Chronic Back Pain for Years

Posted by jlfisher56 @jlfisher56, May 2, 2017

6 back surgeries (extensive cervical and lumbar fusions) with neurological complications. Left with chronic pain. Accident happened in Nursing career 1992 and worked with first fusions until 1999 (failed fusions). At my age, and as a former nurse educator, I never wanted to had to rely on medication/s for the severe pain. Having thoroughly exhausted exploring sites using non-pharmaceutical methods, using psychological methods, biofeedback, trying to accept my limitations, i.e., I still believe somewhere…out there…is hope. The strong medicine has caused gastroparesis, further complicating my health problems. They are too numerous to write and I will not focus on them. I am looking for “help” and guidance. If I can be of assistance to anyone throughout their trials, (perhaps similar to some of what I have gone through), I will.

@grandmar

@living_strong
Good Morning!
It is always good to get an extra opinion. May I ask why you are going to your 4th doctor?
I am a little confused. Just because your doctor did a hysterectomy and they can't find anything, they are saying your issue is religion? Sorry, that does not make sense to me, unless I just don't understand.
I have a BIG problem when a doctor writes off a problem when they can't 'find anything.'
There are so many tests that the doctor can take.
Good luck!
Hope you are pain free today!
Ronnie (GRANDMAr)

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@grandmar
I have been to a 2 GYNs because other doctors would not have anything to do with me until the female reproductive parts were checked out and cleared. The 1st doctor was the one who monitored me during an extremely difficult and life threatening pre & post pregnancy. Once I was better than before he said all is well and nothing more can be done.

The 2nd doctor was also a GYN who could not find anything. Since I was cleared by one doctor and he couldn't find anything, he started to question me as if I was a person seeking prescription pain medicine. He didn't seem to take into account that I had 3 D&C procedures in 2 months and it was several months post pregnancy. He gave me progesterone pills and said give it 3 more months to see if it helps.

It was the now retired nurse of my primary care physician who requested a referral for me to go to a 3rd doctor. The 3rd doctor is an Oncologist for women. He agreed to to exploratory surgery to get me off the "female issue band-wagon" so I could get seen by other medical specialist. It was after this surgery he admittedly told me that he too did not believe me until he seen that my uterus was not normal. Since, it wasn't normal he agreed to perform a hysterectomy with the comment that it could help. Since the source hasn't been identified for certain he said that it may not eliminate the pain.

Returning to my primary care doctor (whom we love and credit him to life saving responses for my husband) I was giving a clean bill of health and said that only so much can be done then it is up to the Lord. Granted I believe in God, but I also know that letting things sit and relying on religion is rarely an option.

I called 2 Pain Specialist Physician clinics and have been turned down because they do not explore pain sources or treat pelvic pain. They don't seem to think that maybe something in the back or elsewhere could cause the pelvic pain. It seems the work "pelvic" scares physicians away from females who suffer at various pain levels.

I have found an Internal Medicine clinic that I am going to meet with next week for a consultation. They know I am at a loss and am seeking answers. This could turn out to be a money pit. I have another clinic I am in contact with that is in a different state that I will attempt if the Internal Medicine place doesn't help.

Liked by grandmaR

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@living_strong Telling you something that I have found important. I, too, have a faith base, and religious practice has been a big part of my life. Done many things with these 78.5 years. Pastor, truck driver, computer programmer, Real Estate loan and grant manager, football player, coach and official, teacher, restaurant bus boy, mechanic, professional student, seminar leader, etc. But I found my answer to my own disease, Hereditary Gelsolin Amyloidosis, in what I learned to do. I take care of the details of my health as best I can. After visiting 60-70 MDs, I started writing up my own story, which anyone can get free at httpjs://bit.Ly/1w7j4j8 under "Amyloid and Old Karl". But it was at that point I realized that the doctors I was seeing never looked at any of my records from their own labs. Mayo, OHSU, … any of them. So I started searching by going back and re-reading my old lab reports, writing down summaries of them, and doing a lot of thinking about what was happening in my life. And I found some sources of terrific material. I bought "Amyloidosis – Diagnosis and Treatment" by the Mayo- Rochester staff, bought it from Amazon as an E-book. And a bunch of other stuff I got free from Helsinki University Hospital, and NIH and other places. As I went along I found a few kernels here and there, and put them in an orderly stack. And guess what? Because there are so many forms of Amyloidosis, I may not have the final exact diagnosis identified, but I know in my gut I am very, very close. And I know a heck of a lot more about what is wrong in my body than do most of the doctors I see. Medicare will not accept my diagnosis, but they were not accepting the others, anyway. Now, I do not expect that I know what your body is doing, but in many ways it sounds like mine. But you might look at my stuff and see if you can get some ideas. And, as a next resort, try the NIH Undiagnosed Disease program. All you need is a doctor whom you trust and will actually write a letter to them to get you into the program. I just lost a Clinical Trial I needed because my doctor was too lazy to write a letter saying only "I suspect Karl has Amyloidosis." )*&^%^$

