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Chronic pain but seems like the Doctor's are not listening.
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darkstar252 posted:
I have been dealing with back, neck, foot and leg pain since I had my son in 2010. It has gotten to the point where I can't work and can barely take care of my kids. I am depressed and the doctor's are treating me like I am not in much pain. First my family doctor told me it was all in my head but I went to a specialist even though he didn't recommend it and after a year of tests they found out I have plantar fasciatis in both feet, an annular tear in my first lumbar disc and arthritis in my neck. I was also told by the nurse that it was possible that I have fibromyalgia but when I mentioned it to the doctor he said "did you study medicine" so I guess he didn't feel that I had. So now I am going to a second pain clinic (failed injection at the first and they said there is no other treatment they can offer) and they made me feel like this was all in my head. They prescribed gabapentin and mobic. I am willing to give them both a try but I have previously tried these and without success but they said try them together and see how it works out. I am sick of being in pain and having doctors treat me like I am not. I am sick of not being able to take care of my family. I am sick of crying myself to sleep every night because of the pain and because I am scared that one day I won't be able to take it anymore.
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Peter Abaci, MD responded:
It sounds like you want to live life to the fullest but haven't been able to because of the way you have been feeling. One of the potential pitfalls of the more traditional medical approach to pain management is that it has a tendency to focus on each part as opposed to the whole person and the big picture. One of the interesting viewpoints of Eastern medicine is the notion that when a person is sick, then the whole person is affected, mind and body.

The most effective pain management often involves working on improving how the body moves and functions in conjunction with improving the emotional health and well-being of the person in pain. The mind/body connection is important to recognize but it is also something that you can take advantage of to help create the type of progress that you are looking for. Talk to your doctors about other ways that you can get your body more active again including options like physical therapy, tai chi, and walking, and also look for help in treating your depression, perhaps by working with a psychologist who understands chronic pain.

I think you will find that as your body gets more active, that your emotions will also improve, and at the same time, as your depression improves then your pain will, too. While your pain is very real, it is important (but also very challenging) to focus on your goals and to build a plan that will lead you to them in a healthy way.
 
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recoverybug replied to Peter Abaci, MD's response:
Hi Dr.Abaci,
I too am having the same type of problem getting medical attention. I have tried all non-operational treatment, counseling, yoga, water aerobics, walking, even a spinal cord stimulator, everything my insurance will cover, and I am still in too much pain. All I want is to be able to normal things like, shower, wash dishes, go grocery shopping without suffering pain. I am on some pain medication but it is not enough I guess to help. What is a person to do when they can't get across to doctors that they need help, without being accused of being an addict or it's all in your head? To whom do I go to for proper medical attention or make a complaint?
Please don't get me wrong, I am not mad just frustrated. I am not a lazy person. I use to work when I was in pain or even sick because I have that much drive or will in me. I can't fight anymore because of my pain. I just don't think it is right for anyone to have to live with so much pain. I am only 49 and could still have some kind of life if, it weren't for my pain. I hope you understand what I am saying and asking.
Thank you so much for your time.
Sincerely, Terri Young
 
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An_248590 replied to recoverybug's response:
Terri,
I am in the same situation and feel the same as you. Dr.Abaci I'm afraid can't or won't answer that question. Remember he is a dr also, and with the federal gov't, cracking down on reputable people and dr's, the one's who are in dire need for help, are the ones that are still suffering.

Most people and dr's have not experienced the day to day pain and depression we feel.

I don't think he will give us a understanding or medical advice that we seek.
 
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Anon_10089 replied to An_248590's response:
I think it really gets down to finding the right doctor and being your own advocate. Something that can help convey your pain to a doctor is to keep a pain journal. Write down the level of pain you're in, what you try to do to help it and how much that helps, and what the pain is keeping you from doing. Also record things like sleep quality/duration. Record what you feel like your quality of life is. For example, does the pain keep you from social event? Grocery shopping? etc.

Finding doctors can be hard. I kind of "lucked out" with mine. But maybe find a local support group and get referrals from people there.

If a doctor acts like they don't want to listen to your opinions about your own body, end the appointment right then.

Whenever I see my doctor, I write down what my problems are, what I think some solutions are, and what I'm trying to do. It's good for doctors to see that you're trying other methods to help your own pain. If there are meds you researched and want to try, bring that up.

People deserve to have their pain treated. Go into the appointment knowing that often chronic pain cannot be cured, but it can be treated. People have a right to have quality of life.
 
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Peter Abaci, MD replied to recoverybug's response:
Hi Terri,

I'm sorry that you have been so frustrated. It sounds like you have worked really hard at managing this problem, One thing that I sometimes remind my patients is that unfortunately modern medicine and doctors don't know everything. We often wish that we could do more to help our patients, but science has a long ways to go to better understand chronic pain and how to do a better job treating it.

One approach that could help you communicate with your doctors is to focus on some of the goals that you have. For example, you mentioned activities like grocery shopping and showering that are difficult to perform right now. Perhaps you and your providers can come up with a list of important goals that can help improve quality of life factors and diminish the impact that the pain is having in your daily activities. Sometimes we need to start with small steps to get to where we want to go, but they truly will add up for you in the long run.
 
