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.

@lifetime

I have been doing a lot of serious thinking, and just feel too guilty because I am bringing all my back pain/doctor problems to this forum.
I will then say good-bye and thank you to all..I just have to defeat my own problems and handle my doctor the best way I can…
But….Thank you again, with all my heart…..

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@gailb, I hope you feel better soon so you can enjoy your new home. @cognac

@lifetime

Every so often, my VA Primary Care doctor will ask me about making an appointment for a pap smear and/or a mammogram. One time, he said to me, "You know, I don't really care if you EVER want me to schedule them. I am PAID as a doctor to SAY I care, but truthfully, I couldn't care less.".
I left there thinking that maybe all doctors secretly feel this way, and maybe my doctor was just being exceptionally truthful to me and I should feel honored.
Perhaps this explains his attitude about my back pain now..???

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@eileena I didn't know that about Kaiser, they do not operate on the east coast. So even if you are with Kaiser you can be covered gong outside of their network?
This was my gripe with my PCP. As a doctor of internal medicine, he should have been able to pick up on the relationship between my problems and put 2 and 2 together with but it took a neurologist to suspect it was my liver, not something neurological that was causing my HE episodes.
I too self-refer, such an advantage when you get on Medicare.
JK

@lifetime

I have been doing a lot of serious thinking, and just feel too guilty because I am bringing all my back pain/doctor problems to this forum.
I will then say good-bye and thank you to all..I just have to defeat my own problems and handle my doctor the best way I can…
But….Thank you again, with all my heart…..

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@gailb Gail, I am so sorry to hear of your back problems. I hope you get relief soon and are back to your usual self. Someone mentioned you being in a new home. Have you moved from one area to another or just a local move?
JK

@lifetime

I have been doing a lot of serious thinking, and just feel too guilty because I am bringing all my back pain/doctor problems to this forum.
I will then say good-bye and thank you to all..I just have to defeat my own problems and handle my doctor the best way I can…
But….Thank you again, with all my heart…..

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I have literally been at the end of my rope. Thank goodness, I received your e-mail!!
For the last few days, I have been completely wrecked..soul, body and mind.
I made an attempt to stand up for myself and my health in regards to my Primary Care Provider at the VA Hospital.
I wrote directly (I live too far away for a visit) to the woman in charge of being an "advocate" for veterans at the hospital.
I asked her if there was any way the VA could make provisions so they could pay for me to see a local Chiropractor, or ANY Chiropractor, for my lower back pain.. I asked for nothing else.
I told her my Primary Care Provider will absolutely NOT give me ANY kind of medication, no treatment, no pain pills,and no muscle relaxers, not even ibuprofen for my severe, unbearable back pain.
I told her my very recent MRI showed bulging and leaking disks and many other things..
I sent the message to her.
It was only a few hours later that I received a reply. She had taken my message directly to my Primary Health Provider and shown him what I had written. He was furious. Beyond furious.
The woman advocate told me I am now being banned from writing any more such messages or trying to see or talk to any other doctor about my back pain.
I was stunned..utterly stunned.
The VA knows they are in total control of my health.
One thing I do know, when I see my Primary Care Doctor next (coming up very soon), he is going to let me have it in the worse possible way.
I am scared to death.
I am sorry.. this is all I know to write.
Living with such excruciating pain..this is no life.
I just will try to keep on, somehow.

@lifetime

I have been doing a lot of serious thinking, and just feel too guilty because I am bringing all my back pain/doctor problems to this forum.
I will then say good-bye and thank you to all..I just have to defeat my own problems and handle my doctor the best way I can…
But….Thank you again, with all my heart…..

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The above message only meant for@gailb. Thank you.

@lifetime

I have been doing a lot of serious thinking, and just feel too guilty because I am bringing all my back pain/doctor problems to this forum.
I will then say good-bye and thank you to all..I just have to defeat my own problems and handle my doctor the best way I can…
But….Thank you again, with all my heart…..

