how I would be now if I'd listenedf to that
doctor of long, long ago.

Right off the top of your head, do you think I should have a surgery on my shoulder?
It would be shoulder-fusion surgery I believe. I guess you're not a medic, all I'm
asking is for a wild guess.

Pamela
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.

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