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recoverybug replied to Peter Abaci, MD's response:
Thank you Dr. Abaci. I appreciate you getting back to me. I am sorry if I made you uncomfortable or put you on the spot. I did not mean to do that.
I am going to take all the advice and do my best to write things down in more detail. I feel I have done this so many times but, different words to different doctors might just help more than I think. I am just very discouraged right now.
You have given me an idea of how I might better explain, or give more detail to explain the life I feel I should be able to live. ( I hope that made sense. lol! )
Thank you for your concern and for all that you do as a doctor to help everyone. God bless!
Sincerely, Terri
 
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recoverybug replied to Anon_10089's response:
Thank you so much for your response. I have written many things down before but, maybe if I go into even more detail that might help my doctor to get a better understanding. Like I said, I know I will never be completely out of pain, I just want to be able to do normal things without suffering. Right now I spend most of my days in bed.
Again, thank you for the advice and your concern.
 
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metta responded:
The doctors are not listening, You are receiving conservative management. I refer to this as contempt prior to investigation. They are hoping you will just go away, or can be deemed nuts, or just drug seeking.This is also referred to as under diagnosis, if they don't diagnose it, then they don't have to pay for expensive testing or treatment. And they can't easily be sued either! They WILL drag it out, Be certain that ALL definitive testing is done. Insist on it. If they refuse ask them for something in writing explaining why the testing that you are requesting is not prudent. MD's will label you with fibro, until you are nearly dead w/ a collapsed spine or some other catastrophic event. Then you lose your coverage, which only to their advantage, and you are on the federal rolls. Managed care is for the well, not the sick, disability is for the sick, do not be deceived, your primary care physician is a gatekeeper to keep healthcare costs down, Read scholarly journals about bedside rationing, it is happening and it is commonplace, wishing you the very best of luck.
 
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ctbeth replied to metta's response:
Metta,
I like that: Under diagnosis. Very well put and appropriate to many.
 
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darkstar252 replied to metta's response:
That is exactly what it feels like Underdiagnosed. The doctor I went to for a 2nd opinion never even looked at the mri of my lower spine and they won't order one for my neck and upper back. Then they told me to stop taking the gabapentin because I became more depressed and did not prescribe anything else. I am supposed to go to occupational, physical and regular therapy but had to wait over a month for appts at the facility they recommended and I can't afford it not to mention getting out of my house without something for pain just usually doesn't work out for me. I just can't seem to complain enough they just don't want to listen. I just can't see how pain management centers can get away with treating patients like this.
 
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annette030 replied to darkstar252's response:
All I can suggest is to take another person with you, an adult to take notes conspicuously. Unfortunately, doctors seem to do better at listening if you have someone with you. A witness, if you will.

Take care, Annette
 
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metta replied to ctbeth's response:
We have a deluge of medical providers who are conveniently looking the other way, blatantly ignoring symptoms, minimizing the patient's complaints, until you literally can no longer make it to work, which only serves the managed care organizations that the physicians work for! They have an employer to placate, people!!!! Wake up America!!! If they can diagnose it as "non specific pain", they will, this relieves them of a lot of responsibility, and liability!!!!! Non- specific pain means we don't really know, but you can't back that up if you have failed to the testing!!!! This diagnosis may be prudent in some cases, for a small period of time, but CERTAINLY NOT ONGOING and just ridiculous numbers!!!! THEY WILL ABSOLUTELY PUSH BACK ON DEFINITIVE TESTING TO SAVE HEALTHCARE DOLLARS... IT IS CONTEMPT PRIOR TO INVESTIGATION WITH NO BASIS!!!!!! It's just cheaper to prescribe a pill, any pill, several pills, over medicate, under medicate, and just see....see if they can wait it out.. to see if it "just gets better", that's great, it is certainly to their advantaqe in terms of healthcare dollars spent....... if you die trying, oh well, we'll just see your chronically sick behind in court, isn't that right, physicians? If you lose your job, your home, your family, oh well!! See you in disability court several years from now and we are not going to sign off on that paperwork either, right physicians? Certainly, Taking someone with you to a doctor's appointment is very important, in fact imperative, it changes the whole dynamics, and holds the physician just a little more accountable for dismissing your requests for care. At least, your family or friends will actually witness the horrifying, inhumane, greedy and intolerable behavior that is going on in managed care. Here is a site that gives information on covert rationing. http://heartdisease.about.com/cs/starthere/a/hcs01.htm For those of us with neck, back, and chronic pain issues, recognize you are an expensive liability to the system, simple as that. Multiply everyone who has neck and back problems, and I promise you numbers for testing, much less surgery, are more than any insurance company could or even would want to pay. What are the physicians to do, really? They are being put between a rock and hard place to, Realize this has to do with Corporate America and minimizing the cost of RISK. You are a financial risk, folks! Don't get your feelings hurt, don't be intimidated, get real, get ready to fight for yourselves, get ready to advocate for others, this is healthcare reform. It's like going to court when you visit the doctor. Have your records, present your case, the only thing that matters to them....is how much documentation there is to support your claim that you need care, or that makes him look completely negligible. You are going to have to prove that you need the care. The physician does not feel the need prove anything on your behalf!!!! Sending each of you blessings and goodwill, but seriously warning you to wake up from the dream that your GP is your advocate. That illusion is long past, people!!! YOU are your advocate. Get educated, get the testing, get the referral you need, better yet, opt for insurance that does not require a referral, if possible, get involved, get proactive, fight back politically, our healthcare system is being usurped by corporate America, hence healthcare reform!!!!
 