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@grandmar

@hosta
Good Morning,
I don't know when you had your surgery or when you will have it.
In any case, praying for a positive outcome.
Ronnie (GRANDMAr)

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My hysterectomy was at the beginning of May'18. It was a year of dealing with this pain. Some months I don't count as a result of healing from pregnancy & delivery from May'17. I have never been one to have postpartum and I don't think pain a symptom. The pain gradually worsen, improved after the hysterectomy, never completely left, and seems to becoming more of a issue with time. It gradually increase and has random peaks that doesn't make sense. Thank you for the prayers.

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@grandmar

@gingerw
Good Morning!
Just as we investigate and research doctors, we should do the same with hospitals.
Hospitals are rated, too.
If you find a doctor you like, they will also provide the hospital the doctor is associated with.
Don't assume that just because you know the name of a hospital, that it is good.
Many hospitals have areas they specialize in, just like doctors.
Good Luck!
Here's to a pain free day!
Ronnie (GRANDMAr)

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@grandmar good morning how are you feeling? Ive been thinking of you and wondering ,please keep us informed of your progress since your x-lift Linda

Liked by grandmaR

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@living_strong

@ Justin McClanahan
Yes, I am planning to go to a 4th doctor. Since my pelvic area also has unexplainable pains it has been chalked up as a female issue. Now that I have had a hysterectomy, the new response is religion base. I do believe in God but know sitting back a waiting for a miracle isn't helpful.

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@living_strong I never heard of something blamed on religion I suggest you start over with new Dr,s or if a Mayo Clinic is near you go there if you can ,good luck

Liked by living_strong

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@oldkarl

@living_strong Telling you something that I have found important. I, too, have a faith base, and religious practice has been a big part of my life. Done many things with these 78.5 years. Pastor, truck driver, computer programmer, Real Estate loan and grant manager, football player, coach and official, teacher, restaurant bus boy, mechanic, professional student, seminar leader, etc. But I found my answer to my own disease, Hereditary Gelsolin Amyloidosis, in what I learned to do. I take care of the details of my health as best I can. After visiting 60-70 MDs, I started writing up my own story, which anyone can get free at httpjs://bit.Ly/1w7j4j8 under "Amyloid and Old Karl". But it was at that point I realized that the doctors I was seeing never looked at any of my records from their own labs. Mayo, OHSU, … any of them. So I started searching by going back and re-reading my old lab reports, writing down summaries of them, and doing a lot of thinking about what was happening in my life. And I found some sources of terrific material. I bought "Amyloidosis – Diagnosis and Treatment" by the Mayo- Rochester staff, bought it from Amazon as an E-book. And a bunch of other stuff I got free from Helsinki University Hospital, and NIH and other places. As I went along I found a few kernels here and there, and put them in an orderly stack. And guess what? Because there are so many forms of Amyloidosis, I may not have the final exact diagnosis identified, but I know in my gut I am very, very close. And I know a heck of a lot more about what is wrong in my body than do most of the doctors I see. Medicare will not accept my diagnosis, but they were not accepting the others, anyway. Now, I do not expect that I know what your body is doing, but in many ways it sounds like mine. But you might look at my stuff and see if you can get some ideas. And, as a next resort, try the NIH Undiagnosed Disease program. All you need is a doctor whom you trust and will actually write a letter to them to get you into the program. I just lost a Clinical Trial I needed because my doctor was too lazy to write a letter saying only "I suspect Karl has Amyloidosis." )*&^%^$

Jump to this post

@oldkarl
Thank you for sharing. I too wrote couple of books however it was not medical. It was faith base and belief God which got us through the most troublesome times in our lives. Believing in God doesn't change life. It provide the peace God provides as we journey through life.