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@lifetime. I’m so sorry and so sad for your being treated this way.  The VA should know better.  The only suggestion I can make is to try Biofreeze until this gets sorted out.  It’s OTC and bout $8.  I have autoimmune arthritis and the roll on version helps me out a lot.  I hope you will find someone else to advocate for you.  To blankly state they are furious and to forbid you to send further emails is ludicrous.  @MaryLou 

@lifetime

I have been doing a lot of serious thinking, and just feel too guilty because I am bringing all my back pain/doctor problems to this forum.
I will then say good-bye and thank you to all..I just have to defeat my own problems and handle my doctor the best way I can…
But….Thank you again, with all my heart…..

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@lifetime. Write to President Trump ,he said he wanted to make the veterans hospitals better. Or Dept. If health

@lifetime

I have been doing a lot of serious thinking, and just feel too guilty because I am bringing all my back pain/doctor problems to this forum.
I will then say good-bye and thank you to all..I just have to defeat my own problems and handle my doctor the best way I can…
But….Thank you again, with all my heart…..

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@lifetime I hope you won't give up, I had and have many problems with the VA. Now I just avoid them as much as possible. With years of experience I can suggest two things: one file a complaint with the VA Inspector General, if that does not help contact you Congressional Representative and/or both of your Senators. All of them have a staff person who does nothing but handle veterans issues. There is also a new program that allows you to go to a private doctor paid for by the VA, it depends on how long it takes to get an appointment and the distance you need to travel. You members of Congress can give you information about it. Also if you are a member of a veterans organization, or even if you are not, contact their national service officer's and ask for assistance. They will help any veteran whether your a member or not, to get the benefits you have earned.
The VA does not like me either, and I have advocated for the closure of most VA medical facilities and have them replaced with a type of veterans insurance, free for disabled veterans and low cost for all others including their families. That way a veteran could go to any doctor near them for assistance. Too many have died trying to get help from the VA, please keep on trying. The VA was restricted on giving pain medicine by act of Congress a couple years ago and now with the new rules coming in January, no one or almost no one will be able to get pain medicine stronger than 90 mg equivalent of morphine that is on Medicare or similar programs. If they follow through with this it will mean many now getting relief with be in nearly unbearable pain, my self included. Good luck I hope you find relief. 19lin

@lifetime

I have been doing a lot of serious thinking, and just feel too guilty because I am bringing all my back pain/doctor problems to this forum.
I will then say good-bye and thank you to all..I just have to defeat my own problems and handle my doctor the best way I can…
But….Thank you again, with all my heart…..

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Oh, my goodness…my heart just breaks for you!! It makes my problems so small!!! I am just so sorry for your situation..I just wish I could help in some way!!
I tried very hard to get local care ok'd for a Private Care physician, but they checked and said I live just a mile or two of being too close, so the answer was no on that. 🙁 It takes an hour and a half to reach the VA hospital from here.
And yes, I wrote my congressman!!! THANK YOU!! THAT is a GREAT idea!! I will share everything I hear from them.
I have stressed to the VA that I am not so much looking for pain medication as I am for treatment (such as with a chiropractor).
I do wish my Primary VA doctor was not so much against ibuprofen (over-the-counter). Or even Tylenol or Aspirin.
I know my Primary Doctor is very angry at me right now, but I had to tell the truth. And I am afraid of him now.
I know that my emotional health has a great deal to do with just how much I can tolerate this back pain.
Before I was a Veteran, my Family Doctor was just the BEST. I had SUCH a horrible shock after the Army when I started going to the VA hospital for any medical treatment.
At first, I had one woman doctor that was just so helpful and caring. But she soon retired, and that is when I got my present Primary Care Doctor.
I am so afraid as the advocate woman told me I should not be talking about ANY of this to ANYONE. The VA has real power. I have a permanent thyroid condition so must take thyroid medication for life. They could just easily cut me off, should they decide to. I also have a very serious heart condition (caused by the Army when I was seriously injured while on active duty) and must take heart medication for life, too. They could easily take it away from me.
I had better go.. just starting to shake a lot.. very scared of retribution by the VA..
BUT THANK YOU SO MUCH FOR LISTENING!!

