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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@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

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@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

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

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@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

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@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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@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

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@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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@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 knew you would find help HERE!!!

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@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

Thanks for everyone's concerns about my back. I'm doing OK with my back and saw my ART practitioner yesterday. I'm feeling better this evening and I see my ART guy again on Monday. I've been in bed all day today. I'll let you know how I'm doing on Monday.

@contentandwell, yes we did move to a new home. It's only a couple of miles from our previous house. It's beautiful and has a very nice swimming pool and jacuzzi, which I hope to be able to use tomorrow or Monday. I hope this is the last time we have to move, until it's to my final resting place. ;-D

Gailb
Volunteer Mentor

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@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 when you said he was furious, my immediate assumption was because your PCP was not being helpfu. I hope your visit with him will not be as bad as you are anticipating. I wish I could offer advice on what to do but I too am perplexed by this lack of attention to your problems.
JK

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@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

@gailb Hi Gail;…..I am so glad you found out about ART also. and found a great one. Over 10 years ago I found a chiropractor also that knows ART. At first she was 10 miles away, then decided to only have ono office close to her home and that turned out to be a 70 mile round trip for me. Then I moved and even though she is nowt about 160 miles round trip I did initially make that trip. But I was fortunate to find one very close to my new home and that is only about 3 miles away. And even though he does things a little different, he does help me. But because of my recent accident with my scooter, I have not been able to get to him. IN addition the scooter took a big chunk out of me leg, and one of the things he does differently is that while he manipulates my back someone else moves my leg. He explained that that moving is the "Active" in the Active Release name of the system. But where they hold me leg is exactly where the scooter took the bite out of my leg, and can't tolerate anything touching that part of my leg. The first Dr. didn't need to move my leg at all! But she was incredible AND he does help me also for which I am grateful. And he does personally know my regular physical therapist! If you don't mind, can you tell me if your ART Dr. moves your leg? Just curious! @ gailfaith

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@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

@gailfaith

I'm so happy to hear that ART has been helpful for you as well. Yes, my ART practitioner does move my leg, or arm or other part of my body on which he is working. The only place they haven't asked me to move while working is on my hand and thumb are,which he just worked on last Friday for the first time. If you Google ART, and read about it, you'll find that the movement of your limbs is an important part of the treatment. My chiropractor also uses Laser treatments to warm my muscles before he works on me.

One thing I'm thinking is that you might want to check with your chiropractor to see if he can help you under your circumstances. He may be able to modify his techniques to accommodate your injuries. I'm so sorry that you've had this accident and such a large injury. Please stay in touch and let me know how you're doing.

Gailb
Volunteer Mentor

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@jakedduck1

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

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In response to your earlier reply, I am not taking Lyrica. I take Duloxetine (Cymbalta) for fibromyalgia and pain-not depression. It has somewhat, but there are days (right now at 3:00 am) that the pain is very severe. Due to my kidney transplant, the only thing I can take for pain is Tylenol. Not very effective.

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