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@lioness

@grandmar good morning how are you feeling? Ive been thinking of you and wondering ,please keep us informed of your progress since your x-lift Linda

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I will do that. I am feeling good or about the same. I am very active in that I am full time career professional, a mother of 3, and packed schedule. Thank you @lioness.

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@living_strong

I will do that. I am feeling good or about the same. I am very active in that I am full time career professional, a mother of 3, and packed schedule. Thank you @lioness.

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living strong. Your welcome best wishes for you let me know how your We care here on this site ,we all need to be our own advocate as we know our bodies more then anyone else so take care Linda

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@lioness

@grandmar good morning how are you feeling? Ive been thinking of you and wondering ,please keep us informed of your progress since your x-lift Linda

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@lioness

Hello!
Thank you for thinking of me.
I am making slow progress.
The right leg, where he did not cut, is making the most progress.
I can walk with minimal pain.
As for the left side, I cannot say the same thing! The pain in my thigh is killing me.
It is usually worse at night, when I have to take a pain pill or the pain will keep me up.
I also have burning in my mouth (tongue, throat and inside my cheeks)
It is raining so I cannot get outside to 'walk.'
That is if you can call it that.
I need a walker to support me.
I can't walk far but it's further than it used to be. Yippeeee!

Soom I will be going for my 2 week check up. I will know more about things by then.

Have an enjoyable weekend!
Ronnie (GRANDMAr)

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@grandmar

@lioness

Hello!
Thank you for thinking of me.
I am making slow progress.
The right leg, where he did not cut, is making the most progress.
I can walk with minimal pain.
As for the left side, I cannot say the same thing! The pain in my thigh is killing me.
It is usually worse at night, when I have to take a pain pill or the pain will keep me up.
I also have burning in my mouth (tongue, throat and inside my cheeks)
It is raining so I cannot get outside to 'walk.'
That is if you can call it that.
I need a walker to support me.
I can't walk far but it's further than it used to be. Yippeeee!

Soom I will be going for my 2 week check up. I will know more about things by then.

Have an enjoyable weekend!
Ronnie (GRANDMAr)

Jump to this post

I truly hope you are feeling better soon. @cognac

REPLY
@grandmar

@lioness

Hello!
Thank you for thinking of me.
I am making slow progress.
The right leg, where he did not cut, is making the most progress.
I can walk with minimal pain.
As for the left side, I cannot say the same thing! The pain in my thigh is killing me.
It is usually worse at night, when I have to take a pain pill or the pain will keep me up.
I also have burning in my mouth (tongue, throat and inside my cheeks)
It is raining so I cannot get outside to 'walk.'
That is if you can call it that.
I need a walker to support me.
I can't walk far but it's further than it used to be. Yippeeee!

Soom I will be going for my 2 week check up. I will know more about things by then.

Have an enjoyable weekend!
Ronnie (GRANDMAr)

Jump to this post

@grandmar Ronnie:

I'm glad to hear that you are making progress.

Liked by lioness

REPLY
@grandmar

@lioness

Hello!
Thank you for thinking of me.
I am making slow progress.
The right leg, where he did not cut, is making the most progress.
I can walk with minimal pain.
As for the left side, I cannot say the same thing! The pain in my thigh is killing me.
It is usually worse at night, when I have to take a pain pill or the pain will keep me up.
I also have burning in my mouth (tongue, throat and inside my cheeks)
It is raining so I cannot get outside to 'walk.'
That is if you can call it that.
I need a walker to support me.
I can't walk far but it's further than it used to be. Yippeeee!

Soom I will be going for my 2 week check up. I will know more about things by then.