@lifetime

I have been doing a lot of serious thinking, and just feel too guilty because I am bringing all my back pain/doctor problems to this forum.
I will then say good-bye and thank you to all..I just have to defeat my own problems and handle my doctor the best way I can…
But….Thank you again, with all my heart…..

Jump to this post

@lifetime

I'm so glad you responded to my post. I'm so sorry to hear the response you received from the VA. How frightening it must be to feel that you are being held hostage by your medical team! The important information from @19lin is very encouraging I think.19lin has given you several actions that can help you in your search for respectful treatment from your VA medical team. I am shocked at their reaction to your request for help.

However, I have had a couple of my own run-ins with so-called medical professionals, whose treatment was demeaning and meant to control my behavior in a way that was negative to my health. I was very angry and threatened to sue the two nurses involved in my mistreatment. I also had an issue with my Pain Management doctor when he discouraged me from stopping a medication, Gabapentin, which I had trouble with, and he would not help me withdraw from it. I decided right then to get off all 3 medications he had prescribed for my pain. I called my pharmacist and he helped me with a schedule for stopping each medication. I no longer trusted my Pain doctor and want no further contact with him.

While you are taking the actions recommended by @19lin, I recommend that you find a local doctor who will take you without insurance. If you have a local Veterans Organization, ACLU, even Planned Parenthood or a Legal Aid office in your area, please contact them and ask for a doctor or clinic they can recommend for you for now. I have a feeling that it's important for you to be seen soon by someone, anyone, other than the VA PCP. If you get help from one of the groups I have recommended, please cancel your upcoming appointment with the VA PCP. You don't need to be intimidated and chastised for trying to take care of yourself! You are to be commended for reaching out to find relief from the mistreatment you are receiving and for taking care of yourself! I deeply appreciate your sense of honoring your body and mind by seeking help with this abusive treatment.

Please let me know when you are in touch with a group that will help you with your situation. Let me know how you feel about taking all the steps @19lin recommended, and my recommendations.

GailB
Volunteer Mentor

@lifetime

I have been doing a lot of serious thinking, and just feel too guilty because I am bringing all my back pain/doctor problems to this forum.
I will then say good-bye and thank you to all..I just have to defeat my own problems and handle my doctor the best way I can…
But….Thank you again, with all my heart…..

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Regarding your comment of being too close to the VA hospital, I believe the limit is 40 miles, but I am not sure? They have literature on it at the VA. You sound as if you are eligible for Social Security disability and you should try for this. If a serious condition developed while you were in the military you can apply for disability retirement from the service I believe. Again try contacting one of the national service officers with any veterans organization. I am a member of most veterans groups and the major ones probably have the best service officers such as the American Legion, Disabled American Veterans, etc. There are too many to list them all, but if you call the VA central line they may be able to tell you where they are. You can call toll free at 800-827-1000. It may take awhile to get through, but you can leave your number on a recording and they will call you back.
If you need medicine for a service connected condition, you maybe able to get it from a military medical center if you were given retirement for disability. You have a lot of options, so it is very important for you to get together with someone who can advise you of your possible benefits.
You are correct there are a lot of twists and turns with the VA and the military and it depends on what happened to you, when it happened and if you were properly advised of your rights. Once again I strongly recommend you get in touch with someone who can provide this information. In addition to veteran service officers, there are often state agencies that provide information for veterans and even county agencies depending on where you live and which state you live in? Just look in your phone book under government agencies and see if any are listed for the state or county. Occasionally I see ads on TV about some type of legal help for veterans, I do not know any thing about them, but it maybe worth checking out? If you have a computer try looking up veteran advocates and see if there is something for you.
The sad part is that with all the resources there are for veterans many veterans have very little knowledge about them. Do Not give up, keep trying I am sure some one can help. Also I doubt the VA will cut you off from medication, but even if they did their are other resources out their. While there are a few bad apples in the VA, the great majority of VA staff are good people and will do what they can for you if you ask for their help. One thing I was told and I know works is if you run into a wall, ask the person their what they would recommend you do? If they don't know or won't help ask someone else, perhaps a nurse, aid or clerk will tell you when a doctor says they don't know? The big thing is don't give up until you have knocked on every door. Good Luck. 19lin

Have you considered filing a malpractice suit against that doctor and the VA?