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peskypain replied to metta's response:
While just like in everything in life...there are bad apples out there...I just don't find or see that most Drs. are this way. Just like there are patients out there who want to just have their Dr. give them meds and won't do anything to help themselves.

I just don't see this as the norm on either side.

Most Drs. want to HELP their patients. They WANT them to ge tbetter...and it frustrates them just as much when they can't find the answers...

I certainly agree that writing things down, taking someone with us, and doing all we can to participate in our own care is very important.

This is not the place to get political...this is a board to empathize and help those in chronic pain..

On our end...we can't ignore that opiate abuse and death is an actual epidemic. Prescription drugs are the leading cause of accidental death. So, we must be very careful about what we take...mixing it with other meds or alcohol, and following the prescriptions perfectly.

As well as recognizing that medication is just one small piece of the puzzle in treating chronic pain. Most Drs. think that a 5 of so on the pain scale is a good level for those of us with CP. This is with using every possible modality.

From daily exercise, yoga/stretching, aqua therapy, physical therapy, traction, massage, acupuncture, TENS unit, counseling, injections, steroids, NSAIDS, ice, heat, nerve ablation, a nerve pain medication if needed, a muscle relaxer if needed, and even an antidepressant as needed, cognitive behavioral therapy, eating well, maintaining a healthy weight, not smoking...etc.

It's important to find a Dr. who will come up with the best comprehensive plan to help us with our pain and wants us to be a partner with them in doing so.

As I mentioned...there are sometimes just no easy fixes for someone's health issues. It takes time, effort, and trial and error to figure out what is going on and what is the best overall treatment.
 
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PetuniaPea replied to metta's response:
Agree with every word you've said, metta.

I'm a veteran who has a 10% disability (my foot) and get free medical care thru the VA. Oh my God, but that's socialism! Gasp!

I've had all good experiences except one, which I describe below. My chronic left foot pain (tarsal tunnel syndrome/flat feet) was helped greatly when they ordered custom-made orthotics (which I need for life...I get a new pair every year...they're highly expensive, which is why I know that the VA doesn't skimp when it comes to patient's health). I asked if I could be referred to the VA chiropractor for my chronic neck pain, and my doctor (now retired) referred me not only to them, but to physical therapy as well.

I did have a bad doctor, who I "fired" after a year or two of seeing her. She didn't want to keep referring me to the VA chiropractor, which I said helped me greatly since I didn't want to take medication. She didn't want to test my Vitamin D levels when I asked her if she could. She made a few other mistakes which sent me on a wild goose chase, wasting my gasoline and time, and she even reeked of cigarette smoke one time. I felt that maybe she gets some kind of bonus for keeping costs down or something. Never experienced that ever in the VA Healthcare system. I asked for another doctor, and she's waaay better--has no issue with me seeing the chiropractor and insisted I get a Vitamin D test!

My advice to everyone in pain who is suffering and having issues with thier doctors:

1. See if your insurance has a patient advocate who will fight for you. When I had my bad experience with that doctor, someone suggested I talk to a patient advocate. Again, this was with the VA Healthcare system, I don't really know the ins and outs of greedy insurance companies, whether they provide those things.

2. Get a second opinon, third opinion, fourth opinion! Whatever it takes. Don't give up. That's what they want you to do.

3. "Fire" your doctor. I never told the administrative office about my terrible doctor...I just explained that I lived closer to this other clinic, can I change doctors for my convienience. But the end result was I fired the doctor who did not understand me, and I was put with a better one (anyone was better than her!)

4. Go to your local library and check out health and wellness fooks for free! You can find a lot of useful information! I did! Look for books about managing pain naturally, foods and supplements to take, stretching exercises (yoga, tai chi books), books that focus on reducing inflammation by incorporating more Omega 3s from foods.

5. Try a reputable chiropractic clinic that focuses on stretching and self-care. I would love to be able to afford massage, but try seeing a massage therapist every so often! (A cheap at-home massage that I do is to take a tennis ball and lay on it and move, or sit up against the wall with a tennis ball in between).

6. Don't rely solely on conventional, Western medicine! I was prescribed 1,000mg of Naproxen daily for long-term until the side effects became unbearable! I quit and have never taken another pain pill since! I realized that I was in more pain taking the Naproxen! Drugs are toxic to the body. Plus, they mask the pain so that you may end up doing too much (overexerting, etc), which in turn damages your body even more.

7. Don't underestimate the power of your diet. Sugar and caffiene sent my pain through the roof. I was miserable and depressed, couldn't do simple things like wash the dishes. Since improving my diet, my pain levels have reduced to a tolerable level.
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