Have an enjoyable weekend!
Ronnie (GRANDMAr)

Jump to this post

GrandmaR Ronnie thats great to hear if you need a walker tell your Dr medicare bought m ine through Dr.I have a seat on it look for one of those you may not need it now but in further like me

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@lioness
Thank you for the suggestion, but the doctor ordered one and I had it before I left the hospital.
Ronnie

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I have ALOT PROBLEMS WITH MY LOWER BACK AND LEFT LEG ……BUT WHAT I WANT TO WRITE ABOUT IS THE PROBLEM IM HAVING IN MY NECK .I WAKE ONE MORNING ABOUT 3 WEEKS AGO WITH A KINK ON MY LEFT SIDE OF MY NECK AND COULDNT TURN MY HEAD …THAT HAD HAPPENED TO ME A FEW TIMES BEFORE I JUST THOUGHT OK I SLEPT WRONG AND IN A COUPLE OF DAYS ID BE OK….AND I WAS …EXCEPT FOR THIS LAST TIME ….TWO DAYS AFTER I THOUGHT IT WAS A KINK IN MY NECK ….MY WHOLE ARM STARTED HURTING FROM MY SHOULDER MY SHOULDER BLADE MY BICEP FOREARM ALL THE WAY TO MY FINGERS…..I HAVENT RECIEVED TREATMENT FROM A ORTHO DR BUT MY PRIMARY DR GAVE ME PAIN MEDICATION WHICH DOES NOTHING FOR THE PAIN THAT IS WHY IM AWAKE AT 4AM PAINS WAKES ME OUT OF MY SLEEP …..IM SORRY ..BACK TO WHAT IS REALLY WORRYING ME IS THAT IF NOTHING ELSE WORKS BECAUSE MY DR IS PRETTY SURE ITS A PINCHED NERVE SO IM IN THE PROCESS OF SEEING AN PLORTHOPEDIC DR….LAST THING I WANT IS ANY SURGERIES …..IM REALLY SCARED AND ALSO IN ALOT OF PAIN GOING BACK TO SEE MY DR PAIN PILLS I WAS PRESCIBED ARE NOT DOING ANYTHING FOR MY PAIN….IT SUCKS SO MUCH HAVING CHRONIC PAIN ….IT LIMITS YOUR LIFE IN SO MANY WAYS …..THE WAY I FEEL NOW I DIDNT EXPECT TO FEEL ALL THIS PAIN TIL WAY AFTER MY 80S…
I WANT TO SAY I KNOW WHAT YOU GUYS ARE GOING THRU ..MY LIFE HAS CHANGED COMPLETELY…..

Liked by grandmaR

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@isabelr

I have ALOT PROBLEMS WITH MY LOWER BACK AND LEFT LEG ……BUT WHAT I WANT TO WRITE ABOUT IS THE PROBLEM IM HAVING IN MY NECK .I WAKE ONE MORNING ABOUT 3 WEEKS AGO WITH A KINK ON MY LEFT SIDE OF MY NECK AND COULDNT TURN MY HEAD …THAT HAD HAPPENED TO ME A FEW TIMES BEFORE I JUST THOUGHT OK I SLEPT WRONG AND IN A COUPLE OF DAYS ID BE OK….AND I WAS …EXCEPT FOR THIS LAST TIME ….TWO DAYS AFTER I THOUGHT IT WAS A KINK IN MY NECK ….MY WHOLE ARM STARTED HURTING FROM MY SHOULDER MY SHOULDER BLADE MY BICEP FOREARM ALL THE WAY TO MY FINGERS…..I HAVENT RECIEVED TREATMENT FROM A ORTHO DR BUT MY PRIMARY DR GAVE ME PAIN MEDICATION WHICH DOES NOTHING FOR THE PAIN THAT IS WHY IM AWAKE AT 4AM PAINS WAKES ME OUT OF MY SLEEP …..IM SORRY ..BACK TO WHAT IS REALLY WORRYING ME IS THAT IF NOTHING ELSE WORKS BECAUSE MY DR IS PRETTY SURE ITS A PINCHED NERVE SO IM IN THE PROCESS OF SEEING AN PLORTHOPEDIC DR….LAST THING I WANT IS ANY SURGERIES …..IM REALLY SCARED AND ALSO IN ALOT OF PAIN GOING BACK TO SEE MY DR PAIN PILLS I WAS PRESCIBED ARE NOT DOING ANYTHING FOR MY PAIN….IT SUCKS SO MUCH HAVING CHRONIC PAIN ….IT LIMITS YOUR LIFE IN SO MANY WAYS …..THE WAY I FEEL NOW I DIDNT EXPECT TO FEEL ALL THIS PAIN TIL WAY AFTER MY 80S…
I WANT TO SAY I KNOW WHAT YOU GUYS ARE GOING THRU ..MY LIFE HAS CHANGED COMPLETELY…..

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Have you thought it could be your heart. See a Dr soo

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