@lifetime

I have been doing a lot of serious thinking, and just feel too guilty because I am bringing all my back pain/doctor problems to this forum.
I will then say good-bye and thank you to all..I just have to defeat my own problems and handle my doctor the best way I can…
But….Thank you again, with all my heart…..

Jump to this post

@lifetime

I just read your latest response to @19lin. It's hard to believe they are trying to prevent you from talking about the problems you are having with the VA. You should at least take Tylenol whether or not your PCP recommends it. Follow the instructions and be sure not to take more than recommended. I can see why he won't recommend Ibuprofen since you have a heart problem. If you have liver issues or drink alcohol on a regular basis, you shouldn't take Tylenol either. Act accordingly.

Other doctors can prescribe your thyroid medicine, and your heart medication. Your doctor can write to the pharmaceutical company that makes your medications and ask for reduced costs for you as a veteran if you can't afford the medication outside the VA system. There are alternatives out there. Also, if you can, think about moving to a new place that is outside the parameters given so you can go to the doctor of your choice. You can still go to the doctor of your choice without their approval, but you may end up paying for it. As I said in my previous post today, talk to the ACLU, Legal Aid, or even get an attorney to help you.

You don't need to fear the VA, because there are alternatives for you. Can you tell us more about your heart problem that you said the army caused? What happened and what is the diagnosis you received, if you're willing to share. Also, what area are you located in? You don't have to give your exact location if you're afraid to, but it might help us to find help for you. Hang in there, things will get better!

Gailb
Volunteer Mentor

@lifetime

I have been doing a lot of serious thinking, and just feel too guilty because I am bringing all my back pain/doctor problems to this forum.
I will then say good-bye and thank you to all..I just have to defeat my own problems and handle my doctor the best way I can…
But….Thank you again, with all my heart…..

Jump to this post

@19lin

Thank you so much for your assistance to @lifetime. It's so helpful and it's important for her to have an advocate who is knowledgeable about the system she's dealing with. My heart is happy knowing you are helping her.

Gailb
Volunteer Mentor

@jakedduck1

@eileena, When you mentioned Kaiser it reminded me of a question my niece asked her best friend, an Obstetrician at Kaiser. She asked “Is Kaiser a good hospital?” Doc said yes, as long as your not sick”

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@jakedduck1

This is Gailb, and I'm a Volunteer Mentor with Mayo Connect. I saw your post about Lyrica and wanted to share some information with you. I was taking Gabapentin for about 5 months, and in my research to get off it I read that it is the precursor to Lyrica. The pharma-ceutical company introduced Lyrica after Neurontin was made generic as Gabapentin. They changed the formula slightly in order to make Lyrica so they could continue to make higher profits from it. I had terrible side effects from Gabapentin including brain fog, and loss of huge chunks of memory. I decided to stop taking it after I had a minor car accident that I know was the result of my brain fog on Gabapentin. My pain doctor insisted that I didn't need to withdraw from it and said I could just stop it cold turkey. I had read enough on Mayo Connect to know that wasn't a good idea. With the help of my pharmacist I did withdraw from it and felt so much better off it. I was taking it for pain, not depression. I wouldn't take Lyrica for depression, and I would change doctors if mine recommended Lyrica or Gabapentin for anything, but especially for depression. I agree with you that they are terrible medications, at least for me. I hope they are helpful for others. Antidepressants are completely different from Lyrica which is for nerve pain.

Gailb
Volunteer Mentor

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